Mommy guilt

September 27th, 2011 § 9 comments

September 29, 2010

Most of you probably read the title of this post and thought I was going to write about the guilt we may feel as parents over the course of our children’s lives when we can’t be there for every event they want us to attend or say no to things we know they might want to do.

But that’s not what I mean by “Mommy guilt.” Instead, it’s the feeling I have today because my mother is coming to visit.

I feel guilty because I have a mother who’s alive and many people I know do not.

I commented on Twitter this morning that my mother was coming for a few days. Author and friend Katie Rosman tweeted back “jealous.” Katie and I actually met because of the moving book she wrote about her own mother’s death five years ago, If You Knew Suzy. I wrote a blogpost about that book; in it I shared personal feelings about having cancer and what my legacy might be for my children.

But there was more.

Katie’s mom is dead. So is my husband’s mother. So are the mothers of many of my friends. And as I go through middle age this will happen more and more. And someday it will happen to me.

Every time I drive the fifteen minutes to the Amtrak station to pick Mom up (when she and my father don’t arrive by car here together) I think about the night I drove to get her at the train station the first time she came to visit after Barbara died.

When I saw my mother step off the train that night last year I almost had to look the other way: it was like looking at the sun.

The sight of her was
so bright,
so intense,
so welcome,
so wonderful,
that I almost had to look away for a moment.

The guilt over being able to see her step off that train and into my arms again overwhelmed me.

And so, today, when I see her again, I will hold her, kiss her, hug her. I’ll hug her for an extra moment and think to myself: this is for all of you. This is for all of you who have lost your moms and can’t do this simple act anymore. A way I can honor her and you is to appreciate these times we have together because I know there are so many who would give anything to have one of these moments with their mom again.1

  1. I should say that it’s not true guilt of course, it’s not my fault that my mother is alive while others are not. But especially in the months right after Barbara died I did have feelings that it was unfair, that I was so lucky. I wrote a piece about the difference between guilt and regret, and perhaps I should have re-written this one with different language. But I decided to keep it true to what I wrote at the time, for better or worse. []

The threadbare shawl (Missing Sara and Barbara)

September 16th, 2011 § 7 comments

September 16 is the anniversary of the death of two women I loved: my paternal grandmother, Sara, and my mother-in-law, Barbara.

Bubbe (Yiddish for “grandmother”)  died in her 80s, many years ago, after her health had begun to fail. She lived in Israel, and I did not have the opportunity to see her one last time before her death. In stark contrast, Barbara died only weeks after I last saw her, laughed with her, attended a family wedding with her. We had no earthly idea she would be killed in a car crash, of course, no time to prepare ourselves for hearing the words that rocked our world.

It was Open House at my children’s elementary school that night, and when the phone rang I didn’t recognize the voice. It was my husband’s voice, strained, hiccuping, sobbing. I didn’t understand at first; I couldn’t process what he was saying. In the same way I quizzically furrowed my brow when I sat in the basement of my daughter’s school in New York City and the principal announced on that first day as our preschoolers were upstairs, “A plane has hit the World Trade Center,” I again heard information and my brain responded with Does Not Compute.

Anticipatory grief is real. A diagnosis, a doctor’s report, an assignment to hospice– all are ways others try to prepare us for the death of our loved one. With each step, with each caution, with each added conversation we start to get our minds used to the idea that it may be the end. Like a threadbare shawl we continue to wrap ourselves in, each time we are comforted less and less by others’ words of reassurance.

When a death is sudden and unexpected, there is so much to get used to, so much to process. It is a task to make sense of the death, to integrate it into our consciousness. We must unbreak habits. I remember so clearly when my uncle Alan died, I still continued to pick up the phone again and again to share a piece of news. I had to keep reminding myself, “You can’t call him anymore.”

There are so many talks I have missed with these women. There are so many things I’ve wanted to show them, share with them. However, I am so lucky to have had them in my life for as long as I did.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The house with the purple awnings

September 9th, 2011 § 10 comments

I drove by it thrice today: the little house with the purple awnings.

It’s on the street near my children’s school… within walking distance, in fact. It almost always has a For Rent sign out front and seems perennially in a state of slight disrepair.

Barbara used to pass the house and say, “Paige, I could rent that house. And then you and your brothers could stay with me and I could walk you to school in the morning.”

We knew she wasn’t going to rent it, but the idea of having her so close was so appealing to us all.

“Whenever the boys are giving you trouble you can just walk over here,” she’d say to Paige. “We could have sleepovers.”

Grandma’s little cottage we sometimes called it.

But then Grandma died in a car crash— almost exactly two years ago. When that happened, our dreams of seeing her often and Paige’s fantasy of having her in the little cottage died too.

And so, today — and every day when I pass the house with the purple awnings– I think of her. And miss her. And all of the memories we could be making in the little house with the purple awnings right now.

Kindergarten

September 6th, 2011 § 11 comments

 

 

 

 

 

 

 

 

 

 

The house is so quiet… for the first time ever, all three of my children are out the door before 8:00. Tristan will have half days of kindergarten for the first two weeks so the change from preschool won’t be too dramatic. And yet, somehow with his backpack on, lunch pack clipped to it, it is different. He stands at the bus stop with a bunch of other children from the street; some of them were babies when we first moved here seven years ago. I see the changes in them after the summer more easily than in my own.

 

 

 

 

 

 

 

 

 

 

 

 

 

These are the psychological stretch marks I’ve written about before. These are the moments you know are monumental. Growth happens in fits and starts, not with smooth, sliding grace. This shift is simultaneously sudden and gradual in its arrival; I’ve been counting the days for the last month, but still the finality of its presence takes my breath away. With Tristan it’s different, his life thus far has been a challenge in many ways (background on Tristan and his physical abnormalities here). We’ve been a team, and worked so hard together. He will continue with OT and PT and need a few modifications in the classroom. But I know he’s going to be just fine.

I’m looking forward to writing again… the last month has been busy with things mostly of the unpleasant kind. But the routine of the fall, the schedules, the calendars give me structure. And with structure comes comfort. I can get through this rocky time. I can create the life I want, the one I need. I just have to keep trying.

 

 

 

Separation

August 2nd, 2011 § 27 comments

I thought they would always be together. I thought it would be until the end. When I look back over the things I’ve written about my parents, a constant theme is always how I can’t imagine them without each other.

And yet, this week, my mother moved into her own condo and began her life apart from my father.

Their dynamic just was not working anymore; six months shy of their 50th anniversary, they’ve decided to separate.

I’ve known for a few months, and the children know now too. In fact, as I write this, my parents are (together) spending a week with Paige and Colin as they do each summer. Nothing, even the decision to move forward apart, comes in the way of that this year.

I’m still a child. Their child.

I’m learning that no matter how old you are it affects you; age is not a protective shield against the hurt that can accompany such changes. Now 42, I have two generations to consider: my parents and my children. At the moment my parents’ health is good; I’ve written before about my mother’s stage III cancer diagnosis six years ago (she is in remission). But I confess, even on their healthiest days I play the “what if” game. I feel I need to always be thinking about the future, making sure I have an escape route. Like a stewardess pointing with a flourish to an exit in the forward cabin, I need to show myself that there is always a way out, a plan should something go wrong.

Even in the face of truly excellent health we’ve learned that life can change in an instant; after all, Clarke’s mother was perfectly healthy when she was killed in a car crash almost two years ago. I did not have a “what if” mentally written for that circumstance– how could I? But I have seen the way a tragedy can change a life in a split second. I think my confidence in what the day will bring has been shaken; I no longer believe that the day shall end as it began, life bookmarked in its progress.

I love my parents dearly; I am as close to them as a child could be, I think. We laugh, we talk, we share. I wouldn’t have it any other way. But the fact we are so close means this new chapter of their lives affects me deeply. How can it not? The very foundation of home life I have know my entire life is gone. I’ve been married for fourteen years; I am not a naive child who thinks wanting to make it work is enough.

And so, I program my phone with my mother’s new contact information; she gets her own entry now. I order change-of-address cards for her, and return address labels. Information now needs to go to two places. Anecdotes about the children need to be recounted twice rather than hearing my voice echo on speakerphone in the kitchen.

I support their decision– how could I not? I want them to be happy, and to achieve this goal they must live apart. But my knowledge that it’s what is best doesn’t make the bitter pill any easier to swallow.

I know a lot about grief and loss. I know that it takes time. This loss is something I’m dealing with, and will continue to, day by day.

Part of the Problem (children and books about death)

July 5th, 2011 § 19 comments

Last summer I wrote the following piece about an upsetting interaction I had with a bookseller. It remains one of the posts that readers mention and still ask me about. The topic of children and death must be a touchy subject for most. I guess because I grew up with a mother who was a psychologist specializing in these topics I have never felt uncomfortable talking about them. Let me know what you think.

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June 23, 2010

School is out for my three children. At ages 11, 8, and 4, the days are a hodgepodge of activities to allow them relaxing time at home with each other and some physical activity each day. No matter what their summer plans hold (sleepaway camp for 2 of them later this summer), I always make sure they each have a stack of books they are excited to read. Each night they go up to their rooms for at least 30 minutes before bedtime to read.

Yesterday we took a trip to my favorite independent bookstore. The tiny, jam-packed store has many employees who know and love books working there (all women, it seems). The children’s section is brimming with wonderful books for all ages. My favorite thing to do is bring the older children there and let them chat with a bookseller, telling what they’ve just read and whether they liked it or not. The clerks then can make suggestions about what the kids might like to buy/read next.

When we walked in it was apparent my favorite person was not there to help us. Another woman offered, and off we went to the back room. “What have you just read that you liked?” she asked my 11 year-old daughter. “Elsewhere,” (by Gabrielle Zevin) she answered. The woman immediately snapped, “That’s too old for you. It has death in it,” she said. She looked at me quizzically, silently chastising me for my daughter’s book choice.

“I don’t mind that she reads about death,” I said.

“I loved that book… it was so good!” Paige implored.

“It’s not appropriate for a 7th grader,” the woman persisted.

“I think it’s how the subject is handled,” I said. “We talk openly about death and illness in our house, and my daughter is obviously comfortable reading about it,” I pushed.

The subject was over. She was not going to recommend any books that had to do with the death of a teenager or what happens to that character after she dies. And so, she moved on to other books and topics. Eventually, we found a lovely stack for Paige to dive into.

As soon as we left I talked to Paige about what had happened: how the bookseller had steered her away from reading about death and pushed her to “lighter fare.” I told her that I disagreed with this tactic, and fundamentally think it reinforces a fear of death and discomfort with talking about the subject.

While I believe that a teenager’s obsession with death can be a signal of some larger emotional problem, I do not think that reading novels where the main character dies is inherently a bad idea for a mature reader. After all, so many of even young children’s favorite characters in television and movies have absent/dead parents; Bambi, Max and Ruby, and countless others have significant adults missing from their lives.

I don’t believe in forcing children to deal with the topic of death in reading until they are ready. I do believe parents are the best arbiters of what information and topics are appropriate for their children. But if a child is comfortable in reading books where a character dies, I believe it’s healthy for the child to do so. As a springboard for an honest conversation about death, it can even be extremely useful in beginning to have conversations at home about it.

Paige’s grandmother was killed instantly in a car crash in the fall of 2009. She learned that the death of a loved one can greet us at any time, whether we are prepared for it or not. By trying to steer my mature child away from the topic, the salesperson contributed to the emotional shielding that makes death a topic that so many individuals (including children) have difficulty thinking and talking about.

Is Closure Really Possible?

June 6th, 2011 § 9 comments

The rest of my family is coming back today. After a week in Jackson Hole, Clarke and Paige and Colin will return tonight, just in time for Colin’s 7th birthday tomorrow.

The refrigerator has been really empty this week. With just a 2-year old and me, it doesn’t take much to keep us fed. So I took the opportunity this morning to clean out the refrigerator and freezer– really clean them. Take everything out, throw away all the junk, the ice cream that now is just ice crystals. I tossed all of those “placeholders” that you never eat, they just take up room.

As I sprayed a wonderful new lemon verbena spray on the glass shelves, I start contemplating this week. The last seven days were my week to recover from surgery (an oophorectomy), to get stronger, to close out my year. I know I made the right decision not to join my family in Wyoming this year. It’s been a reflective time, a time for my soul to be quiet and heal. I think it’s done that a little. I think another week might help. I’ve loved my one-on-one time with Tristan; we have a nice little routine going, and I feel like he’s grown up this week.

But as the new year starts, of course, we are pushed to reflect on ourselves, to make ourselves better in the next 365 days. We reflexively reflect on whether we’ve kept any of those elusive resolutions from the previous year. December 31st is supposed to bring “closure.” In the arbitrary distinction between one year and the next (after all, why is there really a difference between the last day of 2008 and the first of 2009 any more so than any other passage of midnight on any other day of the year), we are pushed to wipe the slate clean and start anew. As I cleaned the house this week, purging old canned goods, papers, clothing, and sprucing up the house I found I was instinctively doing this: “Out with the old, in with the new.”

This annual rehabilitation, then, is supposed to be psychological and physical.
Most of our resolutions are about ways we want to be better, inside and out: concentrating on the new and gaining closure on the past.

One of my dearest friends wrote to me in an email last week, “And yet, you can no more gain ‘closure’ on life-altering events than you can erase moments from your memory.” I read that sentence many times. It is beautiful, and true.

I remember well when my friend Alex’s father died of cancer almost 10 years ago. She was so busy with all of the things that needed to be done, the arrangements that needed to be made, and taking care of her mother who needed constant attention and support. I remember wondering when she was going to grieve. I worried that his death, and his absence from her life, would fester and haunt her.

As I scrubbed the refrigerator shelves this morning I realized that you never grieve the way you think you should.
No one really just sits alone and thinks about the tragedies that befall them.
It’s too painful, too powerful to take that in as one big gulp.
Instead, what we do is weave it into the tapestry of our consciousness.
We make it part of our daily life, quiet, but present.
Maybe at this time of year we reflect more than usual, and maybe that’s why the holidays are painful as we take stock of what we’ve lost during the year and what we’ve gained.
Where that balance lands says a lot.

A year ago I thought surely 2008 would be better than 2007. It really didn’t turn out that way. But I am doggedly optimistic even when I’ve been been proven wrong so many times. I do not believe that there is a “justice meter” in the universe that is going to now dump things on someone else and leave me alone for a year. But maybe as my own tapestry of consciousness keeps getting woven, it will be stronger and more resilient to keep me going this year.

At least I’m starting with a clean refrigerator.

originally written January 2, 2009. Modified June 6, 2011

A Day Away (when people take their lives for granted)

June 3rd, 2011 § 10 comments

More often than not, cancer creeps into conversations with friends. New friends, old friends.
I don’t think I’m obsessed with it. I don’t have to talk about it. Why does it come up?
Is there a cancer radar?
Is it just that when cancer folks are together we let our guard down to share?
Do we want to compare notes and try to get information from each other?
Probably all of the above.

Here’s also where I think it comes from: talking about illness is grounding. It puts the emphasis where it should be. I have many friends who have family members who either have had or currently have cancer. We’re a club. There is a support we can provide for each other, a language we can speak. Stages, grades, blood counts, oncologists, PET scans, MRIs, tumor markers… and on it goes. I really think I should get credit for CSL… cancer as a second language.

I like people who “get it”; I find more and more that I am naturally drawn to them. I’m rarely surprised to find that new friends of mine have had some type of hardship in their lives.
Maybe it’s just that more and more people have “something” in their life story.
Maybe those are the people I gravitate to.
Maybe they are drawn to me (or the “vacuous people need not talk to me” sign I have on my back scares others away).

It’s not that I don’t like talking about shoes or The Bachelorette or movies. I do– a lot. And I actually do think they matter. It’s important to have a break from the heavy, serious stuff. Some people think that the small stuff is all there is– that it matters. Those people are hard for me to take.

One day, shortly after I was diagnosed, I sat watching my son take a tennis lesson. I was still numb and reeling from the news that I had cancer. I hadn’t started chemo, and was still awaiting surgery. I knew what I was facing: double mastectomy and chemo. But to the outside world I looked totally normal; no one would know what news I had received.

There were two moms sitting near me chatting loudly while their kids had their lesson. These were the days before the recession, when women in my town were flush with cash, and living high on the hog. They were talking about vacations. “I just can’t decide where we should go for vacations this year,” one said, “John has so many vacation days it’s going to be hard to use them all. We could go to Switzerland again. But that’s kind of boring. And there’s the Caribbean. But I kind of want to do something different. What do you think?” she said to her friend.

I know what I thought. I thought someone needed to hogtie me to the chair before I punched her out. That was a problem? It was one of the few times I really wanted to say “Lady, let me tell you about a problem.” But I didn’t.

Why?

Because maybe her mammogram was the next day.
Maybe she was a day from being told there was something suspicious on it.
Maybe she was a week away from having a biopsy.
Maybe she was a month from having a double mastectomy.
Maybe she was six weeks from starting chemo.
Maybe she was just about to learn the lessons I was learning.

When daughters grieve the death of their mothers

May 25th, 2011 § 1,067 comments

A few months ago I asked my mother to share some thoughts on the difference between guilt and regret (A Psychologist’s Perspective on Guilt vs Regret, February 7, 2011). That post quickly became one of my most-read pieces. When I knew my mom was coming to visit this past weekend I asked, via Twitter, if anyone had any questions they wanted me to ask her.

One reader wrote:

My mom passed away six years ago, when I was 24, after a five-year battle with cancer. I’m getting married in a few months and I’m finding two things difficult: 1) going through a big life change, and the actual planning of the event, is making her loss feel much more at the forefront than I expected; 2) I’m struggling with marrying someone who didn’t know my mother and doesn’t understand (and honestly, not sure how he can, not being there) my grief.

My questions are: how do you help the new people in your life know the person you lost and understand the depth of your grief? And how do you deal with the new kind of grief that comes with entering a new phase of life?

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My mother, Dr. Rita Bonchek, spent her career as a psychologist specializing in grief, loss, death, and dying. She had some thoughts on the subject. I decided to add my own take on it; that perspective appears after hers.

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Dr. Rita Bonchek writes:

In American society, the topic of death causes great discomfort so people do not think about or discuss the subject. When the death of a loved one occurs, the bereaved are often encouraged to put the occurrence in the past. Freud felt that the mourner needed to ” let go” in order to move on. However, when Freud experienced the death of his favorite grand-child, he often expressed with great sadness that he would never get over the loss.

What is not appreciated about the death of a loved one is that “Death ends a life but it doesn’t end a relationship that lives on in the mind of the survivor.” Some studies have shown that mourners hold onto the relationship with the deceased with no notable ill effects.

A childhood death of a parent can be a devastating event. How the child grieves is extremely individual and based on the child’s age when the parent died, the cause of the loss, the quality of the parent-child relationship prior to the death, and the support system available both at the time of the loss and afterwards. If a surviving parent removes all items and pictures of the deceased and does not talk about him or her, the child is denied the grieving process. The secrecy and the inability to have a shared grieving between the child and family that shares the loss is a travesty.

The mourning for a mother never really ends. Even after many years while there may not be active grieving, there are what one child called “mommy-missing feelings.” And what does a mother provide for a daughter: support, advice, a significant person who can help and validate the child during development. No one else is so uniquely important to the child as a mother who helps her to form an image of herself. With this self-image, a daughter is helped to determine how to interact with the world and the people in this world. A daughter’s feelings, thoughts, hopes, desires and attitudes are influenced by a mother. But this mother does not have to be the mother who existed in real life but who is a mother who exists in the daughter’s heart and mind. This is a mother who is carried within a daughter forever.

When a mother-daughter relationship has  been strong and positive, a mother loves a child in a very intense and special way. A daughter will miss a mother’s protectiveness, loyalty, encouragement,  praise, warmth, and, as the daughter becomes a woman, an adult-to-adult friendship. There are special times in the developing daughter’s life in which the absence of a loving person is painful: graduation, confirmation, Bar/Bas Mitzvah, a wedding celebration, the birth of a child, etc. This is when the wound is re-opened.

Who the daughter was when her mother died is not who she was after the painful event. Every death of a loved one changes us and causes us to re-grieve the loss of other loved ones. Hope Edelman, in her book Motherless Daughters encourages women to acknowledge, understand and learn from the changes that occurred as a result of the early loss of a mother. It can take years. With reflection  and understanding of what was lost when her mother died, a daughter can, with greater sensitivity, become her own role model as she creates a strong family and friend network of her own.

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I had the following thoughts:

Even though the death was six years ago, it happened to you at a time before marriage and/or motherhood. While not relevant to all women, these are often defining events in their lives. While you had your mother for your childhood, oftentimes daughters do not fully appreciate their mothers until they become wives and mothers themselves. When you no longer have a mother to admit “now I understand what you meant” or “I’m sorry for how I behaved as a child” it can feel that there is unresolved business at hand. Not being able to ask, “Is this how you felt on your wedding day?” or “What was your day like?” is difficult.

Of course, a wedding is one of these events that is tied to family. How can you possibly explain the ways in which these occasions make you miss your mother? As my mom said, it’s not just the relationship you had that you grieve, it’s the relationship you could be having now. There is no way to fill that void, no one can fill that space. I think that incorporating your mother and her memory into your ceremony may provide a way for her to be remembered and present during your wedding. Because your fiance did not know her, he will not miss her in this event. You will, however, as some of the guests at your wedding will too.

It’s a common misconception that talking about your mother or acknowledging her absence will “make people sad.” On the contrary, I believe that talking about her and her absence is appropriate. One way I think this is appropriate is to mention her in the wedding program and/or light a candle during a portion of the ceremony that names those who are “special to us but not here to share this day.” I have seen an acknowledgement of special friends and family who are deceased but remembered on this special day. A paragraph, properly worded, could mention your mother’s role in raising you, making you who you are today, and how you wish she were here to share this occasion. Similarly, wearing a piece of her jewelry or clothing (like a veil) or carrying her favorite flower in your bouquet might help you feel closer to her on the actual day.

Grief sneaks up on you when you least expect it; the reflexive reach for the phone is a hard habit to break. Both happy and sad events can make you miss loved ones. Every little thing reminds you of your loved one, the things you did and the things you had yet to do. You grieve the relationship you lost and the one you had yet to build. The relationship was truncated, and that cannot be fully appreciated by someone who has not experienced it.

I don’t know if you have shared a lot about your mother with your fiance, but I think it’s important to do so before you get married. I think it’s important to write about her and talk about her with him. He’ll never be able to understand fully, and he’ll never miss her since he didn’t know her as you did. But he does need to understand how important she is to you now even though she’s no longer alive. That may not be intuitive– although your mother died six years ago she is still a very important part of your life.

It’s important to say that not all of the memories surrounding your wedding would necessarily be happy; after all, weddings can be prime opportunities for mothers and daughters to clash. However, the pivotal moments of walking down the aisle, first dance, photographs, and so on can be especially difficult.

Sometimes when we grieve we don’t know exactly what we need, and in the end, no one can provide the “fix” for us — that could only happen if our loved one came back. Realizing that you don’t really know what you need all the time as you go through this is important, too. Something your fiance says might be incredibly aggravating one minute (a reminder that “he just doesn’t understand”) but other times the same thing may strike you as supportive. He’s in a tough situation because he’s trying to support the woman he loves on a day that is supposed to be one of the happiest days of your lives together. However, it has a component of pain involved for you. He needs to accept that dialectic and not try to gloss over or erase the pain that will accompany all of the happy days you will have together. He needs to know that grief will be a part of every happy event you will have in the future because your mother is not there to share it. The sooner he can accept that truth, the better it will be for both of you, I think.

I hope that some of these thoughts will help you in the months leading up to your wedding and that you can find a way to incorporate your mother’s memory into your ceremony. I know she will be in your heart and on your mind.

It takes two

May 18th, 2011 § 16 comments

A few weeks ago I was talking with a friend about our blogs. She said that she never writes about her husband; some readers didn’t even know she was married. I don’t directly write about my husband Clarke often. I’ve written endlessly about his mother Barbara’s sudden death in a car crash in 2009 (if you want to read more about her, please click on the tag “Barbara” on the lower right of the page) but not about Clarke. Clarke is private, and I respect the fact that he doesn’t want to write or discuss topics that I do.

Clarke wrote a piece that I treasure. In 2009 he nominated me as a “Brave Chick” for a website that celebrated women who had tackled adversity (www.onebravechick.com). The interesting thing to me as I re-read the essay now is how much more has happened since then. We’ve had many medical and emotional challenges since this letter was written. I like to think that the seeds of strength were sown during some of these experiences.

I am re-posting this today not to celebrate myself, but rather to celebrate my husband. We are a team in this thing called life and I couldn’t do it without him. I hope I will get him back here on the blog sometime to write about some more of the issues we have dealt with; I think hearing it from his point of view might be helpful for some readers. But for now I will let his words sing, and hopefully honor him by doing so.

 

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“The bravest sight in the world is to see a great man (or woman) struggling against adversity.”
-Seneca

“Let us do our duty, in our shop in our kitchen, in the market, the street, the office, the school, the home, just as faithfully as if we stood in the front rank of some great battle, and knew that victory for mankind depends on our bravery, strength, and skill. When we do that, the humblest of us will be serving in that great army which achieves the welfare of the world”
-William Makepeace Thackeray

My wife Lisa and I met for the very first time at the George Foreman / Evander Holyfield fight in the spring of 1991 when, in a scene straight out of Rocky, a forty-two year old Foreman went the distance with the undefeated Holyfield. We met again at a Halloween party later that year and began dating. We got engaged in 1995 and married in the summer of the 1997. Over the course of our 18 years together and in particular the last three, it has become clear to me that my wife possesses more than her share of courage.

As with any 18 year period we have had our ups and downs together but mostly it has been up. We have three beautiful and intelligent children, loving and supportive families and great friends.

In the grand scheme of things, our life together was pretty smooth which is why I think we were completely unprepared for what the last three years have brought us. In August of 2006 we learned that our five month old baby boy was born with a condition that required immediate open heart surgery. He also had complex problems with his cervical vertebrae and the muscles of his hands that would require a significant ongoing investment of time and energy in medical care and therapy.

Since Lisa is at home with the kids when I’m at work, the day-to-day heavy lifting of running the house and managing the often crazy logistics of our lives naturally fall to her. In addition, because she is the medically savvy one in our family (her father is a surgeon and her mother is a psychologist), Lisa ended up quarterbacking and supervising Tristan’s care which included (and still does include to some extent) coordinating treatment with four or five different specialists (neurologists, pulmonary specialists, pediatric cardiothoracic and orthopedic surgeons, etc.) in three different cities. Juggling all of those competing priorities was extremely challenging and time-consuming. It seemed like fate was piling on hardship in January of 2007 when Lisa was diagnosed with Stage II breast cancer.

Lisa spent much of 2007 aggressively treating her cancer with a double mastectomy and chemotherapy. I’m sure many women who read your website are acquainted with the harsh reality of how tough a cancer treatment regimen can be on one’s body and, just as importantly, one’s psyche. I must confess that I wasn’t really prepared for what was to follow. Like many things, cancer treatment seems much simpler in the abstract or on television than in the messy reality of real life. It is a process where you are forced to make life-changing and often heartbreaking decisions while in possession of only limited information all the while dealing with the physical, mental, and emotional side effects of disease itself and the treatment. If adversity is the test by which character is revealed then I’m proud to say that my bride has passed her personal test with flying colors.

At least by the romanticized ideals of literature or history you don’t get to see real bravery very often when you live in Darien, Connecticut (braving the long lines at the local Starbucks doesn’t really count). However, there was something quietly heroic in how Lisa handled the myriad of issues she was dealing with in a thoughtful and calm (with some exceptions) manner all the while taking care of the thousand little details that go along with being a mom to a young family. No matter how much personal pain she was in, the kids’ lunches got made, their homework got done, their boo-boos got kissed, and their very real fears addressed and soothed even on the very worst days. Tending to young kids isn’t easy on your best day but being able to do so and face the world in the midst of cancer and chemo and all that implies is something else altogether.

Looking back, the amazing thing to me is how little impact the whole period had on our children; that speaks to how much of her energy and force of will Lisa put into ensuring that that was the case. We had lots of help from our families and our amazing group of friends, but at the center was Lisa getting up each day and doing her best to move forward with grace and determination (kind of like a 42 year-old George Foreman coming out of his corner, taking his licks and getting in some good shots of his own). In my book, that is all any of us can really expect of ourselves and defines what bravery is all about. When my test comes, I hope I do as well and face up to it with as much strength as Lisa did.

A friend whose wife had just gone through the breast cancer experience told me when I learned about Lisa’s diagnosis “the thing about breast cancer (pardon another tortured sports metaphor) is that you never get to spike the ball in the end zone and say you are done. There is always something else.” I thought I understood what he was saying at the time, but I appreciate it much more now. Although chemo ended in the summer of 2007 and her breast reconstruction finished shortly thereafter, Lisa has been dealing with the often frustrating regimen of drugs and side effects that come along with being a cancer survivor. While things are certainly better than they were, it has been a constant challenge and adjustment for both of us.

As I said earlier, one of the most difficult things about having cancer, even a cancer that is as common and well known as breast cancer, is that you really don’t have any idea what is ahead of you as either a patient or a spouse when you begin the process. There are reams of data and academic studies available but despite that fact, it is difficult to distill and digest all of that into a coherent picture as to what you as an individual (or the spouse of one) will experience.

As part of her life as a cancer survivor, Lisa has taken it upon herself to make understanding the long road of treatment, recovery, and being your own best advocate a little easier for women who will face the same challenges she did. She spends hours and hours speaking to women in our community who are just beginning the process about what she has been through in the hopes it will help them be prepared. As an extension of those conversations she began writing (and later blogging) about her experiences and feelings about cancer and posting them on the web. She sometimes writes clinically about the nitty-gritty medical realities of treatment and recovery which are based on her personal experiences, extensive research of the available medical literature, and her own conversations with her doctors.

Other times she examines the darker, emotional, frustrating, and deeply personal places that being a cancer survivor can sometimes bring you as young woman and a young mom. Her writing is often beautiful and poetic and is always thoughtful and enlightening. She puts it all “out there” for public scrutiny. She posts regularly under her own name to help her fellow women (our moms and sisters and daughters) understand and deal with a path that all too many of them will walk down at some point in their lives. I believe this is noble and selfless and courageous.

So as a very small and modest way of acknowledging her daily efforts and recognizing her achievements, I would like to nominate Lisa Adams (age 39), loving wife, wonderful mother, caring friend, talented writer, and strong cancer survivor to be a featured brave chick. I would invite those members of your community who are interested to check out her writing at lisabadams.com.

Thanks for your time and dedication to Brave Chicks everywhere.
Clarke Adams

July 7, 2009

A bookmarked life

May 13th, 2011 § 9 comments

One of the defining features of childhood is innocence.
As children we don’t realize that things change. We think the way that things are when we go to bed at night is the way they will be in the morning. We put the bookmark in our lives and expect everything to be the same when we return to it.

Of course, as we grow we realize that’s not true.
That it can’t be true.
That’s not how things happen.
That’s not the way the world works.

And what do we say when someone still believes it? We say he is being childish.

Oftentimes I wish I could retreat to childhood. Not because of how my childhood was, but because I want to recapture that mindset, the one that says that everything is going to be alright. When people tell me “everything is going to be fine” I snort. I recoil. I don’t believe them.

It’s not always going to be alright.
Sometimes it is. Sometimes it isn’t.
But the road you must take to figure it out might break you before you ever find out for sure.

I can do better, but I have done my best so far (Mother’s Day)

May 8th, 2011 § 9 comments

I can do better, but I have done my best so far.
I’m not the fun mom, but I’ve taught my children big lessons in their young lives.

I try to be a good wife, mother, daughter, friend.
I try to inhabit the womanly roles even when I don’t always feel feminine.

I spend a lot of time inside my head,
twisting, pulling, ruminating.

It doesn’t mean I’m sad. It means I’m thinking.

I’ve made mistakes,
I regret some of them.

But my children are not those mistakes: they are my legacies.

I look at them and wonder how it can be that Clarke and I have created three people. Literally given them life.

It is a joy for a mother to see her children grow,
learn to inhabit the space they take in the world,
learn to own that property.

It’s as if children need to learn the size of their bodies– the breadth of their being– in order to go out into the world and participate in it.
I love watching this process unfold.

I can do better in the future, but I have done my best so far to mother them.
And really, that’s all anyone can ask.

Crybaby

May 4th, 2011 § 10 comments

I decided to repost this old piece after reading Katie Rosman’s Wall Street Journal piece “Read It and Weep, Crybaby”

September 3, 2009
It’s 11:30 in the morning and I’ve already done it once today. Cried. Not sobs. But a quiet, empathetic cry. Large tears welling.

It happens less than it used to. I have gotten better at managing it. I can now get to the point where I well up, but the tears don’t actually spill out and run down my cheeks.

It’s progress.

That difference seems to make people less uncomfortable. My doctors are used to it; they know I well up. I figure if you’re dealing with cancer patients you are used to seeing lots of crying– you must have a coping mechanism. Maybe it doesn’t even register anymore. Maybe they are immune to it. I see tissue boxes in all of their offices so it’s likely a common occurrence.

There are certain subjects guaranteed to make me cry.
Tops on the list?
My parents; my mother in particular. Raise the subject of anything happening to my mother— any illness, any harm, most especially her death– these words if spoken aloud instantly make me cry.
My mother is, to me, a prized possession, a beloved security blanket that must remain complete and undamaged.

Other topics do it too.

Today the trigger was talking about a specific day I was bald in front of my plastic surgeon. I remember the way I felt stripped of every ounce of dignity in a way that being naked, topless, breastless countless times in his presence had never made me feel. Obviously I can still connect to that emotion.

I still remember that feeling of being naked. Not clothes-less, but dignity-less, bare of everything that held me together as me. Sitting in a coffeeshop with music playing and the sun shining and my friend sitting with me, I could still feel that feeling two years later.
I could still feel it. And I cried.
I cried for the friend I was with, herself recently diagnosed with breast cancer.
I cried because I didn’t want her to have to feel it too.

I cry for her sometimes. I cry because I want to protect her. I want to be the pit bull. I want to stand guard at her driveway, at her mailbox.
“NO!” I want to yell.
“You cannot have her,” I want to say to the intruder.
To cancer.
To all of the things she might have ahead of her that will cause her pain.
Silly, perhaps.
Childish, perhaps.

But that’s how I feel.
I bet that’s how she feels.
I know that’s how I felt.

As a person with cancer you wake up and think,
You know what?
I don’t want to have cancer today.
I want to take a day off.
I don’t want to go to any doctors.
I don’t want to make appointments.
I don’t want to talk about cancer.
And even though I can’t seem to talk about anything else,
I don’t want to talk about it.
I just want to stay in my pajamas all day
and eat peanut butter from the jar with a spoon
and have the world go on without me
because I don’t want to participate today.
I just want a “sit it out today” note from my mom
so I can just take a break today…
and maybe tomorrow too…

I want to protect my friend.

We moms are good at that.

My daughter started middle school. On the second day she came home and started in on her math homework. Within minutes she was in tears. She got frustrated and started crying. The teacher had given them a very hard sheet of problems and told them to see what they could do. Some of them were complex probability and statistics questions. She brought them to me and was frustrated. I didn’t laugh at her. Or even criticize her for over-reacting. I knew what she was feeling. I knew it was the “everyone else knows what they are doing and I’m the only one who doesn’t” syndrome. I knew that, like me, when frustration takes hold, our kind doesn’t get angry, we get emotional.

It’s not a great trait; it is especially hard for men to deal with. For husbands. For fathers.
My father used to go crazy when I started crying. It was just an irrational, irrelevant act he had to deal with. A distraction.
I know if my husband had been there he would have told our daughter to stop crying. I know the tendency won’t serve her well.

I always think of Tom Hanks’s character Jimmy Dugan in A League of Their Own when he yells “There’s no crying in baseball!”

It’s a good thing there wasn’t a sign on my oncologist’s door that said “There’s no crying in cancer.” Some days I think it’s a necessary part. I think it’s healthy. For me anyway.
I’ve cried on Saturdays.
On my birthday.
I’ve had breakdowns stringing Christmas lights on the trees in my yard when I just couldn’t get it right.
I’ve kicked the tires of my car.
I’ve slammed doors.
I’ve screamed to the sky.
I’ve sworn a blue streak.
I’ve cried so hard my stomach turned inside out and I’ve retched and collapsed because I just couldn’t hold myself up anymore.
I’ve dreaded the night-time because I knew I would be scared and my dreams would frighten me.
I’ve taken medications to muffle the anxiety of the chemo treatments I knew were about to come.
I’ve been terrified and wondered how I was going to get through it.
I’ve faked it and smiled and been the portrait of strength and composure while ready to crap in my pants because I was so scared inside.
I’ve felt the chemo needle go in my arm bringing the drugs in, felt the cold liquid hit my blood and wanted to scream “Wait! I’ve changed my mind! I think it was a mistake! I think it wasn’t me! I think you got it wrong!”
I felt the pre-medication go through me, hit my brain, cross the blood-brain barrier and fog me up.
Pausing, knowing it’s in me.
Thinking
Please.
Please.
Do your work.
Save me.
Drugs, do your work and save me.

How will I know if they did? I won’t.
I don’t say I’m cancer-free. I have no idea if I am.
I will hopefully die of something else and I will have my come-uppance. I will give cancer The Finger.
I will have it say on my tombstone:
Hey, Cancer: I laughed last. I died of something else.

So, call me a crybaby.
I prefer to say I experience the world richly.
Either way, I make no apologies for my tears.
That’s the kind of girl I am.

The Sisterhood of the Scarves

May 3rd, 2011 § 25 comments

There isn’t one right way to react to loss. And the thing about grief? It’ll sneak up on you precisely when you’re not looking.

This morning I attended a memorial service for a 38 year-old mother of two. She died of complications from leukemia, leaving a loving husband and two children behind. We were connected by a shared friend and a diagnosis of cancer.

When Kellie was diagnosed fifteen months ago and learned she needed to have chemotherapy I offered her my scarves. I had an extensive collection from my months spent without hair and had been serially loaning them out to friends after my hair grew back. After they’d covered my head, they’d gone to a friend’s sister in Colorado who had breast cancer. Then they went to a friend down the street who also had breast cancer. The fourth head they touched was Kellie’s.

During that time I had to deny others the use of the collection. I know too many women who’ve had cancer, I thought. There isn’t a break in between their tours of duty. The scarves don’t rest, they just keep traveling.

Perhaps some might find it icky to wear a scarf of someone else’s. That never seemed an issue for my friends. In fact, their softness from being washed so often was a bonus; heads are sensitive when hair comes out and the softer the cotton is, the better.

Kellie had those scarves for a long time. Her own fiery red hair was long gone; my scarves were a poor substitute for that ginger hair of hers. I like the thought of her having something comforting and cheery to cover her head during some of those difficult days though.

After the service today the guests stood talking over coffee and tea and far too many sandwiches and baked goods. Unprompted, our mutual friend assured me the scarves were safe and would be returned soon. I know when the stack comes back I’ll touch the scarves longingly, wishing Kellie were delivering them herself.

I’m overwhelmed today with emotions… sadness at the second Mother’s Day without my beloved mother-in-law, anger at cancer for claiming another young mother, frustration that oncology is often an art more than a science, worry that it will happen to me.

I just need to think. I just need to cry. I just need to remember. I just need to live.

Growing pains and psychological stretch marks

April 11th, 2011 § 5 comments

The months and years go by. Like all of you I mourn the quick passage of time. “Where did the fall/winter/year go?” I hear my friends asking.

Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, reading that book a friend recommended; many things went undone in the dark and cold months of winter.

Maybe there were emergencies, maybe there were health issues, maybe you just couldn’t get the energy together to accomplish everything you wanted.

Regardless the reason, there can be a bit of disappointment when a season ends.

Growth happens in fits and spurts, not with smooth, sliding grace.

With each phase comes
pain,
discomfort,
unease,
restlessness,
sleeplessness,
yearning.

At the time of my mastectomies the reconstructive surgeon placed tissue expanders in my chest. These were temporary bags of saline that would be slowly filled to stretch out my skin to make room for the silicone implants that would eventually take their place. Each week, like clockwork, I returned to my surgeon’s office. He accessed a port in each expander with a needle and added saline to each side. Each time after a “fill” my chest would feel tight. The skin wasn’t big enough for the volume inside, and it would react to the increased pressure by stretching. Until the skin could replicate there was achiness, tightness, a slight ripping or tearing feeling.

A similar sensation happened to me during my pregnancies. The growth happened fast; I got stretch marks. I had visible proof my skin just couldn’t keep up; the growth was too rapid, too harsh, too vigorous.

I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.

What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young.

We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.

I am often moved to tears as I watch my children grow.

I sit in wonder at the succession of infancy, childhood, and adolescence.

I know that as a mother I lack many skills, but I also know that the words I have written in my blogs and essays will one day be a gift to them too.

Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.

Each August as they go back to school I marvel that another school year has passed and yet another is here.

No matter how you measure time it always goes too fast.

The growth happens too fast.
The growing pains hurt.
The stretch marks might be invisible, but they are surely there.

Their ignorance is my prize

April 7th, 2011 § 8 comments

I’m cranky, I’m sad, I’m frustrated.

I don’t want to explain how I feel to family members. I don’t want to have to.

I want to yell, “If you’d had cancer you would understand!” But I know their ignorance is my prize… the prize I get for the fact that some of the people I treasure most haven’t had cancer.

I’ve seen a comaraderie that comes with this disease.

We may have had different types of cancer, different treatments, different prognoses… but… we are tied together.

When I was diagnosed one of the first things I was struck by was how vulnerable I felt. I worried about my family, especially my (then) seven-month old son Tristan who had his own medical problems. “Who will fight for him?” I thought. “No one will love him the way I do. No one will be his advocate the way that I will. I have to do it. I have to be here for him. I have to do what it takes to stay alive.” That became my mantra.

But once introduced, the worry could not be abolished. It could be dampened, minimized, controlled. But it could not be removed.

Two days ago a high school classmate died of brain cancer. Today I got word that a woman I know is in intensive care after complications from leukemia.1

I ache for their families, for their children. I can’t explain the nuances of these feelings well. I have been here at the keyboard trying to find the words and repeatedly come up short.

And so, perhaps it is enough to say that I don’t always have the right words to convey what it is I am feeling.

But that doesn’t mean I feel it any less.

  1. I am saddened to report that Kellie died shortly after I wrote this post []

Knit together

March 14th, 2011 § 10 comments

My parents came to visit on Saturday. They stayed for 24 hours, took the kids out for dinner that night and played lots of games of hide-and-go-seek. Nothing extraordinary, nothing particularly notable. It is in these ordinary moments that I find the most pleasure… seeing my parents and my children enjoying each other’s company.

My mother arrives like an environmentally conscious Santa Claus, toting a reusable grocery bag full of mysterious treasures for the kids. Many are newspaper clippings: suggestions for books or reviews of movies they might have seen. Often they are word or logic puzzles from their local paper; for me there are usually cartoons.  There’s usually something from the dollar store. Tristan is usually obsessed with whatever she brings while she is here; as soon as she leaves, so too does his interest in the item (hence the inherent beauty of the low price).

Another bag of my mother’s always contains her current knitting project. She knits in the car while my father drives. Tristan loves to wrap the house in the balls of yarn; he criss-crosses the furniture legs, counters, and walls until they are spiderwebbed. Paige has learned to knit and whenever Nana comes she enthusiastically picks up her project to join in while my mom knits. Mom knits wherever she goes. Watching Colin’s tennis lesson, sitting and listening to Paige play piano, watching Tristan ride his tricycle. She almost never looks down at her hands, something I was never able to master.

It was warm and sunny this weekend… a welcome break from the endless weeks of snow, ice, and cold we’ve had here in Connecticut. My mother sat out on the front step with Paige and they knit together while Colin shot baskets and Tristan rode his bike. I peered out the window from the kitchen at them sitting there. It made me sad and happy at the same time. I tweeted: “My mom is outside on front step teaching Paige advanced knitting techniques. I smile, I miss my MIL (mother-in-law), I feel lucky to see this moment.”

I can’t separate out the happiness of seeing my children with my mom with the sadness of wishing Barbara were here, too. Maybe that’s selfish. I know there are so many children who don’t have any grandparents that are alive, and mine still have three. But that is part of grief, I think… the effect it can have on happiness. It takes the purity away. I couldn’t just be happy to see the scene; I necessarily wished their other grandmother could have those moments.

I grabbed my phone and went outside. I wanted to capture the picture so mind won’t forget. Children often remember the quiet moments more than the big, fancy events. Paige will always associate knitting with my mom… she’s treasure the talks they had, side by side, as she knit and my mom helped her when she made a mistake. For Colin, having my dad watch him play tennis is one of the ways he likes to share with my parents. He’s proud, and knows my father is proud of him. He always gives a resounding “YES!” when I say Grandpa will be there to watch him play.

After my mom left Paige continued to knit. Shortly thereafter I knocked on her bedroom door. She answered, tears welling up in her eyes. She told me she had made a mistake. She had tried to correct it, but further wrecked the piece she was working on. She had ripped all of her work out. She would start over.

And so she did. And now, as I type, she’s sitting in a chair working diligently to recreate the work she destroyed. I know she’ll work until she goes to bed.

I know how quickly life can change.

For now, I revel in the glory of the ordinary, the everyday, the mundane.

 

A step

March 6th, 2011 § 0 comments

Written September 19, 2009

I put makeup on for the first time in days.
I don’t know why.
I know the tears will wash it away.
But it’s a step.

Today, with complex fractures still unset in his right leg,
My father-in-law got out of bed and hopped with a walker.
I don’t quite know how.
But that’s the kind of guy he is.
He will have more surgeries on Monday.
He’s going to have at least twelve weeks without weight-bearing.
His wrist is set, with a plate.
His knee fracture will get repaired on Monday, too.
He’ll need months of physical therapy.
But it’s a step.

Colin, age 7, was just sitting at the kitchen table.
He had a plastic bone-shaped toy and
Had placed a piece of paper inside.
I asked what it said.
“Grandma 2009” he said.
And he wrapped Scotch tape around and around the bone to make
Sure the sides didn’t come apart.
“It’s like a memory box.”
“Oh,” I said, trying to hold back the tears.
“I think that’s nice.”

Paige is making a “Get Well Soon” card for Clarke to take to his
Father tomorrow when he goes to see him.
I am sitting in the other room and the thought of it
Brings me to tears.
I’m almost scared to go and look at it.
I just know it’s going to be so special.
So wonderful.
So filled with love
and innocence
and childish adoration
that it will be happy and sad
all wrapped up in one.
It will be painful for him to read I bet.

Being half of “Grandma and Pops”
is going to be like limping along…

But
I keep
reminding myself:
even
a limp
is a step.

Just a sandwich

March 6th, 2011 § 0 comments

Written September 18, 2009

I had a lot of breakdowns today.
At Starbucks talking to my friend Brenda.
In my car.
Talking to the director at nursery school.
The most embarrassing?
At the deli counter.
Looking at tuna salad.
The sight of tuna salad made me cry.

Two weeks ago I asked for a small container of tuna salad.
The way I always did when my in-laws came to visit.
Tuna salad from Palmer’s Market.
It was my mother-in-law’s favorite.
Nineteen days ago she sat at my kitchen table.
Twenty days ago I asked for tuna salad.
I just want to ask for tuna salad again.
I just want to say to my favorite deli counter man,
“My mother-in-law is coming to visit,
So I need to get more tuna salad…
You know how much she loves it!”
I just want to say those words.
I just want to make her a tuna sandwich.
That’s all.
Just a little thing really.
Just a sandwich.
Is that too much to ask?

Does that truck driver know that?
That I just want to share a sandwich with my mother-in-law?
I just want to hug her,
Hear her voice,
The way she liltingly said my name when I answered the phone.
The way she said “hello” in a special
Sing-songy way when I called her.
I think of the cotton nightgowns she loved so much.
The way she hated the last haircut she got in Jackson Hole.
How she wondered if they were still wearing linen in
Connecticut in August and if she could wear a linen blazer for
David and Bronwen’s wedding.
How she loved the note paper I got her for her birthday last year.
How she played Webkinz games on the computer
Just to be able to have something to talk to the grandkids about.
How she was jealous I got to hold Baby Owen the day after
He was born this week.
How she was making plans to come and see him.

Does that truck driver know that?
Does he know she had a brand new grandson two days old that
She didn’t get to hold?
Does he know he killed her on her son David’s birthday?
Does he know he killed the mother of six children?
Nine grandchildren?
Many more to come?
Does he?

I bet not.

I haven’t been able to eat more than a few bites since Barbara was killed.
I wonder if the truck driver has.
I wonder what he’s having for dinner in jail.
I wonder if he’s going to have tuna salad.
Because right now,
When I think of it,
All I can do is cry.

Children are different

March 6th, 2011 § 0 comments

Written September 18, 2009

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in the Komen Race for the Cure with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

The Box

March 6th, 2011 § 4 comments

Written September 17, 2009

She went up to bed tonight,
Still pink-eyed and shaky.
Finally calmed enough to hopefully get some rest.
And as she walked into her room,
Somehow,
From beneath her bed,
The bright kaleidoscope patterned paper
Caught her eye.

I heard the sobs,
The wails,
The primal,
yearning,
cry.

“My birthday present.
From Grandma.
The one she gave me early.”
She stood pointing at it,
Gaze averted,
Like a child pointing at a dead
Animal in the middle of the road.

Together we looked.
And then all at once it hit me.
I knew what she was talking about.

Two weeks ago,
When my in-laws were visiting,
Paige’s grandmother had given her a wrapped box
And said,
“This is for your birthday.
Put it somewhere safe.
Don’t open it until October 28th.
I know it’s something you’ll like,
But you have to wait until then,
Okay?”

And so,
Because that’s the kind of 10-year old she is,
Paige didn’t peek,
Or lift the corner of the paper,
Or ask her brother what was in it.

Instead,
She carefully put it under her bed
To wait until October.

We had no way of knowing we’d never see Grandma
Again.
No way of knowing that was the last present that would be
Bought.
No way of knowing that a truck which had no business
Trying to pass anyone,
Much less several vehicles at once,
Would slam head-on into my in-laws’ car and kill our
Loved one.

Tonight,
The very sight of the box,
And the thought of its giver,
Brought her to tears,
Racked her with sobs,
Riddled her with grief,
Filled her with anger,
And sadness,
And loss,
And pain,
And confusion,
And did the very same
To me.

Barbara, I miss you

March 6th, 2011 § 1 comment

written September 17, 2009

I didn’t even recognize his voice when
I answered the phone last night.
It was my husband.
And through the sobs
He told me there had been an accident.
A car crash.
His parents.
Driving from their home in Jackson Hole
To their home in Scottsdale.
A truck had tried to pass some other vehicles
Around a slight bend.
The truck only got alongside an oversized load
when they collided,
at highway speed,
Head on.
In their lane.
The passenger side took the impact.
My beloved mother-in-law,
Barbara,
Killed instantly.

Mother to six,
Grandmother to nine,
Including newest grandson Owen born only two days ago.
Truly beloved woman.
We all grieve her loss.
We ache.
We are stunned.

Clarke’s father, airlifted to Salt Lake City.
Awaits surgeries for his injuries.
Already surrounded by relatives.
More scramble and scurry to be at his side.

We cry and mourn and try to make sense.
There is none to be made.
No reason,
No explanation.

Or maybe there is:
A stupid decision
By a stupid driver.

A moment’s impatience
Let to a
A split second acceleration
But a miscalculation
Let to a
Fatality.

Problem?
Wrong person died.
Wrong person paid the price.

Don’t tell me any logic.
Don’t tell me any cause.
Don’t tell me any plan.
Don’t tell me she’s in a better place.
Don’t tell me she’s looking down on me.
Don’t tell me anything good.
Don’t tell me anything about anything.

Right now
All I feel is pain.
All I know is hurt.

And now?
Now we have to tell our children.
Grandma’s dead.

Barbara, always in my heart

March 6th, 2011 § 0 comments

I’m going to be bringing over many of the posts I made when Barbara Smith Adams died on September 16, 2009. I find myself crying reading my words again… reliving those confusing, tragic, raw feelings that I had when I first got the news. I want to have those posts here on the new site; eventually the old website will be taken down. These pieces are some of the ones I am most proud of. Perhaps that sounds odd to say about writing that came from grief. However, to me they are a documentation of my love for a woman I was privileged to call my mother-in-law. I had nineteen years of knowing her, and they weren’t enough.

Every day something makes me think of her.
It might be the necklace I wear that was hers.
It might be my daughter’s round face which looks so much like Barbara’s.
A milestone for Tristan,
a family gathering,
any holiday,
my spring garden,
a pretty set of linens,
a family vacation,
Colin’s essay about making snow ice cream with her…
it’s anything.
I think of her all the time,
and I cry.

A psychologist’s perspective on guilt vs. regret

February 7th, 2011 § 31 comments

I’ve written previously about my decision to have my ovaries removed two years ago in order to (hopefully) decrease the likelihood that my breast cancer will recur (“The Impetus of Fear”). Though I tested negative for the BRCA-1 and BRCA-2 genes, my hormone receptor positive cancer feeds off of the hormones that my ovaries produced. To significantly reduce the amount of those hormones circulating in my body (as a pre-menopausal woman of 38) I decided to have a salpingo-oophorectomy (surgical removal of my Fallopian tubes and ovaries). I recovered from the surgery itself within two weeks; the effects of plummeting into menopause overnight have been longer-lasting and in some cases, quite devastating.

As I do with almost any issue in my life, I have repeatedly talked to my mother, Dr. Rita Bonchek, about the ramifications of my decision. This angst has led to many talks about the difference between regret and guilt. As a psychologist specializing in issues of grief, loss, death, and dying for twenty years, she always has a keen ability to separate out what appear to be muddled feelings. She often has ways of explaining complicated topics in easy-to-understand terms and using real-life examples to illustrate her points. She and I have collaborated here to present some thoughts on these two emotions. The ideas on the differences between guilt and regret are hers; I have pushed her to explain things as fully as possible and helped with some of the re-writing.

We hope that they will help you to think more clearly about actions in your life and the emotions you have about them. We look forward to hearing your comments and any follow-up questions you have. Because my mom is not on Twitter, if you have any questions for her, it’s best to put them in a comment below; I’ll post her answers for everyone to read, too. This is meant as an introduction to these two emotions, not a comprehensive analysis of them.

………………………………….

People use the word “guilt” more often than is appropriate. Improperly using the word “guilt” can result in unnecessary emotional distress and harsh self-criticism. The word “guilt” refers to something you did, something which you feel you shouldn’t have done because it was morally or legally wrong. But what if the experience you feel guilty about was not something you caused or had control over? Then you would feel regret, not guilt.

Here is an actual situation: Ann1 was referred by her family doctor for grief counseling. She was unable to cope with her persistent feelings of guilt related to her husband’s death several months prior. Bob was diagnosed with a terminal illness and he was bed-ridden. He needed constant care and attention which was mainly provided for by his wife. Bob was hospitalized for three weeks prior to his death. Ann was with him throughout that time as well.

On the day of Bob’s death, his wife left the hospital room to use the bathroom. When she returned to the room, the nurse told her that Bob had died in her absence. Ann was overcome with feelings of what she termed “guilt” and punished herself for not having been with Bob at the time of his death. For months she could not function and was preoccupied with thinking how terrible she was in being absent when her husband died. She mentally punished herself for breaking the vow she had made to herself to be with him when he died. Instead of focusing on the 99% of the time she had cared for him while he was ill, she focused on the last minutes he lived.

Why shouldn’t Ann feel guilty? Because she did not do anything that caused her husband’s death; she was not there. If Ann had asked the nurse whether it was “safe” for her to leave for a few minutes and the nurse had cautioned her that Bob could die at any time, and then Ann chose to leave, then she could justly experience guilt because she ignored information indicating he could die during the time she was away. In this alternate scenario, Ann had the personal responsibility for making the decision to go, she had control of making the decision that resulted in her absence, and could therefore justly experience feelings of guilt. As a counselor, if someone is justifiably guilty for an action, I would advise them to make a confession, offer an apology, take responsbility, and — if possible– make reparations.

By disproportionately magnifying these few minutes to overshadow all of the months of care Ann had given Bob, the result was that she could not forgive herself. After discussing the difference between regret and guilt, Ann came to see that there was, in fact, nothing to forgive. She understood that she was only responsible for her own actions; Bob didn’t die because she left the room. By reframing the circumstances of Bob’s death, Ann was better able to properly grieve her loss and move on afterwards.

Though Ann did not experience guilt, she did have regret, a universal experience.  Regret refers to circumstances beyond one’s personal control. An unidentified author defined regret as “distress over a desire unfulfilled.” Regrets can pertain to decisions made concerning: education (not getting a degree), career (working at a job that offered good income but no personal satisfaction), marriage (married too young), raising children (being too permissive), medical decisions (sterilization), etc. These and other decisions can be considered mistakes.2

As an emotional response to a distressing experience, the sound of the word “guilt” is harsher and more of a self-reproach than the word “regret.” If you say, “I feel so guilty” you should make sure that the deed and circumstances surrounding it actually warrant your feeling of guilt rather than regret.

Dr. Rita Bonchek has a Ph.D. in educational psychology. She spent twenty years in private practice.

  1. names have been changed []
  2. Most often, individuals regret what they haven’t done moreso than what they have done. Often, people regret not taking chances moreso than regretting the chances they actually took. []

Living with Uncertainty

January 16th, 2011 § 2 comments

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing, living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

October 27, 2010

Things don’t happen for a reason

January 16th, 2011 § 19 comments

November 8, 2010

One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.

“I think everything happens for a reason,” she said.

“No they don’t!” I reflexively argued with the screen.

“Why does that make you so upset?” Clarke asked.

“Because it’s just a way that this woman is rationalizing why this bad thing— elimination from a contest she’s competing in— is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case.” I said.

I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.

I just don’t believe it. And I don’t want you to believe it about my life, either.

I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.

My attitude?

Don’t give away the credit.

Don’t minimize the hurt or disappointment.

Don’t rationalize why it isn’t as a big a deal as it is.

There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.

And I just don’t believe that.

Through the front door

December 26th, 2010 § 6 comments

I don’t know what it’s going to feel like to walk into the house.

Her house.

It’s been 14 months since my mother-in-law died and in a few hours I’m going to walk into the house that was the last place she slept before she died. The bed she slept in will be there. All of her Christmas decorations. Her towels. Her dishes. All of her things are going to be there.

Christmas has been strange already.

I didn’t send her my itinerary, of course.

I didn’t call her on Christmas Day to thank her for a bounty of presents for the children.

I didn’t call her to tell her about the bracelet Clarke bought for me that I know she would have loved.

There are so many things I didn’t do—and then there are the things I am doing:

I think about what it will be like to walk over the threshold and into the foyer and know she isn’t going to be there to welcome me.

I think about the Christmases past and can’t decide whether to laugh or cry.

I can’t imagine what it’s going to feel like to be in her house without her. There will be nineteen of us together this year. One of my nephews was two days old when she died. One of my nieces wasn’t even born yet. And I know that every time I hold those babies part of me will be treasuring that feeling for Barbara, wishing she were there with us, doing what she loved most: being with her family and snuggling with her grandchildren.

I miss you, Barbara. I don’t cry every day anymore. But I still cry often. And this time of year, perhaps more than any other, just feels empty without you.

I was in Wyoming this past Spring at the court hearing for the man who was driving the truck that hit Barbara’s car and killed her. On a cold Spring dayI was in a car when I went over the exact place she died. It was a spot on a highway, a piece of asphalt in the midst of expansive vistas filled with mule deer and brown grasses. When I passed over that spot, identifiable by the mile marker on the side of the road I waited for it—something. I waited for a shift, a tingling, a sign that it was special. I wanted there to be something so that everyone who passed that mile marker knew that right there, at that spot, one of the most special people in my world died.

And yet, it was just road. Nothing happened. No one would have known.

This trip is different, though. Each and every one of us is going to feel the seismic shift when we walk through that front door this holiday season. In the same blink of an eye it took to cross the spot where she died, I will walk through the doorway and into her house.

It’s time. It’s time to feel that shift.

We keep moving on, but moving on does not mean forgetting. Moving on means weaving the feelings of grief and pain and sadness into our everyday lives.

We must keep going. We have kept going this year.

But it’s not the same. It never will be.

Is it wrong to be sad on Christmas? (Mourning the life I thought I’d have)

December 24th, 2010 § 4 comments

Originally written December 25, 2008

(three weeks after my salpingo-oophorectomy and two years after my diagnosis of breast cancer. This was actually the first blogpost I ever wrote.)

I’ve only cried once today. That’s not too bad. But the day is not yet done. Today, again, I’m thinking of the things that cancer has taken from me. First, let me say that I am well aware of the blessings I have. I remember them each and every minute of every day. They are what keeps me going, keeps me fighting. But today, again, I’m pulled into what’s gone, what’s irretrievable, what’s changed.

The body parts are gone, of course. My feeling of immortality. Of safety, of security. I’m vulnerable now. And I feel it. Part of me wants to blaze down I-95 at 100 miles an hour because I’ve stared down cancer, so what can touch me now? Taking risks is a popular grief reaction. On the other hand, a part of me wants to curl up in bed and not come out.

Today, on Christmas, when the childlike wonder is all around, I feel like I am watching it from high above me, as it happens TO ME, around me. I smile, I do what I am supposed to do, I play the “Santa game” with my children. I eat delicious food. I gather up the gift wrap strewn about the living room. I pile the presents in the kids’ rooms. I pack their suitcases for their 3:30 a.m. wakeup for their winter vacation. Half my family is leaving me tomorrow. They’ll be back, of course, but they are leaving. And while they are gone I will ponder the sadness that has settled like a cloud since my latest surgery almost a month ago.

I know I’ll be fine… everyone tells me so, as if to will it to be that way. Even in my darkest moments I know it is only temporary. But I am angry at cancer. Angry at the bad twist of fate that makes me unable to travel this year, unable to be myself, unable to shake this feeling that the dark cloud just seems to keep following me, like those creepy paintings in the museum whose eyes seem to follow your every move.

And knowing the other people who are similarly sad today, those who are remembering loved ones lost, and those who are suffering in pain, and those who will head in for more chemo and surgery and therapies before the year is out are also forever changed by the great equalizer of cancer.

To anyone who reads this and thinks it sounds so odd, so foreign– something that happens to “someone else”… I am so happy for you. I am jealous of you. I remember that feeling, but I am almost getting to the point where I am unable to remember it. I never thought it would be me thinking this way, feeling this way. But it is me. And it’s taking a long time to grieve for that life I thought I would have.

Maybe that’s what it is.

I’m in mourning.

I’m mourning the life I thought I would have.

And only time can help that.1

  1. I should say that the surgical menopause had a terrible biochemical effect on me. I went into a deep depression for a few months while my body adjusted to the lack of hormones. I had no idea that would happen; no one had warned me. That surprise, combined with a longer physical recovery than I’d been led to believe I would have, put me in a pretty dark place. []

Next

December 15th, 2010 § 1 comment

5.2.2009

He caught me before I could put on my bright smile, restore the gleam in my eye, the flirt in my face.
He caught me lost in my disconnect, my swimming, floating, drowning.

“Are you okay?” he asked gently.
So gently I almost didn’t hear.
So gently it didn’t rouse me.
I stayed in that liminal state, half awake, half asleep.
Dozing in daylight.
Autopilot.
“I’m fine, thank you. Just tired,” I covered.
“I just wondered,” he said. “You don’t seem like yourself.”
“Thank you. Thank you for worrying. That’s so kind.”

Am I so transparent, I wondered. So transparent that this man who doesn’t even know my name can tell without a word when I’m not feeling well?

I turned my attention back to him.

“How can I help you?” he asked as someone approached and interrupted our conversation.

“Muenster cheese, please,” I requested of him. “A half pound.”

Empty Space

December 13th, 2010 § 4 comments

Clarke and I attended a family wedding this weekend. One of his first cousins got married and my parents stayed with the kids while we drove to the event. Four of Clarke’s brothers and sisters attended and we were able to see many family members we hadn’t seen since the memorial service for Barbara a little over a year ago.

Barbara’s three sisters were there, of course, and one of her brothers. It’s a large family and we all have a great time visiting when we have occasions to see each other. It was fantastic to have a happy reason to gather; so often as we age it seems we only see each other to mourn.

And while we were happy, while we loved seeing a young bride and groom start their lives together, we couldn’t help but ache every moment for the special one who was not there. Barbara’s absence hung over the weekend. For the first time since she died I didn’t have to distinguish one “Mrs. Clarke Adams” from the other. We’d had the same name for the last 13 years and over the weekend I missed the confusion it often gave us at check-in time or seating assignments for dinner.

It wasn’t until the groom danced with his mother (Barbara’s sister) that the emptiness became overwhelming. This particular sister resembles Barbara the most: her eyes, her expressions, her hair. And as she danced with her son we all could not help but cry: my youngest brother-in-law, still in his 20s, would not have that dance with his mother when he gets married.

I talked about Barbara a lot this weekend; I couldn’t help it.

My anger is still here: she should be here enjoying these things. It is someone else’s fault she isn’t (see here for original newspaper piece and here for my piece about the court hearing). Somehow, to me, that makes it worse. Her body didn’t fail, she didn’t get a disease. Someone made an egregious decision and she paid the price with her life.

I’m not over that anger and I don’t think I ever will be. Every happy event is one we are not sharing with her. And while no one’s life can go on forever, when it’s taken without warning and too soon it takes time to adjust to. It’s too much to swallow in one gulp, and this bitter taste is dissolving very slowly. This weekend was hard. Christmas, which has always been synonymous with Barbara, is going to be even harder. I know there are many people reading this who are grieving losses this year, and the holidays are always difficult. My heart goes out to you all.

Just a spot (the court hearing)

December 13th, 2010 § 1 comment

Originally published on www.lisabonchekadams.com on March 9, 2010

Now that I have been writing this blog, family and friends sometimes ask me to write something and speak at special occasions. Yet, earlier today in court and at Barbara’s memorial service a few months ago I remained mum.

While my love for her is obvious, my respect, my admiration, my sense of loss, I remained an observer while the truck driver who came into my in-laws’ lane and hit them head-on appeared in court today for his change of plea hearing.

Family members are allowed to read victim impact statements. Spread across the entire back row of the small Western courtroom we sat in wooden pews. Her six children, her husband, one son’s girlfriend, and me.

The nine of us sat as an army.

Wearing somber colors, we sat clutching tissues.
We cried.
We squirmed.
We jiggled our legs with nervousness and anticipation.

We stared at the back of that truck driver’s head.
We stared at the back of his sister’s head.
His mother’s. His father’s.

At some point when the judge was deliberating I couldn’t take it anymore.

And then I did something that’s become routine for me.
I picked a spot on the ceiling and I stared at it.

I’ve come to do this as my coping mechanism for pain,
for feelings of claustrophobia,
for enduring the seemingly unendurable moments
I’ve had so many of the past few years.

When I’ve been in pain,
in agony,
sick,
nauseated from chemo,
embarrassed during procedures,
I pick a spot on the ceiling.

And I don’t let it go.
I don’t let my gaze waver.

In some medical offices I visited repeatedly I used the same spot:
A sticker on the ceiling indicating a light switch,
A brown spot from water damage,
An intersection of metal latticework that if I stared hard enough
seemed to have a dot in the middle.

And so today,
when it seemed the plea bargain
would not, could not, be changed,
tossed,
reconsidered, or
modified,
I picked my spot.

I picked my spot and did not let it go.

I heard the sniffles,
the sobs,
the exhales of my loved ones realizing the punishment that seems so inadequate would stand.

My brothers and sisters-in-law didn’t need my words today.
Theirs were so poignant,
so heartbreaking,
so true.

While the words swirled inside my head,
this was their day to describe their pain.
While I come here and do it weekly,
it was their turn today.

I was so proud of them.
Barbara would have been so proud too.

That’s the irony, of course:
their finest moments,
their displays of character and strength,
have come to the forefront in her absence–
because of her absence.

And everywhere we go people say
that her six children are a testament to the mother she was.
And they are.
A family unit so strong,
so united,
so bereft at her loss.

Twice today we drove on the very highway where the car crash happened.
Twice today we crossed the very place where she last lived.

And as we approached the spot both times I sat in the moving car and waited.
I waited for there to be some type of shift,
some type of energy.
Some kind of
SOMETHING.

But it was just road.
Just pavement.
Just a place on a road.
And both times I could not accept it.

It did not seem real.
Our lives changed on that spot.
Her life ended on that spot.

In the middle of the expansive countryside dotted with wind turbines and packs of mule deer
dearest Barbara departed this world.

I can’t write enough words for her.
I can’t capture the ache and sadness I feel.
Not only for myself–never only for myself– but so much for my children…
for all of her grandchildren who missed years of knowing her,
many of whom will never know her.

I’ll never write much of what I want to say.
I won’t put it here where it could be painful for those who miss her and love her.
I can’t write everything I want to about the man who did this.
I don’t want to undermine any future court activity.

Sometimes the hardest thing is knowing when to keep quiet.
I’m working on it.
Truly.

Tonight I fly thousands of feet in the air
as the plane shakes and trembles
with turbulence.

And while I hate to fly
I wouldn’t have been anywhere else today.

So while the plane lurches a bit
I’m going to turn off the computer,
pick my spot somewhere on the ceiling,
and I’m going to stare at it.
And I’m not going to let it go.

Because I can get through this.
I can.
I can get through this.
We can.

My Interview in The Washington Post: Elizabeth Edwards and the Cancer Question

December 8th, 2010 § 6 comments

Today I was interviewed in The Washington Post about my perspective on the news of Elizabeth Edwards’s death. Melissa Bell’s article is entitled  “Elizabeth Edwards and the cancer question.” Click on the title to read the piece on the Post website.

Thanks so much to all of you who read the two pieces I wrote about Ms. Edwards and passed them on to friends:

On Resilience and Why I’m Crying.

Your comments mean so much.

On Resilience: Thoughts on Elizabeth Edwards, my mother, and me

December 7th, 2010 § 12 comments

Doctors diagnosed my mother with breast cancer the exact same day Elizabeth Edwards heard those words in November, 2004.

Two years later, I too received a diagnosis of breast cancer.1

After my diagnosis I went for consultations with two oncologists. Each doctor handed me two pieces of paper displaying bar graphs of the risk of my cancer returning and the risk that I would die from my cancer. These risks were broken down and calculated for four separate conditions: 1)  if I did nothing, 2) if I received chemotherapy, 3) if I received hormonal therapy, and 4) if I received “combined” therapy (chemotherapy + hormonal therapy). On the top of the stark white pieces of paper in my doctor’s writing it says “Survival” on one and “Recurrence” on the other.

I made my decision rather easily: to treat my Stage II cancer I opted for a double mastectomy2, chemotherapy, and adjuvant hormonal therapy3. I had a husband and three young children; I wasn’t taking any chances– I would do whatever it took to get me into remission and give me the best possible chance of survival.

My mother, because of the particulars of her Stage III cancer opted for a lumpectomy, radiation, and chemotherapy.4

And so, my mother and I had different treatment plans. But while our treatment protocols differed, we both required the same character trait to get us through: resilience. Appropriately, this is also the title of Elizabeth Edwards’s book.

Resilience has carried me through my mother’s diagnosis and mine. My son Tristan’s surgeries and treatments for congenital spine and hand deformities. The sudden death of my beloved mother-in-law in a car crash one year ago.

Resilience is the ability to bounce back, the ability to find strength and reserves when you think there are none, the guts to wake up each morning and, knowing something else might be just around the corner, say, “Okay, world, bring it on. I can take it.”

It’s also the manner in which you take it. Do you feel defeated? Resigned? Depressed? Angry? Do you channel those negative emotions into something positive?

Some people believe that negative things like cancer and grief are gifts. Books I’ve seen preach that you should change your thinking: these events are not traumas or tragedies; they are gifts, positive intrusions into your life.

I don’t think so.

I don’t think cancer is a gift.
I don’t think grief is an opportunity.

I think these things suck.
I think they hurt.

There’s a difference between thought and action: what you do with those feelings is what counts.

People don’t need to have the same beliefs or think the same way to feel a magnetic pull to one another.

Resilience is like a magnetic pull to life, a force that keeps me coming back for more
with grit,
determination,
heart,
hope.

Resilience whispers in my ear,
“You can do it.
Just keep going.
One foot in front of the other.

It will get better.
And, if it doesn’t, well…
you can take it.
Bring it on.”

Elizabeth Edwards reached many people because she was in the public eye, but inspirational people also live quiet lives. We can be inspired by Edwards’s grace and courage as she dealt with the challenging parts of her life in the same way we can find inspirational people around us each and every day. These are all people we can connect with and learn from. In doing so, we better ourselves. In doing that, we honor their struggle.

My mother is alive, and in remission. And the joy that I feel about having my own mother here is shared in equal measure by the sorrow I feel for Ms. Edwards’s three living children, Catharine, Emma Claire, and Jack, over the loss of their mother.5

  1. genetic testing later showed I do not carry the BRCA-1 or BRCA-2 genetic mutation []
  2. I also opted for recontruction with silicone implants []
  3. first, Tamoxifen, then later, after surgical removal of my ovaries and Fallopian tubes, Arimidex []
  4. because her cancer was HER-2 Neu positive she also received Herceptin []
  5. her 4th child, Wade, died in a car crash in 1996 []

Why I’m crying (Elizabeth Edwards died today)

December 7th, 2010 § 5 comments

I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.

So why am I sitting with tears in my eyes because she has died?

I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.

Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?

I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.

It’s the truth. It’s my truth.

Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.

People tell me: stay strong, just think positive, you can’t generalize from her situation.

I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.

I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.”1 Things change quickly, cancer can recur when you least expect it.

I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.

I grieve for that hope, now gone.

  1. http://www.dailykos.com/comments/2006/11/20/144410/37/59#c59 []

Growing Pains and Psychological Stretch Marks

December 1st, 2010 § 0 comments

August 18, 2009

Summers bring change. The end of the summer signals the start of school for children, and for some it’s their first day of school ever. My youngest child, Tristan, will start nursery school in a few weeks. This month has brought the inevitable developmental milestones of potty training and sleeping in a big bed. My oldest child, Paige, will start middle school. She went to sleepaway camp for the first time this summer (and loved it). My middle child lost his first two teeth.

As I sit and watch and listen to the waves on our beach vacation I know the summer is drawing to a close. Some of you reading this are already sending your children back to school.

The months and years go by. Like all of you I mourn the quick passage of time. “Where did the summer go?” I hear my friends asking. Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, or reading that book a friend recommended; many things went undone in the last eight weeks.

Maybe you were lazy, maybe other things came up, maybe you were preoccupied with family obligations. Maybe you had an unexpected cancer diagnosis, maybe you got the flu, maybe your parents’ health was sub-par.

Regardless the reason, there can be a bit of disappointment when summer ends. The children we send back are taller, older, more mature. They’ve had lots of experiences to tell their friends about. Maybe they’re in a new school, maybe they’re now the oldest in school, maybe they’re now the youngest. New bus routes, new starting times, new friends, new backpacks, new teachers.

Some children will be starting back with a new experience to tell their teacher and friends: “This summer my mommy got cancer.” That one will not be an isolated instance, unfortunately; women around the country will be sending children to school with that summer report.

Growth happens in fits and spurts, not with smooth sliding grace.

With each phase comes

pain,

discomfort,

unease.

Restlessness,

sleeplessness,

yearning.

When I had the tissue expanders in my chest to make room for the implants that would replace my breasts after the mastectomies, every week my plastic surgeon would add to them. And each time after a “fill” they would feel tight. The skin would not be big enough for the volume inside, and it would react. The skin would feel the pressure and grow, that was the point of the process. Until the skin could replicate there was achiness, tightness, a ripping or tearing feeling.

A similar sensation happens during the days during pregnancy when you feel your belly just can’t accommodate the growing baby inside it. And yet it does. If it happens too fast you get a stretch mark, a sign your skin just couldn’t keep up. The growth was too rapid, too harsh, too vigorous.

I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.

What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not. We do them no favors by trying to protect them, coddle them, and keep them young. We give them wings to fly when we give them tools to be

confident

and caring

and inquisitive

and trusting

individuals.

I am moved to tears as I watch my children grow.

I am moved by the succession of infancy, childhood, and adolescence.

I know that as a mother I lack many skills I wish I had.

But I also know that the words I have written in my blogs and essays will one day be a gift to them too.

Not a gift to the children that they are, but instead a gift to the adults that I am raising them to be.

Each August or September as they go back to school I marvel that another school year has passed and yet another is here.

I mark time differently now. I mark anniversaries not of weddings, but since diagnosis, since mastectomies, since chemotherapy began and since it ended, since implants, since Tamoxifen, since Arimidex, since oophorectomy. They are not just dates; they have meaning. They are meaningful for doctor visits and tests I must have done and dates I can stop taking drugs and dates I must know for other treatments.

No matter how you measure time it always goes too fast.

The growth happens too fast.

And the growing pains hurt for me.

The stretch marks might be invisible this fall, but they are surely there.

Cranberry ice

November 25th, 2010 § 7 comments

After my post yesterday about missing loved ones at the Thanksgiving table, many people were intrigued by the Adams family tradition of Cranberry Ice. I, too, had never heard of it prior to meeting Barbara. Once you’ve had it, it easily becomes a regular addition to your table. I am sharing it here so that others may decide to fold it into their holiday celebrations, too (I think it is a lovely addition to Christmas dinner, so maybe you want to give it a try then).

The way we serve it is as a side dish, in place of cranberry sauce. The tart, sweet, cool flavor is delightful.

I like to make a double recipe so there are leftovers… I am giving the instructions for that; if you want to halve it, you may. Because you need to beat it with a mixer as it freezes, don’t make it late at night.

You will need:

2 bags of fresh cranberries

2 packets Knox gelatin

Lemon juice

2 cups of sugar

2 cups of water

Freezer-safe bowl and a food mill, ricer, or strainer

Directions:

Boil the cranberries fully until the skins fully split. Drain the cranberries and run them through a ricer, food mill, or strainer to remove the skins. (I use a food mill that Barbara gave me. It has a hand crank on the top and you turn it around and around and the skinned cranberry puree drops out the bottom. A more updated version is here). Once you have all of the cranberry puree in a freezer-safe bowl, set aside. Take the 2 packets of gelatin and dissolve in 2 cups of water. Add this to the cranberries. Add about 2 cups of sugar (less if you like it very tart). Then add a bit of lemon juice to taste.

Take the bowl and put it in the freezer. As it freezes, take it out a few times (2-3) and beat with electric beaters for about 30 seconds to fluff it up. This will keep the texture airier. If you don’t do this, the consistency will be far too dense and hard. Once frozen, serve with your meal using an ice cream scoop. It doesn’t melt immediately because of the gelatin. Barbara always served in lovely cut-glass footed bowls. I haven’t found ones I like yet, so mine was served in regular bowls today.

Missing and mourning while others celebrate and complain

November 24th, 2010 § 8 comments

I have many friends who have lost family members this year. My own devastating loss, the death of my beloved mother-in law, was only 14 months ago. The death of someone you love is never easy, but I think holidays are particularly painful times. Not only do you miss the physical presence of the person, but there are often so many reminders of special times you have had together, of traditions you shared.

While we grieve for the physical absence of the person at our family gatherings or the telephone calls we share, what we also grieve is the loss of future time together. That is, we not only grieve the person we’ve lost, we mourn the future events that we will not be able to share with them.

I didn’t spend many Thanksgivings with Barbara; Turkey Day is almost always a holiday spent with my side of the family (Christmas is always spent with Clarke’s family). There were a few years my parents and in-laws both lived in Pennsylvania; back then Clarke and I were able to see both sides of the family in the same Thanksgiving weekend.

Barbara loved to set a good table; she always had special items on the table that had been handed down to her — china, silver, serving pieces. But more than any other Thanksgiving tradition, the one that I associate with her is Cranberry Ice.

Cranberry ice is a sort of cranberry sorbet, an icy, tart, frozen taste sensation. Perhaps originally an intermezzo, it evolved to take the place of traditional cranberry sauce at the table and now is eaten along side the turkey and fixings. Barbara always had special small cut-glass footed bowls to hold it; I haven’t yet found some of my own. Last year, in a loving tribute to her, I made my own cranberry ice for the first time using the food mill she’s put in my stocking years ago. The mill sat unopened in my cabinet until last year. I pulled it out and held it then, realizing as I held it that her own hands had held the package. She had shopped for it, paid for it, put it in my stocking. I touched that plastic container and all I felt was cold. Without her, it wouldn’t be the same.

My daughter (pictured above, ten years ago, with Barbara) will be staying home from school today recovering from oral surgery. I think it would be really nice to make the cranberry ice together, just the two of us, while the boys are at school. Traditions carry on, however painful it is.

It’s important to remember that while some will be complaining about their relatives while spending time together this week, some of us would do anything to have our loved ones back with us to share the day. I feel sure a bit of sensitivity to the emotional turmoil some may be experiencing would be welcomed by your friends or family members who grieve this week.

Every day is hard when you miss someone; a holiday is especially so.


If You Knew Suzy, if you knew me

November 23rd, 2010 § 1 comment

Originally published June 24, 2010

There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.

If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.

Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.

I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s very date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.

Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.

I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.

I fear that what happened to Suzy will happen to me:

my cancer will return.

I will have to leave the ones I love.

I will go “unknown.”

My children and my spouse will have to care for me.

My needs will impinge on their worlds.

The day-to-day caretaking will overshadow my life, and who I was.

I will die before I have done all that I want to do, see all that I want to see.

As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.

Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.

It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way…  these are things that are “significant.”

I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?

Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?

Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?

If I don’t do it, who will do it for me?

And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?

My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:

If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?

What if you die without being truly understood?

Would that be a life wasted?

If you don’t say things for yourself can you count on others to express them for you?

Further, can anyone really know anyone else in her entirety?

After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.

Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.

I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.

I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.

Bye-bye Grandma

November 21st, 2010 § 3 comments

The moments catch me off-guard,
like my brother used to do
when we were kids.

He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.

He would leap out,
scaring me,
terrifying me,
and I would scream
and shake
and cry.

That’s what these moments do:
they make me
scream
and shake
and cry.

Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.

“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”

And so we cried.
Together.
And we talked.
Together.

Tonight
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
emotional assault.

I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.

I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.

But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”

There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.

I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
waiting,
lurking,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.

And so I acted just like I did when I was a
child and my brother scared me.
I screamed.
I shook.
And I cried.

I vowed not to let my guard down like that
Again.

I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.

And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.

It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.

One day
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.

Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…

It makes me want to
scream,
and shake,
and cry.

Things don’t happen for a reason

November 8th, 2010 § 1 comment

One of the phrases I heard often during the emotional events of the past few years is “Things happen for a reason.” The other night while Clarke and I were watching a reality show one of the contestants spoke the same phrase as she predicted elimination from the show.

“I think everything happens for a reason,” she said.

“No they don’t!” I reflexively argued with the screen.

“Why does that make you so upset?” Clarke asked.

“Because it’s just a way that this woman is rationalizing why this bad thing– elimination from a contest she’s competing in– is okay. She’s trying to tell herself that things really aren’t as bad as they are. She’s trying to console herself that there is a purpose in her suffering… that it will lead to something bigger and better, and that is just not necessarily the case!” I said.

I don’t think things happen for a reason and I find it unsettling when people want to tell me that cancer, or my mother-in-law’s death, or anything that has been a challenge has happened as part of some grand plan for something better.

I just don’t believe it. And I don’t want you to believe it about my life, either.

I think things just happen — and when they do, you have to decide how you are going to handle them. Those actions, those responses, can teach you lessons, but they are lessons you teach yourself. You can grow, get stronger, do something that you otherwise never would have. Alternatively, you might learn that you made a mistake and should deal with a situation differently the next time it comes up.

My attitude?

Don’t give away the credit.

Don’t minimize the hurt or disappointment.

Don’t rationalize why it isn’t as a big a deal as it is.

There isn’t necessarily a purpose in suffering; it’s not part of a causal narrative that “passing the test” will get you to the next step. You make your own tests, you find your own lessons. But using the word reason implies that it was given to you, designed for you.

And I just don’t believe that.

Living with uncertainty

October 27th, 2010 § 0 comments

My last post (“These things are not wrapped in a pink ribbon”) was special. It was the hardest for me to post, the most personal. I said things in it I hadn’t shared with anyone; I described my feelings in my typical honest way. Readers loved it and embraced my effort. My heart soared.

I never want people to feel sorry for me– I don’t feel sorry for myself. I feel lucky. I live a great life now; I’ve had a great life so far. I’ve learned a lot along the way and gotten stronger and stretched myself in ways I could not have predicted.

Sometimes I wake up in the middle of the night panicked. The other night my worries about Tristan came to the surface. This week I have been working to get him additional physical and occupational therapy sessions from our town in preparation for kindergarten next year (if you don’t know about Tristan’s physical problems you can read about them here).

At 1:47 I lay in the dark wondering, “Who will care for this boy if something happened to me? What if I die — can anyone be his advocate the way I am?” I pondered that question for some time. I thought of the family in a documentary I watched two weeks ago called Monica and David. The film’s subjects have Down’s Syndrome and recently got married. They live in Florida with Monica’s parents in a condominium. Monica’s parents should be retired by now, enjoying their golden years. Instead, they have a full-time job caring for their adult daughter and her husband.

When I was watching the film I kept thinking about the same issue: who would help Monica and David if something catastrophic happened to Monica’s parents?

I realized that her parents have somehow come to terms with uncertainty, as we all must.

In graduate school my Ph.D. proposal dealt with management consultants and their claims of expertise. How did this group of professionals carve out a niche in the business market and claim that only they were qualified to objectively advise companies on what they should do to not only survive, but thrive? The certification of knowledge intrigued me. I never finished my dissertation, but many themes of study from years ago have stayed with me.

I never could have predicted that I’d be thinking about uncertainty in terms of cancer. I never could have known that those advising me on decisions would be oncologists and surgeons.

But just as Monica’s parents have learned to deal with that uncertainty, so must I.

Betty Rollin wrote that having cancer means being a little bit afraid at least some of the time. I know that’s true. But learning to manage uncertainty is a part of everyone’s life.

I think of individuals with obsessive-compulsive disorder that I talked about in a blogpost on the shows Hoarders and Obsessed. The specific type of therapy used in Obsessed (cognitive behavioral therapy) has been a great mental tool for me. Psychologists force affected individuals to “sit with their anxiety” until it reduces by half. In a nutshell, repeated exposures to the panic-inducing event prove to the patient that (the world will not end, they will not die, their loved one will not be harmed) if they do not give in to their compulsions.

The lesson? The body cannot exist in a heightened state of anxiety indefinitely. To cope, to survive, the level must (and therefore will) come down.

I take that insight and the examples I’ve seen and incorporate them into my life. I know that at each stage of my diagnosis and treatment for cancer I panicked. When we found out Tristan had physical problems I was terrified at the possible outcomes for what his disabilities could be (most of them thankfully not realized). But that seems to be a comfortable pattern for me: get new information, freak out for 24 hours, wake up and get to work learning, dealing,living. Taking our fears, whatever they may be, and learning how to better work through them can only help us… for uncertainty is a given.

Eleven

October 28th, 2009 § 2 comments

I remember it so well.

I hope I never forget.

Those feelings I had eleven years ago as I had my first contractions and went into labor with my first child, Paige.

My husband and I were living in New York City.

I was taking a long walk home after an appointment when I

first felt the tightening begin.

It was three o’clock in the afternoon of October 27th.

By dinnertime I was at the hospital.

By evening I was home again.

Too soon, they told me.

Could be hours,

could be a day or two.

By midnight I was back at the hospital again,

This time for good.

All night we waited.

All night I labored.

And at 8:06 a.m. she arrived.

My daughter.

I left the hospital two days later in typical New York fashion:

not with a car seat,

but instead with sweet P bundled in a carriage.

We walked home the 4 blocks to our one bedroom apartment.

Two days later we emerged to show her the NYC marathon.

As every parent does,

I fell in love.

As Clarke worked 80+ hour weeks,

She and I were buddies,

my city baby and I.

For hours we would explore the city.

Everywhere I went, so too did she.

When she was one year old I had medical problems;

an autoimmune disease which attacked my skin,

pigmenting it bright red,

thickening the soles of my feet

and palms of my hands

until I could hardly use them.

Hours were spent in the waiting rooms of doctors

before I was correctly diagnosed.

The treatments were time-consuming.

Paige came to every appointment with me.

It never occurred to me to get a babysitter.

She just came along.

As she grew I just knew she was something special.

She was always perceptive.

Verbal.

Bright.

At sixteen months she sang the alphabet.

By eighteen months we were having conversations.

Once we started we never stopped.

Paige “gets it.” She’s an old soul.

She is so mature it is sometimes hard to remember her real age.

I am so lucky.

I am so lucky she’s mine.

And I tell her so all the time.

I don’t know what she’s going to do when she grows up.

But I know what she’s going to be –

All the things she already is:

smart

sensitive

loving

confident

grounded

brave

funny

creative

talented

focused &

lovely.

Paige has seen a lot in her few years.

More than I would have liked for her.

I wish I could have spared her some of the

difficult things we’ve gone through.

My medical diagnoses, especially cancer, and Tristan’s issues too.

There’s the box under Paige’s bed (“the box” 9.17.2009) –

The one Barbara gave her in anticipation of her birthday.

She knows what it is now.

It won’t be a surprise.

I know what she really wants for her birthday: she wants to have Grandma back. Alive.

Me too.

When Paige was 5

I got a call from the ski school in Jackson Hole.

“Paige is done skiing for the day,” they said cryptically,

“You should come get her.”

They wouldn’t give me details.

She’d fallen.

But they wouldn’t tell me anything.

Clarke was on the mountain skiing.

He was able to reach her first.

It was one of those times I marveled at how we existed before cell phones.

I made it to the medical clinic at the base of the mountain.

I walked through the swinging double doors.

I’ll never forget seeing Clarke and a doctor staring at x-rays

up on a lighted board.

It happened in slow motion…

I mouthed “Broken?”

and Clarke nodded.

My five year old had just broken her leg.

It was the first time I’d ridden in an ambulance.

I didn’t know the next time it would be my turn.

It was the first time there was a fracture.

I didn’t know the next time it would be my turn.

It all seemed so dramatic at the time.

Maybe being far away from home made it worse.

I had no idea I’d look back on that episode and think it was

literally “child’s play.”

After we finally got to the hospital and talked to an orthopedic

surgeon it was time to set the leg.

They’d given Paige pain medication and something to make her drowsy while they put the cast on.

Clarke and I were a few feet from the foot of her bed

talking about the logistics of getting her home on the airplane.

As she slipped off into a hazy slumber I saw her arm go up

into the air.

She slowly raised it, then her hand.

And then she made the sign language symbol for “I love you”:

Thumb, pointer, and pinkie extended out, middle and ring fingers

tucked back.

It was our signal.

I’d taught it to her as a toddler.

I wanted a way to tell her I loved her if I couldn’t be heard.

Across a crowded room, in a place that was quiet, or when she was nervous at a school performance,

I’d make the gesture for “I love you” and

she would know I was right there for her.

And so,

as she drifted off,

my five year old

told me she loved me,

that everything was going to be okay,

that this was all just a bump in the road,

all without saying a word.

Sweet P,

there are so many things I hope I’ve given you:

skills, characteristics and traits to

help you find your way in this world.

I hope I will have many more years to watch you grow

and see what you will do in the years ahead.

You make me proud,

you make me smile,

you make me laugh,

you make me cry.

Now, forever and always,

I believe in you.

May you someday know the joy that I have known having you as my daughter

and the special bond we will always share.

The love that Nana and I have,

now next to you and I…

I hope that you will have that gift

someday with a daughter too.

Happy birthday.


Obituary for Barbara Smith Adams

September 25th, 2009 § 1 comment

Obituary for Barbara Smith Adams

August 6, 1945 – September 16, 2009

Barbara Smith Adams, of Scottsdale, AZ and Jackson Hole, WY, died on September 16, 2009 in Kemmerer, Wyoming from injuries sustained in a car accident. She was 64 years old.

Barbara was raised with her siblings Daniel (deceased), Connie, Kathy, Ginny, David, and Bill in Lorain, Ohio. She was born on August 6, 1945 to Daniel and Helen Smith. She attended Denison University where she met and later married her husband of 41 years, Clarke Adams, who survives her.

Barbara was the heart and soul of a large family. She dedicated her life to raising her six children: Helen (Paul) Casseday, Clarke (Lisa), Sarah (Julian Lewis), Christopher (Abigail), David (Jessica), and Taylor.

Barbara doted on her grandchildren, recently adding a ninth grandchild two days before her death. She will be missed by them all: Jackson and Owen Adams (New York, NY), Benjamin and Ellianna Lewis (Phoenix, OR), Ryan and Emily Casseday (Anthem, AZ) and Paige, Colin and Tristan Adams (Darien, CT).

Barbara nurtured her children and grandchildren and her commitment to raise them with integrity and self-confidence has provided them with a foundation to weather this tragic loss. She loved to plan family get-togethers, especially the traditional family reunion in Jackson Hole each Christmas.

She leaves behind a loving and sorely bereft circle of family and friends. Her presence, love, and guidance will be missed by all who knew her.

There will be a memorial service to celebrate her life on October 9th at one o’clock at Brophy Chapel in Phoenix, AZ.

In lieu of flowers, donations can be made to Shriners Hospital for Children, Philadelphia, PA http://www.shrinershq.org/Hospitals/Philadelphia/ or the Alzheimer’s Association http://www.alz.org/index.asp

Playing it safe

September 21st, 2009 § 0 comments

Written September 21, 2009

The light turned yellow
And in that split second
When my foot came off the pedal
I had to choose its destination–
Back to speed or
To the brake.

Right or left.

Go or stop.

A moment in time.

Hesitate or act.

And in that fraction of a second
I thought of her–
Barbara.
Her life gone
In a crash
In a fraction of a second.

I played it safe.

Under the amber light
I stopped.

Safe
and
sound.

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