Even when I am alone

November 6th, 2013 § 23 comments

IMG_7108Even when I am alone
I teeter precariously over the right hand side of the bed.
On my left shoulder when I can,
When the pain is bearable,
When I can settle in for the night.

I still approach the precipice
Rather than opt for the safety of the middle place.
I act as if he is there with me
Taking space
And I, trying to make room,
Move to outer orbit,
As if that extra inch or two would matter.

Even on the occasions I am alone
I pretend as if I am not.

I go to places in my mind,
Wondering what it will be like
When that opposite side of the bed is empty
For him
And he teeters precariously near the edge unnecessarily,
Without me there to take up space.

No room for that in this (Six minutes)

May 15th, 2013 § 34 comments

IMG_5541I find myself in silence a lot,
Tuning out the noise.
No room for anything but thoughts.

I try to forget for a few minutes,
I stare at a spot on the wall.
I lose myself.
No clue how long it has been.

The clock says it’s been six minutes,
I am glad that they’ve gone by.
But then I realize I have wasted them:
Six minutes of my life.

I want them back,
Feel I should use them for something better,
Something constructive.

I am mad at myself:
That was a waste of time.
I want days of suffering to pass,
But I also know that this is the only time I have.

I take a trip inside my head
I don’t know where I go.
Somewhere else,
Anywhere else,
Far away from here.

If you’d let me, I would run away,
I would go find a way
To keep you safe from this,
Safely far from this.

Some days I long to tell you how I truly feel,
But there’s no room for that in this,
No room for that in this.

It is not a choice.
That I know.
And when I finally do go
It won’t be for lack of want, or heart, or strength.

When I die it will be because that is what cancer is,
This is what cancer does.

And when it comes to being fair,
There is no room for that in this,
No room for that in this.

 

 

 

Expiration date

April 28th, 2013 § 69 comments

Image 9It is easy to be happy when you are healthy.
It is harder to know that this may not be true much longer.

People love to casually say,
“Enjoy every moment” or
“We all die some day anyway” or
“Life is fleeting.”

I know this already.

And I know it in a different way.

I don’t need to be told to
fight the good fight to beat it
or the key is to just stay strong
or that it’s mind over matter
or that I should pray for a miracle
or that I will be cured.
That’s nonsense.
Scientifically impossible in my case.

And so, when you say,
“No, that can’t be true.
There must be something that will cure you,
If you want it/pray for it/think it will be so,
You can be healed,”
What you do is force me to assert my knowledge,
Insist upon my diagnosis,
Explain the desperate nature of my disease,
Spend my time defending my sentence.

I know it’s what you wish.
I know you insist because you want it to be the case.
I know you’re grasping at straws,
Wanting to reassure yourself that bad things won’t happen to you,
That bad things don’t happen to good people,
That something awful won’t happen to me.

Trust me, I wish for it too.
But these things do happen.
It has happened to me.

The truth is that wishes don’t count for anything when you’re placing them against cell biology.

I know many healthy people who say the passage of time is bittersweet.
It isn’t a competition but I can tell you that this passage of time is different.
If you could feel it for just a moment you would know.

There is a difference between
Distant,
Hypothetical,
Potential,
Maybe…
and reality.

I have learned that being nervous about test results,
Worrying,
Wondering,
are not the same as the reality.
Reality is having your oncologist walk in the room
and when you say to him, “How are you?”
and he says, “Not good,”
you naïvely think it must be a problem with him,
or his family and
instead he ducks his head,
takes a breath,
looks at you, and says,
“Your test results were not good.
Your tumor markers are up.”
He knows I know what this means.
He waits for a moment and says,
“I think you have a metastasis.”

A few minutes later he says,
“You need to go get a chest x-ray right now.
Go across the street,
I will come over to the hospital and look at it immediately.
Wait for me there.
Then you need to schedule a PET scan as soon as possible.
Have you had any other unusual pain?
A cough perhaps?”

The room spins, the world stops.
My life didn’t end in that moment, but life as I knew it ended for sure.

No turning back.
Reeling, processing, shock.

All you can do is let your jaw drop,
the tears fall,
your body shake,
crumple.

Slowly,
deliberately,
as I looked at him
in a way that I never had in the six years he had been my doctor,
the only words that came to my lips in response
were to repeat over
and
over
and
over
and
over
again:
“Fuck. Fuck. Fuck. Fuck.”

Because that’s the only word that could capture how angry
and scared
and angry
and surprised
and angry
and shocked
and angry
I was.

I never have liked the term “to expire” rather than “to die.”
I started thinking about these words though.

We all have an expiration date.

I’ve never thought of it like that before.

We all have one.

It is as if I’ve grabbed a carton of milk without looking.
I took the one in front I guess,
The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention.
Except I did pay attention.
I did.
I was always paying attention.
No one was more vigilant than I.

I want to put this carton back,
I want to say it’s not mine.
I want to scream it.
This must be for someone else.
The date is too soon but I can’t trade it in for a new one.
No givebacks.

 

The problem is
I don’t know exactly what the date says.

The land of topsy-turvy

March 18th, 2013 § 25 comments

Metastatic cancer is an introduction to topsy-turvy world.

Things I once counted down to now I must cheer.

The first time I was diagnosed with breast cancer (stage 2, in December of 2006), I counted my chemo treatments down. “Only  2 more adriamycin/cytoxans to go,” I might say, or “Only 4 Taxols left.”

Now I’m forced to be glad for the chemo rounds.

I started my 12th round of chemo yesterday, on Sunday the 17th. After being sick with a bad cold and stomach virus this week I’m feeling not-quite-ready to start again. I haven’t had enough time to rebound and my side effects are not as reduced as they traditionally have been. My feet and especially my hands are not in great shape and I’m limited as to things I can do. For a few days I had trouble walking. Some days I can’t hold a coffee mug. Most days buttoning and unbuttoning are a lengthy challenge. Typing is sometimes painful as well.

Whereas before I could look forward to the time when chemo would be over, now I must be happy for each round. I must realize that it means another week alive, another week the drugs are working.

Another week to be a wife, mother, friend, daughter.
Another week to write, another week to love.
Another week to hope there is a new treatment brewing.

My milestones used to be measured in how much time I had invested to get through to the other side: putting cancer in the back seat. The goal was successfully completing surgeries and chemo so cancer would be more like background noise rather than an attention-greedy headliner in the spotlight.

But now all of that is backwards. I don’t count down until my treatments are over because they are going to be here for the rest of my life. That’s a hard one to accept some days. There is no “when I’m done with treatment.” Not taking chemo would mean I’ve run out of options or the treatment is worse than the disease. There is no after. There is no “looking forward to being done.” Being done now only means death to me.

This is the way it is.
Everything is upside down.
And that’s how life has felt every day since I was diagnosed with Stage 4 breast cancer.

If you let me

March 4th, 2013 § 19 comments

cropped-IMG_02201.jpgOnce or twice a week I awaken in the middle of the night with a poem in my head. I reach for my phone and I type frantically. I go back in the morning, or after a few days, and read what I’ve written. I know the words are important, streaming from my head like water breaking through a dam. This poem came from one of these middle-of-the-night sessions.

 

If you let me

If you let me
I’ll cry you a river
Scream at the moon
Hold your hand
Kiss your mouth
Feel your heartbeat
Dream of more
Fear the end
Wish it were different
Pound my fists
Swear a blue streak.

If you let me
I’ll give you strength
Find a reason
Deliver some hope
Take a needle
Feel the pain.

If you let me
I’ll be grateful
Feign bravery
Take a stand
Do my best.

In the end
I’ll whimper softly
Try again
Give a last kiss
Take a last breath
Slip away.

Dragging my feet to the finish line

February 11th, 2013 § 16 comments

The finish line is the goal.

Runners strap on shoes, push their bodies, train for months.

Do it well. Do it faster. Faster than the others.

 

Laps around the track, tires squealing, pit stops along the way.

Checkerboad flags, shake the champagne.

 

Biking stages, climb the hills, pass the others, wear the gold jersey.

You got there first.

You won.

 

But I do not want the finish line.

I do not want to get there first.

I am dragging my feet.

Digging in my heels.

Fingertips grasping,

Losing touch,

Don’t make me go.

 

I’m fighting, crawling, resisting, doing everything I can.

Make the time slow down,

Make the days longer,

Make the end out of my sight.

I don’t want to be the first to the finish line.

I want to be last.

This time, losing would be winning.

 

 

When I die

July 13th, 2012 § 54 comments

When I die don’t think you’ve “lost” me.

I’ll be right there with you, living on in the memories we have made.

When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.”

Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up.

 

When I die don’t say I “passed.”

That sounds like I walked by you in the corridor at school.

 

When I die tell the world what happened.

Plain and simple.

No euphemisms, no flowery language, no metaphors.

 

Instead, remember me and let my words live on.

Tell stories of something good I did.

Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could.

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

 

They have learned about grief and they will learn more.

That is part of it all.

 

When I die someday just tell the truth:

I lived, I died.

The end.

Dealing with the topic of death

December 14th, 2011 § 14 comments

My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.

They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.

Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.

When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.

I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.

I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic

And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.

Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”

What if they didn’t get it all.

What if the chemo doesn’t work.

What if the cancer comes back.

What if I get another (worse) kind of cancer from the chemo.

What if I die.

No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).

I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.

I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.

Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.

Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.

Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.

Children grieve differently

December 2nd, 2011 § 4 comments

I’m working on a new piece about grief during the holiday season, but really want to re-share this short post for those who missed it. I actually re-read it from time to time to remind myself of a valuable insight I had with two of our three children. This was originally written two days after their grandmother was killed in a car crash in 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 a breast cancer fundraiser 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.

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.

……………………………….

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.

A reaction to Bruce Feiler’s ” ‘You Look Great’ and Other Lies”

June 12th, 2011 § 26 comments

Cancer is not one disease and there is more than one way of coping with a diagnosis. While some patients research every aspect of their illness, treatment, and prognosis, others would rather have their physicians sift through information and chart a particular course of action for them.

While many people with cancer or other illnesses may agree on what they like to hear (or not hear) from friends, family, and acquaintances, Bruce Feiler’s New York Times piece “‘You Look Great’ and Other Lies” falls victim to assuming that just because it is true for Bruce means it’s true for all. While he does use “many” and “most” throughout the piece, his list is prefaced by “Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick.” If Feiler’s piece were a blogpost I might not feel the need to react in such detail; however, as a highly visible piece, I suspect there are many readers saying to themselves, “I say a lot of those things… was I really that wrong?” All day yesterday my Twitter followers were asking my opinion about the piece; they wondered if he was right.

I recognize that there is a lot of good advice in his piece, and I want to acknowledge how hard it is to write a short article about such an important and personal topic. I think that opening up this subject to a larger discussion may allow readers to see the variation in reactions: remarks are interpreted in a variety of ways by different listeners. Even the same remark may be interpreted as harmless one day and loaded the next; hard and fast rules are unlikely to apply.

Thus far on my blog I have resisted writing rules about what people should and should not say. Readers have forwarded many such lists to me for my opinion.1 At the time I was diagnosed, I was the first of my friends to have cancer; I didn’t have anyone I could ask for advice.

I was often annoyed with the comments people made. I felt some were just silly (“It must be nice to be able to have time to rest in bed during chemo”) while other comments seemed hurtful or downright rude (“Is your cancer what is going kill you?”).2 While I was frequently upset or offended by statements people made, I didn’t articulate a list like Feiler’s. Why? While I reacted negatively to some things people said, I still felt that in most cases their intentions were good. That is, they might have made comments that were not helpful, but they weren’t making them to be hurtful. They might have been nervous, naïve, or clueless, but they weren’t trying to be cruel.

While the hope is that people will think before they speak, saying “these are the things you must not say” will make people even more self-conscious. The danger is that people will do something even worse than the things Feiler mentions: they may remain silent and not offer any help or express any affection at all for fear of saying the wrong thing.

Many people don’t know what to say. It’s wonderful to have some suggestions of what you should say as Feiler does (and I think he’s spot-on with every one of those). The danger of criticizing in harsh terms is that every person you’ve interacted with then feels the need to ask, “Are you talking about me?” At that point you are put in the position of consoling those who should be helping you. Frequently I found myself in the position of comforting others about my own diagnosis or that of one of their relatives. My recommendation is to avoid telling a person with cancer about your friend or relative who either had it and has lived 20 years (implies their fears are unwarranted) or that a person you know died a terrible death (discouraging).

One main criticism of Feiler’s piece is that it makes no distinction of or allowance for social proximity. That is, the expectations we have for what others should say to or do for us varies in relation to how close we are to them. It may be reasonable to expect a spouse or best friend to clean your refrigerator but not for your child’s teacher to do so.

Now, on to more actual details of the piece.3

It’s interesting that Feiler assumes the offer of food is innocuous. He claims food was one of his great helps and implies that this is a safe way to offer help to those in need. I explicitly forbade food to be brought to my house. I didn’t want anyone spending time or money preparing or purchasing food that might not get eaten. One friend reported that while her son was being treated for leukemia, well-wishers sent so many lasagnas that her kids could no longer look at the dish after a few weeks of receiving them. Similarly, smells eminating from food can often be offensive during chemotherapy.

Feiler starts his list of helpful speech and behavior by outlawing the questions, “What can I do to help?” and “My thoughts and prayers are with you.” he tells readers, “Just do something for the patient… Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.” Gee, I’d like someone to do those things for me even when I am not sick!

These things are not only unrealistic in most cases (live far away, don’t have a spare key to the house) but also impractical. These sound like suggestions for close family and spouses/partners. Perhaps saying, “Where’s your to do list—I’ll pick something off of that” might be more reasonable. I don’t want anyone in my house, actually, and how can you know what to do unless you ask?

To me, asking “what can I do to help” is not the same to me as “Call if I can do anything.” His point is that it “puts the burden back” on the person who is sick to come up with a way to help. I predict most people have their mental “to do” list available and could reel off a few suggestions to those who would offer. Close friends can just “do” or  insist in a way that others can’t. I do agree with him that being more forceful about helping is the right way to go, just not to the degree he does. Taking children for playdates (phrased as “We’d love to have your child over, please let us/we won’t take no for an answer”) is a lot more likely to receive approval than, “What can I do to help?”

Further, those who are ill may take pride in being able to accomplish a task themselves. I wanted to be able to do small tasts to contribute to taking care of the house. It’s not realistic to think an acquaintance is going to march into your home and scrub your toilet; after all, it’s hard enough to get those who actually make the mess and live there to do it. Arranging for a cleaning service to come might be more helpful. Often it’s easier to allow strangers into the home than friends; and it could be done while the person it at chemo treatment, for example. (with care taken about fumes and smells that might trigger nausea). Offering to do grocery shopping or be available to receive an online grocery delivery might be good, too. There is a whole post I could write about suggestions for how to help a friend.

Feiler also outlaws “My thoughts and prayers are with you.” He writes, “In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending ‘thoughts and prayers’ are just falling back on a mindless cliché.”

First, I think this is an extrememly personal reaction. How a person deals with severe illness is highly charged. In my case, I don’t want your prayers under any circumstances. I don’t believe in God and I don’t want you to pray for me. I didn’t tell anyone not to do it; after all, it made them feel that they were doing something for me. However, it also smacked of illogicality; why pray now? The damage is done: I’ve got cancer. I don’t believe that your prayers will make the difference as to whether I live or die from it; after all, I am quite sure that the people who die from cancer every day have people praying for them, too. Feiler assumes again that what is good for him is good for all– not all people with cancer will find prayers comforting. It’s a bit confusing because he also says it’s something not to say; I’m not sure where he really falls on this matter.

Second, when someone says, “My thoughts are with you” (a phrase I use often and am not about to stop) I think it can be nice. When you live far away or don’t know someone well it can an expression said with genuine concern; when said to a close friend or family member it expresses affection while feeling powerless in such a terrible situation. I believe that to be true.

I counsel: empty phrases said without emotional authenticity are likely to fall flat with the recipient. But I think telling people not to say, “I’m thinking of you” is extreme.

I wholeheartedly agree with his #3 (“Did you try that mango colonic I recommended?”), #4 (“Everything will be o.k.”), and #5 (“How are we today?”): double emphasis on numbers 3 and 4.

Then we come to #6 (“You look great”). This is the one the title points to as “a lie.” One major criticism of the piece is that “You look great” is not necessarily a lie (and I believe the compliment most often is true). I think what Feiler is sensitive to is that we have no way of knowing if it is in our particular case that someone is lying or not. Even in the midst of terrible sickness it’s likely the speaker means “considering everything you’ve been through” which can still be an honest compliment.  Also, many people appreciate being told they look great, even if the truth is questionable. Some days it doesn’t take much to lift your spirits. In the piece Jennifer Goodman Linn said, “When people comment on my appearance it reminds me that I don’t look good.” She is convinced she looks bad and doubts the honesty of the comment. Why can’t it be that she does look good? Why isn’t there room to compliment anyone on how they are dealing with things?

As I see it the real core of the problem is that “you look great” might imply that “you can’t be that sick.” Observers are trying to reconcile the disease inside with the appearance outside. When pictures of Gabby Giffords emerged yesterday, for example, everyone including newspapers commented “how great she looks.” I did not. While I thought it, and believe it (I guess Ms. Linn would find that impossible to believe), I didn’t say it because I was not trying to undermine the seriousness of her condition. Just because she looks good doesn’t mean she isn’t terribly affected cognitively and physically by the aftermath of being shot in the head. Just like when your hair grows back after chemo and everyone takes this to mean you are “all better,” serious medical situations can be present even when not visible to outsiders.

I loved when people told me I looked good. I looked sick, of course. But the effort I took to put makeup on or compliments to how I wore a scarf to coordinate with my outfit were nice. On a day I felt sad I always loved a compliment.

The irony is that illnesses that are invisible can be harder to live with. “I know you are sick but you look so healthy” is not helpful. It’s always disconcerting when someone who “looks healthy” is diagnosed with a serious disease or dies suddenly. These situations strike fear in all of us because being healthy makes us feel protected. When someone looks like us but is concealing serious sickness it can make us feel vulnerable– but that is not the patient’s problem. I again revert to the advice that you should say what you honestly believe. I don’t think it’s always a lie and I don’t think it should be on the list of outlawed expressions.

“People reminded me that I had a free ‘No’ clause whenever I needed it,” said one person in Feiler’s piece. My advice: let those who need to use it do so. When a friend got her own diagnosis of breast cancer, she assumed she would easily be able to opt out of being a Girl Scout troop leader during surgery and chemotherapy time. Instead, she was not given a gracious “pass” and no one offered to fill her spot (that would have been one way to really help). Instead, “But you’re still going to be able to be a leader, right?” was the reaction that met her.

I totally agree with the suggestions Feiler makes for things to say (Don’t write me back, I should be going now, Would you like some gossip, and I love you).  I think there are more, but I think he’s got some perfect ones to start a list there.

Elsewhere I’ve asked readers to contribute the strangest/rudest things people said to them when they (or a loved one) had a serious illness. Some of the responses there are definitely statments I would caution people to think twice about saying. I also heard:

“Is it terminal?”

“What’s your prognosis?”

“It could be worse, you know.”

“Everything happens for a reason.”

“It’s all part of a larger plan.”

“Now that you’ve been through this you’re due for some good things to happen.”

“I’m sure it’s fine/I’m sure it’s nothing” (similar to Feiler’s “Everything will be okay”). And there are many more.

There is an anger that can divide friends and family once a person is diagnosed with an illness. “You just don’t get it” or “You wouldn’t understand” can be a common refrain whether silently or outwardly expressed. The same words spoken by a friend/acquaintance/colleague may be interpreted differently depending on the day or mood of the patient. I quickly learned that physical pain and emotional agony trumped all; I had little patience or care for others when I was hurting. I learned to withdraw during those times or only discuss it with those who did understand. My hypersensitivity was undestandable but not necessarily easy to be around. The desire to be understood is part of how the ill connect, attract, and cling to one another. The fact that most people with a serious illness can rattle off offensive or ineffectual questions or comments made to them means they are important.

Feiler’s piece struck me as one in which his feelings of “you just don’t get it” were overwhelming and raw. While much of the advice is good, in the end I am critical of him for the same reason I didn’t make such a list during treatment: if you go around telling people how what they did was so wrong all the time, and things they should never do, soon enough they won’t say anything for fear of disappointing or offending you. In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them. I guess I shouldn’t say that will work for everyone, but that’s what works for me.

  1. For those who don’t know my history, here it is in a nutshell: I was diagnosed with hormone receptor positive, BRCA-1 and 2 negative, stage II invasive ductal carcimoma of the breast 4 years ago. I had a double mastectomy with reconstruction, 4 months of chemotherapy, and an oophorectomy eighteen months later. I had 3 children at the time of my diagnosis, the youngest was 7 months old and had his own serious medical condition to deal with. []
  2. While I may use the example of cancer in this post, Feiler and I both are referring to any serious illness. I refer to cancer because that is the most serious of the conditions I have had experience with. Insensitive comments are by no means confined to the diagnosis of cancer. []
  3. While not Feiler’s fault, I’d like to question the title “’You Look Great’ and Other Lies”… what exactly are the other lies mentioned in the piece? []

When daughters grieve the death of their mothers

May 25th, 2011 § 443 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?

……………………………………..

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.

……………………………………….
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.

…………………………….
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.

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.

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.

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 []

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.

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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