Last one on line

October 3rd, 2014 § 35 comments

IMG_7500It seems like you can’t rank anguish. You shouldn’t be able to “out-suffer” someone. How do you quantify misery?

And yet, somehow we do.

“My problems are nowhere near as bad as yours are.”
“I feel terrible complaining to you about it when you are going through so much yourself.”

I hear these types of comments all the time.
I make these types of comments all the time.

Placing ourselves in a hierarchy of pain and suffering serves to ground us; no matter how bad our situation is, there’s comfort in knowing there is always someone who has it worse.

Like being on a really, really long line at the movies or at airport security, as long as there is someone behind you, it somehow seems better.

Hospitals use a pain rating scale: “On a scale of 1 to 10, how bad is your pain?” When our son Colin was in the hospital for 9 days with a ruptured appendix, they asked him to rate his pain. I was intrigued at his difficulty in answering the question. At the time he was 5 years old and didn’t understand what they wanted him to do. Colin didn’t understand the concept of comparing one level of pain to another; His abdomen hurt… that’s all he knew. He used a binary scale to assess his pain: did it hurt or not? As adults we know better: pain is not a yes-or-no question. Rather, there can be levels, ranking, quantification, and comparisons.

These mental exercises are necessary to keep us going through hard times, no matter what type. Before I got cancer, cancer was a “go-to” negative reference point. I mean, how many times had I, and everyone I know, thought or said, “I’ve got health problems, but at least it’s not cancer”?

I had done that a lot.

A benign lump needs to come out? At least it’s not cancer.
A mole needs to be removed? At least it’s not cancer.
My son has hand and neck deformities and a cyst in his spinal column? At least it’s not cancer.

Then one day it was cancer.
So what could I pacify myself with?
At least it’s not terminal.
At least they can remove the body parts the cancer is in.
At least this debilitating treatment will be temporary and I have the possibility of returning to a normal life again.

Then there was the big one: at least it’s happening to me and not my child.

And when I found out that my cancer had metastasized, I could not calm myself with those comforting refrains anymore.

Now it is terminal.
Now they can’t remove the body parts it is in.
Now the debilitating treatments are permanent and I don’t have the possibility of returning to anything close to a normal life again.

I have often said I have hated becoming anyone’s negative reference point. “At least I’m not her” people now often think of me. I always thought that meant they pitied me. I didn’t want that. But now I realize that it is okay for people to be glad they haven’t walked in my shoes– in reality, that’s what I want. I don’t want anyone to be where I have been and where I am; I’d like to be the lightning rod that keeps other people safe. But we all know it doesn’t work like that.

Denial has never worked for me.
Denial doesn’t kill cancer.

I still believe it could be worse.
I know that is true.

And so, for today, I focus on the fact that I’m not the last one on line.
On the really challenging days sometimes that knowledge is all I have.
And on those days, that knowledge is enough.

§ 35 Responses to Last one on line"

  • Elizabeth Von Stur says:

    Lisa,
    Thank you for yet another amazingly insightful, wise post. I remember in college, people loved to “one-up” each other. “I have two papers to write, three chapters to read and I haven’t slept in two days.” “You think THAT’S bad? I have five papers to write; three are due tomorrow morning, and I also have four chapters to read, a team project to finish and I have slept in a MONTH” – I mean, at some point, it would become so ludicrous we’d all start laughing. But I admit, I’ve done this. At 26 I was struck down with what they call “fibromyalgia” – but I really hate the term because there’s no test to prove what exactly it is yet; and I feel like it’s a waste-basket term that people are skeptical about. But after 21 years of dealing with life-altering, severe fatigue and constant severe pain I’ve given up on what others think. My mom tries the “at least it’s not cancer” speech with me. I used to think like that. “Ok, you wake up every day in so much pain the first thing you do is reach for the Tramadol. At least you don’t have cancer. At least it’s not progressing; at least it’s not MS or lupus or something. At least you’re not a starving child in Africa.” But you know what? That doesn’t help me anymore. True, I don’t have cancer at this point in life. I’m not an untouchable, begging on the filthy streets of New Delhi. But I’m still trapped in a body that hurts, all the time. I still suffer.

    Yet I do have gratitude and like you, believe me, I know it could be worse. I’m only 47 but I feel like I’ve cheated the Grim Reaper at least twice; once I walked around for 8 days with multiple blood clots in my lungs, slowly suffocating to death. How one didn’t dislodge itself and travel to my brain or heart…I don’t know. A year and a half ago I had a severe case of pancreatitis due to a gallstone getting stuck in a duct; I was given two full days of antibiotics on a constant IV drip and suffered the worst acute pain of my life. Yet here I am. So yes, things can get worse. I am growing older. Just because I have fibromyalgia doesn’t mean I won’t be subject to other health issues.

    Anyway, thank you thank you thank you for your wisdom, your amazing ability to not live in denial. As I told you once you are always the first person I check on Twitter each day; it’s become an almost maternal habit – I have to see how Lisa is doing…I hope Lisa is ok. Oddly I never use you as a negative reference point. Probably because I’ve stopped comparing my pain, my problems with other people’s. What’s odd to me are people like my friends, who are 51 and 57 and have NEVER had any health issues; the last time they were each in a hospital was the day they were born. Now THAT puzzles me. I guess it’s just random; the luck of the draw. I certainly don’t believe any God gave me this pain; it’s no lesson to be learned. It just sucks.

    I wish you the best as always – moments of joy, moments free from pain, discomfort…I know you can never free yourself entirely from the clutches of this beast, but I still wish you peace, if it’s at all possible.

    With much love and gratitude,

    Elizabeth

  • Linda says:

    But sometimes I wonder how you really feel when someone will tweet you a line or write a comment complaining about their health when really, it’s nothing like what you’re going through. Is it hard to be sympathetic? My best friend has leukemia and has gone through enough chemo to bring her to the edge of death many times and I’m often shocked when I hear others tell her stories about their bad backs, pulled muscles, etc.

    • Lisa M says:

      Hi Linda. My breast cancer hasn’t metastasized and I’ve been NED for 10 years. But my church family and many of my co-workers saw me go through treatment for stage 3 cancer. Even now people who are telling me about a recent illness or something troubling them I will hear them say “It’s nothing like what you’ve been through.” It frustrates me because so what, it’s not cancer. But they are suffering and that suffering is very real to them. Usually I am honored that they trust me enough to confide in me. I don’t think waa waa quit complaining because I know whatever is troubling them is very real.

      • Helen says:

        Hi Lisa M.,

        I understand exactly what you’re saying. I too have found that after going through treatment for a very aggressive breast cancer, many people don’t feel that they have the right to say what’s going on in their lives, and they apologize for doing so. I tell them that what they are going through is valid and important. I also find it dismissive if someone says to me, “well, at least you don’t have x, y, z like so and so does”. That in turn minimizes what I’m going through, as though it weren’t real.

        In a similar way, I’ve never found comfort in knowing that others have it worse (have never really understood the concept, but that’s just me :). I’m certainly not glad if someone has it worse. I tend to look at it this way: What I have is what I have, and I need to deal with it no matter how high or low on the scale of good and bad it may be. As it is with all of us.

        I guess it just goes to show how differently we can all be wired in how we look at things. I wish you all the best Lisa M., and am glad that you have had no evidence of disease for 10 years.

        Take good care,
        Helen

        • Lee says:

          ” I also find it dismissive if someone says to me, “well, at least you don’t have x, y, z like so and so does”. That in turn minimizes what I’m going through, as though it weren’t real.”
          Thanks for this!

          • Lisa M says:

            Still, I’d rather say something dismissive than to avoid me because they are afraid of what they are going to say.

  • Linda English says:

    Lisa,
    I love your honesty and courage and vulnerability. Sometimes I think a lot of us unwittingly get caught up in some imaginary contest about “being strong” regardless of the severity of a problem.
    Everyone has the right to feel whatever they need to feel without apology or explanation. Thank you for being you.

  • Marie says:

    Beautifully said. Your writing always feels like my thoughts – but they stay jumbled in me. You are really talented to bring your thoughts into words. Thank you for reminding us of where we are.

  • Daphne says:

    Thank you, once again, Lisa, for your extraordinary words, helping those of us who are ‘healthy’ to understand what having cancer really means. And, once again, huge hugs full of love to you.

  • Beth says:

    Beautiful. There comes a point where you are just thankful that you are able to get up, enjoy a cup of coffee, and live another day. And wish that for those you care about.

  • Nancy says:

    We will all be the last in line someday. We hope not today. Thank you for sharing your thoughts and feelings so clearly. It helps me understand my own.

  • Diane D'Angelo says:

    I think this is part of our greater culture which denies mortality and acts as if dying is the result of having done something wrong. It permeates the clichés spouted during October Breast Cancer “Awareness” Month. You are doing a great service by being real, Lisa. Thank you.

  • […] Her post from today is titled, Last One On The Line. […]

  • Ruthie says:

    I admire you so much. You are able to be so eloquent, and so level-headed, in the face of, well, your own demise. You are able to be strong and loving for your children despite your own hardship. I really admire that. So many people, probably me included, would not rise to the occasion as you have.

  • Sarah Buttenwieser says:

    Such wise perspective.
    Big hearts on this sunny day.

  • Amy says:

    This week marks the fourth anniversary of my daughter’s stillbirth. This time of year is always so hard. And my worst moments come when I start to believe that I’m uniquely unfortunate because of that loss and the infertility that followed. I start to feel bitter and isolated, a victim of fate. It’s very toxic. I fare better with the realization that all have our own pain and life brings us all to our knees at one point or another. I suppose I’m not yet evolved enough to make peace with being someone else’s worst-case scenario.

    • Sharon says:

      Oh my dear. It has been 34 years since I lost
      My first child at birth. On that day, I just sit and be with the pain.

  • Jen says:

    I love your writing Lisa. This post makes me realize how universal some of this terminal cancer experience is. With regard to my husband (he is the same age as you), I have often thought “Did it have to be terminal cancer?” “Did it have to be in a part of the body that could not be removed?” He has brain cancer. And we both agree, that this would be much worse if it was one of our children. Strange to feel so alone yet not alone with these thoughts…

  • Elizabeth says:

    Thanks again for a great post. I have said to myself many times “at least I’m not her”, since my protocol is so far easy to handle and I hear other people saying they will be at the Cancer Center for 8 hours. Once again, I hope things start to get better for you.

  • Rebecca says:

    So much truth in what you say. For those of us who complain about Monday mornings and rejoice in Friday afternoons I know we sometimes think “well at least I don’t have to work weekends” or “At least I don’t have 2 jobs anymore” or “at least I have a job” whatever. We compare ourselves to others every day sometimes.

    When I was growing up I found stories in books, and among my friends, where someone else’s life was worse than mine. It made me shut up about my complaining.

    I remember one of your other posts where you talked about circles of people. The quote is a little fuzzy to me at the moment, but it was something about “Comfort In, Venting out…” Maybe you will know what I am talking about. Maybe this is part of why people don’t want to complain about their lives around you now.

    • Lisa Bonchek Adams says:

      Hi… thanks for commenting. Just to be clear, I know the piece you are referring to and I didn’t write it… the authors were Susan Silk and Barry Goldman and it was in the LA Times I think. I know it was very popular and quoted a lot. And for the record, I don’t believe that rule applies to friends. I want to hear their complaints. I don’t want it all about me. That would be unbelievably boring and egocentric to spend the rest of my life like that!

  • s.e. says:

    I admire your courage and your tenacity and enjoy very much reading what you write. I had the experience of choosing to withhold a very difficult situation that my family and one of my adult children were living through in early 2013 from a friend who was fighting for her life after a cancer diagnosis. Eventually when she was on the road to stable health I told her about the situation. She replied that she wants her friends to turn to her for support even when her health is not good.
    While I don’t think people should whine in general about minor health issues or frustrating situations, sharing with friends helps everybody when there is something really difficult being faced by one of the parties.

  • Patty says:

    This might be one of my favorites Lisa. Thank you for sharing it.

  • Lee says:

    Lisa, I love your writing, and I admire your thinking and empathy. For me, it is not what is happening to me, or to another, it is how can I deal with it in the way that creates the least amount of additional drama for me and for others? How can I deal with it in the most loving way?
    Thank you for all you share.

  • There is so much truth in this post, things that should be said.

    I think of you daily. I wonder if that matters at all, my measly good thoughts for you in the sea of sh*t you have to swim upstream in.

    It feels meager, but it is all that I have and it is genuine and sincere. I think of you daily and hold you in my best possible thoughts. There is no one else I do that for, IRL or otherwise, and I hope you feel it across a wispy breeze or in the flutter of a butterfly’s wings, or the chirp of an early morning bird call.

  • sorrow says:

    There really are no words. I guess i just wanted you to know I had been here, and read this and it gave me a pause and a moment of gratitude, for your honesty and real.

  • Lisa,
    You are so articulate, such a good writer, and a courageous soul. Sending you good thoughts and wishes for you on your journey.
    Warmly,
    Naomi

  • […] “Denial doesn’t kill cancer. I still believe it could be worse.” […]

  • Cheryl says:

    Because you take the grace and courage and time from your time to share and live out loud, we can grow through your experience. It’s not fair, and I bow to you in gratitude and awe, hoping that if I face similar challenges I can rise to your example. That is not to put you on a pedestal, it’s to acknowledge the fierce, formidable spirit that I see you to be. Thank you.

  • […] “Denial doesn’t kill cancer. I still believe it could be worse.” […]

  • Gail says:

    If i can rate your posts, Lisa, this ranks up there in the top 5 for me.
    But you, you’re number 1 in eloquence and honesty.
    xoxo

  • Felix says:

    Thanks for the article! I like your perspective on how things turned out

  • Julia says:

    I’ve recently started treatment for stage 2 breast cancer, with lymph node involvement. I know all too well that one day I may be in your shoes and that that possibility will be with me for the rest of my life.

    I hate this disease – I hate what it’s done to me and to thousands upon thousands of others. Thank you for helping make others aware of the lack of a cure and the randomness of whom and when it strikes.

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