Book Review – Walk it Off

A few weeks ago I wrote a blog announcing Ruth Marshall’s book, Walk it Off, and at the time I promised to come back with a review of the book. I finished the book in about 48 hours despite the fact that I was suffering from a spinal fluid leak that kept my reading time to short interludes, but I have waited to write this review because I was trying to figure out how far I should go in my review (not that it really matters much because I don’t have a large group of readers). Now, several weeks after completing the book, I think I have decided what I want to say about it.

First and foremost, I would like to thank Ms. Marshall for opening up and sharing her experience with the rest of us. Recovery can be a deeply personal experience, and certainly some aspects of the recovery (i.e. incontinence issues and suppositories) are more private than others, so I can say I am very grateful that she shared so candidly. As I was negotiating the early days of my own recovery, these details helped me to feel like I was not alone in my experience. From the moment she was diagnosed to the day she was discharged from rehab, I found my own experiences jumping off of the page. So I thank her for that.

However, there were also moments when I wondered who she envisioned reading the book. Adoring fans who wanted a window into her experience? Peers in the entertainment industry – so they would understand why she was no longer acting? Other people, like myself, who have also had spinal cord tumors? The world at large? Or was she, just maybe, writing it for herself? I can’t be sure. But if she was writing it for other spinal cord tumor survivors (or those who are newly diagnosed), I believe she missed the mark by repeatedly stressing her decision to not join the community of survivors. She didn’t want to connect with other people who were experiencing recovery at the same time as her. She didn’t want the advice or reassurance of people who had already made it through the early stages of recovery and were now trying to find their way in their new lives. She wasn’t trying to use her position as a public figure to call for more research into the condition or assistance for survivors less fortunate than herself. And the disdain with which she seemed to view those of us who have turned to others for support and guidance was off putting. Each time she mentioned her decision to not connect with a fellow spinal cord tumor survivor, I felt somehow insulted. So, there is that.

Another problem I had with her was her focus on being able to have sex with her husband. It is just that from where I am right now, there are so many things that are much higher priorities for me. For example, I would happily give up sex for the rest of my life to get rid of the pain and discomfort that I have been experiencing. I am fortunate because I can still walk post-op, but if I couldn’t, I am sure I would be willing to trade sex for the ability to walk. And even if I could have sex right now, would I be able to get in the mood when I am wondering if I will be able to get back to work before my Family Medical Leave runs out? Or when I am obsessing  about the bills that are rolling in, wondering how we will pay them – especially if I can’t go back to work? And then there is the worry about continued health insurance coverage since that is provided by my job. And did I mention that I will also lose my retirement because I haven’t been with my current employer for ten years. But maybe that is the difference between living in the United States and Canada? Maybe if I had a national health system I too would be able to make my sex life the focus of my recovery? I am sure the Democrats could find a way to use that. I can see the ads already – happy, smiling people from all walks of life who have obviously had serious medical conditions – they aren’t worried about going bankrupt to pay medical bills – they are just worried that the doctors won’t be able to restore their ability to achieve orgasm… but I digress.

I am grateful to anyone who is willing to share their story of recovery because those stories help me to find the courage to keep pushing forward with my own recovery, so I am grateful to Ms. Marshall. But I am also disappointed.

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The Jabberwocky – vs – The Dissertation

For the past two years, Saturday mornings have been reserved for my dissertation. I pack up my books and head to the local library to immerse myself in research. But today something different happened. When I logged into the internet, instead of searching for more articles related to my dissertation topic, I found myself googling “schwannoma” – “neurofibroma” – “spinal cord tumor”.

Soon I found myself lost in a labyrinth of information about this thing that is taking over my life. I’ve read stories of people who have had the surgery and come out on the other side satisfied with the results, but I have also read stories that scare me. Stories of people who now realize the rest of their lives will be dictated by pain. Stories of limitations and loss. Stories of good doctors and bad doctors. So much to process. So many decisions to make. I read and read, but the big questions remain. How long will it take for me to recover? How much will this impact my job? My dissertation? My marriage? And I’ll be honest, it is hard to be optimistic and hopeful.

 

 

 

 

 

Careful…

Careful… it is a word that you could use to describe most of my life. I have always been careful. Careful to follow the rules. Careful to not break a bone. Careful to avoid sickness. Always careful.

Afraid… that is another word that has dominated my life. I have been afraid of the consequences that come from not being careful. Afraid of pain. Afraid of loss. Afraid of not being able to live my life as I want to live.

When the plane takes off, I worry about a crash… not because I am afraid of dying. Dying is easy. No, I have been afraid of suffering after surviving a crash. I have feared the broken bones, the surgeries, the inevitable changes to my daily life. And above all, I have feared a life lived with pain.

Same thing when it comes to cancer. I have thought about what I would do if I got a cancer diagnosis, and long ago I decided that I would much rather live my very best life (even if it is a short life) rather than live a long life of pain and sickness.

As you know, pain is not a stranger. I have been experiencing significant levels of pain on a regular basis since the age of 16. That is why pain is one of the few things I really fear. I know what it is like to be in the grips of pain. I know the desperation it can cause. I know that death couldn’t possibly be worse than trying to live with constant debilitating pain. And yet, despite my efforts to avoid pain… this is what keeps pushing its way into my life.

Now that I finally got my migraines under control and was beginning to enjoy a life that was not dictated by pain, it is suddenly back with a vengeance. And this time it promises to be my companion for the rest of my life. My condition probably will not ever kill me, instead it will slowly rob me of the life I currently have. The pain is already here, and it has already forced me to stop swimming. Soon, I suspect it will creep into other corners of my life… keeping me from participating in some of my favorite activities. In the space that was once filled with dancing and laughter… there will be pain.

Yes, I can have a surgery to remove the tumor… or rather, I must have the surgery to remove the tumor, but there are no guarantees that the problem can be fixed. I may undergo surgery and come out on the other side feeling fantastic… but realistically, I should view the surgery as an attempt to keep the problem from getting worse. Yes, I might have some weakness and pain for the rest of my life… but it could be worse. I could lose control of my bladder. Yes, I might even come out of the surgery with even more pain issues than I currently have, but if I don’t have the surgery I know that one day the pain level will increase to the point of being unbearable.

So there really is not a “good” option… only different different shades of the same color… variations on the same pain. And I am left sitting here wondering what kind of quality my life is going to have from this point on… despite years of trying to be careful.

Let’s get SUPERBETTER!

So, we want to get better, right? Who doesn’t! Well, Jane McGonigal thinks she can help us. Check out her TEDTalk and let me know what you think.

http://youtu.be/lfBpsV1Hwqs

Sylvia Plath

Sylvia Plath (Photo credit: Wikipedia)

Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forgive life, to be at peace.

SYLVIA PLATH, The Bell Jar

Death must be s…