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 cost of care

Last week I had my initial consultation with a doctor at MD Anderson. I just logged in to see how much they are charging me for a consultation and MRI scans of my CNS, and I was shocked to see that there are more than $20k  in charges on my account. I have good insurance, and I am hoping most of that is covered, but I can’t help wondering what I would do if it were not covered. That is a lot of money!

Then I begin to think about people who are not fortunate enough to have health insurance. If I were to lose my job and the health insurance that comes with it, there is no way I could pay that much money! And this is just the beginning! I still have the surgery, which could add $80-90k to my bill, and suddenly we are talking about approximately $100k in medical bills. Even if every penny of my take-home salary went towards the bill, it would take me more than two years to pay it off! But I can’t put 100% of my salary into it because I have to pay my other bills. Where does that leave me? Watching the current health care debate very carefully!

What’s Next For The Affordable Care Act? Julie Rover, chief Washington Correspondent for Kaiser Health News, talks about the state of health care in the U.S. today, and how it could move forward. Read more on NPR

via NPR News: What’s Next For The Affordable Care Act? — William Chasterson

Check this out to get some information: https://www.kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/