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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Planning for the future… talking to the boss

Being diagnosed with a spinal tumor has turned my world upside-down. Now most of  my waking minutes are consumed with research and planning. One thing that I know I need to deal with sooner rather than later is the inevitable talk with my boss.

I had been planning to wait until I had a treatment plan, but last week something happened that makes me feel that I can’t keep putting this off. We had an all day professional development retreat. On a normal day, I alternate between sedentary seated desk work and teaching (which allows me to walk around the room), but during the retreat, I spent the first three hours seated. By lunch, I was in a lot of pain/discomfort. I stood while eating my lunch, and then I took a walk before the afternoon session began. During the afternoon sessions, I tried to alternate between sitting and standing. The pain/discomfort didn’t go away, but it didn’t get worse either. I watched the clock inch closer to 4 pm… the time when I would go back home and take some medicine to reduce the pain. However, at 3 o’clock, the person organizing the retreat announced that our last activity of the day would involve physical activity. Most of the participants were pleased. They were tired of sitting in their chairs, but his description of the activity made me panic. I was already in pain. How could I possibly participate in this activity?

I told my teammates that I would not be able to participate because I’ve been having back problems. They urged me to give it a try anyway, and I had to explain that I was already in a lot of pain. I couldn’t risk it.

balancing_act_by_youreyestellies-d5gcfix

They let me sit out during the activity, but I felt like I had let the group down. I also felt like I was no longer a full member of the team. I didn’t have the shared experience of facing the challenge with them. And, I suddenly had been singled out a being different from the rest of the team. I noticed my boss watching from the other side of the room, and I knew that I needed to tell him what was going on before he came to his own conclusions.

So, how do you tell your boss that you have a major medical problem like a spinal tumor? Fortunately, there are resources on the web that can help.

Most of the resources are related specifically to cancer. My tumor is probably benign, but  many of the recommendations made for cancer patients also pertain to my situation. A really good resource that I have found is Cancer and Careers. They provide a wealth of information to help a newly diagnosed person decide when and how to share their diagnosis with co-workers and the boss. They also have information to help you navigate Family Medical Leave, the ADA, and your rights.

After reading everything on-line, I think I will wait and talk to my boss after my appointment with the neurosurgeon. Then I should have more information to share.

Here are some of the other resources I found:

http://www.cancerandcareers.org/en/at-work/employers-managers/managers-toolkit

http://www.everydayhealth.com/brain-tumor/telling-your-boss-about-your-brain-tumor.aspx

 

The Return of the Jabberwocky – Part II

I didn’t recognize the Jabberwocky immediately when he returned. There were big changes happening at work, and in addition to accepting a new position with much more responsibility, I was enrolled in a doctoral program as a full-time student. To say that I was busy is an understatement. I knew that I was tired all the time. I also knew that I was having back pain on and off – but the pain was minor compared to what I experienced with my migraines.

I easily ignored it at first. But with time, I started getting up from my desk more often to stretch. When I bought a new car with seat warmers, I found myself using them all the time. And I was complaining incessantly about uncomfortable chairs. There were even days when I sat on the floor during class because the seats were causing me too much discomfort. But still, the level of pain was not even close to what I’d experienced with the migraines, so it barely registered in my mind.

With the new year, I made a commitment to exercise more. I got a membership at a local gym, and I started working out a couple of nights each week. The gym had a pool, so after about a month of walking the track, I decided to give swimming a try. Two weeks passed, and I started to notice a tightness in my back. I mentioned it to my massage therapist, and she told me that it might be from muscle fatigue. She tried to release the tension, but the attention she was giving to my lower back produced more pain. When I left that session, I thought she might have somehow forced something out of alignment. Unfortunately,  I waited for the pain to subside – but it didn’t.

The next week, after swimming two laps, the pain was more than I could handle. I was halfway across the pool, and I wasn’t sure I would be able to make it to the wall. I did make it, and I tried to stretch. I thought it was a muscle cramp. Stretching didn’t help. I attempted another lap, but I had the same result.

Convinced that I had injured myself, I went to the doctor. He, in turn, sent me to physical therapy. After working with me for a few weeks, the PT told me that we really needed images. He thought some of my symptoms pointed towards a schwannoma, but those were rare and to be honest, I wasn’t suffering from some of the tale tell symptoms.

The MRI was ordered, and I really thought we would find out that I had a pinched nerve – probably from something that had slipped out of alignment. But it wasn’t going to be that simple. It was going to be something called a schwannoma… there was that word again.

I went home and tried to google it. I wanted every bit of information I could find. So I suppose this blog is going to become a way for me to sort and process the information that I find in a way that can help me make the very important decisions that I am going to have to make in the coming weeks regarding treatment.

If you are interested, here is a picture of the culprit.

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.

The Return of the Jabberwocky

I am back, and you have probably guessed that means the Jabberwocky has made a comeback – only this time it has decided to take a new form. Officially, it is called a Schwannoma, but you might just call it a spinal tumor.

When my doctor gave me the results from my MRI, I expected to hear that I had a pinched nerve. It never occurred to me for a minute that I might have a tumor. Of course, any time a doctor uses that word, it is going to shake a person’s world. But to be honest, it didn’t hit me the way you might think that it would. I didn’t feel the floor fall out from under me. There was no strange out of body experience where you hear the person talking to you, but you are some other place very far away. It was just me wanting answers and my doctor not really being able to give me any.

A couple of weeks have passed, and I have been doing my own research to make sense of my new reality. Although there is a chance that this is all going to turn out alright, there is also a very real chance that it will not. So from this point forward, this blog is going to explore my journey into the depths of uncertainty as I battle the Jabberwocky once again.

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Images are not my own. I will post those later. If you, like me about a month ago, have no idea what I am talking about when I say Schwannoma… give this a try http://schwannomasurvivorsandfighters.blogspot.co.uk/2015/04/schwannomas-story-of-discounted-tumors.html

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