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”.

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 “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…

Like an onion…

Has it really been a year since I last wrote? I guess it has. At the time, I was a bit hopeful. Since then things have taken a turn negative turn. As I mentioned, my physical therapist and my neurologist both believe much of my pain and my migraines stem from Myofascial Pain Syndrome. I was doing physical therapy for it, but even with insurance, that is really too expensive to sustain. Massage also helps, but same problem. That is why the mainstay in my treatment plan for the past year has been muscle relaxers. I’ve fought against the idea of being chronically tied to muscle relaxers to treat my condition, but in the absence of any other solution that really works with my current budget… muscle relaxers it is.

With them I was down to a mere seven to eight days of horrible head aches per month… trust me, that is an improvement! But then I developed a chronic cough. First I thought it was my asthma. Sure, I know it had been years since I’d really had a problem, but… out came the albuterol and all of the other asthma related meds. But the cough persisted. Next step, antibiotics… but the cough persisted… a different inhaled medication… no help… a visit to a pulmonary specialist… and the verdict was… “there is no problem that we can see” – AH!!!!! I wanted to scream.

I went back to my GP, and he suggested that it might be silent reflux. Okay, so I go home and start reading up on that and guess what? It can be caused by taking muscle relaxers. Can you cue a loud scream right here? Since the cough had gotten so bad it was making it hard for me to do my job at work (and was often causing me to vomit), I decided to try to temporarally stop taking the muscle relaxers. Did this help… unfortunately it didn’t. Instead it just sent me into a tail spin. Now I am on week five of a head ache. The constant pain has me on edge. I’m depressed, irritable, and exhausted.

Sadly…

Headache

Headache (Photo credit: Lel4nd)

I had been lucky for a while. With physical therapy I’d seen my pain decrease.  In November I recorded nine noteworthy attacks. In December it was down to five. In January I topped out at three, and I was over the moon! I was beginning to get my life back. Even the slight increase to five in February didn’t alarm me. I was seeing patterns, and I was beginning to plan how I could make my life work around my pain. However, in the United States medical care doesn’t come cheaply. You need time and money to pursue the kind of cure I was after, so in March I didn’t have physical therapy.  I continued my exercises at home (as well as I could), my stretching, my Tai Chi. I used a tennis ball behind my back while driving to give myself automessage.  I drank lots of water, and I was conscious of my posture, but it didn’t matter. In March I recorded ten days of noteworthy pain.  And now, the first day of April, I sit here, fighting the fog that comes with the pain, trying to think, trying to write, trying to voice my frustration with the system.

You see, I work! I work a fulltime job specifically to make sure I have health insurance to help with medical expenses; nonetheless, even with the health insurance, there are costs. Oh, but the costs are worth it, right? Well, let’s think this through. I work to get health insurance, but my employer doesn’t cover the full cost of the insurance. I still have a portion of the premium deducted from each paycheck.  Then, when I do get a treatment, I have to pay deductibles, copays, and other expenses. What does that mean? Well, it means that I am spending more than a third of what I earn just on physical therapy alone! Which makes me start thinking, would I need physical therapy as much if I didn’t work? Or if I worked part-time instead of full-time? Maybe not.  Does that mean  I should give up my job and try to rearrange my life to minimize my pain in ways that don’t involve expensive medications and treatments? That would mean basically organizing my whole life around my condition. It just doesn’t seem right. I’m working so hard, and I still cannot really afford the care that I need to make me the most productive person I could be. It is so frustrating.