Friday, April 16, 2010

The answer has already been given, now it's time to ask the question...

"She said, I'll walk.
Please hold my hand.
I know that this will hurt
I know you understand.
Please don't cry.
This is already hard.
Let's go, don't worry.
I'll walk."
Bucky Covington

The hills of Jaffa (Yafo) seem a million miles ago already. It almost feels like I fell asleep, dreamed of Israel and just woke up. Now its back to the day to day and the routine. Although for me that routine is going to be short lived. Next week I face the next great adventure, a trip to the Mayo Clinic.

This was a trip I was really excited about, a chance to have the nerve damage re-evaluated and find out if there was any significant changes we could capitalize on to help me gain greater mobility and use of my right side. Now in ways it feels irrelevant.

For those that haven't been reading since the start of the blog, just a quick explanation. In 1996 as the result of a botched lumbo-peritoneal shunt surgery I was paralyzed on my right side (head to toe). The rehabilition involved physical and occupational therapy and progression from a wheel chair to a walker to a crutches to a cane to a leg brace. Eventually I learned to compensate enough to be "functional" and mask my limitations pretty well to most people. Anyone who didn't spend much time with me might notice I walked a little funny (I have severe drop foot on the right side so cant pull my foot up and so I step different than most) but that is about it. Covering the issue was a lot of work but something I felt was important, being judged on my weaknesses doesnt work well for me.

But the cover was a mask, no more. On a day to day basis the damage had major impacts on my life. I had never been thin, but the loss of mobility caused my weight to balloon by over 130 lbs, I have fallen enough times to break every rib, my foot, my hands and probably lots of other bones I never had looked at. I have twice had 3rd degree burns on my torso because I couldn't feel the heat from a blow dryer running on the counter. I have had massive skin issues on my right side because I couldn't feel injuries. My world became pretty closed in because of fear of not being able to keep up and the practical issues of walking and stairs and hills.

It sounds over dramatic to say, but I had really written my body off. I worked on cultivating my mind and building myself a wonderful career, but had long ago given up on regaining much of what I had physically prior to getting sick and the surgery.

That all changed when I started working with the trainer at the end of 2009. I went into that with one goal, lose weight. I never had any expectation that any of the surgery damage would change. It was 14 years ago. The doctors had told me any improvement would come in the first 2-3 years max, so I had given up hoping and accepted the situation a decade ago. Nerve regeneration doesn't happen if you read the literature and I had faced that reality a long time ago.
I wish I had better documented when this all started, but probably 2 1/2 months into working with the trainer something weird started happening. It was so out of the realm of possiblity I didn't even notice it at first. Very small areas that I hadn't felt in years started having some sensation (able to feel pressure or pins and needles). The feeling would be, and is still, fleeting but it was still enough to try to at least consider what was going on.
I have to admit if it hadn't been for Gui and his ability to somehow make me believe anything is doable, I probably would have kept the changes to myself and never mentioned them to anyone. There is a state of mind you develop after years with a rare chronic illness. You begin to doubt yourself and your perception of what your body is doing.  It is a weird way to live, because in one sense I have found myself and others who face a lot of medical challenges become very tuned into our bodies and what is right and wrong and when something is different. But at the same time, you don't trust that perception because unfortunately many doctors handle diseases they don't understand by convincing the patient it is all in their head or psychological. So you learn not to share a lot of what you are feeling or think is going on unless you are 10000000000% positive because the feeling of being doubted or thought crazy just isn't worth the is all about the cost to benefit ratio afterall *smile*.
I am particularly careful of this when it comes to the nerve damage. From the moment I woke up in the operating room there were people, particularly my neurosurgeon, who wanted this all to be in my head. It was easier to label me as crazy than to admit his flaws and his mistakes (which he to this day has never done).It took me days of trying to convince him and finally my neurologist intervening for me to be believed and testing to be done to prove yes indeed there was real physical damage and this wasn't some head game or stress.
All that old baggage and those fears were a lot of why I worked so hard over the years to hide this part of my life, and why reopening it now is so hard. My first reaction when I realized I was noticing changes was to question myself and if I was just imagining the changes. It took me weeks before I mentioned it to the trainer and then my previous neurologist. There is a big part of me that fears going back to that place of having people look at me like I am crazy instead of hearing what might be going on because it is so far outside the norm. It has been 14 years since the nerve damage, there is no logically reason for a change now. Weight loss does not impact nerve funcation and I was thinner when it happened than I am now!

But luckily I have some great people in my life, including my previous neurologist and Gui, and both convinced me that this should get looked at again. That it would be stupid to pass up a chance for improvement over these fears. So with Debbie's help I am now scheduled to see a specialist at Mayo Clinic next week.

When we scheduled the appt, I thought the answer I was going to get, good or bad really mattered. That it would be life altering either way. But I realized last week in Israel, it really doesn't matter what the doctors say, it doesn't matter what the tests show. It also doesn't matter if there are changes or the differences are all in my head, because there ARE changes that no test can verify. Last week I walked on the beach, I climbed hills, I kept up, I was like everyone else. That was all I was hoping the tests would tell me I could be some day, but I don't need an EMG to tell me that any more. I found that answer on my own.

I have to admit, as much as I can sit here and say the answer doesn't matter, there is still part of me that is nervous. I am worried that if the tests come back the same as they were in 1996 if I am going to be able to keep the focus that I have right now that they don't matter. That whatever the doctor says doesn't define what I can make my body do or how much more improvement I can make. That the last almost 5 months have had nothing to do with results on a piece of paper, and neither will the next 5 months! Will I have the same drive and desire to keep going with my training and all the changes I am making if I am told nothing is any different? I would like to hope I would, but I remember how powerful the disappointment of bad test results can be.

It's funny as I just re-read all I wrote, I see myself doing it already. I am already bracing for the bad, for not being believed, for what I KNOW has changed in my body to be discounted. I KNOW I am feeling things I didn't before, there is no doubt what so ever. Yet I am already figuring out how to handle being told it isn't real. I really hoping opening this can of worms is worth it. It seemed like such a good idea when we scheduled this, now I wonder if some ghosts shouldn't have been left in the closet!!!!

1 comment:

  1. Shalom Pam,
    I can remember screaming aloud at the injustice that I had been subjected too and the misdiagnoses and fumbling attempts and excuses to explain away my own disability. I remember begging my wife to send me back to the hospital when the pain was so great that the effort to open my eyes was too much too take.
    You, and my aife and a few others, have experienced the horrible realization of being dis believed and made to feel insignificant and to have your own perceptioons challenged by those who are firm in the belief that they know better than you do. It is the tragedy of disabilities akin to nerve damage, that are not as evident as flesh wounds and broken bones. Nerve illness and damage are insidious as they keep having to be proven and demonstrated to those who will always look upon us as malingerers or fakers.
    But, we must NEVER lose faith in ourselves and the truth as WE know it, is our shield and defense against the naysayers. As long as WE are steadfast in being our own advocates and reach out to those few practitioners who really understand what our problems are, WE will always find the truth and WE must always have faith in our abilities to overcome.
    I need not go into here the past that connects us, but I will say that it was a most wondrous and pleasant surprise to see how you have, with I'm sure great sacrifice, improved your physical and mental outlook on life. That is the key to being successful in whatever endeavor you find yourself. Sure, it's scary to go through the testing and the doubts, who has a better right? But WE must deal with whatever comes, not by accepting with sadness, but by achieving all that one can with alacrity, spirit, and good old akshanut(new Hebrew word for you, means "incredibly stubborn.").
    My daughter calls me an old fashioned Jewish father, we are much less maligned than the archtypical Jewish mother, maybe because we tend to hide in the shadows(a safety measure, I assure you). But you have shown me, up front and personal, what you are capable of, what you have accomplidhed, and no doubt, what you will continue to accomplish through your perseverance and knowledge and "Akshanut."
    Shabbat Shalom,