Step three to weighing 338 pounds, lose your nerve (26-39 years old)...

It’s funny the stupid things our brain retains…I can’t remember where I put my keys an hour ago, but I remember unimportant conversations a decade and a half later. Freud would probably say if it was unimportant we wouldn’t remember it, who knows.

I was thinking this morning about a conversation sitting in the back seat of a friend’s SUV riding to High Holiday services, in 1997 or 1998. I had had a hard time getting into the vehicle and commented I should have gotten in on the other side. My friend’s husband was confused by my comment and retorted with “Pam the car is the same on both sides”, Deb knowing my limitations chimed in “Yeah but Pam isn’t”. I don’t why that conversation has stuck with me all these years later, but it has. It was one of the first times I realized I was living a double life.

I have spent most of the last 14 years split in half. Between the left side of my body and the right, between the appearance I put out for the world and how I feel inside my own skin. Between growing my mental abilities and my masking my physical limitations.

Over the last 14 years I have carved out a wonderful life for myself, and I know that. I have a job I love and am very good at, a beautiful home, good friends. For where I came from after PTC anyone looking in from the outside would think I am living a dream. And in many ways I am. Beyond my physical life I have it all. But every step of that dream has been tempered by the limitations of my body and the limitations my mind created because of my fears of my body.

It’s only as I have worked through the last three months that I began to wonder how different the path could have been if the initial approach to the nerve damage, both mine and those treating me, had been different.

Part of life with PTC for me was financial ruin. For reasons far beyond the scope of this blog when I got sick in 1991 I learned that the insurance my father had lead me to believe I had was not a reality and I would face the battle of a chronic illness without coverage. The sicker I got the farther behind I got on bills and my credit. By the time the nerve damage occurred in 1996 I was broke, my credit was shot and I was living on permanent disability and my healthcare was covered by Medicare.

I want to be very clear before I continue, I had some wonderful doctors in Syracuse NY. My neurologist in particular never once gave me anything less than STELLAR treatment because of my finances, and often wrote off many treatments. But when it came to hospitalizations and more so the physical therapy (PT) approach after the nerve damage, I definitely feel that I fell victim to being on government insurance.

The approach that the PT folks took was to get me to walking and using my hand as best I could in the shortest time they could and to tell me to learn to accept my life as it was. I went from paralyzed, to using a walker, to using crutches to a cane. And then was left to figure out the rest on my own. There was never really a push to see what we could get back, there was never really any push to figure out the limits of my abilities. Was that my fault or theirs? Both I guess. But it is something I am coming to regret. As I see now the changes the last 3 months have brought I find myself getting stuck in what could have been if only. I live with few regrets in my life, but wasting the last 14 years hiding behind my physical inabilities is fast becoming one. I try not to let the thoughts creep in but they do.

Life with only feeling one side of my body and severe drop foot (inability to pull up my right foot) has been a vicious circle when it comes to my weight. The difficulty in walking and using my leg lead to me doing as little exercise and physical exertion as possible which helped me pack on the pounds, and the more pounds I packed on the harder it became to walk and exercise. From 1996 to 2009 I went from 212 pounds to 338 pounds. And had I not made a decision to change it 8 months ago I am guessing that number would be upwards of 350 pounds by now, as in the last couple years it was going up faster than before.

Obviously after 39 years it was time for a change...