What it's like to live with a progressive neuromuscular disease

Friday, December 14, 2012

The Vortex

Today I had an appointment with a new orthotist (a person who fits one with AFOs/leg braces).  I wanted to find out if there were any newer, better options for me. If perhaps there was a new design that could be just as effective but perhaps somewhat more aesthetically pleasing than my black carbon fiber ones that come up just below my knee.

I don’t know why, but I thought the appointment wouldn’t be a big deal. I have been wearing leg  braces for a few years  now, so I figured the shock and trauma that I experienced in that very first visit (or even subsequent visits) wouldn’t revisit me.  I figured by now I had become somewhat desensitized to the whole process. The process of sitting in a waiting room with people over twice my age (like the 80 year old man next to me today who needed AFOs post-stroke), of walking into an exam room with a clinician who of course has never heard of HIBM and who is somewhat mystified and in awe of my array of random areas of weakness, and the process of having to repeatedly answer, “I can’t” in response to his requests to lift up my  foot or rotate my ankle. After examining me, he left the room to get a few samples of different braces for me to try on. As I sat there alone, a wave of disbelief came over me. I wondered if this was really happening to me. If this was really my life. If this was really how the rest of my life was going to go, only worse of course because my options would only become increasingly limited. And then I felt it coming. I knew I was slipping into the Vortex. That’s the word I use to describe the space I’m in when I let the reality of this disease in, fully and completely. Sometimes I am just powerless to fight it. There is no positive self-talk I can do to try to protect against it. There is no way to avoid getting dragged into it. It’s too big, too scary, too real.

When he came back in the room, he asked me if I had heard of electrical AFOs, where an electrode is placed on your leg and stimulates the weak muscle to contract for you. I told him I didn’t think I was a candidate because I didn’t have enough muscle tissue left and he said in his happy-go-lucky way, “Well, let’s give it a shot, it can’t hurt.” So, he tried it. He kept cranking up the voltage. And though I felt the zap of the painful electrical impulse, it didn’t translate into any kind of movement. I stared straight down at my limp, lifeless leg resting in his hand.  He could not awaken it. He eventually gave up telling me that he had turned it up so high that if it had been on his leg, “it would have kicked up to the ceiling.” I smiled politely and said I figured as  much. I knew he had no idea how emotionally painful that little experiment had been for me. I knew he was only trying to be helpful. He couldn’t know that he had added another little tombstone to my cemetery. It was a loss I had experienced a while ago now, but I was mourning it all over again.

By that point, I just wanted to leave. It turned out there was no newer or, as was my wish, magical brace that was going to change the fact that I have this disease and that I will be living with it in some capacity for the rest of my life. I walked back to my car, parked in the disabled parking space of this random parking lot and  closed the door. I let all the feelings in. I sank to the bottom of the Vortex. I stayed there for a bit. I didn’t try to reconstitute myself before I was ready. I didn’t try to think of the smiling faces of my children or all of the blessings in my life to make me happy. I gave myself permission to just be where I was.

Eventually, I got back on the road and came home to those joys. And I am slowly climbing back out.

But if there is one thing that I have learned in all of this, it’s that the only way I can live most of my life outside of the Vortex is if I allow myself to sometimes fall into it.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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