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

Wednesday, October 7, 2015

The million-dollar question

Exactly a month ago, I was walking over to say goodbye to my younger son and our nanny at an indoor play area and I tripped on a toy and fell. I went down hard and my left hand, the much weaker one, bore the brunt of it. A bunch of people saw and rushed over to me, but per my usual, I played it cool. I told them I was fine. I can’t stand that kind of attention, probably because it’s on top of what is now a new baseline of daily unwanted attention. Luckily, my son didn’t see and I decided to skip the kiss goodbye and instead wave from afar. I needed to get out of there as quickly as possible. I came outside and saw blood leaking out from under my rings on my ring finger and discoloration on my skin. It hurt like hell. I walked to my car, not just feeling the physical pain but the emotional angst of realizing that I probably wasn’t going to be able to go exercise that morning. (Exercise is no longer an optional luxury but rather a means of muscle preservation and survival.) Within minutes, my ring finger started to blow up. Luckily I had the sense to take my rings off right away. I started driving. I didn’t know where to go. All I wanted to do was drive to the gym. But two blocks in, it was getting so bad that I had to pull over at a random Taqueria and ask for a cup of ice.

I really did not feel like spending the morning at the urgent care. So I started driving towards my physical therapist’s office. Maybe she would tell me it didn’t look that bad and I could go about my day. But of course, she was worried it was fractured and told me I needed an x-ray. Of course I did. I knew that I did. So I cried to her and she gave me a hug in that most tender, loving compassionate way that she always does when she sees first-hand how unforgiving this disease is and I headed to the urgent care at Kaiser.

It’s amazing when you enter a hospital setting and see so many others using a cane. And then it’s even more amazing to see that the majority of people using a cane are all elderly or seem very infirmed.

I sat in the waiting room, wondering how many more times I would find myself there. In the next year. Or the next five years. Would it be for a for laceration on my forehead like another HIBM patient I know? A broken arm or a leg? Not catastrophic fears. Real outcomes in real patients. The hardest part of that urgent care visit was when I had difficulty arranging my already weak fingers in the correct positioning for the various views needed for the x-ray. The reminders never stop. There’s never a pause in the awareness that I have this disease. Or that I will always have this disease.

For all intents and purposes, I had fractured my finger. Though he couldn’t detect a break on that initial x-ray, he said it’s common for a fracture to show up later on and based on how it was presenting, we would need to treat it as such. By that time, the entire finger and parts of the surrounding ones had turned purple and black and my finger was swollen in a way that was rather fascinating to me. He put my finger in a splint and that was that.

That was a month ago. Though the swelling has reduced somewhat and the discoloration has started to fade, it remains incredibly painful and I have almost no range of motion in that finger. On the one hand, my joke has been that it’s such a weak finger anyway, it doesn’t really matter what happens to it. On the other hand, because it is already so weak, I need to try to preserve strength as much as possible. To be quite honest, the most frustrating part is that I haven’t been able to wear my wedding and engagement ring.

So a few days ago, I decided I should probably go in for a follow up and figure out what’s going on. I had the appointment this morning. The doctor was a lovely middle aged Persian man with kind eyes. He looked at me then looked at my cane and I quickly explained that the cane had nothing to do with why I was there. Well, not really. He asked me what the cane was about. I put on my doctor hat and told him about HIBM. He was shocked. He’d never heard of it. He wanted to write it down. He asked questions. He asked if I had seen the neurologist at Kaiser. I said there was no point in being followed by a doctor. He said that’s true, but he was actually thinking about for other patients as there are a fair share of Persian patients at Kaiser. Of course, I said. Then he started to examine my hands. It’d been a while since I’ve had that kind of exam. He asked me to bend the tips of my fingers on my left hand. To resist against his. I told him and showed him that I couldn’t. He looked up at me and when his eyes met mine, I saw in them a mixture of disbelief and confusion. Then he asked me if I could bend my fingers at my knuckles. Of course, I couldn’t. I could see him trying to take it in. Not understanding how this mysterious disease worked. I saw him compare my two hands and feel where the atrophy has melted away the muscle between my thumbs and forefingers. The area my eyes are always checking in on but my mind is constantly trying to ignore.

I felt my doctor hat slipping off and my patient hat coming on. I tried to resist. I told myself not to cry. I repeated it to myself like a mantra. Don’t cry. Don’t cry. I swallowed it back down. We talked about how there isn’t a whole lot to do. We can “buddy tape” it, but the fractured finger doesn’t have a healthy ‘buddy”
to move around with it. We could put on a night splint, but unlike a normal finger, my fingers don’t really bend much anyway so it’s not really indicated.

He said he would refer me for hand therapy and we left it at that. Lastly, I asked him when he thought I might be able to wear my rings again. Or if my finger would just remain this deformed permanently. He said that was the million-dollar question. My least favorite answer.

My rings. My beloved rings. I’ve been so hung up on the fact that I haven’t been able to wear them. Why? Why has that been such a big deal? It’s so minor in the grand scheme of things. But then I let myself unpeel that piece. And underneath was hiding the realization that when I leave the house with those rings on, they serve as my shield out in the world. They protect me. They reassure me. They scream out that I am loved. That I don’t just have this thing going on. This unsightly gait. (Please allow me to hate it.) I wear my ring and I am reminded I have have a whole life that balances this. This what you see before you. They represent the innocence and carefreeness I was so blessed to live in during my pre-disease life. They are my security blankets. Without them I feel vulnerable. I feel insecure.

I wish i didn’t find myself in a position where this is something that I care about. Something I find myself relying on. And yet, here I am.


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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