I would like to be a ghost. I do not want to die you see. I love life. I like myself. I don't want to leave yet. But I would like to be free of my physical self. I am not hideous. Like I said, I like myself a lot. I am petite with golden red hair, slim, I've had relationships so I guess men find me attractive. Or some do. I was born with weak muscles. A rare form of muscular dystrophy which scant people, doctors included, know about or understand. I've had challenges my whole life but it has never held me back. Well until now. Lately my legs have gotten weaker and I can't do everything I used to be able to do. I am obsessed with stairs and sidewalks. How did they suddenly become insurmountable - a pavement is like one of those high walls you see in navy seal bootcamps that soldiers have to clamber over? I can't go up stairs without clutching the banister with both hands and pulling myself up. I feel so stupid when people watch me. Oh poor lady, look at her struggling. I was once at a concert and had to pee. The bathroom was down a gazillion stairs and when I had to return to my seat, I had to do my two handed crab-climb. An usher spotted me. She turned out to be a part-time usher and a full-time nurse. She offered to help me. Said she hated to see me battle so. I hate accepting help. At first I refused. Then she offered to switch my seats to an area that was more accessible. Ok, I said, I can do that. I now avoid concert halls, theaters...unless I can scope them out before hand. I have lost my spontaneity. I am an OCD girl scout: always prepared. Over-prepared.
Some days it feels like a family of minuscule beavers have taken up residence in my legs. I can almost feel their protruding front teeth gnawing at my muscles and bones. My legs ache. I am so uncomfortable I don't know what to do with myself. Some days I just take an Ativan and go to sleep. It's the only thing that stops the fucking beavers.
But its not always like this. It comes and goes like the sun on a cloudy winter day here in Philadelphia. On days where the beaver family, let's call them the Dicks, are away on an architectural retreat, I can't recall what it feels like to be in pain. It's weird that. How on good days you can't remember how bad feels and vice versa. I imagine that if this was not the case, less people would kill themselves. I do know that I am cognizant of when I feel good though and appreciate it deeply. But part of me is wondering, knowing, that it will end so that takes away from being able to fully luxuriate in feeling good. I feel the same way on a vacation. The knowledge that it will end and I'll be back at work sitting at my desk updating Pinterest, always kills my full enjoyment of the break.
I lie in bed some mornings after my iPhone alarm goes off and I think of viable excuses I can make up to go in late. Actually this has nothing to do with my muscle aches and more to do with my love of sleep. My hatred of early mornings and commuting. But thinking of this reminds me of what a good liar I have become. Sometimes I wonder if I've reached the level of pathological. Lies come easily to me. Lately they are not even pre-meditated, they just slip out. Sometimes I impress myself. Mostly, they are my go to method of avoidance. As my limitations have grown, so my fear of doing stuff has grown. Like going to concerts for example or someone's home where I know they have two large steps without a banister by their front door. I know I'll struggle or have to ask for help. Easier to just avoid altogether. Sorry, no I can't make dinner, I have a work event. Of course there is no event. Once it pops out my mouth - I feel a certain level of amazement and then feel a need to sort of solidify it, so I'll add things like, "we are getting a pro Israel imam to speak and I have to live tweet the whole bloody thing! I mean who is even going to be interested in reading tweets."
My pulmologist - the only doctor in the history of my entire life who I have ever liked (and there have been many doctors) - drew me a picture at our last appointment after I whined to him about my weak legs. He drew a small circle and a large circle and said at some point soon perhaps, I will have a choice to make. Stay in the small circle, avoid stuff, refuse help and aids; or embrace all the available methods of assistance like scooters, and continue to live in a big world. When I hear the word scooter, I want to crawl into the fetal position. I don't picture one of those cute zippy colorful scooters you see in Japanese advertisements, I see those square, heavy things with little baskets out front used by disabled people. I don't want to be disabled. I hold nothing against disabled people - I feel terrible for them - I just don't want to be one of them. I don't want a fucking scooter. But nor am I the type of person who can live in a tiny circle. But my doctor is right. At some point, I will probably have this awful decision to make.
Right now I can't even find it in myself to try out a cane. I worry about what people will think. Mostly I can't bear the thought of my boyfriend having a girlfriend with a cane. "Oh, you have a disabled girlfriend." I know when I see someone with a cane, I don't feel pity for them. I don't think less of them. I don't think anything. But the minute I imagine myself holding one - this cacophony of voices enters my head judging me, pitying my boyfriend. I imagine all the questions. "Why are you using a cane, did you hurt your leg?" And then I'll have to give my little speech, "no I was born with a mild (I always have to throw in mild to mitigate their pity) muscular dystrophy (note the shock register on their faces - you? but you look so normal!) and of late my legs have gotten weaker, so I need the cane now." I just can't face all the questions, the pity. Of being outed. That's the thing about my condition - the few of us roaming the planet with it - look entirely normal. Well, maybe thin and crooked in our teens - but we are not in wheelchairs, we don't have visibly-atrophied limbs. Of course I am endlessly grateful for this but the downer is we are not "normal", we can't do what you do. We can't just sit up from laying down. No sit ups for us. We have to roll onto our sides to get up. We can't sleep without mechanical support. When we get sick, we get really sick. I won't bore you. My point is - our normalcy leads to expectations of normalcy and that is when worlds collide. And at some point, I can no longer hide my limitations.
I have started therapy again. Maybe in part to help move me out that tiny circle and into that large one. I know I need help. Funny I'm not afraid of psychological help like I am of physical assistance. So while talking, I have come to realize that I have lived my whole 46 years in a certain state of denial about my muscle affliction. Until I was about 25, I never told anyone I even had it. As a teenager I looked like a human toothpick - I definitely did not look like my peers (not to mention from age 15-17 I wore a plastic back brace 23 hours a day) and yet I carried this terrific shame and embarrassment that I had this disease. When I was eight, I had a muscle biopsy. At the same time I was starring in the play Peter and the Wolf playing the main part of the bird. When I returned to school post surgery with a big scar on my upper arm, I told my friends I had been rehearsing my role by running
up and down a ladder (I guess simulating flying) when I had fallen and hit my arm on a rock in the garden. The early beginning of my lying pathology. This is how it all began. Denial.