I started this illustration awhile ago. I just finished it. It is meant to be a wall piece, each one its own framed panel. Mix and match as you please.
With a progressive muscle condition there are major and minor milestones. Some that are noticeable to others and some that can only be experienced in the most intimate moments.
I can physically feel the depletion of my muscles. It can be deciphered tactilely. I can detect the growing loss through increased difficulties of both major and minor tasks, and I can even visually see the loss.
HIBM, although a wasting condition, it's not the type of condition where the body wastes away to mere skin and bones. At least not to the extreme like other conditions. So, to most I look perfectly healthy.
I generally experience the loss through weakness, but rarely do I visually notice it on my own body. I guess because I'm with myself 24/7 and don't stare ay my body all day (I know, how could I not? ;) There are little things I notice. For example, where there was once muscle in my thighs and triceps, it now has degraded to flappy, fatty, droopy skin. At least I notice, no one else may. My thighs have gotten heavier, fatter. I know, I know as one gets older this is supposed to naturally happen but there is nothing I can do to influence the situation, unlike "normal" 30 somethings that could hop on a bike and work it off.
There is less muscles to absorb the calories one intakes, so it turns to saggy skin. My triceps are like this. They hang lower and lower and if you feel them there is barely anything left.
A few months ago my friend was stretching me out. I've decided to take time to focus on my health. I rarely do. I rarely put myself or my pleasures first. I normally am too busy doing for others. It's a good thing but also a mistake. I just moved back to Los Angeles and as part of my new location I signed myself up for a four day a week therapy program. Besides that I do my best to either have someone stretch me out or do my own daily stretches by myself.
My friend Joey was stretching me out and he started rubbing my hands.
"You have no muscle between your thumb and index finger," he said.
"Huh, I had never noticed that," I said while gazing at my hands wondering why I had not noticed it.
The area casted big shadows and pretty much was hollow with only skin connecting my fingers. Like a web of skin. The muscles, Dorsal Interosseus whose primary function is to flex the metacarpophalangeal joint, occupies the space between the metacarpals must have decided to take a vacation. They left me. No Dear John letter in sight. Nothing. I was more surprised that I had not noticed it myself. That's when I started doing this drawing.
It's fuck'n amazing all that goes into every breath, every step, every movement, things that we will never take notice of or give a round of applause to. The body is in constant work mode even when we are at rest. There's no possible way to notice every second and really appreciate the amazingness that happens inside our own body.
I'm not here to preach about how we should appreciate everything. Yuck, who likes preachy people? Afterall, I still don't appreciate every second of my life. I would say I do take notice and appreciate way more than ever, but it gets away from us.
The friends I have that really take advantage of their bodies and talents, I admire and watch them from afar.
When I say we don't appreciate things when we have them, I don't just mean "appreciation" as in indulging every physical pleasure one can get their hands on. I mean appreciation by noticing those that don't have and extending ourselves to others. If we fully appreciate, we pass it along to others rather than going on about, "How lucky, how blessed I am". It's like pushing down the gas pedal as the light turns green, leaving those temporary thankful thoughts to the wind.
Even though I have really bad days, days that I don't think I'll be able to drag myself out of the continuous loss and would rather retreat for forever, I know I have to slap myself and not make it just about me. It's not just about me.
With that, I'm not here to hide the fact that it can be deeply saddening and there are days I feel like I will never quite get over the loss. I miss the physical movement and I know every other patient does, too.
