"Alot of people want distinction without risk. They want to be known for themselves without knowing themselves. They want to stick out in the crowds, but not far enough to actually be isolated. "
I completed my first week of therapy. I signed up for a four day a week semester of therapy, 2 days aquatic and 2 days land based exercise, at the Brown Center for the physically disabled in the Department of Kinesiology at California State University, Northridge.
From what I hear it is one of the best rehab clinics in the country with its 19,000 square foot indoor aquatic facility and a packed gym with every exercise machine you could need.
The week was good and it's nice to feel "active" again. I degraded alot during my time in San Francisco, and it's only coming back to LA that I'm realizing how much so. As soon as I hit the gym I want nothing else but make due with the hour I am given. An hour goes by really fast especially when it takes so long to transfer in and out of machines, into the pool, changing clothes... I have an assistant although I'm not terribly friendly during the hour because all I want to do is workout. I strap on my headphones and try to move as fast as I can and work as hard as I can.
I also completed my first week of paratransit, service that transports those that qualify in the city's disabled transportation service. That has been interesting. My first day was Monday for a 5pm pickup. I rolled out to the front of my apartment and for some reason felt jitters. As I sat on the curb I reflected back to my first day of school, holding my strawberry shortcake lunchbox and backpack and nervously waiting for my first ride on a school bus. It's weird to make connections to times that you think are done, and yet revisit you as you get older. For the elderly who age and become like children again, for a young girl in her prime to feel like a first grade school girl again. It's interesting. I have an illustration for this point. I'll post later.
Well, I'm very happy. I was accepted in the Los Angeles, Paratransit (Access) services, a transportation service for people with disabilities that offers door to door pick up and drop off. A few weeks ago I was evaluated and then the city decides if I am a candidate.
It may not seem much, but it's a big deal. I stopped driving at the beginning of this year and lost alot of independence. Not having the freedom to pick up and go can seriously do a number on your spirit. It's something we take for granted. Like, going to the bathroom on someone else's schedule. I hate being at the mercy of others and that's exactly what it is.
There are a few logistics to figure out, like how do I get myself from standing position into my wheelchair, over my door threshhold, that's only 1/8" high but remarkably makes it hard for me to push myself over it, roll myself down, into the elevator, out the apartment complex door, into the handicap lift and down the ramp to the curb. Sounds like alot of steps. Every step of every day has to be considered and planned.
I'm looking into a different wheelchairs and still waiting for my sensor activated wheels (that will help with some of the propelling over thresholds and curbs). The front wheels of my current chair are proving to be too small to handle slight thresholds...so, I need to improvise.
The paratransit service isn't a complete answer nor complete independence, but hey, it's a step to more independence. Paratransit won't work for every scenario, but helps a great deal. It's much easier to get around this way. It's all new to me and every stage of progression throws a patient into the land of not knowing how to adjust. It can be physically and emotionally tiring, but gotta keep going. It has been great to come back and see what friends are there to help me get through these stages. An advantage to see who is there for you when the chips are down.
In addition, today I start my physical therapy semester. Every week it's two days land (gym) and two days aquatics. I'm very geeked. Lack of physical activity means lack of endorphin release. Without endorphins there's a chance of depression. When you can't get out of your house for some sun intake, the lack of vitamins can lead to sadness, too. An HIBM patient can't go crazy with exercise as it risks muscle damage, but anything is better than nothing.
Lately, I've been trying to eat better and stretch/exercise as much as my body will allow me. I'm even losing weight O-0. It's been awhile since I've been in full workout attire. It's kinda nice.
If I'm not moving in some way, mentally, inspirationally, creatively, intellectually or physically, then I get down. Here's to getting up.
It was my first time visiting Joshua Tree, picked it out of a hat and off I went with plans of doing some drawings in my sketchbook. I really enjoyed it...it was dreamy...another land...and the trees were like old men populating the land. Stories were told.
Whenever I'm feeling blah or bored all I want is to take off to somewhere, as much as my body will allow me, and do anything to perpetuate creative inspiration. Creativity, it is seriously the only thing that saves me. Since, I can't hike, I sought for other inspirations. It was good.
I started a tumblr awhile ago. I've finally attached it to my blog and will do my best to actually post stuff in it. I wanted a simple spot where I could do quick posts of things that I find cool or inspiring. Afterall, I have other things to talk about than my cane, wheelchair, orthotics (left one, charlie and right one, bucket) and the like ;). My tumblr page is located in the menu above.
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.
With my condition, HIBM, though 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, like where there was once muscle, my thighs and triceps, it has degraded to flappy, fatty, droopy skin. 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 no, or rather decrease, 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 hallow with only skin connecting my fingers. The muscles, Dorsal Interosseus, that occupy the space between the metacarpals decided to take a vacation. They left me. No Dear John letter in sight. 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 it a round of applause while the inter workings are in play. And, how could we anyways? There's no possible way to notice every second and really appreciate the amazingness that happens inside our body, a growing tree, a flower, a random stranger's life...
I'm not here to preach about how we should appreciate everything. Yuck, how likes preach 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...but, when I say we don't appreciate things when we have them, I don't just mean that showing appreciation is taking part in every physical selfish pleasure one can get there hands on, I mean appreciation by noticing those that don't have and extending ourselves beyond ourself. If we fully appreciate, we pass it along to others rather than going on about "how lucky or blessed I am" while pushing down the gas pedal as the light turns green, leaving that thought 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 so badly 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 everyone else does, too.