This week has found me drained and comparatively unproductive. That happens to everyone from time to time. This time, however, is different. I've literally been having to drag myself out of bed every morning. Everything I do requires extra effort-taking a shower, washing dishes, getting out of the car, remembering how to determine alphabetical order when filing. The muscles in my face are weak and my words-be them English or Spanish-are constantly tripping out of my mouth like newborn horses struggling to take their first clumsy steps. All I want to do is sleep. I feel like I'm about 80 years old. It's not the first time, and it most certainly will not be the last.
Here's my simple explanation of what multiple sclerosis is: you have an electrical appliance, say, for example, a lamp. Its cord plugs into an outlet in the wall in order to channel electricity into it and allow it to turn on and function. That electricity is channeled through the wires contained in that cord; however, those wires are not exposed, rather, they are protected by a coating of plastic or some other versatile material. What happens if there is a break in that plastic? That leaves the wires exposed and dangerously vulnerable to power shortages. Basically, power will not be conducted properly, the lamp won't work, in addition, the cord is now an active fire hazard.
The nerves in the brain and spinal cord are like those electrical cords. They send signals to every part of the body and tell them what to do; whether it be alerting the skin to sense heat or clod, or telling the legs to walk, even reminding the respiratory system to initiate the breathing process. The coating on those "cords" is called myelin. In a person with MS, the myelin is damaged the same way the plastic sheath of an electrical cord may be torn, and it results in similar problems for daily functioning. As a result, I struggle with my balance, I often stutter, I have memory problems, my vision blurs from time to time, I get spasms and numbness in my limbs. But what affects me the most is that the constant war going on in my body causes me to have periods of extreme fatigue. There are times when the best place for me to be is in bed. I have a hard time permitting myself to have those kinds of days. But lately, I just really haven't had much of a choice.
I was diagnosed with this disease 8 years ago; I'm not new to this. And I've lived through stages that were much worse. Ironically, it was a little easier to deal with emotionally when I was bound to a wheelchair. Back then it was obvious what I could and couldn't do. Now that I'm in remission and have had about 80% of my function back for a while, I have moments where I feel so healthy and normal that I completely forget, and those injections of interferon beta that I have to take 3 times a week feel as routine as brushing my teeth. I have a full and busy life, in which the disease takes a back seat. It's a footnote, not a chapter.
Or so I tell myself, and most of the people around me probably see it that way as well. I'm not dying- I look fine and have all my limbs. I'm not incapacitated; I just walk funny, and I have that cool disabled parking placard that makes trips to San Francisco so much more pleasant. Most of the time I would rather things just be that simple. I know I've got a "thing" going on, and it doesn't disrupt my life very much, so I'll just pretend it isn't there. Plus, it is very difficult to explain an "invisible" and uncommon illness to people without them thinking you are a hypochondriac or just plain lazy. Either you are a lazy hypochondriac, or you are perpetually broken and can't do ANYTHING. It can be hard for others to comprehend, and frustrating and alienating for me to try to explain...so most of the time, I don't. I usually just push myself to the limit, so that I may look and feel like a normal young adult, no questions asked.
This has really been one of those weeks that has not lent itself to keeping up appearances at all. As I mentioned at that outset, I've been struggling even to perform the simplest tasks. This is what is known as an exacerbation, commonly known in MS terms as a "flare-up." Flare-ups occur without warning, and can vary both in frequency and intensity. The only thing I can really do is try to rest through these attacks. However, I do admit that emotionally it is very difficult for me to allow myself these periods. And it's just as hard for me to take the simple preventative measure of slowing down a bit. I'm 31. Nothing should be slow yet. I'm surrounded by older people remind me of that constantly. These are the times I resent this disease the most, not so much because I lack strength to do what I'd like-though that's also an issue-but because I find myself forced to explain it to those I have to let down. I just don't like discussing it. Why, I don't quite know.
Perhaps because verbalizing it makes it harder to ignore. But realistically I can't pretend it it isn't there, the way a small child might cover her eyes and believe that no one else can ser her. I have to keep looking this thing in the eyes if I'm to keep it in submission and live my life. I know it's a reality I didn't ask for, so why should I be ashamed? I suppose I don't like the fact that it leaves me open to however people may view me, perhaps as someone useless and defective, or someone making excuses for herself. I can't do anything about it either way. Everyone won't understand; yet I suppose I simple must trust that, as my mother says, "they are required to love you anyway." The only thing I can control is how I view myself. I do the best I can, and some days, that "best" produces a lot; other days my "best" may barely eke out a fraction of what I'd hoped to achieve. I'm a functioning person with some malfunctioning parts. But when I really give it some thought, aren't we all? Defects, limitations, illnesses (whatever their nature) are not what we are; they are simply hurdles with which we must all contend. At least, for right now.
Here's a video for my "visual" friends:
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