When I was a kid, I remember getting really annoyed with my mom, and once they got older and had jobs, my sisters as well, on lazy afternoons. They would want to relax. Hang around the house watching a movie, or reading a book. I had so much energy brewing under my skin that I felt I might explode from internal pressure. I would bug, pester, and goad them trying to get someone to do something, anything with me. My mother would always tell me, “Someday, in the future, you will understand.”
I already did start to understand years ago. Now, though, I really, really understand. I love being at home. It’s where all my favorite shit is! Yes, I enjoy getting to see my friends. I like sitting at a bar, meeting new people. I have fun at outings and get togethers. There is a difference now, though. It’s like I have a cloud hanging over me, ready to unleash a storm of twitches, headaches, fatigue, and blurry vision at any time. It makes it harder to just sit back and enjoy, when out in public.
I used to thrive on the energy of being in a crowd. That energy I had as a child that used to drive my mom and sisters crazy, never really left me as an adult. The only difference was that it was now Jen, instead of my family, that had to deal with the manic restlessness that would emanate in all directions, with me as the center. I would literally be bouncing in my seat, at times. I couldn’t stand to sit still for too long.
These days, I long for the naps I was forced to take as a child. I jealously look back at those days with a slight memory of how that felt. Filled with energy. Dying to go do something with it. Go to a club. Hit up a party. Just drive around aimlessly. ANTHING! I simply didn’t want to sit in the house watching a screen.
Now, it’s what I often want to be doing in stead of whatever I happen to be doing at any moment. Carrying on a simple conversation can be exhausting. Not because of the company, mind you. (Although, sometimes it is. Tee hee.) It’s exhausting trying to keep my mind on the discussion. My mind gets so foggy sometimes, that I am trying my hardest to listen, and I often am hearing the words, but they just aren’t being deciphered by my brain to make any sense. I have to ask people to repeat themselves, even when I have actually heard what they said. I heard the words, but they didn’t make any sense. It’s like they are speaking a different language. One that I have studied for a while, but one that I really haven’t mastered to the point of fluent conversation. I can pick up pieces of it, but I also know I’m missing important information pertaining to the story.
I’ve learned to laugh when other people laugh, figuring the story was funny. Or I say, “I’m sorry to hear that.” after someone else gives condolences, not really knowing why. This doesn’t always work out. Sometimes, I laugh inappropriately, only retaining a part of the conversation that, out of context, sounded funny. Or I give a very serious response to something that I didn’t realize was a joke, because my brain didn’t retain the ‘funny’ part.
The worst is when the tremors come. I try to hide the shaking, and that usually makes it worse. It usually starts in my right hand, so I’ll stick it in my back pocket, swing it back behind the chair I’m sitting in, or simply sit on it. That helps for a while, but it stresses me out, which usually causes the shaking to spread. Sometimes, it becomes so bad that it looks like I’m continually saying yes. Embarrassing! Jen told me the other day, that I should take full advantage of it, and just start swearing so that people just think I have Tourette’s. Unfortunately, I can’t come up with enough swear words to string in a row to make it believable, or I might have taken the challenge.
It’s just easier, these days, to stay home. I can twitch, shake, zone out, or simply be silent and let my mind rest. It does seem to need it more often.
You see, there’s no chance of embarrassment and no reason to feel I have to explain why I just tossed a good portion of my bag of popcorn on the floor. (I actually just did that last weekend when I went to see the new ‘Star Trek’ movie with two of my best friends. I had a spastic twitch, and shot a fourth of the bag on the floor of the theater. It’s okay. You can laugh. I can, now. It was embarrassing at the time, but I would have laughed seeing it.) It’s like a mentioned in an earlier post. Things like that will happen. I’ll run into something that I thought I had full clearance around. I’ll pick something up, just to have it immediately fall to the ground out of my grasp. I’ll toss a tasty movie theater treat straight to the floor. When these things occur, I want to explain myself. I want to tell people who witness it that I didn’t simply pull a klutz move. I want them to understand that there is a damn good reason for it. Unfortunately, it’s a choice between just letting people discern their own reasoning behind it, or letting them in on the knowledge of the disease. Both kinda suck, to be honest. You get the feeling that your choice is between being seen as a fool or a leper. Which would you choose?
Honestly, though, if I were independently wealthy and single, I don’t know how often I would venture out into the world. I have the feeling I would become rather (Crap. The word I was going to use just left me. l can’t get ‘hobbit’ out of my head. That’s not it………..Hermit!!!! That’s it!) I would become rather hermit-like if I didn’t have to go out and earn money. I would just stay home, locked in my tower with Kleenex boxes on my feet, and a giant airplane that lumbers to fly, parked in the driveway. It would just be so much easier! Every once in a while, I would have people over, just to prove I was still among the living. Other than that, I would hang out with my good friends Netflix, Hulu, and Blu-Ray, who never notice or care about the shaking, twitching, and general crappy feeling events of my being.
A part of the difficulty with dealing with having a disease like this is how it effects the people who do care about you. They often get forgotten in the mix. The person directly hit with the health issue becomes the focus, and people forget about those around them. How many of you know Christopher Reeve’s wife’s name, let alone her struggle dealing with her husband’s paralysis? I doubt many of you remember, because all of the focus was on her iconic, Superman portraying husband. But I ask this question of you. What takes more courage and strength? Fighting disability that you, yourself have been struck with, where you have no choice but to deal , or choosing to stay with someone who has been stricken with the problem, when you have the option to leave? I tend to think it’s the latter. Home, most likely, is not the haven for Jen that it is for me. I don’t want to get to far into that right now, though, since I am encouraging Jen to write a guest post stating her experience living with this situation. She will be able to give a first hand account from which I can not. Plus, she is a better writer than I, so it will be very informative. I think you will learn a lot from her point of view, as will I.
So, back to the subject at hand. As I sit here in front of my television, I’m wishing I didn’t have to go to work later today. Not because I hate my job, which I don’t, but because it means I’ve got to deal with the possibility of my symptoms exposing my situation. That brings questions. Some are outright asked. “How did you run into that. It’s in plain sight?” “You look tired. Is everything okay?” Some are not voiced, but are obvious, none the less. That look of ‘What the hell is wrong with him?’ ‘Why does he keep shaking his head?’ This happens every single day, when my symptoms are showing. And in this heat, they are almost always showing.
Well, unfortunately, I am not independently wealthy, so I’ll have to buck up and go face the day in public, even though I would rather stay right here in my haven of home. It’s just how it is.
I think I’ve cried into my coffee enough for this installment. Hopefully, in the next couple of weeks, you’ll get to hear from Jen. Help me egg her on!
Until next week, keep on living and breathing, and remember that everyone you meet might be dealing with something that made them not want to leave the house this morning. Treat each other well. See you next Tuesday!