Many people have asked me what ALS is like. I view ALS like it is a glacier that is dragging me, like a boulder, beneath it, grinding me down to nothing. Grind is a good word for it. Everyday is a grind and everyday is about the same. I am completely dependent on my power wheelchair now. I have lost my arms and legs completely but I have the use of my big toe (which is how I can still write). I cannot hold my head up so my chair is equipped with head restraints which do what my neck can't. Everyone has taken to calling them eye brows. Every morning around seven am. I am lowered into my wheelchair by my wife and daughter. This takes about twenty to thirty minutes to accomplish. Once they straighten me out in my chair by tugging and pulling various limbs until I straighten up then they close the eye brows as they push my head back into the headrest. "CLICK! CLICK" is the sound that echoes through my skull as the pressure on my forehead reinforces that my prison cell has been locked. Of course, my chair isn't a prison. It's a cutting edge piece of technology that I drive with my mouth. It gives me freedom. But this isn't about the chair, it's about the mental and emotional pain that, being robbed of its body, your mind incurs. As long as I am in the chair it is a constant reminder of what I have lost. It's the littlest things that trigger me. When I get an itch, I reflexively reach my hand out to scratch it and nothing happens. I then must decided whether or not to alert someone else or just endure the burning sensation until it dies down. Or the times that I want to bend my legs. First I bend them right where I want them and then I realize that they never moved. "Oh, yeah, f'ing ALS! Can someone bend my legs?" I see pictures of people doing fun stuff on their vacations to the beach, Las Vegas or just going out to dinner with friends. Even just watching my family go out to do something while I get to hang out with a friend or family member, aka babysitter, reminds me. My most torturous moments are when I have to witness displays of affection. I was a hugger! I delivered a mean hug with my wide shoulders able to wrap around my victim. Don't even get me started on hugs from behind. Now, I sit by, idly, as people try to hug me through my chair apparatus. The physical isolation is maddening. The most physical contact I get is when my care giver and the hospice health aid wash and shave me. I'd be happy to reciprocate but I can't. My needs for touch are gargantuan yet so limited because of the restrictions ALS via the chair has placed on me. I am never left alone but I am constantly lonely. It's my need to be an interactive part of society. To bond with humanity. Right now, my days are spent watching others in their daily physical interactions with the world. I'm marginalized by ALS. You can say no but it is true. I am the elephant in the room now. The question being should I be approached. I'm not that loud guy who wouldn't shut up and eliciting the thought, “Maybe I should go punch him in the nose and tell him to be quiet!” Oh, those were the days! I miss the daily physical touch that I once had. Yes, the emotional touch that I receive daily is powerful and fulfilling but it's not physical. There is no replacing a reassuring hug, a kiss, a pat on the back, a good, strong handshake! I don't mean receiving them, I mean giving them. It's great to receive but it's more powerful to give. So, that is my daily grind at the moment. Slowly being ground down to dust by the ALS glacier. But like any stone, I'm making some gouges in the bedrock of humanity. Even if they may only be a few inches.
So, what is ALS like? I have had many people ask me that and I usually have a witty, profanity laden reply for them. But it isn't really the truth! The truth is I don't know what ALS is like because it isn't done with me by a long shot. I don't think I'll understand this bitch until I take my last breath. ALS will then tell me it's secrets and I'll probably think, "Really? I could have found that inside a fortune cookie!"