(NB: this and following Life of Ryan blogs are coming under my personal blog rather than from him directly. The reason for that will become obvious to readers. “Ryan” (not his real name) has given me permission to post these blogs. Read and consider your thoughts and feelings. If you choose to respond, do so on the blog or directly to me: firstname.lastname@example.org. I will pass it along to Ryan.)
My name is Ryan. I’m writing to you from my home, a home where I have lived for the last 20 years, longer than I lived in any other home. It is good home, and it serves me well, but I often hate it.
It’s not the brick or mortar that I hate. The physical structure is fine. There is nothing wrong with how the walls and ceilings have been built, seemingly by very good tradesmen. I never have to worry about the electric or plumbing needing repair, or the roof needing redone. In fact, a person couldn’t ask for a more solid structure. In fact, it’s a rare time that anything goes wrong with the structure. Home owners should be so lucky.
It’s not the people in my home that I hate. The people are quite nice, at least for the most part. They do a fine job taking care of me. In fact, they do more for me than most people get from their co-inhabitants. I never have to do laundry or the vacuuming. I never have to do the dishes. I don’t even have to fix meals. The other people in my “home” do all that stuff. What other man is so lucky to be treated like a king of his castle?
You should be as lucky as me. I just sit back and enjoy all these privileges: house repaired as necessary; household duties taken care of; meals prepared regularly. People stop by to see me and chat from time to time. I’m even given in-house entertainment, like games and parties. I just sit back and watch all this work being done. Just sit back and watch TV, play video games, and keep up with my Facebook friends. Well, that doesn’t always work because my computer goes down from time to time and I have to wait for the IT guy to show up and fix it. But this is not so bad because all the other things in my home are taken care of. And get this: I have two people in my household who actually give me a bath. For the most part I have nothing to do but hang out while I watch all these things being taken care of. You should be so lucky. Living the good life, yes?
It sure seems like to the good life, doesn’t it? There is a slight problem with my being the king of my castle with all these privileges. What could possibly be missing from this scenario where all the necessary things of life are being taken care of for me? What could possibly be wrong with my just sitting back and watching TV while everyone else in my home goes about doing household duties? What’s wrong is this: the only thing I can do is “sit back and watch TV while everyone else in my home goes about doing household duties.”
I am not able to do the dishes and repair the roof. I am not able to fix the plumbing and re-wire the kitchen. I am not able to shovel the snow in the winter and cut the grass in the summer. I am not even able to change the channel on my TV. In fact, it is quite an effort for me to actually play video games and get on Facebook and do email. It actually takes my breath away to get on Facebook and check my emails on my computer. It literally takes my breath away to do these things. I huff and puff to do this small task. Well, not exactly huff and puff; more accurately I sip and puff when I’m trying to navigate my way around the computer.
Puffing and sipping is the only way I can operate my computer because I have multiple sclerosis. I can’t move. I can’t move at all. All I can do is sip and puff. I can’t move my arms. I can’t move my legs. So I can’t scratch that itch on my leg. I used to have a little use of one of my arms and hands, which helped me greatly because I could change the TV channel, migrate the mouse on my computer, and use my electric wheel chair. All that disappeared several years ago, and I am left with speech as my only means of communication with the world around me. But even that is waning, something that tends to happen with MS patients as the muscles surrounding speech began to deteriorate. I can go from speaking normally to whispering to moving my lips without any sound at all depending on how these speech-based muscles want to cooperate.
It must sound odd to hear someone say that he wishes he could fix the drain in the bathroom, shovel the snow, cut the lawn, repair the kitchen electric, or climb on the roof to repair the leak. But that is exactly what I wish I could do. Even more so, I wish I could get on the floor and wrestle with my grandchildren. I so wish for lots more, like kissing these grandchildren, and my own children, and my wife, but even this is a huge effort that is rarely made. Besides, who wants to kiss such a bump on the log when the guy can’t simultaneously wrap his arms around you?
All of this sound like so much complaining. I suppose it is. I try real hard not to complain. Yes, sometimes it is a challenge to puff on the mechanism that alerts the staff of some need I might have, and even more of a challenge to wait for an hour to have someone respond to my call. But for the most part, I am not inclined to complaining. In fact, my psychologist has asked me to “feel bad for myself” every day. He says that it would be good for me to “just feel bad” for a while. I don’t see the point. In my mind, it’s going to be the same thing today as it was yesterday and the same thing tomorrow. So what’s the point of feeling bad for myself? It just seems like so much complaining.
By the way, this same psychologist has taught me a new word that is relevant to this discussion: amanuensis. I understand this is a sophisticated word that means ghost writer. He has initiated this current monologue and may be willing to help me with others. He is my amanuensis: he writes what I tell him to write. Well, he is a bit more of a writer than I am, so the words are largely his. But the ideas and the feelings are mine. I tell him what I am thinking or feeling and then he goes home and writes up some kind of monologue like the present one.
I plan to do more of these. The idea came up during one of the conversations that I had with my psychologist. I told him that I was disappointed in my “legacy.” But that is the next edition of Ryan.