When I was diagnosed, communication about my future with friends and family was difficult. Of course we cried, got angry, asked every crazy question you could think of, and researched different treatments. We eventually determined we would walk this path together, and adjust life as needed. It all sounded acceptable to me, and 4 years later we are still walking this path together.
I want to talk about managing relationships. Everything has changed physically, emotionally and mentally. If I was upset, I could go for a drive, a run, go outside for a cigarette and beer or just walk alone. Now I just sit in my chair unable to do any of those things, heck I can’t even yell. If I wanted to show love, a kiss, hug, or well you know, I would do it. Now I just use my eyes and smile, which is fine but it’s obviously not the same. So the way I manage my relationships with other humans had to change drastically from my life pre ALS.
I’m not going to lie, I have turned into an asshole and now I do my best to not be one. I communicate only through my eye gaze computer, which is much slower than talking. Somewhere between 15 - 25 words per minute. I can’t participate in group conversations, even a one on one conversation is tough. And sometimes people don’t even let me finish my sentences. All of these challenges are so taxing on any person in a similar situation, and there is really no way to prepare yourself. You just learn and adapt as you go.
What I don’t want to happen is for myself to slip into isolation, where I can’t experience these emotions. So I have to learn different ways to express myself, and it’s quite a challenge. I truly feel that love is the greatest gift that God gave us. Love for your family, your friends, your significant other and ultimately yourself. Without love, I don’t see life being purposeful.
I guess my main thought here is, I want to be a better person. I will work on being a better human daily. I will become a better human. If I have caused you harm or agony, I apologize. I love you all.