Whenever my Dad had a hangover, and he had plenty of them, he used to say "My body is rejecting me." Now I get to say that for real. ALS is an auto-immune disease. My body is attacking my motor neurons.
We don't know what causes it or what triggers it, although there are lots of suspects. Scientists are looking at correlation between trauma and ALS, statin cholesterol drugs and ALS, chemical exposure and ALS, and so on. No matter the cause, my own body is doing this to me.
The unfortunate reality is that I have ALS, regardless of source. My body is rejecting me. In return I am going to reject my body. What do I mean by that? I am going to fight to keep my spirits and approach to life. I am going to live as much in my mind as I possibly can. I am going to daily remind myself that I am more than my physical self.
Sometimes that is easy, such as when I do physical things that are fun; I just do them differently. Other times I am forced to confront my physical challenges. Yesterday my ALS Case Manager brought my interim wheelchair. I didn't like it. She brought me a walker; I didn't like it. She brought me a shower chair; I didn't like it.
I kept them, but I rejected them.
Dear Richard,
ReplyDeleteYou don't know me but I am a friend of your mom's. My name is Denise and she and I belong to a quilting group where we share our lives with one another. She sent me the link to this blog and I want you to know that I have enjoyed reading it. Don't get me wrong; I certainly don't enjoy what you are going through but I wanted to let you know that you are an excellent writer. I also want to let you know that there are many praying for you. Please keep writing.
Thank you, Denise. Prayers are good.
ReplyDeleteHi Richard,
ReplyDeleteI too am a friend of your mom's (same group). You should know you have the whole group praying for you. I love your attitude; never give up! Your mind has a lot to do with your health. Many prayers will be going up from my household!
Thank you, Diana
ReplyDeleteAt the end of the day, you can either focus on what's tearing your apart, or what's holding you together.
ReplyDeleteThe things that hold me together, the people and the passion, is more important and more powerful than the thing that is tearing me apart. You are so right, Bobbi. What is important is what I focus on, not the other way round.
ReplyDeleteI have just begun reading your blog- I followed the link from Sarah's website. I really appreciate your honesty and even though I don't have ALS I find that I can relate to you on a personal level- I appreciate what you have to say and how you say it. I won't be obnoxious and pretend I know how you feel...Just know that you have a gift in the the way you write that makes the reader get a handle for how it *feels* to be you, not simply a description of you life with ALS, I stayed up until 4 AM readng your blog, of that tells you anything (besides the fact that I am tired). I don't normally write comments on blogs, but yours definitely warranted a response..I keep you in my thoughts and prayers. <3
DeleteThank you for this, and for reading. That happens to me too, where I start reading something and suddenly it's 4:00 AM.
Delete