I missed my self imposed deadline by a few days. I ran into delays because of visitors, which is positive, and device problems, which is very negative, because it meant that I couldn’t communicate with my family. I hope to be back to publishing every month starting in July. I bought myself two months, but June is a busy month. :-/
Many of you have told me that you find my blog posts meaningful and inspiring. It is very gratifying. I am lucky that every month many of you tell me how my writing affects you.
It’s true that the vast majority of the time, I’m grateful to be alive despite my condition. However, there are times when I feel immensely sorry for myself.
I envy everyone who can scratch their own itches. I envy everyone who can jump up and go to the bathroom alone. Basically, I envy every able bodied person.
Occasionally I have a particular resentment for the people living with ALS who are slow progressors. I started going downhill within 9 months after diagnosis. That’s when my dominant arm lost all strength. Then at 11 months, I noticed my speech was sounding garbled. I had to give up driving after I fell and broke my elbow.
I fell many, many times, including one time when I was crossing the street in downtown Seattle. I had to use a walker 18 months after diagnosis. Then I needed a wheelchair when going long distances. Oh, and my left arm had lost its strength by then. I had to resign from teaching, my calling. So, at times, I have a special resentment for people living with ALS for many years who can speak and use their hands, and are maybe in a wheelchair or maybe not.
In February of this year, I thought I was going to die soon, because I read about two women with ALS, who had died at age 56. In April I was going to turn 56. My therapist tried to convince me that that didn’t mean I was going to die, but I became very anxious. I got very anxious whenever I had to disconnect my external ventilator, for things that I previously had no problem doing, like going to the bathroom. I would hyperventilate and experience some panic. The only thing that would calm me down was closing my eyes, but most of the time my low oxygen in these circumstances made it impossible for me to close my eyes. So maddening!
Barry is awesome, and figured out how to take the ventilator with us when we did those things. He also called my neurologist to describe what was happening and to request an increase in my anti anxiety medicine, which was my idea. My doctor said we were doing all the right things, and he prescribed an increase in my anti-anxiety and a sedative. The sedative is magical. I take nowhere near the maximum dose for a day. Just half a pill stops my hyperventilating and I have no problem closing my eyes!
Recently, I found out about a group of young women who are living with ALS. They have young children or don’t get to have children, because of this terrible disease. That helps put things in perspective for me.
I’m lucky that I was able to have kids, and I was able to hold them while they were infants and toddlers. They are both young adults now. I was lucky to have so much time with my kids before I succumbed to the worst symptoms of ALS.
So I will continue to write and I’m sure much of it will be “positive” and full of gratitude for each day. However, it also feels good to keep it real now and then.