Inspiring. Inspire. Inspiration.
I have been hearing those words a lot since I have been diagnosed. Even before that. First, let me say "thank you". Thank you for using these words to describe me. However, I am finding it difficult to understand. That is not me fishing for compliments, and I thought about not even addressing this in my blog because I don't ever want people to think I am not grateful for the compliment. I just don't see it. Why is this particular situation inspiring?
This is how dictionary.com defines inspire:
Living with ALS is not my choice. That is pretty obvious. What is it about being afflicted with an awful disease that people find so inspiring?! I guess I could see if I was bravely going to work every day, or even getting dressed before eleven o'clock, or even doing one of the many chores that Adam now has to do, I could see that maybe -maybe - that would be inspiring. But I am not. I am finding it very difficult to live in any way that merely resembles what my old life used to look or feel like. I am pretty sure that I could physically do some of those things, but my mind right now is telling me "no you can't".
Last night I opened the big envelope. The envelope that was sent to me by the ALS Association. It took me about a week to open it. It sat on my kitchen counter looking at me. I almost felt like the longer it sat there unopened, the longer I would have to deny my diagnosis. For some reason, last night I was ready. It was filled with all sorts of information - everything from services that the Association can offer me, to support group schedules, to caregiver support, to booklets on medical definitions and research, to booklets about how any feeling you have is normal. That last booklet was comforting because all the feelings they described, I am feeling - anxiety, fatigue, denial, walking around like this is happening to someone else - all of it. But none of the information talked about how you will inspire others. And I was searching. I really was.
The booklet also touched upon how every person afflicted with ALS is different. How some will take a long time to accept their diagnosis, while others might be more resilient and jump right into being an advocate and fundraiser. How some people might not want to see their friends for some time after being diagnosed, while others might want to be immersed with love and friendship. How some people might be afraid to go to work, or their anxiety will take over their lives, while others will be able to continue on. All of it is okay and normal. Just because you feel one way or another, doesn't make you braver than another. It just makes you different. That was reassuring to me. It sort of gave me permission to say, "Look, you are not crazy. Your feelings are warranted and felt by others."
What does all of this have to do with inspiration? I think until I can figure out why people are using that word to describe me - until I can believe it - I am just going to have to go on faith. I will believe you that somehow you find this inspiring, find this struggle inspiring. Maybe someday I will feel it too.