you know what bugs me?

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I’m enrolled in an continuing educational community for retired adults. Today was the first class for this term. I’m in my power wheelchair, hanging out at the break.

A woman comes up to me.

Woman: Aren’t you Dr. Karen?

Me (with my raspy bulbar-esque voice): Used to be

Woman: And you play the bassoon.

Me: I used to do that too

Woman eyes the wheelchair and looks somewhat puzzled. “Did you have an accident?”

Me: Uh, not exactly.

CALS (to the rescue): Karen has ALS.

Woman (appearing slightly uncomfortable): well, it’s good to see you.

End of conversation.

I realized when she started talking to me that there might be some awkwardness, both mine and hers. I realized I’m afraid to make people feel uncomfortable on short notice. Does this bug me? Well, kind of. I think it is bothering me more as I become more obviously disabled. Suddenly I have to explain myself, and I find myself dreading the response (though this woman’s wasn’t too bad). I used to view this as a potential teaching opportunity, or an opportunity to show people that disabled folks can and do take classes and be out and about in their community. But now I find myself wanting to slip quietly under the radar without making a scene.
 
It's really tough Karen, this disease is the biggest SUCK there is.

So great you are doing this class, I hope you stick with it and find it gets easier - that first day has to be the worst. 💜 🥰
 
Karen, these situations are common in some manner to all of us. Thanks for sharing your your feelings. I believe if we don't find a comfortable place or audience for us to open up, this disease wins more battles in our war against it.

So that takes me a new thought...is this a war? People always say "keep up the fight" or other comments suggesting the analogy of combat, fighting, and battles. But I don't know if this is truly an accurate way to describe this disease.
  • We all know the inevitable..
  • Everyday brings new challenges from all fronts
  • Nothing helps us make progress
So I'm not stating this to be negative and pessimistic. I guess I'm looking for others' perspectives. How do you feel? How do you respond to comments such as these referencing a battle against this disease.
 
A CALS perspective: I could never see it as a fight. It was much more a letting go over and over again on many, many levels near and dear to my heart. Lots of loss and often there was pain too, love too and silence because often I felt no words can describe this.
 
I don’t see it as a fight either. It’s more of an endurance contest for me, and trying to figure out how I can make the best of it. If others want to see it as a fight, I’m ok with that, but that metaphor doesn’t work for me.

I started a thread a while back called “what’s your fight?” What’s your fight?
 
could never see it as a fight. It was much more a letting go over and over again on many, many levels near and dear to my heart.

I think that puts it into words, Regina. It is letting go of so many things-career, hobbies, talents, enjoyments, homes, animals, independence, pride, and basics such as speech and eating.
 
First it steals your hobbies and recreational pursuits and your job. Then it steals your independence and your dignity. And finally it steals your life. OMG that sounds terrible! It is terrible, but when I stay in the moment and focus on what I can still do, then it doesn’t seem so bad. So I guess I go back and forth between the big picture (bad) and the moment to moment (not so bad). I wake up every morning and still can’t believe this is happening. It seems like a bad dream I can’t shake. People that don’t live this have no idea what we’re talking about.
 
Cathy and Karen, brings tears to me - over and over again. And at the same time a wonderful gift to talk so honestly. I wish we had an emoji for hugs. Sending you many and love bundles too.
 
I had to call AT&T yesterday about slow internet. She was asking me to unplug and modem which involves getting down on my knees and going behind the TV. I explained to her my issue of not being able to do that but she kept insisting that it was easy. I tried to be patient but finally I told her I had ALS. Silence. Then I asked her if she knew what ALS was. NO. I told her it was a terminal illness. She said, "oh, I'm sorry." Then she asked me to unplug the modem. I won't finish the rest of the conversation but suffice to say the next level fixed my issue.

It wore me out.
 
My reflections today regarding the idea of letting go have brought me to the epiphany that without the struggles and difficulties, I wouldn't be so willing to accept the changes to my life.

I had to quit bell choir because I struggled and lacked the strength to hold and ring the bells properly. Acceptance. I had to retire from my career because I struggled with the endurance and physical requirements to complete the job and make it through the day. Acceptance. We sold our home because I couldn't get up the steps into and within the house without assistance. I was a prisoner in my own home. Acceptance. I stopped driving because of the struggle to operate it safely and maintain my own safety getting in and out independently. Acceptance. And so it goes.

Letting go requires acceptance.
Acceptance grows with adversity.
 
the wisdom shared in this page of replies brought me to tears because of the beauty of the honesty that no one else gets.
I never thought it was a war - I just wanted to live each day we had and find all the acceptance possible.
This is why you are my family here 🤗 and we do have a hug emoji 💜
 
I don't see it as a battle either. I mean, what possible good could it do for your psyche to be in a fight that you can't choose and know you'll lose at some point? I try to let people know that I'm living with ALS, not battling it. Acceptance.
 
I really like Karen's description that it's more of an endurance struggle than a fight. I had clinic yesterday and they were commenting how my FVC had come slightly up and on the way home I was reflecting how I really give it my all in the tests at clinic these days. In the beginning it wasn't that I had a poor effort, but lately it's like some primal survival instinct kicking in and I try really hard because I need to feel like I'm hanging in there.
 
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