What I miss before ALS:
I miss my independence. I miss having the ability to jump in the car and go. I could just go visit someone, get something to eat, hit up the mall. Even if I didn’t want to go anywhere, which wasn't uncommon, the fact remained that I could. It was an option and in my control.
I miss talking on the phone. Now my family may try calling bullshit on this because I’ve never liked phone conversations. Only out of necessity. I usually kept my ringer off. I’m a text person, and thankfully you can get most things accomplished by text or email. This is far from the worse thing I miss, but I realize now just how often I did use the phone. Things like calling to cancel or make an appointment. They just don’t understand me. Now my husband makes calls for me. I appreciate it so much, but it makes me feel useless, helpless… searching for the right descriptive word. It can also be just plain embarrassing. I mean who has their husband calling to schedule their annual pap-smear appointment. That’s not particular to me, just a random example, trying to get to the point, the feeling of it. Some of my family does OK on the phone with me but I’m hearing, what, more and more often.
I miss having a conversation.This may seem redundant but it’s different from the phone. Usually one on one, and in a quite place is OK, I can be understood. Even then it doesn’t take long before I have to use more effort speaking, then I get short of breath and it’s harder to get my words out. I never was one that felt the need to dominate a conversation, but I do like to contribute at will. A lot of times I feel like my voice is only clear and loud enough to send a subliminal message to others. I can’t tell you how many times I’ve said something, nobody acknowledges, then someone says exactly what I just said. I want to scream, excuse me, I just fucking said that. I will say, even though hearing a lot of Whats can get frustrating, I’d rather know someone didn’t understand than to just go along as if they did. I can usually tell and it feels demeaning. I also admit I would probably do the same in their position.
There is no handbook on how to act or react when an able adult starts losing abilities. I’m not mad at the people. I’m angry as hell at ALS.
All of what I miss before ALS that I’ve mentioned does have to do with independence. That’s what ALS does. It takes everything from you. People I’ve met very recently I feel don’t get to see the real me. I want to say I am still that person, but in some ways I’m not. Something has changed a little in me. I am still in here though. I have a husband that knows me very well. This is hard on him too, I also know him vey well. There’s no hiding our feelings from each other much, we know.
I have family that is there for us and when we’re ready, they will step up more. I’ve kind of held the people I love the most at arms distance. I’m not ready to say, “I need your help.” I can still do a lot of things on my own. I’m keeping watch on Tony too because when it’s too much for him, it will be time to ask. Don’t get me wrong, family has already stepped in for us in their individual ways. We’re so thankful to have them.
I’m sure a lot of people with ALS understand this perfectly. Others, maybe not so much if they’re the type who have no problem excepting help. I’m the stubborn person singing, I’m not ask anybody for anything if I can’t get it on my own. That is changing, and without my consent.
I hope someone related to this blog post, or it helped in understanding what ALS is doing to a loved one. I still have a long way to go and a lot of learning to do myself.
Until next time, take care,