I have a friend who recently lost a friend to ALS. She was on a ventilator, and even though she passed away, the vent didn't know it. It kept breathing, inflating and deflating her chest even though she was gone.
I recently learned that my dad is afraid in the mornings to walk in my room and find me dead, but still breathing.
This pal of mine, this constant companion, this ventilator usually doesn't bother me anymore. I honestly don't remember what it's like to breathe normally, it's been so long. I have not taken a breath for myself in over three years. Is that not crazy? I feel crazy. Maybe that's the problem, and not the ventilator.
People always imagine that when I'm disconnected from the ventilator, I hold my breath until someone puts it back on. Not so. My diaphragm no longer has any control over my breathing, so I'm incapable of holding my breath. So when I'm disconnected, the closest I can approximate it is for someone to blow out all of the air in their lungs, and then blow some more. And then don't breathe in. Feel how your chest aches? That's me.
I don't usually think too deeply about the ventilator, but a friend asked me what it was like to use one, to have something do the breathing for you. And so I thought about it. It's nothing new to me; it doesn't surprise me, and it doesn't scare me… At least not anymore. It's become as natural as, well, breathing. Maybe just a little noisier.
It used to scare me more than I can say. When I was at the rehab hospital, TIRR, I couldn't sleep at night, because I was sure I wasn't breathing properly. I didn't have enough awareness then to know if my chest was inflating at all. It sure as hell felt like it wasn't. So I couldn't close my eyes, because I had to keep watching my chest, to make sure the breath came in and out. I was up for days, and we finally thought to put an stuffed animal on my chest, with its nose touching my cheek. I could feel it go up and down, so I could close my eyes. But if it moved, I was awake and panicking again.
I'm far past that point. When I'm disconnected unintentionally, I use my horse riding skills and cluck for all I'm worth so that somebody knows. It's why am never alone, because I occasionally spasm and pull off my own tubes. I'm sure Freud could read something into that! But while it used to terrify me, it doesn't anymore. And honestly, I don't know why it doesn't.
I also don't really know why am telling you this. Maybe it's because part of me knows that people want to ask, but don't. So many things about my life people are afraid to ask. I'm not afraid to answer, so please never be afraid to ask.
I also don't mean for this to be a "poor pitiful Alexa" blog. I'm just trying to get across the facts as see them, without emotion. Maybe for me, this blog is therapeutic. Why I don't just write in a journal, I will never know!
So that's a small portion of my life in a snapshot for you. If you've ever wanted to ask, now I've answered, whether you spoke the question aloud or not. No question is off limits for me. I'm grateful for children, because they have no fear of asking. They stare, but it's an honest stare, if that makes any sense. When I was at the rehab hospital, we visited the zoo. A precocious child that reminded me much of myself, marched up to me and asked why I was sitting down. I told her about my wheelchair, and how I was hurt, and then I asked her, "Do you always wear your seatbelt?" She nodded solemnly, and I said, "Good. Make sure you always do. I didn't, and that is why I got hurt. Do you understand?" She nodded again, and then we talked about the giraffe and she went on her way.
I'm not sure if I've enclosed that detail in my writings. That I wasn't wearing a seatbelt. But if you've ever wanted to ask, now you know. It just is what it is, you know? C'est la vie! You either step up and deal with it (metaphorically of course!), or you drown. And I don't ever want to drown.
That's why I have this ventilator. It keeps me going. It enables me to communicate, to sing, to laugh, even if it was different than it was before. It keeps me from drowning, in the real world, and in my head. It's a constant reminder that I AM ALIVE. I don't have to remember to breathe; I just always do. I breathe, therefore I am! And in spite of my strange breathing deficiency, I can shout to the heavens with the best of them that I am alive! I will not drown! I will be honest with myself and others! I will love unconditionally! I will believe! And so much more.
Thank you for slogging through this with me. I appreciate it. I hope you always wear your seat belts :-) And so we go!
