as small as a world and as large as alone, madeofpatterns: youneedacat: ...

1:32am July 23, 2014

youneedacat:

chronicwithcats:

It’s so frustrating when people just don’t get it. I’ll tell my friend my legs aren’t too good these days and she’ll say “is it because you lay around all day?” “Would it help if you exercised?” And it hurts. Because little do they know how sick this disease really makes you. I know it only gets worse from here before I get better, and I just can’t stop worrying about what my friends think.

When I started having trouble with adrenal insufficiency + myasthenia gravis(?), my brother asked me if I thought my weight had anything to do with it. I was at the point where if I moved a muscle, it would give out and collapse. You don’t get that at 180 pounds, which is where it was when I started, and you don’t get that at 245 pounds, which is the weight I gained because I couldn’t get out of bed. But my brother has always been skinny so it was easy for him to pass that kind of judgement, he had no idea that just being somewhat fat doesn’t cause that level of debilitation.

People also didn’t get that the less I exercised, the better I functioned. Which is exactly how myasthenia gravis(?) works and is exactly how severe adrenal insufficiency works. But everyone told me if I just exercised enough I’d get better. If I exercised at all, I collapsed, threw up, and had other completely intolerable symptoms that literally made exercise impossible. And by “exercised at all”, I mean that I used to put my friend’s compression boots on her legs and I had to stop doing that because even that small amount of exercise required to tighten her compression garments, caused the collapsing and vomiting thing. I couldn’t go across a room in a wheelchair without falling every time I transferred, and people were talking about exercise.

Exercise intolerance is a thing. It’s a real thing. And it was dangerous, as in life threatening for me to exercise at that point. I’m only able to exercise now because I’m on a powerful steroid medication that replaces the hormones my body doesn’t make anymore, and also on Mestinon which helps with the probable-myasthenia. Without it, I’d still be completely exercise-intolerant, in bed all the time, and using a powerchair. Most people don’t have something this easily treated, or if they do, then like me, they wait years to get a proper diagnosis.

I’m continually amazed that you survived that.

And painfully aware of how many other people the system has managed to kill.

I’m amazed I survived that too.

My body has a very intense drive to keep on existing. And even when I was hanging by a thread, I remember it holding on as long as it could. I remember death entering the room and just sitting there, waiting for me, inviting me to rest and enter its arms. And I remember not being able to resist, getting closer and closer. And then I remember getting just enough energy to start resisting again, and then my body would hold on by its bloodied fingernails, without my even consenting exactly, my body just has such an intense will to live that I lived through things that should have killed me.

Because there is a level of life, where you’re close to death, and giving in would kill you, and hanging on gets you longer life. It’s not as broad a level as most people make it out to be. Most people assume that death can be clobbered over the head with a baseball bat and that anyone who dies must not have wanted to live that much. That’s not true. There’s an event horizon and beyond that you are going to die no matter what. But there’s a space outside that event horizon where you do have somewhat of a choice, and I always, no matter how battered and exhausted, chose life.

There may well be a day when I choose death, but that will be because it’s my time. It wasn’t my time. I still could’ve died before my time, and the lack of medical care I got would’ve made that really easy even with me holding onto life by a thread like that. But I sure as hell made my best effort to survive, and I learned how tough the human body is by how weak I could be and still hang onto life.

Watching my father is different, because it’s going to be his time sooner or later, the cancer will take him, and he’s going to cross that event horizon. And I’ve done everything I can to prepare him. Because that requires an entirely different kind of courage and willpower. You have to hang onto the deepest love, immerse yourself in that love, and go wherever that love tells you to go, even if love tells you to let go and die. Which is just as hard a thing to do as to hang on by a thread and keep living. But just as important. I just hope he gets the chance to die outdoors in the forest he loves so much.

But yes. In many ways, I shouldn’t be here. My doctor says I belonged in the ICU several times over, yet managed to survive without it several times over. My mother is tough, too. She did end up in the ICU during a myasthenia crisis. They had no pulmonologists on hand, and nobody with any knowledge of neuromuscular conditions, so they didn’t give her breathing support until she finally coded. But during the code, right before they were about to start chest compressions, her eyes snapped open and she demanded a bipap, which she was given. And she was very weak, but she held on, somehow.

I think people in my family are just tough when it comes to things like that. We get conditions that should kill us and manage to live a really long time with them anyway. I think we have a really strong will to live, it doesn’t just manifest with illness, it manifests in other situations as well. And it’s certainly helped me. I probably “shouldn’t” be alive, in the sense that I’ve lived through situations that would have killed a lot of people, but somehow I’m here, and some of that is because I could feel my body hanging on in situations where it had every right to let go, but didn’t.

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