Note: I am writing this as a "filler" diary to be available when another Kosability author is unavailable to do a scheduled piece or when there is no one scheduled for a given week. This means that by the time you see this, my personal circumstance may have changed. --Julie
In a prior KosAbility piece I wrote about
Dysphagia, my inability to swallow and eat by mouth. Today's is about my Dysarthia, which is the inability to properly form words.
These two events are distinctly connected, as they both involve me not having proper muscle control of my tongue, rooting from Myasthenia Gravis. I've talked about Myasthenia Gravis before, so I shall give a quick summary: my immune system is intermittently attacking certain muscle neurons, which primarily include occular (eyes and eyelids) and bulbar (throat and mouth). They can (and in my case have) affected my neck, arms and legs, manifesting as extreme weakness, even though the muscles and the brain are fine. It's the communication between the two that are flummoxed.
After the fold, I'll tell you about what it means to be unable to speak.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I want to start by saying I am an extremely verbal person. I speak in complete sentences. I use complex words. I like language and I enjoy talking. I am clever and witty and love throwing out comments off the top of my head.
As of late, that's not been an option for me. Even forming small sentences has been difficult. At the time of writing this, I can actually speak in short sentences, but it's extremely difficult and I'm not consistently understood.
So a lot of my conversation lately involves writing things down, which is extremely difficult during the worse flare-ups when my hands don't work as well either. So sometimes it's just pointing and gesturing and nodding or shaking my head while people try to figure me out. I'm not driving at the moment, but I realized that when I do start driving again, I may have to get a doctor's note about my voice so that if I get pulled over, the police don't assume I'm so drunk I can't form words.
I end up rolling my eyes a lot because, in my head, what I'm trying to say is so obvious. When I was in the hospital a couple weeks ago, one of the nurses made a mistake with the IV. I noticed liquid flowing out of it and I started trying to explain-- I pointed to my arm and tried to say "IV is leaking!" but all anyone understood was "IV" so then a series of questions followed. For me, it was so obvious because my blood was starting to flow back up the tube. Eventually I found a piece of paper and wrote "IV IS LEAKING!" and then underlined "leaking" three times. It just needed to be tightened, but it was so simple and so difficult to communicate.
I expect this to end soon, but it's not there yet. And in the meantime, it's just ridiculous having to write everything down. I experimented briefly with text-to-speech on my iPad, but that just seemed to confuse people further, so a lot of the time I write on my iPad, which is faster than paper, but all of it lacks what I think of as the joy of conversation. Typing is fine. Conversing here online works. But I truly miss being able to have fluid conversation with ebb and flow.
I end up dropping a lot of things I want to say because it's just too damned much work. Some of the time, what I have to say will be completely misinterpreted but I won't bother trying to correct because it's just not something important enough to spend my energy on. And that feels kind of like a lie to me but I just have to conserve my strength and can't fix every misunderstanding that pops up.
In the meantime, I have noticed that there is a significant increase in the ability of medical professionals to simply dismiss me. The dysarthria does not mean there is anything wrong with my mind, but they often treat me as though there is. Then there are the ones who treat me as though I am hard of hearing, talking in an extremely elevated voice every time they speak to me.
I will note again how awesome my sweetie is, because she will often be there to speak for me. She has to, for the time being, take my phone calls because there is no point of me trying to talk on the phone (which is the one benefit to me because I kind of hate talking on the phone).
So right now... right as I write this, I have no voice, not in the true sense. I can live with that, for a time, but I really can't thrive on it.
And frankly, I'm just sick of it.