I realized the other day that I don’t actually discuss my hemiparesis on my blog. That is strange because that was the whole point of this blog. I reached out to my support group a few days or weeks ago and once again I was reminded why I don’t do that. I feel so alone with this deficit. So let me explain what exactly hemiparesis is.
Hemiparesis is a weakness to one side of the body. Obviously, it’s a neurological deficit of sorts. I’m not going to get technical because I only know my version of it. Mine was caused by a stroke. Something called an AVM had been feeding off my brain since birth; AVMs are most likely congenital – no one really knows. When I was 27, the AVM decided to rupture and it caused brain damage, leaving me with a left-sided deficit my doctors refer to as hemiparesis. It sucks. I am blessed in some ways. The most obvious being that fact that I survived the bleed and then the fact that I can walk to a certain degree on my own. I need assistance so I use a cane, hold my husband’s hand, hug a wall or counter or, if I am out of options and struck with a sudden lack in confidence or strength, I will palm my near 6 year-olds head and use him as a walking device. He doesn’t mind; he’s “helping mommy.”
Hemiparesis is not the only form of deficit I have. My leg is mostly hemiparetic but my arm is a totally different story. My arm has been identified separately as ULE (upper left extremity) hemiplegic. The difference is that, unlike my leg, my range of motion is severely limited where it is not seemingly completely impaired. I can lift my arm high enough to shave my own armpit. I know to those 100% that might sound like a thing so trivial it should be pointless to mention. But things like shaving your own armpits is a privilege I had taken for granted in my previous life. It was another item of privately controlled personal hygiene and maintenance removed from my list of things I controlled and was placed into the hands of my husband, the poor bastard. It took over a year for me to finally gain the strength to lift my left arm high and long enough to shave it on my own. You may be surprised by just how heavy an arm you can’t control actually is. Bone is heavy and dead muscles surrounding it, heavier. Shaving my own furry pits is a function I take much pride in. It was a small part of independence and privacy and yes, even womanhood, I had gained back with a winners grin. From below the elbow…it’s nothing. There’s nothing, just nothing. There is no movement I can control. Ok, well, that is an exaggeration but only because if I focus real hard I can make a fist but that’s it. I have some version of feeling but I don’t know what it is. My sensations are off and unreadable. Hot is cold, cold is burning. Pain is nothing in weight but a pin prick will bring me to my knees.
There is a condition known as Alien Hand Syndrome. There are a few YouTube videos out there about this. I had always been a huge skeptic and to this day still think this crap is some sort of strange hoax BUT I cannot deny the similarities between symptoms of AHS and my left arm. My arm reacts more to the environment around me and my emotions than it does to my commands. It’s very frustrating. I could list a thousand things that my arm has done to me, against my will, or by rebelling against my orders. It’s just frustrating. My hand, it reaches out to people I don’t want to touch. My fingers like to grab onto things like shelves and door frames or the shirt sleeve of someone walking by me. It’s very embarrassing. I have no idea if other hemi’s go through this because NO ONE IN MY SUPPORT GROUP seems to have any of these problems! I hate that place. I don’t think I’ll be logging back in there any time soon. No one even commented on my questions asking if certain things were normal like the arm thing. I know there are some hh\emis in that network but they never respond to my discussions so either I am crazy or I am alone in my experiences…possibly it is a prefect mix of both. The only response I got to my discussion was to open a sub group. I don’t want a sub group. What if I open one and it’s more quiet than this blog? Even though I’m not looking for an audience here I can’t help but note the rejection. I’m not a writer, I’m not a blogging hobbiest and I have nothing to offer the blogging community but my crap life experiences.
I have been fighting depression lately; maybe that is what is wrong? Such a downer. It’s been one thing after the other. Just life, like always…it totally blows.