All through the physical therapy, I was so thrilled to be standing, then out of a wheelchair and walking again, it was unbelievable. Throughout outpatient therapy I would get on a treadmill and walk as quickly as I could for 10, and then 15 minutes. But I always had to have a belt on and a therapist standing beside me holding on, or I might fall down. Everything I was doing involved a gait belt and careful supervision. I had two remaining vestibular problems (I didn’t know what those were at first…let’s just say they have to do with the inner ear and they can mess you up pretty badly!) Daily exercises keeps one mostly at bay, but there is some permanent loss with the other one.The vestibular damage causes dizziness and vertigo, sometimes worse. Very like being in a mild, constant personal earthquake, with occasional violent upsets that send my stomach into a frenzy and make me feel as if I am falling. It can be sort of unsettling.
Couple that with the fact that most of my brain damage was to the back of my brain, the cerebellum, ,which controls coordination and balance, and I’m pretty much a mess when I walk. I can walk short distances by myself, but I’m very conscious that I have my feet wide apart so that I don’t fall down, and I walk with an oddly hurried gait once I get started. Very much of an out-of-control toddler sort of an affair.
I’ve been trying to think how to describe how this feels inside my head to people for about a year. Yesterday I got the most wonderful insight. See if you can picture this: It’s almost as if my entire head and torso were a peach, and my legs were toothpicks stuck inside the peach. My brain, which is supposed to be running this entire shebang, is like an offsite remote control run by another person. It doesn’t respond instantly, and every time the person running it has to get comfortable again with exactly how the controller works.
For instance–every morning I slide out of bed slowly. I get my weight situated evenly on both my legs, test if they’ll hold, and then stabilize myself against the side of the bed for a couple of seconds. This is when I start “turning on my brain,” Once it’s firing on all cylinders, I tell my legs to “walk”, and after a second or two delay, they usually obey me. All this breaks down under extremely frigid temperatures. When my legs get too cold, they just refuse to obey me. My brain says “walk”, but they won’t. My brain start raising its internal voice, but they won’t listen, I sometimes get so desperate that I start yelling at them out loud, but they still won’t move. I have to physically pick them up and lift them in the car, or wherever we are to get them out of the way. It’s like they don’t even belong to me.
Back to the fascinating peach on toothpicks picture: this is what walking feels like all the time. Very out of balance, very out of control. Always like I’m about to fall down. I have to constantly make myself lower my arms because they have a tendency to always be out in front of me, out of my constant fear of falling. I need to remind myself all the time to relax, because I am usually somewhat stiff and knotted from fear; I can’t see spatially very well, which causes confusion about exactly where curbs, or stairs, or things in front of me are located; quite an adventure!!!
Added to that , the delay in brain communication adds a delicious dollop to the entire thing. For instance, I really haven’t yet figured out the left-right thing which adds some extra confusion to me trying to direct my movements. The order of operations goes something like this:
Me, feeling thirsty, decide I want a drink. I make a decision to go into the kitchen. The operation begins.
- Stand up. Get my legs straight, get my weight balanced, commence forward locomotion. Try to do a somewhat graceful stagger into the kitchen. Make it successfully. Stop by sink, holding onto the counter.
2. Get glass from counter. Tell self to turn head and body towards refrigerator. Start walking. Stop when I reach refrigerator drink dispenser. Push glass toward first ice dispenser, then water dispenser. I squint to see more clearly if the water is actually going into the glass, and then how full it is getting. I’m much improved at this.
3. Full enough. Tell self to lift glass to lips. Concentrate on swallowing. This still requires a lot of work. I need to focus or or disaster will quickly follow. Success! Tell self to walk back to counter and set water glass down, and then you can go back to the couch. Sometimes I have to hold onto the counter a few seconds before I start walking again. If there’s anything in my path, this is a big issue. I can’t easily bend over because of bouts of vertigo. Back to the couch, my thirst satisfied. I turn around, put my rear end toward the couch seat, and let go a little. Always relieved when the seat catches me. I’m terrified in case a chair isn’t behind me, or it breaks, or something dire happens. I don’t know what I would do. Fortunately it never has. All this exactly like someone running the entire operation via a remote control. You have to figure out EVERY SINGLE OPERATION separately! That’s exactly how it is with me now. I don’t do anything automatically. At least now I can just go and get a drink and sort of play it by ear on the way…a few months ago I still had to plan the whole operation before I even started. Something as simple as getting a drink. Unbelievable. I still can’t believe it myself. I feel as if I’m being overdramatic just writing this!!
I was always quick and impulsive. Sometimes I would act first, think later. Too often this got me in trouble. It is impossible now. Nothing is at all quick, thus I cannot be impulsive. I have impulses all the time now, but I simply can’t act on them. So I wait. I wait. And I wait some more. I know everyone says they aren’t good at waiting, but I think everyone who knows me would agree that I was always much worse than most. God is definitely using this to teach me a very valuable lesson…and I still mostly hate it. But I love the image I came up with yesterday, of a peach perched on two toothpicks, being run by a remote control. I think that’s a perfect picture. And I know God is perfect, darn it all. And I really am learning, God. I guess. But I’m still not happy about it.