After a traumatic life event, especially one that completely changes your life, time doesn’t stop. You can lose your job, lose your family, and feel completely lost on how to adapt and move on. That’s the part that’s extremely difficult. I even had to adjust how I ate food. If I was having soup, I would fill the spoon up and bring it to my mouth. But if my mouth was too far away from the bowl, my hand would start shaking so bad that the soup would just fall out. That was a little frustrating, especially when it would get all over my shirt.
It was problems like these that prevented me from going out in public for many years. I walked like a 6’2 ironing board because I couldn’t turn my head. Eating was difficult, brushing my teeth, and getting dressed. Nothing is as frustrating as trying to put your underwear on and try to put your foot through the hole, and completely miss or get stuck and fall down. That still happens to this day.
The adaptation I made for eating was to put my mouth closer to the plate or bowl. That creates a whole new problem of looking like you’re shoveling food down your throat. But I would rather deal with that than deal with spilling my food all over the place.
I think the most difficult part was learning how to walk again. I knew how to walk, but I didn’t know how to walk without losing my balance and falling down. Which happened a lot. I am missing part of my cerebellum, and that controls balance. For many years, it looked like I was drunk because I have a tendency to veer off and not walk in a straight line. I always hoped I didn’t get pulled over and have to do the field sobriety test. I would definitely fail. I should mention that I don’t drink alcohol anymore. It makes me want to throw up, which is bad. Alcohol and my brain don’t mix. Sorry for the tangent.
I walked using a cane for a long time to help with the veering off course. Walking up and down stairs was/is a challenge. If there is no hand rail, I’m in trouble. Falling down stairs is just a little embarrassing and it kind of hurts. Eventually I stopped using the cane. This might sound strange, but most people walk with their feet. They feel their way by touch and peripheral vision. My adjustment was to always look at the ground. I would occasionally look up of course. Running into people is a problem when you can’t look up.
The fainting spells were hard to get used to. When I do certain things or I move in a certain way, my head spins. Crouched over looking under a car, the head spinning effectively makes me go blind. Standing up to fast starts the spinning. Moving my head side to side to much makes me nauseous. The last time I fainted was a few years ago I think. If I’m laying flat on my back, I have to be careful how I sit up. It’s pretty funny to watch because I look like a beached whale flopping onto my side to get ready to stand up. It’s a process.
Although sometimes there is noting I can do about the dizziness, no matter what I do. Doing physical work is fine for a little while. I know my limits and when to stop. The dizziness and nausea get really bad and I have to go lye down for a while. Being outside in hot or warm weather makes me sweat a lot, even if I’m just sitting there doing nothing.
Everything is an adjustment. You don’t just get up and walk out of life changing events. For my particular situation, I adjust every single day. My head spinning, nausea, dizziness, pain, can vary from day to day, hour to hour, or even minute to minute. For people that are lucky enough to have AVM’s found before hemorrhaging, it can be very scary to know that you have to fix the problem and are never sure of what will happen after the surgery. My best advice for moving on is to adapt and adjust to your circumstances. Believe me, I know how hard it is and how long it takes.