*sorry (#sorrynotsorry) for the language.
Friend: Is [your sense of touch] even half of what you want?
Me: No. I’ve got a long way to go before I reach that point. I can’t train whenever I want, can’t drive, can’t cook, can’t write, I’m half blind, can’t feel touch, can’t speak like I used to, forget how to read, forget how to speak, randomly forget half my life, can’t always recognize people I’ve known for years, can’t ride my bike, can’t play music or make art and I freaking went to school for music and art, can’t go anywhere without telling someone where I’m going in case I forget where I am or what I was doing, can’t hold a job because I’d likely forget to go to work, etc.
Me: But I’m studying neuroanatomy anyway, practicing art and music, learning how to write, learning math and languages I’ve forgotten… It’s just going to take a while to be able to do those things again, but it’ll be so freaking worth it. Getting to learn how to do things that you used to love to do – not everyone gets to learn to do those things twice. So, we’re the lucky ones.
Friend: I’m not afraid of cars. I’m not going to sit still over a car. Isolation is my biggest fear
Me: I hate the isolation. I live in one of the biggest cities in the country but end up going for days, weeks without seeing a ‘friend’. Isolation fucking sucks ass. Sometimes I wish I’d get hit [by one of those cars] but then remember I’ve died before and it fucking sucked, so I stay alive for people like Adam and Andrea and Heather and Christy and John and Guy and you. It’s worth it.
Real friends – people are worth it. ‘People are precious, and sometimes we forget that. …they need friends, they need love. …love everybody, even the little and dumb and fat and ugly and weird, and, well, if we all lived like that, then maybe terrible things like we’ve just seen wouldn’t happen… and I guess that’s it.’
Well, I don’t know. I’ve been asked a few times since having DBS surgery and I don’t know is the simplest answer that I could come up with. I definitely hope that I’ll be where the gentleman in the below video is, but there’s no way for me or anyone else to predict that. The brain heals the way it heals, and no brain heals exactly like any other brain. Even if two brains have the exact same injury (not possible, by the way), they’ll heal differently.
My hopes are that I’ll be walking more normally – my truncal strength and stability, gait pattern, and affected leg strength – in a year; that I’ll be on my way to running; that my speech will be clearer; that my memory will have improved; my ataxic balance, coordination and speech will be more stable; my affected hand function will be more normalized; that my aphasia won’t irritate the crap out of me anymore, and I hope that I’ll be able to write my name without it taking upwards of two minutes.
Let me explain. I can do all of those things. I I can walk, run, talk, remember, balance, speak and understand what’s being spoken to me (for the most part), write… just not well, or at least, not as well or as easily as I would like. But there’s always room for improvement.
I hope that you, whoever you are, don’t take anything for granted, though I know that you do. It’s an inevitability; it’s likely that I’ll be taking my vision for granted again within a short amount of time.
Taking things for granted happens. It’s a part of being conscious. But that doesn’t remove any of the value of whatever it is being taken for granted.
Common normality is what the majority of people can do with relative ease – those things are what some of us regret having taken for granted. You don’t know that you took something for granted until you realize it’s gone. And, like my vision, I didn’t realize that I’d taken it for granted until I had an inkling of an understanding of what I no longer have.
But it’s perfectly okay to miss out on things. In fact, simply because an ability has been removed does not mean that the person it was removed from will miss it or wish that they could have that ability again. Humans are amazingly adaptable. We’re incredible.
I’m going to go look at more stuff now.
I can’t even begin to describe what this is like. Sure, I can describe what this looks like. But I can’t describe the feelings that go with it. This is freaking amazing. I haven’t seen so much at once in so long. It’s not perfect, but I can see. I can’t believe I’ve missed so much for almost three years and had no idea that there was an entire half of the world that I was missing out on. A video will come later. I’m busy looking at things.
…like pre and post-surgery stuff. Thanks for the reminder, Jeff!
Below is a quick video of me at my movement disorder specialist’s office before programming. Literally just before. I was actually there to get programmed and they took a video of a movement before programming me.
Next is a video of my walking 1 week post-surgery. It’s improved since then and will continue to improve the longer I keep the DBS device turned on.
I will be returning to therapy in a few weeks to resume OT and PT. I’ll try to be more frequent with progress videos.
Everything can only improve from here. The longer my DBS system is turned on, the better my results and the better I respond to the treatment.
Something to note is that since my movement is better and I’m more stable, I’m down almost 15 pounds since the surgery. Most of that is due to the surgery, what with recovery and everything. The rest is from a combination of being able to be active more easily and with a reduced frequency in episodes of fatigue. So that’s nice.
Okay, as usual I’m running late to get ready for it an appointment. I’m off to my neuro opthamologist to see about some prismed glasses, will update later.
I hadn’t realized that I sort of simply dropped off the radar after the surgery. I didn’t mean too! My immune system took a bit of a hit, and now I’ve been sick since the middle of last week.
A quick update: the results from the surgery are pretty amazing. I’ll take a video of my movement with the pulse generator turned on and turned off. Right now I’m headed out the door to have the staples holding my head and chest shut, removed. Will post later!