Friends, I started intensive vision therapy this week and let me tell you.
It's terrible and awful and also life-changing at the same time. Things are different.
I'm to do this intensive part for two full weeks, including weekends. The way that it works is that I'm laying on this bed...of sorts? With vibrating pads underneath it. The vibrating pads do their thing, then I look at this bright dot that changes colors, and there's some infrared stuff that goes on, but that's not the part that's making a difference. Or maybe it is. I don't know.
The tangible difference is being created by the rotation of the bed. Rotation is the wrong word, but it's the only one I can think of. It doesn't move me around in a circle side to side, but more in this oblong rotation up and down and diagonal. It's not fast, but it is movement. It moves in such a way that with the sensory deprivation of the pitch black of the room, it makes me feel like I'm five years old again in a moving car. I got so motion sick I almost had to stop the first two days.
And I do that for an hour every morning at 9:30.
I've had words for my vision therapist. She laughs - she's heard it all before.
One thing that I did not expect at all was how acutely I became aware of my brain injury. It's working specifically on that part of my brain, I can tell, because everything got harder even after day one. But that's by design - or so I'm told. Right now, what's happening is that this therapy is breaking down all of the accommodations I've made for the past 46 years of my life to compensate for the deficiencies that come from my eyes not talking to each other. I thought I was making progress with the regular vision therapy I was having.
I was not. Or, I was, but just not this type of progress.
I thought I was miserable before when I was adjusting to regular vision therapy.
I absolutely, without a doubt, was not. Now I'm irritable, overwhelmed, frustrated, nauseous, low-key dizzy, and either right on the verge of or in a full-blown migraine 100% of the time.
This may sound like an awful way to live, but this is legit how I felt most of the time, and I'd had some improvement in my symptoms, so mostly it's just frustrating and I'm mad because I feel like I'm backsliding. I know I'm not, though.
This might be among the most stressful weeks of work I've had since I opened my practice. Is it THE most stressful? No. Close to it, but no. It's just a signal that changes need to be made, and I have two fantastic people to hold me accountable to those changes. You know how I know something is changing? Even in the stress, I'm calm. I feel ok. We had a hard meeting earlier today, and you know what? I didn't freak out. Was my knee-jerk reaction to avoid? Yes, but instead I was able to lean in. I feel no panic, I feel no awful feeling of doom or like I'm going to burst into flames. Has it sucked? Yes, but it's absolutely not outside of the realm of things I can handle. It's so weird that I feel peaceful, but I do.
Also, I'm surer on my feet. Do you know how many days it's been since I've tripped over something or stubbed a toe or done something mindless to hurt myself? Five. Do you know what my all-time record is of number of days I've gone without tripping over something or hurting myself in some way? ALSO FIVE.
Also, my eyes don't take as long to focus on what I'm looking at.
I've also focused in on something important. Really, really, really important.
For the first time today, I acknowledged my limitations out loud that are due to my brain injury. Because I've struggled to accept that I even have a brain injury, that's for other people, there's no way in hell I can acknowledge the limitations that come with it. I struggle to communicate, I become so easily overwhelmed, and then when those two things collide, I become a total mess. That's to say nothing of the difficulty focusing, and all of the other stuff that I so easily put in the ADHD box when it's absolutely, without a doubt not that. This is different.
That's also to say nothing of the fact that I lost my ability to read. I think it's going to be coming back, but I can't be sure. I've also found a work-around that is listening to audiobooks, but that's not always how I want to digest information and also if I read something particularly compelling, I end up crying in my car, which has happened no less than four times this week alone with the book I'm currently devouring.
This author is talking about my brain injury journey, and at first I was incredulous: My brain injury journey? Whose brain injury journey is that? I don't have a brain injury. All of the things that the author talks about that she's heard from other people that have been really hard to hear or invalidating? I've said them to myself. No one has even needed to say them to me, because I stop myself before it even gets to that point. That's how self-invalidating I am about this. I'm cringing even writing about it.
Three chapters into this book, I signed up for a brain injury support group. I was still not ready to talk about it openly, but maybe I could to other people who had similar experiences.
I've been both ignoring the fact that I have a brain injury and been extra hard on myself because it shouldn't be this way. I've realized that I've been beating myself up for something I can't under any circumstances help for the past four years, one month, and eight days of my life. Every time I got frustrated because I was too tired to do what I was doing and I couldn't push through it. Every time I couldn't complete a task and didn't know what to do or even how to ask for help. Every time I actually asked for help, which was rare.
You know what I did in this meeting earlier today? I even called it "Playing the brain injury card" as if it's not a real thing and I'm milking it somehow. As if this isn't a debilitating injury that I'm going to be dealing with forever. Literally, forever.
So, I've discovered my March Madness goal this year, now that I know my thyroid tumor markers are still undetectable and I can put this on a shelf for another year - I want to walk away from my neuro appointments with better strategies to support myself and how to ask for more support from others, and how to be able to be open about my brain injury in a way that feels safe for me. I need to be able to learn how to articulate what I need. I am surrounded by people who want to understand, and if I can't give them the opportunity to both do that and be supported at the same time and not feel so alone, then what the fuck am I doing?
I could also beat myself up for not doing this work three and a half years ago, but I'm choosing to celebrate that I even came to this party instead of beating myself up for being late. But let me tell you, letting go of this next-level stubbornness is going to be one of the hardest things I've ever done, but also a game-changer.
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