As the third year anniversary of my brain injury has somehow come and gone, it has gotten me to reflect a bit more. This has been bigger than anything I've ever dealt with before. (And, as you know, I've been through a lot!) I feel frustration on a daily basis. Frustration over my ongoing limitations and lack of being able to do even a portion of what I once could do. Frustration over not feeling like I can remember even basic things. I've had to learn tricks and double up on my checklists just to function. And, even then, I don't always feel successful.
I know I've been fighting this injury. It has been hard for me to accept who I am now. Is this my new normal? I don't like the idea of having a permanent disability. I never thought I would end up in that category. I know three years isn't what I should consider permanent yet but it sure seems like a long time. I have had some improvements since those early days but no real Hallelujah-angels singing-miracle kind of moments. Even if they're small improvements, I hope to have more. It's been hard dealing with vertigo and balance issues, constant memory flubs, visual and auditory overload, fatigue and headaches on a daily basis when those things were NEVER an issue.
There has also been an immense financial frustration. Anyone who thinks you can readily survive without a regular paycheck is highly mistaken. And, what's supposed to be in place to help is also greatly lacking. Who needs extra financial struggles when they are going through life-altering medical issues? No one. Oh, and have your regular medical checkup options taken away? No worries there, huh?
I try not to complain and most people wouldn't know by looking at me that there is anything “wrong” with me. Brain injury is one of those “invisible” issues like Lyme, Chronic Fatigue and even Cancer. The, “But you look fine,” attitude still plagues me and those like me.
If I do too much and don't pace myself, I pay for it for days afterwards. There is no “pushing through it.” Things like shopping are usually a race-like event because time spent under fluorescent lights is exhausting and headache inducing (more like increasing because I always have a headache). And, no, sunglasses do not help to take the flicker away that I see from the lights, nor do they help with the overload of stimulus all around me. Then, there's the trying to get my mind to make decisions. Just looking for a product on a shelf can be absolutely overwhelming with the flickering and everything else going on. Then add in, trying to hurry.
The hardest part of this brain injury, I know, is the pressure I put on myself. The pressure to still be who I was and do what I could. I am lucky that I have a great support system of friends and family and a loving partner who watches out for me and does all the things that I can't do (despite her just finishing treatments for Stage IV cervical cancer!)
I had a little thought the other day that maybe I'm like a butterfly? Well, the life I had before the brain injury was my caterpillar stage. I was busy growing, exploring, experiencing life with a super high activity level. Non-stop hunger for living go go go. Cramming as much into every day that I possibly could. And, like a caterpillar, I even shed my skin a few times to become the adult I thought I was.
Now, if I continue with that same metaphor, I'm currently in my chrysalis stage. It's a time of great stillness (like, 35 pounds of extra stillness...but I'm working on that the best I can). To be able to cocoon would normally seem like a glorious thing to an ordinary person, aka caterpillar. Just like a vacation, you might think. But, this has been a stage that I had no choice about making. I haven't even had normal thoughts inside my head since I entered this stage. It literally makes my brain hurt to choose words and to even think sometimes. Doing what one would think are simple things can put you in overload and physically exhaust you. Just tipping my head one too many times can bring on extra vertigo which then could lead to a migraine. And, that is never fun.
You'd think it would be a great time to learn an instrument or even a new language. Learning new things feels next to impossible with the memory issues at hand. Plus, the extra sounds of an instrument can be too much on my head. It took over a year before I could listen to music and even that is without other distractions on a “good head day.” I miss going out to hear all my friends who play in bands or cranking the music on a sunny day while driving to nowhere in particular. Even trying to read has been quite the experience. Reading. Re-reading. Re-reading some more. Not remembering characters or what is going on in a book from day to day isn't exactly enjoyable. Forget about trying to write another book with those challenges!
So, as you can also probably tell, trying to stay the happy, upbeat me is also challenging. I try to find gratitude in every day; be thankful for the little things. Many of my friends with brain injuries benefit from medications to help with that. After trying dozens, I've found that they all have the opposite effect on me. And, that's never a good thing.
I'm hoping this 'restful' pupa/chrysalis stage is just that. A period of real brain healing. A period where I become more appreciative of what human beings can and cannot do. A period of realizing the fragility of our brains and life in general and the importance of concussion awareness in sports (and the workplace). A period of realizing what true patience is. A period of figuring out what I can still do to continue on my goal of making a difference in the world during this lifetime. A period with a definitive end to it would also be nice...
And, when all that is ready to happen, I hopefully will emerge into the new and improved butterfly version of me. It may be a version of me that is different than my former self and I will have to accept that I'm not a caterpillar anymore. I'll finally have a set of wings and I'll fly.