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.
