i really wanted to be in a good head space to write a post about dealing with a brain injury. i wanted to write something very uplifting, about how although life is different now, it is no less fulfilling or gratifying. i wanted to give hope to other people who are dealing with TBIs (traumatic brain injuries). but this isn’t going to be that post.
when i thought about the one word i would use to describe life with brain damage, that word is grease.
i know that’s kind of an odd choice. it has no emotional content (even for me) and no special connection to brains or illness. but ever since my brain became altered, i feel like my life has become very greasy.
words and goals slip away from me with equal ease. my relationships are smooth as silk or on the edge of collapse at any moment depending not so much on external factors as on how well my brain is firing at any given time- although what i am experiencing feels very real to me so i can never tell at the time that only my brain is failing and not my relationships. my days in bed slide into weeks that sometimes smooth greasily into months and before i know it my kids are unraveling because i am so unavailable.
things that should be easy are hard, like going to the library to return books, and things that should be hard are sometimes very easy because my brain locks onto things it can’t let go of- like how best to organize a closet, which i can then focus on exclusively for hours at a time. things i should know i often don’t- like how old i am (that’s a greasy fact in my brain, along with the order of the last few presidents). and things that some people find hard to understand are easy for me, but i don’t know why.
a lot of the time i seem to have a lot of clarity, but on the more greasy days i am usually in bed so it can be hard for people to understand just how compromised my functioning can get. this is one of the more difficult challenges of a TBI- that it is invisible. so if i am at a store and i can’t understand how much something costs, i will pay with a debit card and nobody realizes that i can’t understand money on that day. if i can’t remember how getting gas works, i will either drive the car that has gas in it or skip running errands for that day. if i can’t put together coherent sentences i don’t blog and nobody is the wiser.
some days i read neuroscience texts and some days i can’t understand enough written language to read a recipe- and that’s not an exaggeration. some days i am grateful for the resilience of the human spirit so i can keep fighting and some days i wish my body would just give out already because i am so so tired of fighting and i feel like i can’t do it any more.
if i had to do this all over again- and by the way, i highly do NOT recommend getting a TBI if you can avoid it!- i would find a support group. i would find *h a support group. i would find my kids a support group. of course the irony of all of this is that when one gets their brain blasted to bits (by whatever mechanism that happens), one is the least able to find or get to any support group. we actually had no TBI support groups in my area, but in hindsight, i wish i would have tried harder to find one on the internet. but i was so busy surviving that it didn’t occur to me to find a support group. and then i was so busy trying to be amazing and heroic that i was too busy trying to be amazing and heroic and i sort of overlooked the fact that i was also falling apart just a little.
and so was my family.
because the family of someone with a TBI is very much collateral damage. and i’m not sure how much is said about that, but i’m sure that more needs to be said. i’m sure there need to be more resources for them, because however invisible we are, they are invisible x10,000.
while we are getting treated and doctored and physical therapied and occupational therapied and evaluated and tested, they are the silent support staff, expected to be ever patient and constantly tolerant. they are expected to put up with our moods and our meds and our side effects and our accompanying nonsense, all the while smiling and being grateful that we are still around.
but guess what? it isn’t always a picnic that we are still around. people with TBIs are not always fun to live with. our personalities change and we get angry and ornery and frustrated and instead of being grateful that we are still around, we vent all over the people who are trying so hard to be patient with us.
a few months ago i read a book about a woman whose son was hit by a car and suffered a brain injury. she became active in the brain injury awareness group in her state, and i was like, “eureka! there is such a thing! maybe there is one in my state! i should look that up…” so weeks and weeks passed during which i did nothing. then i finally looked online and found out that not only do we have such an organization here, but we also have about a gazillion support groups and a bunch of them meet very near my house. and i was so excited and inspired and i was like, “whoa! this could be a game-changer! i must go to these groups!” whereupon i did nothing to follow up.
and then i had a fairly bad health crash, which i am still crawling out of, and that is the greasy nature of my TBI- things glitter in front of me and i fail to grab hold of them. or i grab them too tightly and they slip away. or i misjudge the distance and and and…
i want so much to be a TBI success story, and in some ways i am. i am still married, and i haven’t committed suicide. statistically, this puts me ahead of the game. i can walk and read and drive- all things i was never supposed to be able to do again, so this means i have exceeded my prognosis. but i am also at a point where for almost all of my children, they can’t even remember a time when i wasn’t sick. i am at a point where i dread anyone asking me for anything because i feel like it is just one more opportunity for me to fail at something, and that is a very horrible place for me to be. i am at a point where i committed to writing a post for brain injury awareness month, so here it is. i wish it was more positive, but the month isn’t over yet, right?