The original photo belongs to the US Navy (the coloring and blur are my edits). It was taken by Navy photographer K. Wilson aboard the USS Fort McHenry in Oman in September 2009.
One of the best things that has happened lately is that I’ve had the opportunity to reconnect with a few people from my inpatient days. I wrote some notes to my hospitals (I got sidetracked and plan on more), and received some responses via the contact form on my site. Sometimes I don’t even know what these people look like, but I know they exist and I’ve heard their names, or I think I dreamed them but what happened (I know now) was real. But yesterday I got a note from someone I remember with great (relatively) clarity. Like the cool breeze that surprised and delighted me yesterday when I woke up, I got a message from a fellow-patient and friend, who found me because her neighbors go to my church in Oregon.
When I saw the message I just burst into tears because I’ve wanted to “talk” to M for a long time, but I can’t get my brain to remember to settle down and figure out her contact information. She made it really easy for me, though! (If you recall, she’s the one whose dad helped me get into the elevator for the first time, but I got lost anyway. Also, her dad and husband were the witnesses on the legal papers Tanpo drew up for my care.) She mentioned something that got me thinking – how sometimes having a brain injury is really an invisible sort of disability. I got the notion at once – if you see me and I’m seated and you don’t notice the scar on my neck you might be hard pressed to know that something happened to me. I’ve known people for years before coming to understand that they were living with a brain injury.
I do have outward manifestations of disability, but others are in better physical shape (although their initial suffering might have been acute), and so are left to navigate the world of interpersonal relationships and social situations without the immediate “wiggle room” people are more inclined to give you if they know you’ve had head trauma. This can be a good thing, e.g. when I’m feeling like I just want to blend in, but it can also lead to embarrassing and potentially dangerous situations. It’s good that I’m always attended by a parent or friend who knows my history and keeps me from getting into too much trouble.
I’ve thought about how people say things like, “my disability doesn’t define me.” As much as I want this to be true for me, I cant wholly agree – it kind of does (“it” = my disability). It certainly informs everything I do waking and even sleeping. Moving around to find a cool spot on my pillow takes more effort than I’d like, and often when I’m falling asleep the tingling in my legs wakes me up. My personality is largely the same, but there are some additions/subtractions that are present only because my brain bled.
At the same time, I do NOT want to be a disability poster child. A poster child can be representative (“this is a sample of our organization’s population, and their appearance is a credit to us” – like Lt. Cmmdr R saluting above), aspirational (“this is what we want our population to look like”), or out-of-the-box (“it is a little known fact that this movie star/athlete has this condition – (s)he is managing it well, and so can you”). I don’t even want to be aspirational – I want my recovery to be so non-representative of the general AVM/Stroke population that it precludes me from being a poster child. We’ll see if I get what I want. Nothing’s written in stone yet, I don’t think, so I’m just saying what I’d like to happen.
It’s not that I don’t want to be identified with the disabled community. I’ve written before about “My New Cohort” and whether or not we have a secret handshake. Living like this probably makes me more compassionate when I see someone at the supermarket or at the mall in a chair or rocking a prosthetic limb. It’s just that I want to be so off the charts in terms of recovery that I’d be like a commercial on TV with “results not typical” scrolling on the bottom of the screen. But who doesn’t want that?
I’d love to be so well that I don’t need the extra help when I have a floppy brain moment because I don’t have them anymore. In the meantime, though, I am grateful that I have friends and family who look out for me in case I do, and I try to remember that each person I meet might not look like a poster child for drama/trauma, but I have no idea what’s going on under the nicely presented exterior we are taught to cultivate in a polite society. You never know the story behind the person bagging your groceries, the customer next to you at the coffee shop, or the patient in the waiting room – and you never know who might need some extra grace and/or encouragement.
On becoming a Supple Leopard poster child: