Friday, September 6, 2013

Not So Special

I haven't been able to write for a while.

It started in late May with a convergence of factors, like most shifts in life. This was the one-year anniversary of my last concussion, and more than six months past when I expected to return to work. I'd begun my audio therapy and it was exhausting, so I struggled even more doing everyday things like cooking and driving.

Also talking and thinking.

Which a number of people noticed, which made me feel bad. How other people feel about my deficits is a very tricky business, even harder than how I feel about it, which isn't easy to describe. I don't want people to feel sorry for me--few people like pity, I'll bet--and I much prefer support and good humor, but guilt gets in the way.

They feel helpless, and avoid me, which sucks. And every time I screw up, I'm reminded that my brains's still muddled. That I used to be able to navigate curbs without tripping, and work my windshield wiper knobs without pulling over and studying them every damn time it rains. I'm tempted to pull out a "Get out of embarrassment" free card from my back pocket when can't figure out how the velcro tabs work on my granddaughter's preschool nap blanket and need her help, or can't figure out the right change at Dunkin' Donuts (with a line behind me).

I looked up the author P.J. Long who described an injury and experience similar to mine (I've noted it here before, the book's called Gifts from a Broken Jar) and found out she'd recovered a lot of her skills over the years since, published a book on organizing after a head injury, but just when she was doing better she was flattened by a divorce and I wondered--wouldn't you?--even though I'm sure every marriage is different and ours feels strong and stable. I'm not the woman he married, though we never are after a time.

So I pushed for more cognitive rehab to see if I could get better any faster. Wanting to see the edge at least of what I'll look like when all the recovering is over. Wanting to recognize myself for who I used to be. But the cognitive rehab couldn't start in earnest until there was more testing, more recommendations, more insurance approvals, and they're not in place yet. All I have is the echoes of the testing, which always brings me to tears. Figure out how to get this cork out of this test tube (can't). Remember this face (maybe). Listen to this tone a million times and tell me the pattern (are you crazy?).

In limbo, I'd sit down to write, but let myself be pulled into doing something for the kids instead. As exhausting as it is to feed the constant needs from a lot of kids, it also made me feel productive, and they were appreciative, to a point. Ryan needed to move to Richmond. Ciara to visit California with my Dad. Sheyanne needed help looking for jobs. And, as a nice summer bonus, Luis proposed to Caitlin so we have a wedding to plan. The house was noisy, and crowded. We had two cars to share between four people, leaving a dozen pick-ups and drop-offs every day for camps and jobs and interviews and summer school.

Which of course made me crazy. Some mornings Sheyanne would sit and wait for her share of the day's work list through two cups of tea before I was able to consolidate all my scribbled post-it notes into a plan for the day. Mark was working extra days, and I was regularly having meltdowns on days I ran the house solo. My meltdowns aren't very noisy themselves. They're mostly me turning into a statue. And empty shell type statue.

We started camping to help me cope with the summertime house craziness with kids crawling up the walls and out the windows. It was gloriously quiet and peaceful once we got there and set-up, but until then it was another organizational Olympics. I took my usual ten-thousand-hours to make a packing list, and still it took me two or more days to pack for a two-day trip, most of that time spent walking in circles.

This is an aside, to anyone who's reading this blog because you or a loved one's had a head injury that doesn't fix itself as well or as quickly as most people: the person testing me at the UConn Speech and Hearing Clinic who did my updated cognitive testing asked me more specifics on my memory problems than anyone has before. Were they remembering what happened last summer, or what number she just listed  or what I'm supposed to do at 3:00 this afternoon? The first is a problem with memory recall, the second is a problem with attention and automatic recall (also called short-term memory, or working memory) and the last is executive functioning and planning. Though I have problems with all three, it's the last one that takes up most of my energy, and that's the easiest to improve, or at least develop compensatory strategies. Oddly or not, learning that made me feel better.

I asked her why everything else is a problem but reading and writing seem to be (mostly) spared and she shrugged. "We still don't know a lot about acquired brain injuries and repeat concussions," she said.

Why is that? I guess the NFL will figure this out and let us know. Or not. The settlement this week doesn't seem to do justice to the problem of sharply raised rates of Parkinson's, ALS, Alzheimer's and dementia among retired (but still relatively young) football players with histories of multiple concussions.

This week I saw some moms standing at a nearby bus stop with their kids after a three-day weekend who looked like statues, reminding me how common it is to be overwhelmed and shutdown, and you still have to function. If those women weren't watching their kids near the road and something happened, there wouldn't be any worthy excuse. If I pull away from a gas pump without removing the nozzle from my tank, the gas station owner's not going to care why if I create a hazmat mess. Sure, I used to be a helluva lot more together and competent. But it's the same for people with chemo brain, or living through grief, or who've just lost their job, or who don't speak English.  I'm simply not that special. At times we're all clueless and lost.

Two nights ago I went to Open House at Ciara's high school, and it was bedlam. The classroom numbers down the hall are not consecutive, and the hallways shoot off in random directions. I attended this school for 4 years but for obvious reasons that didn't help me on this night. I made friends with teachers standing in their doorways, asking them to look at my schedule, point a finger in the right direction. I was confused and helpless, tagging after the few parents I recognized in hopes their kid had the next class with mine. I could not navigate the school by myself.

And I saw dozens of people having the exact same problem.
Well maybe not dozens :).
But I wasn't the only one.

Yesterday I woke up without the burden of thinking "This Isn't Me." Because it is. And I went to the library and spent all day trying and failing to redesign my web page, a task a year or more overdue. Even before you send any writing in for publication, you have to have some sort of author "platform" and this little website is mine. When I first set it up, a couple of years ago, it took me a couple of hours.  I'm now going on a week without getting it working, at least 30 hours, and I've wiped it out five times in the process. My brain is running as slow as drunken molasses. But in the library, during the day, I'm surrounded by other examples of why this doesn't make me special. One woman talked into her hand like it was a cellphone. Another was filling out a job application for Stop & Shop and asked me what an Educational History was.

Today I woke up feeling happy about blogging. I want to write about camping, and my audio therapy, and my efforts to edit on wikipedia. Tomorrow I'll hopefully be ready to get back to the story I abandoned in June, a few weeks short of finishing its revisions. I'm competent at writing, so doing it heals me.

And just-like-that, the process is reversed. When I let my limitations grow in magnitude,into something that makes me different from everyone else, they're crippling. When the I keep them in perspective, they're not a big deal.

A good friend of mine had neurological problems last year that, like me, our neurologists didn't understand. Tracy Murphy Comstock was my age, a buddy through my mother, who was her mentor.  Tracy and I married and had kids at the same time, laughed at the same troubles over the last thirty years. She had weakness in her hands when I had post-concussive problems. But my symptoms slowly lessened while the weakness in her hands worsened despite a diagnosis of peripheral neuropathy that should have stabilized or improved. Her voice changed. She couldn't swallow. And she was diagnosed six months ago with ALS. By summer she couldn't speak.

Tracy died this week of pneumonia, her kids still young, her husband stunned.  She handled herself over this past horrible year with incredible grace and humor. I loved her, as did about a thousand other people. She was a really fantastic person, a genius with numbers, CEO of the Soundview Credit Union after my mother. She defined the word "vivacious," and now she's gone.

ALS is another neurological disorder we don't seem to know enough about to fix. Shame on us. It's hideous.

So it's good to be here. Talk to you soon.
Love, Lisa

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