Sunday, September 15, 2013


An osprey nest platform
outside the nature center
I live a half mile from a nice beach, so I'd never been to Hammonasset.

This is a shame, I was told when I finally went this year, because the boardwalk was wiped out during Hurricane Sandy last year, along with a huge bathhouse for showering and changing. Those who have been camping at this beach for years (even decades) were very nostalgic about the beach before the destruction and erosion.

I wanted to tell them it's still pretty damn gorgeous. The waves are minimal compared to any ocean beach. Connecticut's unique as an
The view from our campsite at dawn
East Coast state for having almost all of its ocean water channeled through a narrow bay, Long Island sound, which warms and calms it like a bathtub except during storms, when it traps the water and floods the shores for tide after tide. It's been an uneventful hurricane season and the week we went camping was sunny and dry so the waves were mostly blips against the shore. I'm used to that so it didn't bother me. And I thought the land was beautiful.

Going was a random, impulsive decision. The night before Mark and I
Ava and Liz at the beach
helped move our oldest son from our home to Richmond for a pre-med graduate program, I was falling apart. It wasn't just the shopping and packing, the UHaul rental and the driving, but it was also what I faced when we returned home: a week without any summer camp, school or work to shuttle kids to and from. Funny, because I'm pretty sure I complained a whole lot about the shuttling, but without it, the week yawned hot and needy with the promise of "What are we doing today?" being played on repeat.

So the night before we went to Richmond I was keeping Mark from sleeping after another of his 13-hour work days with my laptop open, sticky notes out, Red Sox game on. I was trying to confirm our hotel reservation (which I had cancelled by mistake, so I guess I was making a new one) but the reservation site kept crashing, and their 1-800 number wasn't answering. I clicked on the state park website for refuge, thinking of Labor Day weekend. Ten minutes later I had reserved the last of more than 500 Hammonasset camping sites for the following week.

I made the hotel reservation from the road.

Shey and Ava playing near the dunes
Our trip to Virginia was rushed and soul-depleting, 22 of the 44 hours of the trip spent in or close to traffic on the I-95 crucible. We arrived home at 3am thinking the camping idea was a horrible one because we were so exhausted we were fighting, and couldn't face another pack/unpack/assemble gauntlet. Mark had about 3 hours later that day to set up the site before he started another 5 8am-8pm work days. We didn't have groceries in the house for those who weren't coming camping, I hadn't done my usual two days of camping packing because I'd been focused on Ryan. Chores and errands had piled up while we were away.

But camping is escape, we knew that, so we got through it. When our site turned out to be a few feet from a very loud generator that ran 15 hours a day (most sites at Hammonnasset don't have electric or water hook-ups), the staff found us a quieter spot so I could stay. And once we settled in, I was suddenly the happiest I'd been in a long time. I like mountains and woods and hiking, but I like the sound and sight of water even more so camping at Hammonasset was special.

Lizzy touched the snakes.
I took the pictures. 
The campground is mostly circles of grassy, sunny sites. Not my thing, I like shade, but there's enough of that too. It's very social, with lots of groups of people who camp and cook together. There's clam shacks and crabbing rocks and reeds and marsh and the most beautiful sunsets. A nature center full of snakes and fish and a woodchuck that's remained nameless for a year despite daily hand-feeding. Movies or bingo at night, a big playground, and an ice cream truck that delivers ice and wood, long after dark. Kids writing in chalk on all the roads outside their campsites, making outlines of each other like they were dead, then burying each other in the sand at the beach.

Reading and writing inside my tent on a rainy day.
Lizzy did almost all her summer reading this week.
Without complaint.
More people than you'd expect go into the water at Hammonasset in
their clothes. Some girls from a residential group home did, followed the next day by bunches of Bangladeshi families attending a religious (and cricket, as far as I could tell) festival. Their gauzy clothes floated in the water and the girls and boys both shrieked at the same pitch. Old ladies waded in wearing clothes from head to toe, and sandals, and laughing.

Our first-ever trip to Lenny and Joe's Fish Tale
Mostly it was Lizzy and I, hanging out and reading. We left the park only once, on a rainy day to get lunch. My muscles unbunched in degrees, like in yoga, as we relaxed into the week. Mark commuted and was so run down he got bronchitis but said sleeping outdoors helped him cope with pre-inventory madness at work. He also said his coming "home" each night to a campfire and a game of GUBS--and peace--was the best part of the summer for him.

For me too.

Lizzy is the youngest of our eight kids and we have rarely spent a day alone with her so this was a gift. She's hilarious, and very, very sweet. She was also bored without siblings, and begged her sisters to keep her company. Sheyanne came for two nights with her cute pixie Ava and that was great. And
Caitlin visited twice, once with her boyfriend, and the second time, with her fiance.

That's a story for another time :) Love, Lisa

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