Thursday, December 10, 2015

Thanks Forgiving

I'm usually so busy being thankful for everything I have, this year I've decided to be thankful for -- and patient with -- the things I'm lacking.

Because just as you don't know what you've got until it's gone, you don't know what you've lost until you've learned to live without it. That said, once you've learned to live without, you also truly understand and appreciate what you still have.

Why does this idea rear its ugly head now? Mostly because I've been thinking about my ugly head.

I've been struggling with some of my ongoing Brain Injury deficits. Or maybe they're just my shortcomings. Where does my stroke end and I begin? It matters, but it really doesn't matter. In the end, it's all me; and I have to learn to learn to live with me or no one else will want to.

I recently saw my neurosurgeon for my five-year check-in. Based on the CT taken last year, he feels I'm stable enough to steer clear of him for another two years. Stable's good and all, but I certainly don't want to get stagnant or boring. So my brain has been introducing some "invisible" challenges in new ways.

Specifically, I've had some struggles with motivation and initiation, as well as in properly filtering what people say to me and what I say. This site has a good list of right-side stroke deficits, many of which I thankfully have only experienced in small doses.

One of the things these challenges remind me is that (just as all politics is local) all Brain Injury-- while invisible --  is physical.

Even my more apparent issues which might be labeled "physical" (minimal use of my left hand, my need for a leg brace and cane) are deceptively invisible. My inability to open and close my hand, prevent my knee from hyperextending, or smoothly lift my leg up stairs has nothing to do with muscle strength but rather my brain's incapacity for controlling muscles on my left side. Yes, I have some atrophy and weight gain (stop looking at my gut!), but even that's a factor of lost stamina and mobility related to my stroke. That's not an excuse; it's a fact I have to accept and forgive. Even sitting at my desk all day, performing only mental activities, is enough to tire me out enough that I need to nap for an hour when I get home from work so I can have some quality time (not just a vicious circle of work and sleep).

My physical fatigue comes from extra energy exerted when rerouting my mental activity (including attempts at muscle control) around damaged areas, much like internet routers perform packet switching to find the most efficient route for data traffic.

So I started wondering what that congested highway might look like in my head. And I found some pictures.

Warning: these images may be upsetting for some, but I recommend looking to get a tangible reminder that invisible injuries come from very visible wounds which just happen to be masked by the skull:

This is a cross-section of an uninjured brain (top) and a brain affected by chronic traumatic encephalopathy (CTE) (bottom), as frequently experienced by boxers and football players:

This is a cross-section of a brain which has suffered a hemorrhagic stroke. So if I donate my body to science, my noggin might look something like this:

I know none of it's pretty. I don't know if anyone truly has a beautiful brain. Just having one is a codependent, often abusive, relationship.

Still, even all bloodied and scarred, I'm happy with the one I've got. In some ways, I'm more impressed by what it can accomplish, working around that mess. I can forgive imperfection.

Sunday, October 04, 2015

Wood Aneurversary

Hard to believe; but, yes, it's been five years since my stroke (September 30, 2010,  though there is some debate over precise dates). Apparently, wood is the traditional fifth anniversary gift. It's a stretch, but we did unintentionally go wood stove shopping around the date. And I have to say that burning the past five years feels like an appropriate celebration at times.

At times.

Most days, I wouldn't want to give up all that I've learned and accomplished in this span.

As often is the case come this time of year, I hear many stories recognizing the tragedies of September 11, 2001. And, no, I'm not going to to say 9/30/10 was my own personal 9/11/01; but I was struck this year hearing about a store near Ground Zero which has protected a debris-covered section of apparel as a matter of historical preservation.

It is apparently not an uncommon ritual following horrific events.

Of course, that brought me to thinking about my own cataclysm and what has been preserved of it. Melodramatically, I wondered if I am the living artifact of my own demolition. But there are at least two flaws in that logic:

  • Unlike 9/11 or Hiroshima, I am not a cautionary tale warranting constant reminding of vigilance and prevention. Yes, I advocate for aneurysm and brain injury awareness and prevention; but that's more about people listening to their bodies and medical professionals and people in general not writing off brain injury as just another bruise. You can't walk it off or, "Rub some dirt on it."
  • There is no value in preserving symbols of the event or dwelling on its immediate consequences; nor on dwelling on the relics of the person I used to be. Who I am now, who I have become by building on the foundation left standing is far more important.

There are historical documents I've referred to over the past week: most notably the blogs written by Jamie, comments to them, and Facebook posts surrounding the events. It's still hard for me to fully reconcile what everyone around me was experiencing vs. my own memories in and out of consciousness, especially when I read about the good news which preceded the bad. I remember staying up late the night before my surgery, finally recording what I've come to refer to as my Famous Last Words, with relatively little fear of what was to come.

It still gives me great satisfaction that among the 100,000 or so views of this blog (most no doubt by Ukrainian spambots), about 7% are on that entry. If there's an artifact I strive to live up to or honor, it's the man who wrote those words.

That's one of the reasons I wanted to be sure to write this commemoration of that arbitrary moment in time. As I've told Wyatt when he doesn't want to get up and go to school because life isn't fair, if we can survive the past 5 years, we can get through just about anything.

The rest is all kindling.

Sunday, July 12, 2015

Are You Running From or Running To?

That used to be my silent taunt to people I'd see jogging.It's not that I have anything against runners. There are many runners in my life who I respect greatly. And on some level, I was simply jealous of their discipline. On a basic level, I got it. I remember the immense satisfaction of my high school Phys Ed running unit, when -- over six weeks or so -- I went from being unable to go a quarter mile without getting a stitch in my side to running a mile without being winded. Of course, that was also in the carefree dementia of youth, when your body foolishly just does what you ask of it. As I aged and considered exercise as an important undertaking, I felt that running as a pastime held a cultish mindset I tend to resist:  like religion, diets, and Game of Thrones. It also plays heavily into our culture's obsession with the idea that good is never good enough. While in her twenties, Jamie literally ran her knees into the ground trying to satisfy an unreasonable body image.

Of course, over the past five years, my inherent envy over running has taken on unique shades of green. For one thing, gravity is by no means my friend. And my body no longer does what I ask of it. That said, I also make an effort not to ask too much of it. Throughout my recovery, I've been far more interested in quality over quantity. I walk a steady pace of barely one mile an hour, and I don't care to improve upon that much. Speed leads to distraction, and distraction leads to accidents. I would much rather take some extra time safely arriving at my destination than pick myself up off the ground multiple times getting there.

Nevertheless, I've had a number of dreams lately where I'm running. Not an all-out sprint; a sort of gliding shuffle based in my reality.  I'm always in some sort of open, mossy field that looks soft enough to propel myself without too much fear of misstep. Oddly enough, in my everyday travels, I don't come across many open fields. So I haven't drawn my dream into reality.

Today, however, we beat the heat at a local State Park, beach, and pond. After about twenty minutes or so of wading out into the swim area; adjusting to the temperature and weight of the water; watching other families frolic and cavort, I turned back toward the shore and saw Gus standing in the shallows. And I thought, "I could just run to him." It wasn't a mossy field, but it would do. So I steadied myself, measured the thickness of the water, and with a cry of, "Freight Train Coming!" I charged. Mind you, this train was waist high in lake water, wearing a life jacket, and probably hit a breathtaking top speed of 1.25 MPH. But I thought that I was running, I felt like I was running, and the priceless expressions on my family's faces suggested that I looked like I was running. Therefore, I guess I was running.

 Over the course of the afternoon, I managed to chase down and pounce on all three members of my family. So, as far as I'm concerned, I  ran a marathon in twenty-foot bursts.

Monday, May 25, 2015

A Stroke of Luck

When I was fourteen or fifteen, I wrote an O. Henry-esque short story called, "A Stroke of Luck". Set in the early Twentieth Century, it shared a wealthy man's recounting to his barber about the day he was inspired to make his fortune in the newborn aerospace industry after hearing hawkish cries of, "Buy plane, or you're nuts!" out on the street. Upon leaving the barber, he curiously hears the very same call. He follows the sound and is led to a small candy shop, merely promoting its sale on plain chocolate (Oh, the irony!).

Yes, it's horrible, but that tale -- confected on the phone while helping a friend spitball ideas for a story she had to write -- was my one of my first forays into literary competitions and the label, "writer" and won me a trip to the state capitol to meet Governor Thomas Kean (R-NJ, 1982-90), chaperoned by my ninth grade English teacher and crush. Good times.

That chapter of my life and how that story's title has been turned on its ear by the events of the last five years (Oh, the irony!), was evoked by my recent attendance of a stroke conference at the University of Southern Maine, which reminded me of both how fortunate I was to have been where I was when I had my stroke (in the Massachusetts General Hospital Neuro Intensive Care Unit, as opposed to my living room) and how much I still struggle with the aftermath of that event. Much of the conference -- primarily designed for medical professionals -- centered on education about immediate intervention for emergent care givers. Generally, I have not been drawn to advocating for prevention measures or education around recognizing when someone is having a stroke because I had a hemorrhagic stroke (caused by bleeding), not an ischemic stroke (caused by a blood clot blocking blood flow to the brain). So my prevention pitch goes a little like this: "Don't get an aneurysm; don't have brain surgery". It's certainly not that I don't empathize with anyone who's had an ischemic stroke (in fact, according to one surgeon who reviewed my MRI pre-surgery, it's possible I did have undiagnosed strokes caused by clotting in my aneurysm).  Sharing Brain Injury Voices' table at the conference with Maine Brain Aneurysm Awareness, I certainly felt the poster child for The Cautionary Tale. I also fit the description for another theme at the conference: "Young" strokes (depending on who you ask, covering ages 18-65). That's a categorization I've struggled with in part because being a youngish stroke survivor brought with it some high expectations for improved recovery. Whenever I see other young survivors, it's hard not to compare my recovery to theirs (two speakers had ischemic strokes in their twenties and eloquently told their stories while gesturing with both hands (something I cannot do). Then I have to remind myself that every stroke is like a snowflake, every recovery yet another. I learned a lot about the difficulties a young person suffering a stroke may have just getting first responders to recognize the symptoms when they take place in an unexpectedly young body (especially one that isn't stereotypically overweight and linked to cardiovascular disease). I learned that there's actually a Stroke Belt in the Southeastern U.S., tied to those sorts of health risks. I also realized the stigma of ischemic stroke has led to a subtle bias on my part, whereby I always preface telling of my stroke with,"...after brain surgery to clip and remove an aneurysm...", lest someone get the impression I brought it on myself through poor diet and lack of exercise. Blame is lame. Or that I somehow haven't done enough to fully recover from my stroke (something else I get to beat myself up about on an ongoing basis). Jamie was kind enough to point out that she was told that along with the stroke, I had to battle the consequences of swelling in my brain. Much as I appreciate the excuse, studies actually show that while there's higher mortality with hemorrhagic strokes, recovery tends to be better. So I'm beating all the odds by surviving the event and refusing to regain fine motor control. But recovery is subjective. That's been my biggest lesson nearly five years out: defining a satisfactory recovery has less to do with reclaiming former abilities than with finding the right balance of ability, adaptation, and letting go/moving on. In that way, I'm very lucky.

Saturday, April 11, 2015

Death Cheater

I think it's fair to say everyone's cheated death at one time or another. I managed to walk around with a time bomb in my head for ten years or so. A few weeks ago, I did a 180 on a snowy road but lucked out that no one else was around (sorry, mom, I know that probably stresses you out, even in perfectly-safe retrospect). Jamie was nearly eaten by an Everglades alligator ("nearly" in the sense that she vaguely considered jumping into a cool canal on a hot day just before seeing a gator coast by). My father-in-law, Dana, passed away recently. But in the twenty years I knew him, he was constantly in mortal peril (often under unfortunately comical circumstances):

  • He was literally run over by his own truck, which rolled out of Park into a ditch at the side of his driveway.
  • He tumbled down his steep front steps on an icy winter day. Fortunately, his truck broke his fall. This incident led to him getting a flatter, second driveway off the other side of his house.
  • He was bucked off his tipped-back tractor mower and subsequently chased across the yard, spinning blades in hot pursuit.
  • He drove into a roadside ditch -- truck tipped over -- and had to climb out the  driver's window (I think he was 80 at the time).
  • He was diagnosed with "Pre-Leukemia" and weathered chemotherapy to keep it from progressing and/or spreading, though it unfortunately did -- to his lungs.
Dana would be the first to admit that he was a stubborn old bastard in the greatest of New England stubborn old bastard traditions, refusing to spend winters further south in Maine with us; his independence was more precious than his sense of personal safety. As frustrating as that was at times, it's certainly a perspective I can appreciate and respect. He had also accumulated enough good Social Karma over the years that he was always well tended to by friends more local than we were. And, when Hospice advised him he could no longer care for himself, he was willing to come down and live with us for what turned out to be his last week. We were very fortunate to have that time with him, connecting as a family and making final arrangements. Since Dana was a teller of Big Fish tales(where he was often the fish), it's appropriate that one of our last evenings together was spent watching Jaws, set in the Cape Cod of his heyday. Afterward, I couldn't decide if Dana reminded me more of Robert Shaw's swaggering Quint or the townies who set off after the shark with nothing more than an outboard full of beer (he often told stories of he and his friends' exploits).

The only way to truly cheat death is through the legacy we leave behind. For Dana, that legacy is considerable: His family and friends; memorable tales, including bedtime stories about the impish Ring a Ding Ding and the Peanut Butter Witch; and countless physical monuments to his big heart and skill as a carpenter (he'd done work on any number of people's homes in town and handcrafted many pieces of furniture which we've been fortunate enough to inherit: dining table, coffee table, bureau, toy chest). We're also lucky enough to have adopted his Welsh Corgi, Jesse, who is a beautiful reminder of Dana as well as a hilarious sidekick to our much larger white lab/hound mix, Max.

In conclusion, pictures (Dana as grandfather, aka, "Gumpy" and his amazing tree trunk coffee table). Dana, you will be missed but not lost:

Dana and Gus, 2007

The log coffee table, complete with handmade mallet on top.

Tuesday, January 27, 2015

You Never Know

As I hope I've made clear in the past, I'm not a fan of New Year's resolutions. Yes, I could stand to exercise more and lose [quite] a few pounds . Yes, I should finally write my book proposal (I've got my Complete Idiot's Guide just waiting to be cracked open); but no amount of arbitrarily-timed, self-critical promises will make those things happen. Nevertheless, I have accepted a motivational motto for 2015: "You never know..."

I like this phrase for a number of reasons, not least of all its varied interpretations and/or meanings:

1. You Never Know = “Life is what happens to you while you're busy making other plans.”
This quote was written by Allen Saunders but popularized by John Lennon.
2. You Never Know = "Don't Judge a Book by its Cover"
3. You Never Know =,"A true genius admits that he knows nothing."  So said Albert EinsteinNow, I'm no genius, but I am comfortable enough in my ignorance to admit that I possess a pittance of certainty about the world. It's quite liberating really. 

My focus is behind Curtain Number 3.Versions 1 and 3 are two sides of the same coin, but 1 is more about stealing yourself against unexpected mishaps and 3, for me, is more about being open to happy accidents and unforeseen opportunities. Unfortunately, it's only just now that I've realized how Forrest Gump it all sounds. Though I'd take a box of chocolates if offered.

I'll use #2 as a reminder that everyone has reasons for their choices, often unrevealed and not to be judged. I know that -- especially with my kids -- I often jump to conclusions about their intentions and/or lack of consideration. And you know what happens when you jump to conclusions -- You make a jay out of con and clues. No, I don't know what that means either. It's just something I do, because Tony Randall made it look so compelling.

From the outside looking in, "You Never Know" #2 highlights the invisibility and misdirection of my brain injury: My cane and limp say, "this guy has a bum knee." My reliance on one-handed living says, "this guy must have dislocated his left shoulder or elbow or broken his hand down at the mill during the Industrial Revolution." Probably, people don't even notice me not using my left hand. But it's all a good teaching moment for me when they do, just to emphasize our over-reliance on the jellyfish in our heads.

Recently, my department had its post-holiday holiday bowling party, which was a good reminder of all three variations of, "You Never Know":
1. In September 2010, no amount of planning could have fully prepared me for the fact that I'd be attending the January 2011 party in a wheelchair. That said, having that experience to reflect back on makes the last two outings --during which I've actually bowled -- that much sweeter (even if my score went down this year).
2. While my co-workers were, as usual, hugely supportive, it was also useful for me to vaguely emphasize one of the less obvious effects of my disability: Because the leg brace I wear has a large foot bed, I had to rent two different size bowling shoes. The bowling alley was very accommodating about that, whereas buying shoes is more complicated for me: Either I have to buy two pairs of the same shoe in two different sizes, or I have to buy one pair that's larger than my actual size and pad my right shoe (the route I've taken with the three pairs I've bought since getting the brace).
3. I certainly could have legitimately opted out of bowling altogether, but it was nice to see how it feels. What struck me more this year than previously was how much my muscle memory wanted to kick in, even though my brain still can't remember how to control the muscles. There's a lot of grace and rhythm in bowling, neither of which I have anymore. While the picture in my head told me to stride up to the line (better still, use Fred Flintstone's twinkletoes technique), holding the ball in two hands as if presenting Simba to the sky, and synchronize a smooth backswing and toss with my last step (thumb audibly popping out of the hole as my right foot elegantly crosses behind my left), the reality was a slow shuffle from the ball return to the line; a dead stop; a pause until the moment it felt right; and finally a chuck down the lane (no Fred Astaire-inspired leg cross). Are there actually places that let you take free practice throws? Because I was already through one game and too tired for a second by the time I realized I should have shuffled to about three feet from the line, stopped, then tried taking one or two long steps before throwing. Next time I'll have to try that. Maybe I'll break 100.

So in 2015 I will continue stepping outside my comfort zone and trying new things. 2014 was a good test of that physically, especially with my recumbent tricycle. For Christmas, I got snowshoes, which I'll actually use if we ever have snow and reasonable temperatures at the same time. I/we also received a sleeping bag, tent, and camping cot for Christmas. Very subtle, Jamie. Nothing says family bonding better than spending time together in an uncomfortable, confined space. No, I've never really gone in for camping. My most memorable experience was the fall of 1993, sleeping in the shadow of Mt. McKinley, where I had a dream that spanned two years and a war. Obviously, it was one of those dreams that  lingers and continues to feel real long after waking. They say Denali has its own weather system, and it was working overtime on me that night.

My other You Never Know #3 for me this year will focus on friendships. I've already reconnected virtually with a couple people I knew Back When (1990ish) in England. I'm forging new friendships at work and in my support group. I also just returned from a re-bonding weekend with my Best Man, who is about to have another baby. And if there's ever a You Never Know, it's The Second Child. The First is a ruse to make you believe you know what you're doing as a parent. The second is a heavy reminder that you haven't got a clue.

"You Never Know" also means embracing unpredictable consequences. Who thought the same Industrial Revolution that mangled my hand would lead to Global Warming? Maybe that's a bad example, since the reaction to that discovery should be one of remedy, not acceptance. Nevertheless, I won't be surprised in twenty years when we learn solar panels are extinguishing the Sun.

Growing up in NJ, I couldn't have predicted  I'd end up in Maine. I remember writing a college application essay as if it were Page 84 of my autobiography. Pretty sure it said nothing about Maine, strokes, or Knowledge Management. I'm sure it would be hilarious to read now, if I only had a 3.5" floppy drive. And my 1987 disk.

We shall see where the time takes me. And maybe I'll lose some weight in the process.