Sunday, December 08, 2013


Spoiler alert: I've got some choice words for Santa.

Yesterday morning, we awoke to a dusting of snow. Joyfully gazing out the window, Wyatt said, "It looks so Christmasy! I wonder why."

I almost said, " Santa probably prefers to land his sleigh on snow," but I stopped myself. As age-appropriate as that comment would have been, I'm uncomfortable with the lie buried in it. Do I lack whimsy? Was that how I was raised?

As a Jewish child (emphasis on the ish), I celebrated Christmas without the Christ (or the mas for that matter), just because opening presents on Christmas morning was a nice family tradition. Speaking post childhood to my goyum friends about the trauma of discovering Santa's a myth, I realize I never held that belief. As a Jew, I can't say I ever felt left out around Christmas, perhaps because I was surrounded by plenty of other Jersey Jews, perhaps because Hanukkah filled the void. That said, for all I knew, Hanukkah was a celebration of Han Solo (or, as some of My People spell it, Chan Solo.) Yes, we lit the candles every year, even after setting the macrame plant hanger on fire (the 70s was a particularly flammable decade). But, gradually, over the course of my childhood, Hanukkah gift giving devolved from a few presents on the eight nights; to money during the eight nights; to one, featured present on Christmas morning (wrapped in distinguishing menorah or dreidel paper). Thanks, Mom and Dad for the Polaroid One Step and 8-track player. That's another thing I appreciate about Hanukkah gift giving -- I knew exactly where my gifts were coming from. While I appreciate that Wyatt embraces his half-Jewyism like it's a super power, recounting to him my own checkered history with the December holiday season left a bad taste in my mouth. Without explicitly saying my parents footed the bill, I also didn't want to highlight the reindeer in the room and say Santa doesn't visit Jews.

And it just keeps getting harder. Now there is the ingeniously insidious Elf on the Shelf . I appreciate the fact that our elf (Artie) fills in the plot hole of Santa's omnipotence by reporting back to the North Pole every day on behavior and wish lists, but that doesn't change the fact that we're harboring a snitch for some Nordic fart who enjoys emotionally blackmailing children in exchange for toys. Never mind that the kids can't touch the elf, lest they rob him of his "Christmas Magic" or that the damn elf relies on enabling parents to remember to move him each night when he's "at the North Pole". While I'm happy to play along for the look on my kids' faces when Artie lands himself in an especially interesting place or position, it can be difficult to keep up the charade.

The brother of a friend has come up with a Hanukkah alternative to the Elf, which I especially appreciate because it seems designed to pit siblings against one another as they alternate hiding and finding the Maccabee (and thereby take the pressure off parents) and keeps the miracles to a minimum.

Yes, I'm a stick in the mud. Over the course of his life, Wyatt has already believed he's a wizard and a ninja (thanks, Harry Potter and Ninjago, respectively). Over the course of my life, my richest fantasy has probably been believing that Candle in the Wind is really about how I could have saved Marilyn Monroe with kindness and respect (never mind that she died eight years before I was born).

Is this where growing up a Credit-Where-Credit's-Due Jew and not discovering Gabrielle Garcia Marquez until later in life has taken it's toll on me?

As much as I see the human brain as an unknowable mystery (as somewhat magical); as much as there is an inkling of hope that if neurons can fire at light speed could also mean they can miraculously heal as quickly, the sceptic in me won't allow a true belief in such a gift (even if it could fit in the sleigh). Ho, ho, hum.

Thursday, November 28, 2013

Setting the Right Tone

I wake up most days shaking. Not because I'm cold or scared (though I often am), but because of tone. "Tone?" you say. Yes, "tone." Not a sound, not a color, but a muscle.

The first time I heard "tone" used this way was during my check-in evaluation at the rehab (October 2010). The OT, feeling my upper arm and shoulder, said, "Hmmm, you have a lot of tone." I think I said something like, "Oh, really?"; but I was thinking, "Thanks for noticing; I have been working out."

So where I previously had understood muscle tone to be something you strive to achieve, I was about to enter a world where tone was wholly different. Most tangibly, for me, this has translated into tightness in my left extremities (fingers and toes).

The tone has also reared its head as Clonus, where -- especially in the morning, my brain misinterprets something as simple as a yawn into a series of involuntary stretches and convulsions.  It's nice to see the fingers on my left hand extend (something I can't do intentionally), but it's also frustrating how something innocuous -- like rubbing an itchy eye -- will start my left arm vibrating.

I've been going to "Tone Clinic" at the rehab for awhile to manage my flexibility.Which brings me to today's medical update and the reason I did not flail quite as much this morning: My physiatrist  had been suggesting Botox injections for my foot and ankle, but my insurance reflexively rejected the request for that expensive prescription (apparently not buying my doctor's therapeutically-relevant argument and instead choosing to believe I had some sort of narcissistic desire for younger-looking feet). Fortunately, there was an alternative in stock. I had it done yesterday afternoon.

I wasn't terribly excited about getting an injection in my leg, but it was quick (maybe 20 minutes) and relatively painless. The strangest part was how the electrode helping my doctor find the nerve endings (a neurological stud finder) made the muscles in my calf pulse.

It's only been a day, and I do feel a little more flexible in my foot but not more movement in my ankle and toes (which is the goal). Interestingly, when I try to flex my ankle, my left arm shakes.

So on  this Thanksgiving Day, I'm thankful for being comfortable with where I'm at (acceptance isn't the same as surrender) and that there are still some new things to try. If the injections help my foot, we could move on to my hand. My doctor is also taking a class in this other type of treatment.

By the way, the video of my blog presentation is now available (I'm at around 34 minutes).

Monday, November 25, 2013

While I Was Sleeping

A point of fascination for me over the past three years has been how much of my experience hasn't been mine alone. Nothing happens in a vacuum. As much as I've tried to reconcile my own memory of events from September 29, 2010, through early October 2010, it's helpful, upsetting, surreal, and often validating to hear others' accounts.

For eyewitnesses, I have Jamie's blog entries, starting here and running into October 2010. And I have e-mails my mother sent out to a distribution list of friends and family (note the change in font to go with the change in voice):

Out of Surgery
Ken is resting comfortably in the Neurosciences Intensive Care Unit and as Dr Ogilvy, his surgeon, said, we're all cautiously optimistic.  It was tricky surgery and we were concerned about some weakness on his left side initially afterward -- but that has improved dramatically and the doctor is very pleased about that.  Ken spoke to us, squeezed our hands, and passed additional neurological exams for the doctor -- all very exciting for us. So far, so good.

We saw Ken this morning and he had had a restful night after the surgery, spoke to us and seemed okay, but suddenly he developed a weakness on his left side.  Bottom line -- he's back in the OR now because there's a bleed that developed.  We're glad he's here at MGH and in the hands of a wonderful doctor (who has been wonderful to us as well), and are hoping that this is a temporary setback, but we just don't know...

Out of Surgery Again
This time Ken was in the OR almost as long as the first time.  Luckily they found that the bleeding was located between his skull and the brain -- not in his brain.  They were able to stop it and then moved on to addressing the swelling that they think contributed to the weakness he showed earlier.  What they've done is to remove a section of skull temporarily to relieve the pressure.  Believe it or not, this is a fairly common procedure.  So now he's back in the ICU sleeping.  He's on medication to keep him asleep for awhile; we're not sure for how many days.  The surgeon said they'll be monitoring him closely for signs of a stroke.  He'll remain in the ICU for a much longer time than we had anticipated. His vital signs are all strong and we're still grateful that he's in such good hands. Thanks for all your prayers and good wishes.  They're a great comfort to us.

Stable After Another Setback
It's been a roller coaster ride.  Once Ken was back in the ICU after the second surgery yesterday, the MD head of the unit told us Ken had suffered a small heart attack and had no movement on the left side. So we huddled together in despair for several hours.  Then we visited him one more time and got a thumb's up from the resident who was examining him.  In fact, the doctor asked Ken to give us a thumbs' up, which he did -- such a relief.  The doctor explained that the heart attack was mild and not uncommon after brain surgery and that he felt Ken was now showing some progress. 

Today he was stable.  He's sedated most of the time, but they stop the sedation every few hours to check his condition and he continues to squeeze our hands, give us a thumb's up and wiggle his toes when asked -- still only with his right side, unfortunately, but we're hoping that will change.  There was some damage to his heart, but it's pumping strongly and the cardiologist is reassuring.

It was such a help having Lisa and Jeff with us during these trying days and they're ready to head back up if we need them, but at this point their families need them more so they drove home today.  Ken's good friend Jamie (we call him Jamie Boy to avoid confusion with Jamie our daughter-in-law), who lives in Boston, has also been with us much of the time and has been wonderful company. So for now we're camping out each day at the ICU, hoping for more thumb's up moments.

Still Stable
Still stable!  They've cautioned us that Ken might have had a stroke, but the doctors aren't actually sure, though they clearly suspect it.  The edema is clouding up the images, and a stroke creates even more edema -- so if he had one, they have no way of telling how severe it was.  The good news is that his heart is doing well and the cardiologist is very pleased with his progress.  All the doctors are encouraged by his response to commands and the brisk and immediate way he moves his right side when they ask him to.  He's a fighter!

Jamie is on her way home to the boys and to give her mother a much needed break. It will be a good change for Jamie, too, though of course she was very torn about leaving Ken.  She'll return on Tuesday.  We'll be at his side as much as they allow (they kick us out every 2 hours so they can work with him.)

Today’s Progress

Late in the day was encouraging.  They removed Ken's breathing tube, substituting an oxygen mask for now.  What a relief it must be for him and it was wonderful for us to see him have the freedom for some satisfying, big yawns.  And when we left him this evening, the nurse asked him to wave goodbye to us -- which he did, with his right hand.  Otherwise, everything is stable.  We spent much of the day at his bedside -- reading and talking to him and holding his hands. We know he missed Jamie being there, but it was wonderful that she could be home with the boys to reassure them and snuggle them with love.

While I was on some level aware of and living through those traumatic events, sometimes it's entertaining for me to hear from concerned parties not so entrenched in the drama and actually living their own lives (imagine that -- life goes on). I just tried finding The New York Times or Boston Globe front pages from that day, but the best I could do was the Cleveland Plain Dealer (and Bon Jovi still hasn't been inducted into the Rock and Roll Hall of Fame!). For years, my friend Laura has been regaling me with her story of where she was when I was having my head cut open. So I've asked her to put that chronicle in writing (note the new font again):

Have you noticed that it’s been impossible to turn on the television this past week without being confronted with the question, “Where were you when…?”

Of course, people are talking about the 50th anniversary of the Kennedy assassination, but it is always interesting to ask that question and discover how different people experienced a shared event: 
  •          I wasn’t alive during the Kennedy assassination, but I can tell you I was heading into class at Westbrook High School when Chrissy Martin grabbed me and told me that the Challenger space shuttle blew up.
  •          I was at my desk at work that bright, clear Tuesday morning when my mom called to say a plane had flown into the World Trade Center.
  •          And I was standing on a boulder in a field in Central Texas when I found out my friend Ken had had a stroke.

But perhaps I’m getting ahead of myself….

For a while now, Ken has mentioned his interest in hosting a series of blog posts entitled, “Where were you when Ken had his stroke?”  Since his focus was on healing at the time, he was pretty unaware of what was going on around him.  His wife, Jamie, and friends have painted a general picture for him, and he can go back read the blog articles Jamie wrote during the time which keep us all informed, but I can understand the appeal of first-hand accounts.

I was incredibly honored when Ken asked me to write a blog entry based on my experience and perspective of his ordeal.

I’d like to think he asked me because he likes my writing style and thought I could do justice to such an important and personal subject.  Of course, he could have asked me because I was one of his only co-workers that would answer differently than, “I was at work.”

In my heart, though, I know that Ken asked me to tell my story because the visual of me standing atop a boulder, surrounded by cows and holding up my phone like the Statue of Liberty’s torch as I tried to get a signal, makes him laugh. 

Let me provide some background.

If you are reading Ken’s blog, you probably already know (and I’m going to simplify the facts, Ken) that three years ago he was diagnosed with a brain aneurysm that required surgery.  There was very little we knew about the prognosis of the surgery at that time.  Ken could have come out with no ill effects, major cognitive issues, or somewhere in between.  I can’t even imagine how scary a time it was for Ken and his family, because it was no picnic just being within his circle of friends.  Just prior to his surgery, Ken hosted a few happy hours at the Sea Dog to spend time with friends, not knowing what life would be like after the surgery.  We tried, but it was difficult to keep the “happy” in the hour.

Cut to a few days later.  I was on a long-planned vacation that included stops in Las Vegas, San Antonio, Austin and a horse ranch in Bandera, Texas.  The Bandera day was the day of Ken’s surgery.  I had prepped our mutual friends with my phone number and the promise to keep me informed. 

And they tried.

But, do you remember the part of the movie, Ice Castles when Robbie Benson turns to blind skater Lynn-Holly Johnson and says, “We fuhgottabout the flowers.”?  (If you don’t, go out and rent Ice Castles immediately.  I’ll wait.)

Anyway, we fuhgottabout the lack of cell service in Texas.

While in town – which consisted of two bars, a liquor store and a general store that sold hats and boots - I got one text from my friends telling me that Ken had made it through surgery and was doing well.  Phew.  My friend and I headed back to the ranch where we were staying and went on a long and beautiful horseback ride. 

It was when I returned to the bunkhouse that my phone lit up with a few missed calls and texts consisting of messages no more informative than a simple “Call me.”  Well, these were the days before my smartphone, iPad, hotspots or free WiFi.  It was me, a few desperate-sounding messages, a flip phone and no signal.

Since I had received a signal in the room at one time, I figured I just needed to hold the phone at the right angle.  So I stood on the kitchen table in the middle of the room.  After many contortions that could have doubled as my Cirque-de-Soleil audition, I was finally able to send a text letting friends know that I couldn’t make or receive calls and begging for more details. 

After a moment, I got a text back with a link to Jamie’s blog post detailing Ken’s condition.  That would have been helpful if I had any way to access the link on my pathetic old-school phone.  Also at that point, the moon probably orbited to just the right spot that I lost any signal in the room whatsoever.

Which is when I marched outside, pushed my way through the cows milling about, found a big rock and climbed it.  It took a while, but I finally pieced together the story that Ken had had a stroke while recovering from the initial surgery, but was still fighting the good fight. I knew as much as anyone else at that point.

The next day, I pulled into the first Starbucks I could find and finally accessed Jamie’s full account of the day’s events.

So now I challenge you to answer the question, “Where were you when Ken had his stroke?”

This is Ken again. Yes, please share your own stories in Comments below, if you're so inclined.

Sunday, November 17, 2013

Culinary Solace

For the past three years, I have not been in a state of denial. By that I mean that I have been fairly permissive in allowing myself to follow whims of appetite. This may explain my weight gain, seeing as for the forty years prior, I was truly in denial that my inherited skinny metabolism could carry me through relative inactivity. Now that I've been forced into a lethargic state, I've followed some simple, though hardly healthy, rules that allow me a bit of Hedonistic pleasure  at the expense of my waistline:

  • Rice Krispies Treats are a great way to push through afternoon doldrums.
  • If invited to eat something tempura-fried , do so; it would be impolite not to accept. So far, I've only experienced tempura-fried ginger ice cream and Whoopie Pie, but there's got to be more out there for the having.
  • If you haven't had it in awhile but wonder if it still tastes the same, eat it. Thus I bought a box of Twinkies when they returned to super market shelves.
  • If it sounds enticing, give it a try, such as:
Okay, as much as all of that's true and important to me, it doesn't justify a post. But as long as I'm vaguely on the subject of denial, I can talk about the appointment with my medical neurologist this week. I've been seeing him ever since my deja vus of Elvis Costello and Star Trek: The Next Generation were diagnosed as seizures, though now only for annual check-ups and in case of new episodes. He's a very nice man who always wears bow ties and takes a balanced approach to my care. While congratulating me now on my recovery in terms of driving and return-to-work, he also demonstrated to me and a med student how stroke recovery in muscular control is faster for extension than flexion (true for my left leg but not my left arm or hand); interesting, but discouraging (Could I have worked harder at my therapies? Maybe. Did I have the desire or energy to work harder? No. Would it have made any difference? Nobody knows, and it doesn't matter now.). He was also not in favor of my seeking a functional MRI, since it would only show a lack of activity in the dead areas of my brain. That reminds me of a very early, prescient visit with him: we were reviewing a CT of my pre-surgery aneurysm; and while he was in favor of an operation to remove it, he did remark that it would be a shame if I had a stroke and "ruined a perfectly good brain". So why do I continue to see him? At the time, I appreciated and agreed wholeheartedly with the sentiment. Now I go primarily for the bow ties. And because I'm in denial about my brain. I don't think it's ruined. I want the fMRI -- assuming insurance would cover it -- because I want to see how my brain is healing/remapping. If I'm only using 10% of my  half-brain (=5%) , how am I able to get anything done? And if I technically have no right brain anymore, why does this test show that I use both sides evenly? I'd say it's because the brain is a mystery, and it may take someone with half a mind to figure it out. That and some Brain Food (preferably tempura-fried).

Sunday, November 10, 2013

Using all of the Buffalo

I know! Two posts in two days! This one was pretty easy, because I'm repurposing. 

As I try to figure out what to do with my second or new lease on life, I've been emailing a lot of queries to literary agents. Actually, I've been sending one query to many different agents. In the spirit of not letting anything I write go to waste -- and despite the fact that most if not all of you are not in the business of publishing -- I'd like to share that letter here. So far, I've had some very nice, personalized rejections, which is actually somewhat encouraging. One of the sticking points may in fact be the venue in which my "work" (pretentious word for stuff I've written) originated. Admittedly, translating this from digital to paper is not a challenge for the faint of heart. I'm reminded of a writing class in which I unsuccessfully tried to enroll in college (it was full) -- on Hypertext writing. At the time (early 1990s), it was based in a Mac program called Hypercard. Because it was so self-contained (i.e. no internet), the intention was to simply allow for non-linear storytelling (Choose Your Own Adventure-style). For me, here, the web has allowed hypertext to accommodate my scattershot train of thought and tendency toward referencia obscura.That said, I have no proof that anyone clicks on the links I include here (to think of all the effort I put in for you people). And even with the advent of e-readers and smart devices, it seems paper refuses to go the way of the dinosaur. Voracious readers say they would miss the feel or smell of books (why has no one created a Kindle add-on that emits a bookish odor? This is as close as I've found); but I wonder if it's also that in this era of Go-go gadget multi-tasking, people just enjoy the stillness of being transported by a medium with no ulterior motives.

Without further ado, here's my sales pitch. Speaking of which, don't forget my recumbent tricycle campaign at the right (thanks to everyone who's donated and to my parents for the recumbent stationary bike so I can train this winter):

Dear [],

For a good part of summer 2010, I was placing bets (with myself) on which would be capped first -- the BP Deepwater Horizon oil spill or the “giant” cerebral aneurysm (real medical term) in my right temporal lobe. BP won, but just barely. And the ongoing clean-up work may be comparable.

In January of 2011, when Gabby Giffords was shot in the head and began her long recovery -- including cranioplasty with a plastic skull flap -- I was returning home from inpatient rehabilitation for a stroke and cranioplasty with a plastic skull flap. Such is My Life as a Semicolon.

What is My Life as a Semicolon?
I -- Ken Shapiro -- was born and raised in a nurturing and sheltered home in suburban New Jersey (i.e. bad things only happened to “other people”); graduated from Brown University with a degree in Media/Culture (whatever that means);  am a husband, father of two young boys, and a Knowledge Manager (whatever that means) for a large disability insurance company in Maine. At the age of 40, I experienced the most traumatic and meaningful events of my life – events which on some level will always haunt and define me and which I also strive to grow beyond – the brain surgery and stroke which have left me weak on my left side but strong in my resolve to use my experience to help others. As part of this effort to grow beyond my circumstances, I have reached out through my blog and was asked to speak about the value of blogging as a brain injury recovery tool at a Maine Medical Center Neuroscience Institute conference in late October 2013.                                                                                                           
The blog links included above provide writing samples as well as a chronology and structure to take my work from online to printed form. Weaving my story through a span of time before, during and after critical events -- interspersed with the concerned voices of my wife, friends, and relatives through blog comments -- I believe creates a compelling narrative. While my situation is somewhat unique, many of the lessons are universal to anyone personally or vicariously suffering a serious health crisis.

Thank you for taking the time to consider my proposal.


Ken Shapiro
@semicolonblow on Twitter

Saturday, November 09, 2013

Onion Bloom

I awoke early this morning (damn Daylight Standard Time) with the following Tweetable thought (though I haven't counted characters):

"There are two kinds of people in the world -- those waiting in line, trying to decide what they want and those waiting in line to pick up their orders." There are any number of things wrong with that construct, not least of all that I absolutely abhor "there are two kinds of people" statements (while my job often involves cataloging information, when people start putting themselves and others into boxes --whether Zodiac or Myers-Briggs -- they dangerously start excusing or justifying choices as innate behavior) It also completely ignores the third kind of people in the scene -- those making the sandwiches (yes, in my mind, this little play is performed in a deli). So much for my drooling subconscious mind. That reminds me, Jamie and I went out for lunch this week, and I had a really nice Rachel (turkey on rye toast with cheese, coleslaw, and Thousand Island dressing).

Our topic at support group this week was surviving the holidays (insert shameless plug for 50/50 raffle here). As usual, that really means finding strategies to survive the holidays. Of course, it's a joyous time of thanks, family, friends, and food. But it also often devolves into a frenzy of trying to please everyone.

Our conversation also wandered (they often wander) into the territory of conscientiously choosing how we spend our time and with whom. One woman's awesome strategy is to take advantage of the right-side neglect caused by her car accident and stroke by sitting to the left of people she doesn't particularly care to engage with.

While I can't shut people out (my left-side neglect cleared relatively early on), I have been fairly selective of late as to where I expend my limited social energy. I spoke about this in great detail last night with one of my new best friends and life coach (I'll call her Coach, since she was looking for a nickname anyway). Have I ever told you my theory that John Fogerty's "Centerfield" is actually about him wanting to be middle class again (Is the lyric, "Put me in, Coach" or, "Put me in Coach"[as in, flying Coach]?)?

Coach revels in peeling people's onions, and I don't think it's because she masochistically craves the tears. She could easily peel her own onion for that. She's just a sandwich maker at heart.

Back in the deli, I'm still very much making up my mind and simultaneously waiting for my order (which I'm preparing for myself). I have to move past Ken 1.0. Me 2.0 is still very much a work in progress and at times too weighed down by my previous incarnation (who may or may not be a figment of my imagination -- unless I'm a figment of his). Coach and I whittled away at my psyche until we got to the gooey, somewhat-senseless core of survivor's guilt, which in my case translates into the sense (sometimes) that what's happened to me has hurt my friends and family similarly to the consequences of actually dying on the operating table. No, that's not the same as saying I'm as useless alive as dead. I'm saying that once in awhile it feels that way and that damage has been done. Not irreparable damage, mind you, because I'm very much alive. And intellectually, I know that I am not at fault. But guilt is not intellectual.

And I'm ready for something tasty now. Hold the onions.

Thursday, October 31, 2013

Happy Hallomeeeee

I'm sitting in the house, waiting to scare children. I'm on candy duty while Jamie (unknown costume), Wyatt (the Grim Reaper), and Gus (zombie) are out Trick or Treating. Truth is, as many Frankenstein and undead jokes I lob at myself (are zombies really stroke sufferers -- thus the sluggish pace and appetite for brains?), I'm apparently not that scary looking. Despite the head scars and perma-sneer, I'm still just a slight, 5' 7" Jew. Not that intimidating. The most I get from kids is a sideways glance at my cane and a look of, "What's up with him?" And at work, I've become the "Hey, how's it goin'?" guy. Not scary, just a vague curiosity. Actually, I think we're going to be lucky to get any sugar seekers tonight; the rain's coming down pretty hard. I'll give out extra Snickers to anyone braving the weather.

The scariest thing about this Halloween is that three years ago today, I was lying in a New England Rehab bed with a divot in my head and underwear on the outside of my pants:

Where did my legs go?

I've also, frighteningly, been contemplating The Ghost of Christ Complex Past. I spend a fair amount of time perusing my blog stats -- 43,000 hits and counting! Despite the fact that an inordinate amount of my traffic seems to come from Ukrainian spam bots, I often take note of my most-visited entries and try to figure out if they're being looked at by human or machine. For whatever reason, this week's winner was my Famous last words. It's powerful for me to read now, knowing it was the last time I typed with two hands, feeling somewhat sorry for the poor slob who didn't quite know what he was in for, and wondering if I've been able to live up to that specter's ambitiously-courageous wishes.

Speaking of my own haunting, I'm reminded of July 2010, a day or two after my cerebral angiogram, when we took a family outing to Tassel Top beach. After having a catheter threaded from my groin to my neck, I was feeling somewhat hobbled (little did I know what hobbled was) and generally distraught about what the future held. I remember taking a short stroll by myself, on a boardwalk through the woods, peering through a spinney of thin trees at Jamie and the boys on the beach; and imagining that I was doing so from The Great Beyond. It was very peaceful and somewhat comforting (thinking I'd be able to watch over them), which is why I remember it still. The brain stores memories in odd places.

Okay, I've handed out a few treats to a few soggy souls and satisfied my morbid desire to get this down.

Sunday, October 27, 2013

In Blog I Still Trust

This past Tuesday I had the honor and privilege of attending and speaking at the 4th Annual Conference on Defining Moments in Brain Injury. Whenever I am entrenched in this community of which I am an involuntary member, I'm struck by how broad a spectrum Traumatic Brain Injury (TBI) covers. Not that it's a competition, but I believe the term is somewhat skewed toward those who have suffered physical trauma due to an accident and/or impact. Although my injury has been just as physically and emotionally traumatizing (after all, my brain attacked me without provocation), I'm thankful whenever I hear stories like that of the keynote speaker's bicycle accident and subsequent PTSD, that I had the luxury of sleeping through my event.

While I hope to soon share a video of my presentation, I thought I would at least summarize it now in the very medium it covers (how meta).

At around 4 o'clock in the afternoon (unfortunately late for a notoriously-logy audience of brain injury survivors), I was one of two speakers on a panel entitled, Through the Smog with a Dog and a Blog (never mind that where I come from, dawg and blog don't rhyme). The general idea was to present different strategies for brain injury recovery. My co-panelist, Rorie, has trained her service dog, Ziva, to provide stability and retrieval assistance (among other things) after sustaining a brain injury from an icy slip and fall in her driveway. And I bet you thought I was the dog. I'm afraid my contribution was the obvious one. After trying to rally the crowd by regaling them with my college streaking story (relevant since the previous workshop covered humor as a resiliency builder), I started with a mind map of some of the problems/challenges posed by health crises at large and brain injuries in specific:

  • The need to communicate news in an efficient way that doesn't tax patients or family members.
  • The need to seek tangible support from friends and family.
  • The need to feel connected to yourself and others (that's especially true for those with brain injuries, since the condition can be a literal disconnection of neural pathways).
This is the mind map of those basic points:

My solutions, of course, are encapsulated in this blog, which has been the primary source of information about my experience from discovery through catastrophe and recovery (communicated by email or the web, whatever your personal preference and without having to manage who told who what when. It has also been a place to ask for help (decorating, raking, rides, just about anything). We have been so blessed to have so many people who want to help, but it can actually be stressful coming up with tangible requests. And the blog was a great way to manage that. Most important for me -- post-stroke -- the blog was a place for me to find my voice again, figuratively and literally, to re-discover myself, and confirm that I'm still me. Also, to help me be heard when my physical voice cannot carry. My first new-brain blog post (written two weeks after my stroke, one day after arriving at New England Rehab, and one handed on my iPod Touch) is all about reclaiming my rightful place and the importance of the blog in getting me that far in my early recovery. Thankfully, it was also a place for Jamie to connect and vent and plead when she needed to. The other important, unanticipated benefit of the blog has been the opportunity to shed light on what is often an invisible injury (much as I like to show off my scars and brace). I've done that here through my brain scans and by describing the work I've had to do.

While this blog has captured some of the greatest horrors and tragedies of my life, it also embodies some of my greatest triumphs and accomplishments (not least of all an opportunity to share my experiences and make some people laugh in a forum I'd never have had the opportunity to do so if it weren't for my brain cloud).

Sunday, October 13, 2013

Twelve Steps

Sorry, time for more self-indulgent philosophizing. For three years now, I've been walking around with a  "New England Rehabilitation Hospital of Portlandmessenger bag sashed across my chest. I don't know if anyone has interpreted that as being from a substance abuse rehab (not that there'd be anything wrong with that), but the possibility inspired me to review the 12 steps of addiction recovery and see how they apply to brain injury recovery (and life) Remember, it's an exhibition, not a competition:

  • Step 1We admitted we were powerless over our addiction - that our lives had become unmanageable 
I have definitely at times felt it was important to relinquish any sense of control over my circumstances. That's not the same as giving in or giving up but simply recognizing that a certain amount of acceptance is required for me to get on with my life. For me, I suppose Step 1 could end with, "we were powerless." I am not addicted to my stroke, but hopping a ride on the Victim parade float can be tempting at times.
  • Step 2 - We came to believe that a Power greater than ourselves could restore us to sanity 
I've struggled with this one, in that I've come to see my own resilience as a power greater than myself (no, I am not God; but there is something within me I was only able to access under the right -- admittedly unfortunate -- circumstances. The whole "sanity" piece is debatable. I'm long gone; no amount of sanding or coats of varnish are going to restore me.
  • Step 3 - We made a decision to turn our will and our lives over to the care of God as we understood God 
I suppose this one might go back to acceptance, which works well with my somewhat fatalistic nature. I don't feel I'm being cared for or watched over, and there's only so much I can do. I am open to the universe.
  • Step 4 - We made a searching and fearless moral inventory of ourselves 
What do you think? Isn't that pretty much all I've been doing for three years? I have definitely gone through phases of asking, "What did I do to deserve this?" The answer is nothing and that no one truly gets what they deserve, because no one deserves anything. Deserving is too close to entitlement, and I don't believe anyone is entitled to anything. Inalienable rights, my ass. There are things you can ask for. Once in awhile, there are things you can earn. Like Mick says, "You can't always get what you want..." And as my friend Tess tells her kids, "You get what you get, and you don't get upset!" Doesn't work, but words to live by nonetheless.
  • Step 5 - We admitted to God, to ourselves and to another human being the exact nature of our wrongs 
I've certainly had some heart-to-hearts with myself, friends, and Jamie, but I have a hard time identifying the nature of my wrongs in that I don't think any wrongdoing on my part played a role in my illness or that admitting them heals me, other than helping my brain reconnect with my "self", which is as close to my "soul" as I get. Are wrongs the same as regrets?They say you regret the things you didn't do more than the things you did, but I don't know that you can count romantic ideals as wrongs. From a Karmic perspective, I always thought restraint was rewarded. Is it possible that you lose points for not doing some things you wanted to (did I just blow your mind?)? But for all that's gone wrong for me, a ton has gone right. I attribute many of those blessings to what I call Social Karma. When it mattered, I made good choices and have been rewarded with strong relationships. Nothing mystical about that; it's basic socio-economics. (Shameless plug: If you're looking for some Instant Karma, I've added a fundraising page to my site, to assist with the purchase of a recumbent tricycle this spring.)
  • Step 6 - We were entirely ready to have God remove all these defects of character 
Too much God in here for a devout agnostic. Again, if I've discovered what I feel are true defects in my character, it would be up to me to resolve them, and I don't think I've found anything I would completely excise. I think our flaws make us as richly dynamic as our strengths. Particularly with my brain injury, it can sometimes be difficult to identify psychological, social, and emotional truths. I remember immediately after my stroke how people remarked on the "flat affect" in my voice. Given my already-bone-dry sense of humor, I wasn't as aware of it as others. I've continued to struggle with better expressing my emotions in a way that comes across as more than sarcastic. I'm a work in progress.
  • Step 7 - We humbly asked God to remove our shortcomings 
No, I have have not asked for the removal. I simply have to remain vigilant of some deficits (such as a lack of filter) and show restraint.
  • Step 8 - We made a list of all persons we had harmed, and became willing to make amends to them all 
I have approached some people from my past, not so much to make amends as to rebuild connections.
  • Step 9 - We made direct amends to such people wherever possible, except when to do so would injure them or others 
Didn't I just do that?
  • Step 10 - We continued to take personal inventory and when we were wrong promptly admitted
I'm all for The Examined Life, but I'm feeling like 8-Minute Abs would have sufficed here.
  • Step 11 - We sought through prayer and meditation to improve our conscious contact with God as we understood God, praying only for knowledge of God's will for us and the power to carry that out 
I can't go exactly there, though I have tried meditation and mindfulness exercises as a way of resting my brain and encourage neuroplasticity. And lord knows I'm trying to make the most of what I've got.

  • Step 12 - Having had a spiritual awakening as the result of these steps, we tried to carry this message to other addicts, and to practice these principles in all our affairs 

Does this feel like more of a list of steps to redemption than recovery? I'm sure it's helped a lot of people and will help many more, but my stock pot runneth over. Have I properly carried this message to you, my Followers?

Okay, should I get a Betty Ford Center messenger bag now? Honestly, I don't think I could hack overcoming addiction. Too much work.

Sunday, October 06, 2013

The Road to Recovery

I suppose it's a circle of life thing, but lately I've been saddened to realize that, generally, my goals – from a recovery perspective – have been simply to get back where I started. Early on, it was certainly easiest to set the bar based on the most obvious achievements:

  • walk
  • get home from the hospital
  • get back to work
  • drive
So in many ways it's a positive development that I realized recently how the road to recovery doesn't have to be a loop. Life certainly isn't a straight line either (I know I've taken some detours), and I'm starting to identify encouraging diversions that may not take me as the crow flies but which will make the trek more enjoyable.

I've never been what one would consider an outdoorsy person, though I did climb up a hill and come down a married man. I also wandered lonely the same countryside as Wordsworth, Coleridge, Byron, Keats, and Shelley. And while as a kid I wasn't much of a cyclist (pretty much throwing in the towel  when I hit the curb, landed on my chin, and had to sport a scab goatee for a few weeks in 7th grade), I recently had the opportunity at my brain injury support group to try out a recumbent tricycle, which proved a liberating and inspiring experience. It felt wonderful to be outside and exercising in a way that wasn't a struggle and didn't feel at all treacherous.

So I took to the web and found a local dealer who had a floor model I could rent for a week while considering a purchase. My trusty friend and bike aficionado, Marc, helped me pick it up this weekend; and, so far, I've had the unheard-of pleasure of taking rides down the road with Wyatt on his bike and me on my trike. It's given me a much better use for my old craniotomy helmet:

Of course, I'm already getting ahead of myself and looking into Adventure cycling trips. Maybe I'll even organize a charity ride as part of my book tour (still ahead of myself but at least a vision of progress, not circuitousness).

The metaphor's panning out well for the cards I had made for my upcoming speaking engagement at a brain injury conference:

Sunday, September 22, 2013

Released into the Wild

 We recently returned from a lovely vacation; and while I acknowledge that Vermont is no more wild than Maine, there is something almost primal about being stripped of responsibilities – as an employee, a parent, as an adult really, for a week or so. That was one of our primary reasons for choosing Smugglers' Notch
as our destination. Nestled in the heart of the Green Mountain State, the resort offers easy access to swimming, hiking, on-site restaurants, and a number of other self-contained activities (including day camp for the kids). Though hardly in the wilderness, our condo's neighborhood did provide it's own wildlife, by way of a mascot woodchuck who must own a time share. In response to the requisite question one asks of woodchucks, he promptly flipped me off and threw five or six sticks in my general direction (an answer of sorts).

As I said, For the kids our destination offered a week of day camp and easy access to three pools, each with its own unique brand of water slide. I find that one of the most satisfying things about being a father is the opportunity to observe my children in their natural habitat. If the goal of parenting  is to create productive members of society, it's enriching to see the same people who have no apparent capability to hear my voice go out and follow the instructions  of some college student on break and socialize with peers who have nothing in common with them except perhaps an interest in Minecraft, running around crazily, and screaming at the top of their lungs. Parallel to that, our little monsters seemed to do little or no damage to other people's psychopaths. Success!

By Day 2, Gus had cemented his place as celebrity gadabout. We were periodically identified as, "Gus' parents", and he spent most of an evening magic performance perched at the edge of the stage, until he was finally asked to volunteer. If only it were on YouTube, he'd be famous (at least that's Wyatt's measure of fame).

For Jamie, the Wild provided an opportunity to hike up a mountain at whatever pace she chose, without having to follow anyone else's schedule.

For my parents – who very generously invited us to join them on this excursion – the Wild  probably came from simply being exposed to our kids for this length of time and breaking from their usual retirement routine.

For me, whenever I'm placed in a new environment, there is a need to prepare, perform reconnaissance, and adjust to my surroundings. Most of the time, this is easy enough to do, since I've had good practice over the past  three years (three years!). Upon our initial arrival at the resort, we discovered that while our condo was on the ground floor, it was down a flight of stairs from the front entrance of the building and that those stairs only had a railing  on the left side (going down). This wasn't  a huge barrier but meant I had to back down the stairs while holding the railing with my right hand. It also provided the opportunity to explore a rear entrance through a sliding door and across our back patio and the "Village Common". That was often a more efficient way for me to come and go anyway.

Another perk of the resort was an on-site miniature golf course. Wyatt and I had a good round together; and while I have to putt one-handed and swap my cane for the club, I find it's a unique and satisfying challenge. This particular course  also provided interesting obstacles for me to maneuver around and over, having nothing to do with golf. Still, it was nice to feel able to participate.

For the most part there weren't any activities I couldn't do, except running and doing cannonballs into the pool. And I did often take golf cart shuttles to avoid long, slow walks (though that was one of the boys' favorite things to do).

On our last day, Gus did wander off briefly from our patio. Seeing Jamie running around, calling his name, I admittedly did let my sense of uselessness get the better of me (some would say as useless as any man) and didn't simply walk outside and pick up my visual scanning (Star Wars geeks?), at which point I would have found him sitting two decks down from our own.

This vacation also offered the first opportunity I've taken to hike in unknown territory since my stroke. One morning my parents, Jamie, and I headed out in search of the trail to a small waterfall. As is  often the case when embarking on such adventures, we never quite found the right trail or the waterfall. What we did find was a narrow, overgrown, at-times-muddy path to nowhere in particular. For me, that was bliss, just to say I didn't let unexpected barriers impede my progress. After all, it's the journey, not the destination, right?

Being out in the Wild also affords me the opportunity to be out in public, which I don't really do that often. My regular circle is relatively small and requires little explanation. At work – in part thanks to gossip and the piece I wrote for the company intranet – I think most people know my story and don't often question the cane, the head scars, or the leg brace. But in The Wild, I get an interesting mix of inquiries, I think often misled by the spectacle of my brace. I don't know what inspires people to say anything, though I like to think it's because I somehow embody the greatest curiosity humans have -- fear of the unknown path stretching before us:
  • A few weeks ago a very nice waiter at my local watering hole asked me how I hurt my leg. I did my usual,  "Well, actually, it's my brain, not my leg". I actually felt a little bad about that, imagining I was sending this twenty-something kid home that night into an existential YOLO spiral.
  • About a year ago, I had a guy come up to me in -- of all places -- Friendly's to ask about the scars on my head. He apparently had been in a car accident years earlier and suffered severe brain damage. I refer to him as The Collector, because I had the sense he's in the habit of approaching anyone he suspects of a brain injury.  Based on his reaction to my story, I also got the impression I might've been  his first aneurysm surgery. You never forget your first.
  • Sitting by the pool  in Vermont, a very nice guy came up and asked what happened to my leg. He explained – and not everyone bothers to explain their morbid curiosity – that his son had had knee surgery and had to wear a similar brace for a while. Again, I explained that my surgery was on my brain and that the brace is really an injury prevention measure taken against post stroke muscle atrophy. His response was a very kind, "I'm sorry you've had to go through that."
  • My favorite reaction to the sight of me (so far) was from a woman I passed on a path at the resort. Somewhat accusingly, she said, "What happened to you?" She reminded me of the voice in the elevator at the rehab  – pressing the button to go from the first floor to the ground floor, "she" offers a cautionary and fatalistic, "Going down." For,  "What happened to you?", I skipped the brain surgery and went straight for the gut with, "I had a stroke a few years ago." I think I usually mention the surgery first to avoid the potential stigma of a relatively young man having a stroke "for no reason" (is there a stigma?). I don't know what sort of reaction that statement is expected to generate, but hers was, "Well, you seem to be doing pretty well." I suppose I am, though as I close in on my three-year anniversary, I am at times at a loss regarding how little change or progress I'm seen in the last year or so. Most of the time, I'm comfortable in my own skin, with my new brain, but it's bittersweet comfort.
Speaking of self reflection, staying in a different living space granted me the opportunity to take standing showers (I never realize how much I miss the sensation of warm water streaming down my back until I do it), I also got to step in front of a full-length mirror and confirm that the 20 pounds the doctor's office says I've put on are in fact attached to my body. Poolside -- shielded by my brace and my UV-protection swimming shirt -- I'm not terribly self-conscious about the weight gain  but  pay more attention to checking my leisure wear (sweatpants, sweatshorts, or a bathing suit) for Camel Nose, aka Moose Knuckle.That's not something I have to worry about in my Civilized world of business casual khakis.

Perhaps inspired by new challenges surmounted during the trip, upon our return I took it upon myself to replace a headlight bulb in Jamie's car (as useful as any man?)I'm more than a little peeved that we subsequently and unexpectedly had to trade in that car and hardly received fair compensation for the one-handed effort that went into changing the bulb without having the hood come down on my head.

But my primary goal  for the vacation – successfully achieved, by the way -- was to relax and read a book by a good friend from college.

I don't what it says about me that I have two friends who write chick lit.

Actually, I know exactly what it says and is best answered by this card given to me by friends at work just prior to my departure for surgery, payback for all my fauxtos:

Pretty much, nothing has changed since third grade when I was a Kissing Bug Helper on the playground. Basically, my job was to chase down and hold the boys so the girls could kiss them. I guess you could say my modus operandi for getting through life has always been, "If you can't beat'em, join'em."

Sunday, August 11, 2013

Every Day is Father's Day

Yes, I'm lousy at writing on actual holidays, but I wanted to take some time to talk more about me and my sons. I've addressed some of our challenges in the past, but this year has been filled with finding ways to better engage and relate to each other as father and sons and as people.One of my greatest hopes is that they will not come through this experience as bitter human beings (much as I hope the same for myself).  Both before and after my stroke, I've struggled as a parent to curb anger and frustration and not be overly sensitive to noise and "nonsense". I find that second part especially difficult, since a child's mantra is often, "I don't know what I want, but give it to me now!" I think that sentiment is something everyone feels but which kids actually believe/expect adults can reasonably deliver. Not so.

We're all just doing the best we can. For parents, the best still amounts to a near-constant sense of inadequacy.

Wyatt, 8, assures me that "I'm the best dada ever." I don't do well with absolutes and feel unworthy of such unconditional love, but I'm glad he doesn't seem to feel cheated. Once this declaration was followed by a conversation that led to the heady determination that he's a quarter me, a quarter Jamie, and half himself (he made sure the percentages came out to 100). Wyatt and I speak frankly about my condition, and he's told me it's okay that I'm "not normal". As much as hearing that warms my heart, I still wish for more normality for him, and we share that at times through play. As I've improved physically, we've been able to kick a soccer ball around and shoot baskets in the driveway. Wyatt and I even had a catch before one of his little league games (me, gloveless and one handed). How Apple Pie is that?

I don't think Gus, 6,  can understand as much about what's happened to me and doesn't even entirely remember me from, "before I was slow" (as he puts it). But he appreciates me for who I am and has been especially demonstrative with me lately (something I'm told I've always struggled to do). Admittedly, I don't always share my most positive emotions easily, though I like to think I do so when I genuinely feel them; just not habitually or perfunctorily.

For some reason, recently, Gus has expressed concerns about what other people will think when they see I don't use my left arm. For quite an oddball, that's about as close as he comes to embarrassment. Though last weekend at the movies, he did (probably unnecessarily) jump to my defense when a man commented on my leg brace and cane, explaining, " my dad's brain doesn't remember how to move that side". I both hate and am glad he has some manner of understanding. He's genuinely sorry for me and periodically says things like, "When you can run again..." I'm not yet at when; still if.

Our best connections have been built through outings like that one, where my sons get to see me as a true parent, as well as through activities we can share:

I've taught them games of my childhood:

  • Coin Hockey (known by many names, but in my school lunchroom it was Nickel Hockey; [to be read in your best Old Man voice] because when I was a kid, milk cost 15 cents, both ways, in the snow). I'm quite proud that Wyatt was able to introduce this pastime to his classmates, even if his cafeteria works on account and they had to commandeer the math class change container in order to play.
  • Yahtzee (which I also play online as Dice With Buddies) -- it's the simple pleasures that count.
  • Nok Hockey (which my brother and I used to play for hours on end)
  • Paper football (another lunchroom classic)
  • Rock 'em' Sock 'em' Robots (which they gleefully bought with old Target gift cards specifically with me in mind. And, I have to admit, physically abusing my children through the guise of plastic robots is strangely satisfying).

We watch plenty of movies together, which is especially nice when I can share flicks of my youth (like Star Wars). Gus, tends to talk too much and ask too many questions ("Why is she...?). My patented answer: "I don't know... Maybe they made a movie about it." (If nothing else, I will teach my children sarcasm.)

Otherwise, when they're willing to hear the sound of my voice, it's often as technical support for various screens and enabler of games on said devices. Was there ever anything I talked about as incessantly as Wyatt talks about Minecraft?

The kids have also taken some interest in my blog, seeing as it's an important but mysterious part of my life. I'll probably read this entry to them, just as I have read some of Wyatt's baby blog, Please don't let me break him, and Gus'  preemie blog.

Looking back on the past three years, in many ways it would have been easier to have gone through it alone, not dragging anyone into the morass with me, but I also would never have made it without the support I've had.

Apropos of that, here is The Sound of One  Hand Clapping , featuring me and Gus (Wyatt calls it the more-technically-accurate Sound of Three Hands Clapping):