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).

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):

9/29/10

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.

9/30/10

Setback

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...

9/30/10

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.

10/1/10

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.

10/3/10

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.)

10/3/10

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 50^th 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.

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:
• Dunkin' Donuts' sausage pancake bites (Jamie smuggled them to me in the rehab)
• Friendly's Grilled Cheese Burger Melt
• Baked Mac and Cheese pizza
• Snakebite  (it's like drinking a lava lamp, in a good way)

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).

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?

• My blog (45,000 hits and counting) and proposed memoir, begun as a way to process a frightening medical diagnosis  and prepare for the unknown -- a place which morphed  into a communication mechanism about my recovery, as well as some of the finer points of brain surgery, strokes, and extended hospitalization.
• An apt metaphor for the last three years of my life: a punctuation mark no one quite knows how to use properly; more than a comma pause, not quite a period stop; a sigh of contemplation, an eye roll of reflection.
• A vague nickname for my aneurysm.
• A medical drama (mostly narrated by my wife).
• My lifeline to a community of concerned friends and family
• A love story.
• A parenting story
• A comedy.
• An existential crisis/ free psychotherapy.
• What I’ve been told is an inspirational journey
• A constant reminder of how fortunate I’ve been in the face of miserable circumstances.

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.

Sincerely,

Ken Shapiro

kshapiro@maine.rr.com

@semicolonblow on Twitter

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.