My Life as a Semicolon ; ): Using all of the Buffalo

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?

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

1 comment :

Anonymous11:05 AM, November 13, 2013
Have you considered becoming a member of Maine Writers and Publishers Alliance? They might be a good resource for agents. Good luck!

--Amy
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My Life as a Semicolon ; )

Sunday, November 10, 2013

Using all of the Buffalo

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Totally Achievable Bucket List (post-surgery edition)

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.