Sunday, June 30, 2013

Quiet Desperation

Despite the somewhat downbeat title, this entry is actually mostly good news – in a world where "no news is good news".

I went to see my neurosurgeon in Boston a couple of weeks ago, had a new CT scan done, and you know how I love sharing pictures of my brain. So, below, I give you those thousands of words, including the radiologist's report for anyone who cares to dig in to the medical jargon. My doctor's general interpretation was that the scans showed no new damage or re-development of the aneurysm, so that's all good. And that the clips holding the neck of what remains of my aneurysm  are still intact (also good). In fact, he said he wouldn't request another of these scans for another two to 2-1/2 years. I have pressed him a bit on the possibility of getting a functional MRI , which would be very colorful and potentially show how my brain has remapped around scar tissue caused by the stroke (which I've recently been amused to learn can also be called a "brain attack"), as well as perhaps showing how brain cells have even regenerated in my right hemisphere (if that's even possible). I would consider it a picture of my New Brain. Insert, "Why, I've got half a mind to..." joke here.

So why Quiet desperation? Whenever I go in for scans like this, I find I have to prepare myself to some extent for bad news and question what lengths I'd even be prepared to go to remedy unexpected problems. Even though I've been feeling fine and didn't suspect any changes, I had to gird myself. If I do have an fMRI performed (insurance has to agree, since it isn't medically necessary), I'll have to do the same, despite the fact that the goal of the scan has more optimistic intent – instead of looking for damage, I'd be looking for healing. But the sword is double-edged – my doctor said he would not normally request such a scan,  because just talking to me about how I feel I'm doing, observing my progress, and noting the areas of my life in which I've returned to some level of normalcy (driving, work) provides a meaningful gauge of how I'm healing. Even the fact that I'm curious about an fMFI, he considers a positive sign. That said, I've been down that road before of expecting better results than I received – most specifically with the neuropsychological evaluation I expected to pass with flying colors but which ended up identifying more deficits than I feel accurately portray my day-to-day performance.

Now to the pictures:

Left is right & vice versa, light grey is healthy brain tissue, dark grey or black is scar or dead tissue, reflection is from aneurysm clips.

Arterial view. The reflection is still clips and what's left of the deflated aneurysm.

Highlights my big nose, the aneurysm clips, and the zipper on my fleece.

Pretty similar but somewhat emphasizes the portion of my skull that was replaced.
My plastic skull.

The Radiologist's report:

COMPARISON: CT head Maine Medical Center 8/7/2012, CTA 6/9/2011
CTA of the head with and without contrast. 3D post-processing of the images was performed, and the post-processed images were used in
There are postoperative changes of prior right frontal temporal craniotomy, giant right MCA aneurysm clipping, and synthetic cranioplasty flap
placement over the right frontal temporal convexity. There is an unchanged appearance of multiple aneurysm clips, as well as calcium from a
collapsed thrombosed aneurysm.
There is unchanged encephalomalacia in the right frontotemporal parenchyma with ex vacuo dilatation of the right lateral ventricle. There is
unchanged dystrophic calcification adjacent to the region of encephalomalacia. There is atrophy of the right caudate and right cerebral
There is no evidence of acute intracranial hemorrhage, new mass, or new territorial infarction.
The ventricles, sulci and cisterns are unchanged in appearance.
Scattered paranasal sinus opacification is present with right maxillary retention cyst The mastoid air cells are clear.
The orbits, soft tissues, bony structures are unremarkable, except for postoperative change described above.
Examination of the aneurysm is limited secondary to metallic streak artifacts from aneurysm clips. There is an unchanged appearance of mild
prominence of contrast enhancement in the area of the surgical clips that may represent minimal persistent flow through the MCA aneurysm.
The remaining arteries are unremarkable, with no hemodynamically significant stenosis or aneurysm identified.
Unchanged findings of right frontal temporal craniotomy with synthetic cranioplasty flap and giant right MCA aneurysm clipping.
Unchanged right frontotemporal encephalomalacia.
No acute intracranial hemorrhage, new territorial infarction, or new mass lesion.
Unchanged contrast opacification in the region of the right MCA aneurysm that may represent a small amount of persistent flow. No other
intracranial aneurysm identified.

The real quiet desperation

In addition to my medical travels to Massachusetts, I also recently took a more spiritual journey to The Bay State – driving to Walden Pond to meet my dear virtual and flesh-and-blood friend, Jeniene. When the park turned out to be closed, except for the gift shop, I think Mr. Thoreau would have been pleased with how we reclaimed our day and let the time carry us wherever it cared. Oddly enough, despite being the Thoreau quote which resonated most with me in my youth, quiet desperation doesn't sell well on a t-shirt, so I instead bought a magnet of the much-more-uplifting but no-less-resonant, "I know of no more encouraging fact than the unquestionable ability of man to elevate his life by a conscious endeavor." Our unexpected change of plans (we were originally going to spend the morning at Walden) led to a serendipitous chain of events as we consciously endeavored to lose and find each other a couple of times but always managed to reconnect via cell phone, including a pit-stop in a strangely-familiar parking lot (my visual memory works!) which turned out to be the location where I married my Best Man (meaning I was the officiant  at his wedding) in 2009 and had a very nice lunch in a pub in Waltham (while she and I have bonded mostly over Facebook, our face-to-face interactions always confirm we have much more in common than illness. So as my first bona fide road trip since getting my license back, it turned out to be the perfect expression of what good things life delivers sometimes when you just let it. That's the "song" I think Thoreau was talking about.

Saturday, June 15, 2013

Opinion Poll

As I mentioned last time, I'm endeavoring to take my blog to the next level. What that'll actually mean is yet to be seen, but it begins with an effort to do some kind of branding and promotion around my writing and my message. Mind you, that message does fluctuate at times, but I do hope my experience can in some way help others navigate similar choppy waters. "Semicolon" as a metaphor has served me well in representing this pit stop in my life, but it's too commonly used, including an upcoming memoir which is not my own. While I now own the "semicolonblow" name and web address, it's been pointed out to me -- and I agree -- that it's a little too much of an obscure inside joke and open to improper interpretation to be truly useful . So I come to ask your opinion on finding a new name. If you are so inclined, please take a few minutes to answer this poll. My attempts to do this on Facebook have not yielded helpful enough results. I do feel somewhat beholden to some form of "semicolon," but I'm open to additional suggestions as well.


Sunday, June 09, 2013

Can You Kon Tiki?

Fair warning: this may end up being one of my most depressing entries, but that's okay, because it's also honest.

I actually started writing this on New Year's Day, 2013, during a snowstorm which was threatening to knock out our power. It seemed a good enough time as any – as is any time (like today) – to take stock and prepare annual resolutions/aspirations. Something we all do and which I've done before:

Perspectives on Prospective Resolutions
Last Pre-Surgery Post
The Full Shawshank Experience

I've been putting off the completion of this year's mental masturbation due to the aforementioned downbeat tone and the vague notion that I should alternate the types of things I write if I want to maintain some kind of consistent readership. So thanks for reading this far, especially past the image of someone jerking off his brain (too much Louis CK, who I would love to have over for dinner, just to talk about masturbation).
I'd say my overall resolution/resignation for the year boils down to a continuation of past resolutions in my ongoing mid-life crisis (though at this point, referring to where I'm at as the middle of my life seems overly optimistic).
I started my mid-life crisis at 17 but managed (just barely) to survive beyond 34. At the time, I think I just liked melodramatically telling myself that I was suffering through such a crisis; but I had no idea what that actually meant.

There are crises to every phase of our lives. At 17 I'd say the crisis is in living up to the potential of living. I've stated my vastly oversimplified theories of age-based life perceptions below:

  • Youth: life can (and probably will) be any way you desire. (i.e. YOLO)
  • Mid-life: Life is as it is.YOL
  • later life: Life was as it was. YL

The crises come from the fact that every self we are at any given time still contains earlier selves locked inside, offering commentary and perspective on current states of affair (state of affairs?) ( attorneys general?) So the teenager struggling with who to ask to prom and where to go to college still has Snot-Nosed Kid who believes he is immortal stuck inside, shouting about all the great things he wants to do. I actually remember the first time I was given a, "What do you want to be when you grow up?" assignment in school – I'm guessing fourth or fifth grade. I said an astronomer, though I also recall that the picture I drew was of someone lying on his back in a field, staring up at the stars. So I obviously had no clue what an astronomer does, and what I really meant was that I wanted to be a poet-philosopher. Seeing as that's really just a state of mind anyway, I think I've achieved my goal. That said, it isn't as though we can or should rely upon the accuracy of our desires at any given time: yes, our 20-year-old selves may have had a vision of what 40 would look like; but 20-year old us couldn't possibly have known what would make 40-year-old us happy.

I don't know why midlife seems to be the time when people most struggle with the choices they've made (or which have been made for them) to arrive at that particular waypoint in their journey. I suppose to support my hypothesis, it's because they have more accumulated perspective piled upon potential disappointment that things didn't work out exactly as they'd dreamed.

Chronologically, I am now in midlife, though opting for a convertible head instead of a sports car has placed me spiritually in what I'm calling early-onset old age; conflicted between acceptance of life as it is and the youthful optimism (desperate expectancy) trapped inside, naively believing I still can mold my reality beyond the confines of my circumstances -- voluntary or otherwise.

I don't know why more older people don't seem to struggle just as much if not more than the middle-aged with where they find themselves. One of my roommates at the rehab – an elderly gentleman -- used to say he was luckier than me, because he had lived a "full life" before having his stroke. This is the same man whose wife knew something was wrong with him because he had stopped talking for a minute. Aside from immediate medical concerns and handing over his flooring business to his son, he was not in crisis.

Right, so I started writing this on New Year's Day -- the Vegas of holidays -- so I am forced to rehash old material as I gaze upon the blank slate ahead. What preceded this particular new year was a week of weather events (snow), sickness (cold/flu, Strep, ear infections), and quiet reflection. On our first day of being snowed in, we hunkered down in true over-privileged survivalist mode, making sure all our various screens were charged (lest the power went out -- it didn't). And we decided to watch a documentary on one of our instant streaming video devices (Roku). We chose the 1950 Academy Award winner Kon Tiki. It's the fascinating, yet self-congratulatory tale of what modern white men can do when they set their minds to a task, even if that task is a re-enactment of something prehistoric men may have already done. Who knew balsa wood was so hardy? Maybe my father and I should have put more effort into my Cub Scout Pinewood Derby car. We could have canoed to South America.

I've declared 2013 The Year of No Complaints in our house. That is meant to translate into no whining, no griping, no yelling. Not, no problems. There will be problems. And we can help each other solve those problems. But better to approach with solutions than problems. Complaints in and of themselves, while emotionally valid in the moment, hold no purpose other than to frustrate the bearer and those around him or her. If you have no solution, certainly seek advice to find one. If there is no solution, then maybe it wasn't a problem in the first place. If you think you see someone with a problem, ask if they need help; do not offer an unsolicited solution. If someone asks if you want help and you do not, thank them kindly and move on.

Needless to say, as resolutions go, The Year of No Complaints has been a miserable failure.

In addition to Kon Tiki, we also ventured into the worlds of:

the undercurrent of all these films, and what brings me back to my theme, is how I now react to images of unbridled adventure, romance, or even physical comedy. Given how far out of my reach and capabilities they seem, I'm left a little empty and longing to fill a void.

If ifs and buts were berries and nuts,oh what a cake I'd bake. It's a fruitless endeavor.

Back to resolutions, oh, great pinball-machine mind of mine:

Next Year I'll Be Perfect

My friend Laura recently published her first novel (linked above). She feared that as "chick lit," (a term which always reminds me of this Bill Cosby routine) the book would have a hard time engaging male readers. I for one am not a fan of gender stereotypes but am a fan of romantic comedies, which I would consider her work. And while I have issues with perfection and the belief it can be consciously defined and achieved, this time of year (January at the original time of writing; keep up, would ya) especially lends itself to consideration of what we want to get out of life -- whether they are things we've been taught we're supposed to want, things we once wanted and have convinced ourselves we still do, or things we truly want. Many of those things are universal; most are individual if we allow ourselves the latitude to truly self-reflect. Fortunately, there are characters in the book who balance out the protagonist's hubris that she needs (another of my least favorite words) to achieve a laundry list of accomplishments by age 30.

The joining thread between all these things is potential. While it goes against the very premise of my bestselling Get Everything You Want by Wanting What You Already Have, I think it's human nature to want more. Settling in to a routine can be quite nice and comfortable, but it doesn't necessarily feed our souls. Romance and folly and adventure and spontaneous, unexpected journeys do.

I think one of the reasons I enjoy the series Girls  is that it reminds me of the potential of youth (mind you,  a depiction of a brand of youth I never experienced).

Though I do have my own romantic youth to reflect on in this, my middle existence. I guess I'm defining "romance " here in a Robert Frost, road less traveled sort of way:

  • 1989-90: After my freshman year of college,  instead of starting my sophomore year of college, I spent six months in the Lake District of England,  giving guided tours of one of William Wordsworth's homes and falling in love with an older woman (I was 19, she was 24, oooooh, scandalous!).
  • 1990: Knowing I wouldn't be happy returning to college for the second half of the year , I returned to England for three more months; came back to the States -- girlfriend in tow --; and took an Eastern train trip to Niagara Falls; Williamsburg, Virginia; and West Palm Beach , Florida (what's more romantic than shuffleboard in Century Village, right?). We then took a drive to Amish country in Pennsylvania and New England.
  • 1993: After graduating from college, I spent six months in Alaska instead of getting a job or going to graduate school.
  • 1996: After working at my first "real" job in NYC for two years, I moved to Maine and telecommuted for seven years.
  • 1997: Deciding I wasn't taking full advantage of the telecommuting experience,  I took a cross-country train trip to North Carolina, Minnesota, Seattle, and San Francisco, visiting college friends and working from their apartments.
  • 2002: Got married on top of a hill, instead of someplace more formal.
  • 2004-5: After being "made redundant" from my job and knowing I wanted to try something new, I spent a year teaching computing in elementary school (K-2), instead of sticking with more lucrative pursuits in web development and/or database work.
  • 2005-7: After having my teaching position eliminated due to budget cuts, I stayed home with newly-born Wyatt, leaving it to Jamie to financially support the family. This experience afforded us the perfect summer of 2005 (during which Jamie was on maternity leave and our life consisted of blissfully taking strolls through the woods and sitting by or in the pond. It also gave me the opportunity to actively raise my baby in a way few men get.
  • 2010: Instead of freaking out about turning 40, I developed early-onset old age, got myself an aneurysm, had brain surgery, and suffered a stroke.
  • 2013: My one real, tangible resolution for this year is to turn this blog into something more (a book?), something that can hopefully help people struggling through similar challenges. So far, I've begun the process of querying literary agents and have registered my own domain name (the hyphen in has always bugged me, @semicolonblow is my Twitter user name, and I wanted to pay homage to Phil Hartman and the golden 80s of SNL. I've also found a number of other semicolon-themed blogs, ranging from suicide prevention (more metaphorical) to intestinal maladies (more literal). Semicolons are also getting popular, so I have to find a way to stand out.

Just to bring things somewhat full circle and, of course, back to something pop cultural that I like, we recently  saw a nice little film called Safety not Guaranteed. It's a thoughtful and heartfelt contemplation on the nature of life as time travel -- into the future (except that the present keeps getting in the way) or into the past (as an attempt to reclaim/relive/re-harness/pay penance). Happy New Year (I just added that now, in June; same difference)!

Sunday, June 02, 2013

Strategic compensating

Relatively early in my stay at the rehab, during a "family meeting," my physical therapist, Joanie, commented on the fact that I was good at "strategizing"when it came to formulating solutions to my physical limitations. That was a nice way of saying I compensated well.

I'm periodically asked --out of kind curiosity -- about  how I manage to do as much as I do with one hand and limited balance, speed, and mobility.

So I thought I'd take a little time to document some of my most common strategies. If I were more ambitious, I would make videos of me doing all these things, but it would probably just frustrate you to watch.

The recent brain injury conference I went to often tossed around the word "survivor", a term I'm looking to replace, since it feels too immediate. It's certainly better than "victim", but what do you think of these alternatives?

  • Recoverer (too awkward?)
  • Survivalist (invokes images of a bunker filled with quad canes and Ginkgo Biloba?)
  • Healee (also awkward and touchy feely?)
  • Changeaphile (captures the necessary mindset but awkward?)
  • Recovery Stylist (watch the clip)
  • Strategist (coming full circle)

While I think my nature as a problem solver serves me well, there's more to it than that. I recently came across this book, which I think summarizes nicely three basic priciples of doing more with less:

  • Body Positioning (to which I would include mastery of basic laws of physics, like counter-balance, leverage, and inertia).
  • Four fingers and a thumb (I think the author does well to highlight that "one hand" is more than a singular assistant, but I would say, "Four fingers, a thumb, and a mouth".
  • Gadgets (certainly something I relish and utilize and expand my collection)
To these I would also add:

  • Guile and vigilant intention (early in my recovery, I was actually put on a medication called Provigil to aid my energy and focus, since you  never know when a ninja might leap out and push you over. But seriously, folks, attention to potential consequences is pretty critical. Looking at typical right hemisphere brain injury problems, I once again have to count myself as pretty fortunate when it comes to the limited extent of my cognitive deficits.
  • Patience (years of computer work has, unfortunately, trained me to be more patient with inanimates than people).
  • Help from others (while it took some time to get past the "proud handi-capable" stereotype, I've tried to take on the philosophy imparted to me by an amputee patient of one of my therapists  -- that allowing others to help me is in some fashion a gift I'm able to give them.
  • Self assistance (my right hand and foot often pitch in to help my left.
Now to the nuts and bolts:

I work from the bottom up

  1. Socks
    1. Jamie says it's now easier for me to put my own socks on than for her to do it for me.
    2. My technique is basically to stretch the opening into a snake's mouth with my right hand  and then swallow its prey whole (see The Little Prince).
  2. Underwear and pants:
      1. left leg, then right (don't ask why -- that's how I was taught), often lying back on the bed.
  3. Brace
    1. Depending on the weather, I may wear my KAFO under my pants (the plastic can offer a cooling effect) or over (though jeans get a little bunchy).
    2. In the winter I often wear silk long johns for a thin, warming layer between my skin and brace or else just put the brace over chinos.I get many comments regarding the faux denim shell on those days.
  4. Shoes
    1. As I described on Facebook, after months of wearing the same sneakers, I recently purchased a new pair of appropriately-business-casual shoes, which required my going from a size 8.5 to a 10 Wide (in order to accommodate the brace's foot bed). 
    2. My right shoe, on the other hand, is stuffed with three insoles to better fit my still-8.5 foot.
    3. Squeezing the shoe over the brace can still be a challenge and probably wouldn't be possible without my Shoe Lip, which acts as a shoe horn and keeps the back of the shoe from folding over. Depending on how much attention I feel like drawing on any given day, I may also put a thin sleeve of nylon hose between my brace and shoe, to cut down on squeaking.
    4. Elastic laces are pretty essential for turning any shoe into a slip on, though I'm intrigued to try out this one-handed tying technique.
  5. Shirts
    1. Depending on the weather, I often wear t-shirts under sweaters or button-downs.
    2. If it's a long-sleeve button-down, always button the cuffs first (no one can button his/her right cuff with his/her right hand after the fact).
    3. Then, left arm in sleeve (sometimes guided through by the right hand), over head, then right sleeve, then pull down the back. I have been known to get quite spectacularly tangled up, at which point I have to dial 911.
    4. Button from bottom up, being careful not to misalign.
  6. Vests and jackets
    1. It's starting to get a little warm for these, but having decent pocket space is pretty important to me, so a fleece vest with zip-up pockets has been a must.
    2. I prefer a vest with a cloth tab on the main zipper, so I don't have to pre-zip and go over my head; the zipper tab allows me to align the two tracks, hold it taut with my right hand, and then zip up with my teeth.
    3. Jackets and coats are a little harder than vests and consequently require the tried-and-true flip  (though since I can't bend over and put both arms in the holes or lift my left arm over my head, it's a little more like this (though with less flair).

  1. Breakfast usually consists of a yogurt, which I use to take my morning pills.
    1. Stirring a yogurt with one hand requires the Thighmaster Gambit (I hold the container between my knees and then stir with a spoon in my right hand). I've found this tactic can also be used when opening jars.
  2. Lunches are generally pre-packaged, microwave-friendly offerings from Healthy Choice or Trader Joe's. 
    1. Last year, I had an entourage of helpers from my department assist with carrying. This was emblematic of their generosity and also provided good social interaction.
    2. This year, I decided to fly solo on lunch, using my NERHP messenger bag (SWAG from my exceeding expectations honor). Doing so still gives me a bit of mid-day exercise, plus the satisfaction of inching open and closed my lunch bag zipper (therein lies the physics lesson), and the hope of getting a hot lunch back to my desk without spilling sauce all over the inside of my bag.
    3. Any meals requiring cutting call upon the Knork or straight edge of an ordinary fork, since I can't yet hold a fork steadily enough in my left hand while slicing with my right.
    4. Food packaging -- even that at the rehab -- is rarely one-handed friendly. Opening therefore requires counter-balancing (such as with diner creamers) or teeth (sugar and ketchup packets).

  1. Brushing my teeth is the one regular time I put my left hand to work, holding the brush steady while squeezing paste with my right. It's a good reminder to not neglect or totally write off my left hand, but mostly I got tired of my toothbrush tipping over.
  2. I still mostly shower sitting down and use a long-handled scrubber (Yes, Wilk, I wash myself with a rag on a stick)
  3. Putting on deodorant in the morning is one of my favorite things to do:
    1. I can lift my left arm enough to reach my left armpit with my right hand.
    2. Applying to my right pit with my right hand requires what I call The Orangutan 


Carrying things from on place to another is probably my biggest frustration. If I don't have my bag, it's a slow process of repeated trips, during which I mostly leave my cane in one room, carry a drink (or whatever) in-hand to another room, and then retrieve my cane if I can remember where I left it. Making a pot of coffee, for instance, takes about six treks between the sink and the percolator, and I'm not exactly a speed demon.


Now that I'm driving again, I can make myself useful by once in awhile stopping at the supermarket on my way home from work. My first rule there is: no matter how short the list, always get a cart --it can carry my purchases and my cane, and it can act as my cane (something they used to have me do once in awhile at the rehab, just to see if I'd knock paintings off the wall ). I've greatly improved my precision and am proud to say I haven't taken out any store displays.

Online shopping is my friend. Between Amazon, Cafepress, and Etsy, I can cover all gift-giving needs, whether traditional or personalized.

All of the above strategies have helped make my not-so-normal life feel a little more mundane. Why, this past weekend, Jamie took the boys camping and left me to fend for myself. While it was too hot to make me want to do much of anything (except write this), it did feel like stretching my wings a bit. Not a day goes by that I'm not posed with some kind of new challenge, so it was nice to bundle them up with quiet time.