My Life as a Semicolon ; )

Closing Time

2023-01-23T17:54:00.004-05:00

This isn't an end. How could it be? I'm still here. But it's been two years since I've blogged, so it feels right, in a way, to close the book on this chapter of sorts. Or is it close the chapter on this book? My Semicolon goes on, but it seems unreasonable to do so in this form.

If I HAVE to summarize the past two years, it would be thusly:

2021

More of the Pandemic Same, until summer's extended-family cruise in Alaska, which proved a perfect blend of Quality Time and physical challenges, climbing in and out of dinghies and hiking in the rain.

2022

Other kinds of challenges, between leaving one job (well, it left me) and starting a new one, and riding a total of 20K on my trike in various events, something I would never even have imagined doing pre-stroke. I lost a friend but made better ones. Same goes for the job. It actually feels like I'm serving a purpose for people w/disabilities now.

So it feels right to "end" here. I don't know if/who is checking this blog anymore or if an email will even go out when I post this. Excitedly, I'm writing this entry on a tablet called a MobiScribe, because I write faster than I type.
====================
Most remarkably, it can read my scrawl, mostly.

So I'll close with a guilty pleasure lyric from a guilty pleasure song -- Semi-sonic's 1998 hit, Closing Time:

"Every new beginning comes from some other beginning's end."

What else needs saying really?

Messages in a Bottle

2020-11-27T08:59:00.001-05:00

Messages in bottles? Message in some bottles? Culs de sac? Statutes of limitations? Brothers in law?

In this case it's probably messages in bottles, because the point is that one of my pandemic coping mechanisms has come in the form of letter writing. Yes, actual letters, with actual paper and pen. I've got a fantastic setup in my office -- complete with comfy chair, adjustable lap desk, and storage ottoman. I have a lot of supplies to store: a bevy of fold-and-mail stationery (which I'd taken a shine to in England); refillable, capless pen (which just makes me feel fancy and is easy for one-handed use); and clipboard (also a one-handed must).

I started by writing to friends and family as a way of feeling connected in disjointed times. I know it helped me. I hope my missives have at least been entertaining to others. I've also been journaling again -- which I'd done in my youth but from which I'd taken a long respite. I suppose this blog has fulfilled many of the purposes of a journal or diary -- as an external outlet for internal processing. Letter writing did the same, though with a very targeted audience in mind. My journal is now, similarly, just a long letter, though only written to and for myself (or no one), which is quite liberating -- to shout into the void when no one is listening. That got me thinking about literal messages in bottles -- written without knowledge or expectation of receipt or recipient. I tried sending a few, random letters to no one in particular, just to see how it felt (not looking to be rescued). No responses yet, but that was kind of the point. I'll either hear back or I won't. I looked a little into pen pal matching services, but they were suspicious, in that they're inherently skeptical of writers' intent. And I wanted to go into it with the best of intentions, simply to share a little of myself with others who might feel a need to connect with someone, anyone. And that's when I found The World Needs More Love Letters. They create just those kinds of connections, so it was easy for me to jump in with both feet. Ironically, I also discovered I'd been using some of their mailers all along.

Because letter writing has been a saving grace for my year, I wanted to post this as my Thanksgiving entry and invite anyone who sees this and is interested to post their own letter requests in Comments below. I'm also always happy to receive as well as give:

Ken Shapiro

24 Valley Rd.

Cumberland, ME 04021

USA

Spambots need not apply.

Semicolonoscopy

2020-10-31T10:06:00.002-04:00

I've labeled this entry TMI, which is a category I've only used five times, probably to the distress of many who would rather not know as much as I tend to say. Increasingly, my lack of filter tends to get me in trouble and forces me -- rightfully -- to turn to Craig Ferguson's Three Questions:

Does this need to be said? (my brain feels an urgent need to express any and all thoughts)
Does this need to be said by me? (if not by me, then whom? Though I'll often find similar comments have already been posted somewhere in the bowels of the internet)
Does this need to be said by me now? (there's no time like the present, and you're only as clever as you are timely)

As for this particular entry, I can think of no better time, place, or person to say and show the following. For one thing, how could I -- author of a ten-year chronicle called Semicolon -- in good conscience not write an entry about my colonoscopy entitled, Semicolonoscopy? That's just a moral and artistic imperative. You have been warned.

I think I'd previously mentioned that the pandemic forced me to postpone my 50-year check of the pipes. But I finally got my referral and went under the camera this past Monday.

Under pandemic protocols, I did have to get a negative Covid-19 test (no pictures, I'm afraid) the Friday before, quarantined for the weekend, and wore a mask the entire time I was at the hospital (though they did insert a nasal canula of oxygen for my sleep apnea).

I will not go into details (he can learn!), but -- as many had told me in advance -- the prep was far worse than the procedure itself, though it seems even the prep has improved over the years in terms of taste and volume of laxatives.

I'll admit I was a little nervous due to a bit of family history, general anxiety over anesthesia (mild as it was), and potential Karmic irony that my semicolon might take a literal turn toward colon cancer.

Fortunately, as you can see in the pictures below (if you have the stomach for such things), I was clean as a whistle. No polyps, no masses, no foreign objects.

Turning Ten

2020-10-03T10:52:00.001-04:00

Time is arbitrary. One set of 365 days is not the equivalent of the next.

Take 2010 for me and 2020 for everyone, please. It's hard to believe, yes; and if you're reading this post, you've probably been on this wild ride with me the entire time (thanks!), but today is (around) the ten-year anniversary of my stroke! I've called it my aneurversary, some in the BI community call it a brainiversary, some a re-birthday. I see it mostly as a waypoint. It's a great signpost to the moment my life took a sharp turn, but I don't celebrate or mourn that day so long ago.

The extreme measures of my experience at times made me oddly optimistic during this past decade -- mostly in a comforting, New York, New York, "If I made it through that, I can make it through anywhat," way. This past year, however, has stripped down much of that can-do spirit back to cynicism of old. I've needed to do a fair amount of soul searching about planning in advance and trusting my instincts about maintaining control and problem solving.

To that end, I found this article reassuringly simple to follow. I've also tried to focus on problems with clear-cut solutions.

As I've hopefully expressed clearly, one of the proudest and most fulfilling accomplishments of my semicolon has been forming and supporting the Ability Employee Resource Group at work, for employees with disabilities and family caregivers. October being National Disability Employment Awareness Month (NDEAM), we're holding our second annual (this time virtual, pre-recorded) talent show emphasizing ability over disability. I touted last year's performance in May (Disability Insurance Awareness Month), and Part 2 of my Half-Brained Magic Act is below:

Why Can't You Find a Polio?

2020-07-26T08:48:00.005-04:00

On this, the 30th anniversary of the signing of the Americans With Disabilities Act (ADA), amidst current and remarkable social unrest, I wanted to take some time to reflect on our ongoing struggles with isms and Civil Rights in general.

Listening this morning to an old interview with Civil Rights icon and Congressman John Lewis (RIP), and recently watching the Netflix documentary Crip Camp, I was struck by the amazing work of our forebearers (of which I've reaped the benefits), progress made during my lifetime (between Section 504 of the 1973 Rehabilitation Act [not implemented and enforced until 1977], passage of the ADA in 1990, the election of the first African American President in 2008, and the legalization of same-sex marriage in 2015) -- as well as how far we still have to go (as exemplified by the need for the Black Lives Matter movement, the way people of East Asian descent have often been scapegoated for covid-19, and how the vulnerability of people with pre-existing conditions is sometimes blamed for inconveniencing "healthy people" during the pandemic).

Crip Camp also contains some "beautiful" examples of unconscious discrimination that jumped out -- such as a woman with Cerebral Palsy who mistakenly had gonorrhea diagnosed as appendicitis, because the doctors in the ER couldn't imagine she was sexually active -- and the reaction of that same woman's new mother-in-law to her son's choice of bride: "I understand why you'd want to marry a handicapped girl, but why can't you find a polio?". We go out of our way to build arbitrary hierarchies even within marginalized communities, I suppose to make ourselves feel better but always at the expense of someone else. When will it end?

I'd say that at least covid-19 is an equal opportunity infector, but we know that isn't true: institutional biases toward race, class, and "health" beat the impartiality of nature every time.

Hooray for civilization!

Global Pandemicolon

2020-04-04T10:53:00.002-04:00

For years (nearly ten!), the very long tagline of this blog has been: My favorite punctuation mark is the semicolon. And it's an apt metaphor for recent years of my life: it's more than a comma pause, not quite a period stop; it usually appears in the middle of a sentence; no one quite knows how to use it properly; it's a sigh of contemplation; a knowing wink; an upward glance of reflection.

Of course, the metaphor extended from discovery of my aneurysm through my stroke and ongoing "recovery". Now we all find ourselves in this odd holding pattern of anxiety over the unknown, anticipation of a return to "normalcy," the resignation and acceptance of current state as normal, adaptation to circumstances through creative thinking and assistive technology, nostalgia and mourning for the (probably overly-romanticized) memory of a life of relative ease, and grief over the loss of freedom to plan for a future beyond the confines (pun intended) of the next month or two. Why, it's almost like being in love.

So: Welcome to my world (Cue FAO Schwartz music). Much of self-distancing, isolation, and hyper vigilance mirrors the every day lives of people with disabilities, right down to battling the stigmas of "exposure" and "risk". People don't like to be reminded of their own mortality, and disability and/or disease often do that. But can we please put down the torches and pitchforks long enough to recognize that someone who coughs or even tests positive for novel Corona virus isn't a pariah? Same goes for the elderly or others perceived to be at greater risk during this crisis, as if it's their fault for making us stay inside for the past and next few weeks or months? Yes, I had a heart attack and a stroke ten years ago. But I do not have any ongoing health effects or medical conditions which place me in the high risk groups for COVID-19 infection. So don't worry about me. In fact, I'd argue I'm well equipped to weather this storm given the breadth of my virtual support system, my ability to work from home, and my tolerance for expecting the unexpected. Why, last October, when I was contemplating what this year's health crisis might be, it centered around tinnitus and ear wax (both of which have dissipated), perhaps the inconvenience of reflux (still ongoing but manageable), periodic lower back lock-ups (pretty bad over the last week), but never did I predict this.

I had even started to allow myself the luxury of planning for 2020 and for my 50th birthday to signal a Year of Yes. Damn it, I had a lot of travel plans. Now I'm in the mode of checking cancellation policies and re-planning, though the uncertainty makes that feel hard as well. We're so in the thick of the pandemic that it's hard to imagine transcontinental travel being safe in a year, whether it's a second wave of this virus or some other global crisis that stands in the way. And who knows when I'll be able to get my Age 50 colonoscopy? The disappointment never ends.

That can be a frustrating perk of living in a semicolon: you're so prepared for the unpredictable that you're less let down when it happens. Though I'll admit I'm pretty upset that my Year of Yes has become a year of, "Not so fast, mister." Even when I consider the satisfaction of throwing caution to the wind and living to the fullest despite fate's insistence otherwise, I have to check myself. In the past two weeks, I've left the house a total of two times -- once to take a walk on the road, once to sit on my own deck to have a drink with Jamie and our friend Marc (the only non-family member I've seen in person this whole time). I've weighed the prospects of taking a run to the super market, just to see the surreally bare shelves and with my own eyes, but I fear Jamie wouldn't let me back in the house. For all the practicality of Social Distancing, I do worry we'll start seeing each other as germ factories, even once the quarantine is lifted.

What I absolutely refuse to do, however, is abide by the insistence of some that we use self-quarantine to tackle that list of, "If I only had the time..." aspirations. Being stuck in the house hardly grants most of us any extra time to write that novel or learn to play an instrument or vacuum behind the refrigerator. If anything, there's more to do as we learn to work and school in new ways while still trying to keep up with the basics. And to all the humble braggers out there, posting pictures of their well-organized home-school set-ups (complete with cooperative children) and homemade hand sanitizer, I say, "Life is not a competition". Certainly, we all process fear in different ways. As in pregnancy, many are in the "nesting" phase, desperately trying to being order to chaos and claw at a sense of control when everything is otherwise a tornado of turmoil. Pecos Bill, where are you when we need you?

Jamie used to say, "Mourn the perfect pregnancy" when contemplating guilt over C-sections and premature births. I say, "Mourn the perfect life," as a quest for perfection is lost before you ever try to achieve it. If I hear anyone complain about having "wasted the quarantine," there's gonna be hell to pay. I hear enough reports from friends who are permanently disabled being told, "Yeah, I'd like to retire early, too." Yes, disability and this crisis are opportunities to better ourselves, but not at the expense of self worth or to foster self-righteousness. If you can't open yourself up to learn from change, maybe you should retire.

I'm also waiting for verisimilitude to catch up with reality, so I don't have to keep criticizing TV and film characters for shaking hands, just as I lament seeing a good dive roll or running from a zombie, knowing I no longer have that option in my survivalist bag of tricks. That's the nostalgia for simpler times we took for granted: Just this morning, I caught a glimpse of my lunch bag out of the corner of my eye, and it was like finding a buried artifact from a lost civilization.

If there ever is a scripted Friends reunion show, will it be, "The One Where They Were Quarantined," so Phoebe and Joey can finally get together?

Even Thomas -- the perfect semicolon cat -- can't quite be posed perfectly enough to capture this pause (paws?); but he tries, just by being himself:

#LoveYourBrain

2020-03-08T12:30:00.000-04:00

This week was one that exhibited how much I've gained from my stroke: As Leader of the Ability Employee Resource Group at work, I helped facilitate recognition of March as Brain Injury Awareness Month by partnering with Goodwill of Northern New England's Neuro Rehabilitation Services to bring a speaker to the Portland area. Kevin Pearce was a champion snowboarder who suffered a Traumatic Brain Injury while training for the Winter Olympics in 2010. He has since used his accident to fuel his Love Your Brain Foundation and his mission to make a positive impact (no pun) on the BI community and to influence brain safety in extreme sports. Even though the similarities between Kevin and me end with the fact that our brain injuries happened around the same time, I did my research on him by watching The Crash Reel -- a documentary covering his injury and recovery -- which I think is the most balanced portrayal I've seen of BI recovery challenges from the perspective of both the survivor and his/her support circle. Because Kevin was so established in his field at the age of 22 and his identity was so tied to his physicality, I think he had some unique hurdles in overcoming both his and his friends desire for him just to be "the same old Kevin," as well as his family's desire for him to remain safe and healthy; but I could certainly identify with those conflicts, as well as the quest to find his new purpose and a sense of independence. If I'm allowed to pat myself on the back (left shoulder only), I admire how both he and I have used our ten years of "recovery" to accept who we are, not mourn who we were.

So it was my pleasure to have the opportunity to tell him as much in my introduction at the event. Below is the best picture I have of the somewhat awkward hug we shared as he entered the stage and I exited (how do you properly greet someone in the COVID-19 Age?). Can you tell which is the young, handsome, oozing-with-positivity athlete and which is the middle-aged, lop-sided, disheveled schlub?#LoveYourBrain

Moving at the Speed of Geology

2019-12-28T10:32:00.000-05:00

Once again, it's that time of year when we reflect on our past and preflect on our future.

Given the significance of this particular calendar change, someone at work asked us to list our accomplishments for the past decade.

In the process of doing so, I realized that -- as much as we like to impose arbitrary timelines on ourselves and tally our successes and failures, a year was never quite the right measure for meaningful change. Just as geological time is most impactfully measured in eons and millennia, individual human evolution is better quantified by decade than annum. It's definitely been one of those Best of Times, Worst of Times decades (not to mention one I can pretty easily break down), as I:

Turned 40
Learned I had a brain aneurysm
Started this blog
Had surgery to clip and remove said aneurysm
Had a cerebral hemorrhage and stroke
Spent two months in the neurorehab hospital
Returned home
Spent nine months on medical leave from work
Returned to Work
Learned to drive one handed and regained my driver's license
Used my personal experience with disability to found and lead the company's Ability Employee Resource Group
Found my voice as a disability advocate
Rode multiple charity 5Ks on my recumbent tricycle
Developed a swallowing disorder and lost the 40 pounds I'd gained since the stroke
Had surgery to correct the swallowing disorder (still trying not to overeat)
Helped teach my sons the value of living a persistent, creative, empathetic life (hopefully, my greatest accomplishment)

With this exercise in mind, and with Age 50 lurking just a couple months away, I decided to broadly parcel my five decades:

1970s: Became a person
1980s: Became my own person
1990s: Became an independent adult (i.e. college grad, job, apartment)
2000s: Became a conformed adult (i.e. house, marriage, kids)
2010s: Re-became my own person while

I'm sure we'll be hearing plenty of, Hindsight is 2020, jokes for the coming year, especially in the past is prologue sense. So far, I've taken this approach to creating a Happy Holidays e-card which acts as a retrospective of all the cards I've made in the past , as well as taking a stab at staving off the planned obsolescence of Adobe Flash and hopefully preserving some digital artifacts which would have soon gone the way of the floppy disk:

Keeping with the theme of moving forward while looking back, I have the start of an adventurous year mapped out:

50th birthday celebration someplace special (maybe Hamilton in Toronto or Miami?)
Rhino Encounter in the spring
30th reunion with Dove Cottage friends and time to focus on writing in early summer
Alaskan expedition with the whole extended famn damily in mid summer.
What, that isn't enough for you? I'm ready for a nap just thinking about it.

I Can Hear the Ocean From Here

2019-10-27T11:37:00.000-04:00

I've catalogued this post as a Medical Update, but I could just as easily filed it under, No News is Good News. For months I've thought about writing but didn't want to do so until I had some answers. So consider this an answer to a question you didn't realize had been asked, knowing it has a pleasant resolution and "fun" pictures of my brain.

It all began in July. I'd gone to Chicago for the Disability: IN disability inclusion conference and woke up one morning with a whooshing in my right ear. It seemed to be synchronized with my heartbeat, which was both distracting and oddly comforting (sometimes it's nice to have concrete evidence that my heart is still beating). A little research put a name to it -- Pulsatile Tinnitus ("standard" Tinnitus is ringing in your ears). I recalled that thirty years earlier, I'd passingly experienced something similar. When it happened, I'd put my ear against my girlfriend's to see if she could also hear the waves crashing on the far off beach of my brain (she could not). Needless to say, that phenomenon did not remain persistent over the months or years. And my perception of it as an invincible nineteen-year-old was not one of concern. It was an oddity, possibly super natural or telepathic in origins. But my forty nine-year-old, extremely vincible self takes serious note of any changes in my brain activity (say, something that falls in the realm of auditory hallucination). Especially since my original, mild seizures eventually manifested themselves with a ringing in my ear, I began to wonder if my aneurysm had started to wave its arms and jump up and down those many years ago. It seemed unlikely, since the seizures had been caused by the mass effect of my giant aneurysm (humble brag), and my 1989 aneurysm should have been quite tiny compared to 2010. Nevertheless, I scheduled a check-in with my neurologist on my return. There wasn't a lot of concern expressed -- only the suggestion that I monitor it and get the wax cleaned out of my ears. A CTA was scheduled to see if anything new was going on in my head.

Of course, these things take time. Radiology was backed up, there was nothing "emergent" about my condition, and I couldn't get a scan scheduled until the end of September. I was able to fairly quickly get in to see my Primary Care Physician for the wax flush and reach out to my neurosurgeon in Boston, but that only confirmed the call for a CTA. The whooshing and clicking (yes, sometimes it's a clicking) diminished some or was limited to when I was lying down, but it also evolved into a ringing, at times persistently. I began to wonder if this was the thing I was going to have to just get used to this year (up until then, it had been reflux related to my esophageal surgery). I also began to piece together a timeline of events that pointed to a pharmaceutical cause, not a cerebrovascular. In Chicago, I briefly ran out of Lexapro, which I knew from previous experience caused "brain zaps" as a withdrawal symptom. After some research, I discovered that Tinnitus can also be a Lexapro withdrawal symptom, if not a general side effect of its use. So I tried to just get on with it, doing my annual Aneurysm 5K ride and taking a business trip to Chattanooga. Having survived both, I was ready for my CTA. The technicians didn't run out of the room screaming (always a good sign), and the radiologist's report came back the next day with a definitive, " It ain't pretty up there, but there's nothing new in the last nine years."). All my neurological doctors confirmed that finding, even going so far as to say I can wait five years for another scan (surprisingly, it had been five since my last!). As usual, I learned a few new words:

Patent: Open, unobstructed
attenuated: weakened or diminished capacity, but not in a concerning or unexpected way
Encephalomalacia: the softening or loss of brain tissue after cerebral infarction (i.e stroke)
ex-vacuo dilatation: ventricles can expand when there is loss of brain matter (i.e. Encephalomalacia)
Grossly intact: areas of my brain do not show any evident irregularities
cerumen: ear wax (apparently, they didn't get it all)

Learn pronou

technical term for earwax.

So without further ado, here's a collection of my favorite pics, as well as some quick flip-book videos of the scan "series"):

Brain Cloud

Bobby Pins

eyeballs

Nice blood flow

The missing piece and a shimmer of aneurysm clip

Goalie mask

Head on

The Art of Embracing the Suck

2019-08-04T15:24:00.000-04:00

Try not to take this the wrong way. I just need to get some things off my chest.

Historically, disability has been stigmatized if not demonized, including so called Ugly Laws designed to make able-bodied people more comfortable in the face of difference.

Thanks to the now 29-year old Americans with Disabilities Act, outright discrimination of people with disabilities has been formally abolished, but the cultural stigma remains. Unfortunately, the 180-degree over-compensation for this societal shame has resulted in Inspiration Porn, a fetishization of the disabled community as noble and courageous -- Chicken Soup for the Able Soul. I've received my fair share of compliments over the years about how well I've managed the hurdles thrown my way and how inspirational my story is. And while I know and appreciate that those statements are meant with genuine, good intent, I also often feel like they come from a place of lacking self-respect for what "you" would do in my shoes. There is no bravery nor honor necessary to simply want to live as independent and self-possessed a life as one can. It's mostly survival instinct and habit. Yes, a handful of resilience doesn't hurt, but curling up in a ball is rarely a viable option for getting on with the job at hand. As one of my favorite tactical messenger bag morale patches says, Embrace the Suck. This turn of phrase is military slang for, “Deal with it”. For me, it's a bit of c'est la vie and a call to inspire myself. I've never been terribly competitive nor found upholding others' expectations to be motivational (as much as that eagerness to please led me to excel academically in my youth). I was recently at a conference where a speaker recounted a time she was dismissed by a philosophy professor for answering the question, "How should you treat other people?" with The Golden Rule -- as you would have others treat you. She (a stroke survivor) didn't recall if the teacher ever revealed the "right" answer, but I can only imagine it to be the less presumptuous, "As they want to be treated," apparently known as The Platinum or Titanium Rule. Of course, to fulfill that standard, one would have to constantly ask how someone wants to be treated, as inconvenient and awkward as that may be to work into every conversation.

To that end, and in the spirit of this essay, try to inspire yourself and not draw inspiration from others' accomplishments. Ironically, I've drawn that suggestion from listening to a Paralympic Triathlete who spoke at work the other day. Her words and deeds are objectively inspirational, though only intentionally so for young amputee athletes like her. Her goal as a motivational speaker is not to shame the "two legs"into getting off your asses and running some races, because, "what's your excuse?" People with disabilities aren't here to make you feel better or worse about yourselves.

Having her tell me that my elastic, no-tie shoelaces are in fact Triathlete Laces for their quick-change capabilities from biking to running shoes and hearing about her completion of a 7-7-7 World Marathon Challenge (seven marathons on seven continents in seven days), has, however, inspired me to set my sights on a 3-3-3 this September (three 5K tricycle rides in three towns on three consecutive weekends).

Don't call me a role model.

Lifting the Cloak of Invisibility

2019-05-18T08:36:00.003-04:00

Since this post is largely about something that happened at work, I'm cannibalizing a blog I wrote for the Inclusion & Diversity blog at work, with some modifications for this forum:

There are moments.

Since having a brain hemorrhage and stroke in 2010 and becoming the poster boy for disability insurance (May being Disability Insurance Awareness Month), I keep an eye out for moments that make the whole thing, "worth it." And while I've long subscribed to the Groucho Marx witticism, "I'd never want to belong to any club that would have someone like me for a member," the sense of inclusion and belonging I've gained from my disability makes it all worthwhile.

Last Thursday, watching the Ability Employee Resource Group's [which I lead] first ever Unum's Got Ability talent show, I had a host of those moments, watching and listening not only to company employees strut their stuff, but also seeing them do so in the context of personal experiences with disability. May also happens to be Mental Health Awareness Month, so it was appropriate that many of the conditions discussed could be categorized in that ethereal and invisible realm. While the symbols of disability (e.g. wheelchairs, crutches, hearing aids, white canes, prosthetic limbs, service animals, etc.) tend to be assistive devices you'd notice at a glance, the truth is that most disabilities are hidden. I've also come to understand that all disabilities are, in fact, invisible, in that there is an unseen, unique story behind every single one -- whether lifelong, acquired, or temporary.

I was so pleased to see our performers' willingness to show vulnerability in sharing their personal experiences with disability and with our audience's ability to create a safe space in which to do so. I'm not one to lightly throw around words like, "inspiring" and "brave"" but it was gratifying to listen to and appreciate what those stories represent in our mission to create a more accepting and inclusive work environment (if not a broader society), free of bias and stigma. My hope is that we are making a place where everyone feels heard, empowered by, and invested in the knowledge that openness makes it easier for others to reach out and give and receive the support they need as well.

Totally worth it.

Without further ado, here is the video from my performance. It's about 15 minutes long:

Sustainability

2019-03-10T11:30:00.000-04:00

It's funny how sometimes things just work out. This morning I stepped on the scale and -- eyeing the 160 pounds on the dial -- was transported back to just six months ago, when it would have read 200+ and felt immovable. It had taken me years of steady eating and relatively little physical exertion (kind of my natural state), to reach that pinnacle. And now -- following my self-imposed, though involuntary, starvation diet -- I find myself at a place where I am "fixed" (see the fascinating video below if you want to know what they did to me and have the stomach {pun intended} for such things):

I now have a choice: I can either try to put my body in better, though probably still asymmetrical shape (once my small incisions heal) or succumb to my baser snacking urges and put the weight back on. While I've been able to eat pretty normally over the past week (though only liquids and "soft" foods), my stomach has not expanded enough to truly make me hungry. I'm hoping I can maintain that general attitude about food, seeing as for awhile after the stroke, I think I rationalized comfort food as something I deserved (And when you feel you deserve something, you "De Serve" yourself). Even after getting the ok from my doctor to eat an unrestricted diet, pushing the boundaries of excess amounted to eating a second piece of pizza on Friday movie night (Joe Versus the Volcano)

Like the titular Joe, I've often felt like I had a "brain cloud". Obviously, it's romanticized and a fairy tale to believe that hyper awareness of one's mortality is enough to make life so easily lived bigly. But I have said (to myself and others) that my semicolon has given me more than its taken away. That is certainly not true for everyone experiencing it vicariously, but it has at the very least given me a meaningful and authoritative voice on a subject no one else can claim expertise -- my own experience. It's downright empowering to be that confident in one's knowledge and capabilities.

How can I call that anything other than a gift?

Home Is Where...

2019-02-27T11:14:00.000-05:00

I thought maybe the best way to describe my two days in the hospital would be to counterpoint the differences between there and home. So...

The hospital is where:

they cut you open.
they stitch you up.
you are labeled, Strict NPO! (nothing through the mouth, from the Latin, nil per os) but are allowed Chapstick and wet sponge swabs to moisten your very dry lips and mouth, since you've had a tube down your throat for three hours.
Consequently, they give you IV fluids for a day until you feel like you have to pee but really can't very well.
you are constantly barraged by beeping machines and alarms that alternately remind you of the beginning of the Back to the Future theme, ABC's Shoot That Poison Arrow, or Deee-Lite's Groove Is In The Heart.
you are constantly asked your name and date of birth when being intravenously given meds, having vital signs taken, and getting periodic Heparin shots in your belly to prevent clots (normal for any bed-ridden patients) and feel awkward for saying, "That's an easy one; today's my birthday!".
you have to avoid accidentally touching the very sensitive call button on the bed so as to not be one of those patients who cries wolf but also keep track of the cable at all times for when you do need to call.
you try to keep all necessary possessions (Kindle, phone, TV remote, tissues, portable urinal/pee jug) within arm's length on the table extending over the bed,
you try to keep said table over the bed so it's reachable from the right even though it's extending from the left.
you try to awkwardly and carefully use the urinal to prove you can at least partially empty your bladder.
you call for assistance to go to the bathroom, because that's far more natural than peeing lying down and -- even though you've been, "free to move about the cabin," for nine years -- you're suddenly a stroke patient again and tethered to an IV stand as well as compression cuffs periodically squeezing your legs to improve circulation and prevent blood clots.
you pee in a "hat" placed in the toilet to catch and measure whatever you can "evacuate".
you call for assistance to be returned to bed and have a bladder scan (basically, an ultrasound Doppler radar of the contents of your bladder, to check whether you're retaining fluids.
you're told that retention over 400 ml (you've been receiving 1000ml IV fluids/hour and only peeing 100 ml or so at a time, periodically), will require a "straight cath" (you're told this is not an uncommon side effect of general anesthesia and use of a Foley catheter during surgery (inserted and removed while under)). The Foley catheter was not left in place to prevent infection and allow an easier return to mobility and routine.
you endure four straight catheterizations over twelve hours or so to ensure your bladder is emptying, even though post-catheter scans still show remaining fluid. I have to admit, while certainly not my favorite pastime, I found the catheter less dreadful than I'd remembered from Mass General but still don't appreciate the menacing atmosphere it creates (talk about performance anxiety).
you blog from your phone to let people generally know how it's going.
you catch a couple How I Met Your Mother and Modern Family reruns (they still hold up) and get a decent night's sleep (aside from vital checks every three-to-four hours).
in the morning you get wheeled down to radiology for a swallow test which shows fluids are cleanly going down your newly-opened esophagus into your stomach, without any improper leakage (tastes disgusting but wonderful to feel a swallow make its full, proper journey).
you return to bed and are told you're no longer NPO and can have some water to drink.
you get unhooked from IV fluids and compression cuffs so you're unfettered to get out of bed and make your way to the bathroom.
you struggle a bit to pull yourself up, because you have to get out the left side of the bed and the five surgical incisions cut a somewhat tight, uncomfortable (but not too painful) dotted line across your abs.
once standing, you realize your gown isn't quite tied and that you'd rather not put on a show for the State inspectors nor risk tripping and instead just stand at the urinal.
you insist on getting credit for as much "output" as possible but have one more catheter for good measure, just to convince everyone you'll be fine going home.
you eat clear chicken both and a vanilla pudding for lunch (yum! and surprisingly filling).
you take a hallway stroll with the CNA to show you're stable.
you get back into bed for a few minutes.
you continue reading Julie Cohen's new novel, Louis & Louise and appreciate all the Post-It Notes it must have taken to write.
you get the okay to dress for discharge.
you get dressed, accidentally and painlessly pulling the IV needle from the back of your right hand.
you have the IV properly disposed of.
you greet Jamie and enlist her to bulldog anyone who might suggest you can't leave (no one does).
you receive discharge orders, including minor restrictions on heavy lifting (which you don't do anyway), a liquid diet for two days, followed by liquids and soft foods for the next week or so).
you get the hell outta Dodge.

Home is where:

the heart is.

you hang your hat.

you hang your head.

you can pee freely in the toilet without measuring anything but still feel like you should and kind of want to call the nurse and tell her you think you broke 400 ml.

you put on cozy fleece pajamas.

you lie in bed and appreciate how nice it is to have all your stuff on the bedside table at your right, not rolling anywhere and within easy reach.

you are constantly barraged by the sounds of tween and teen chatter.

you enjoy a delicious birthday dinner of a bowl of pureed asparagus and zucchini soup and a cookies and cream milkshake for dessert.

belly distended, you feel fuller than you have in months, almost sickeningly so.

you're reminded of childhood, post-Broadway-show dinners at Il Vagabondo, gorging on veal Parmigiana (before anyone knew what veal was) and the best New York cheesecake in the world (before anyone knew there were any other kinds of cheesecake) and feeling barely able to hoist your gut into the car for the ride back to Jersey.

you climb the stairs up to bed, because you can and no one's gonna tell you otherwise.

you catch up on Last Week Tonight.

you sleep blissfully in your own bed, only periodically waking to Like birthday wishes on Facebook and marvel at the sounds of your stomach churning away at the bounty of the night's feast. Will you ever be hungry again?

you get up at a reasonable hour to have actual coffee and get Gus off to school.

Smoothie at the ready, you still wonder when you'll actually want to put more in your gut, all the while enjoying the fact that you can.

you make a list of the differences between the hospital and home for the few, lovely saps who still follow this blog.

the heart is.

Missing Time

2019-02-25T20:45:00.000-05:00

All I mean is that the day has flown by, not that I was abducted by aliens.

I'm writing on my phone, which will hopefully be more accurate than the one, gibberish post I remember doing in the rehab on my ipod Touch 2nd Generation. Let's see how autocorrect and predictive text has improved in the last 9 years.

So I got up at 430 this morning to take my meds with water, as I was supposed to do four hours before surgery. That left me plenty of time to shower with antibacterial soap before leaving at 630. Surgery was at 840,and the next thing I knew, it was 1140. Got to my room, I think, between one and two. Since then, I've chatted with Jamie and Gus, got to know my nurse and CNA, and watched TV . I can't eat or drink, so I'm getting pumped full of IV fluids. Since I don't have much of an appetite anyway, I haven't been hungry. The toughest thing was that my bladder was filling, but I couldn't pee. It's apparently not an uncommon side effect of anesthesia, but I eventually had to get a catheter. Aside from a sore throat and some pain around my five small belly incisions, that was the worst part of the day.

Assuming all continues to go well tonight, I'll have my swallow test in the morning and head home. Hopefully, I'll talk to you then.

TTFN

2019-02-24T10:20:00.000-05:00

Without being morbid, fatalistic, melodramatic, or pessimistic, I feel compelled to write another Last Pre-Surgery Post.

While my upcoming procedure doesn't seem as menacing as, say, brain surgery, it is the first time I'll be going under General Anesthesia since my cranioplasty. While I don't remember personally being particularly worried at the time about that, I know it was stressful for my family (as seen in this post from Jamie). So I'm pleased at least to have an uneventful procedure under my belt . It's also nice to think that -- like putting my skull back together -- taking my throat apart should yield meaningful, positive benefits. But there's that horrible word (should). There are no guarantees, and I can't bring myself to go into this next step with a completely rosy demeanor.

I'm not proud to admit but also not ashamed to say that I recently re-watched both the entire Terminator and Matrix movie series and binged Netflix's time-and-space-defying Russian Doll and The Umbrella Academy. And if I've learned anything from this endeavor, it's that you make your own fate and that no prophecy or so-called inevitability can prevent you from being the master of your own life. Because if you limit yourself to a single path, you'll inevitably ruin the franchise.

Jumping intellectual properties and following the wisdom of Han Solo: "There's no mystical energy field that controls my destiny. It's all a lot of simple tricks and nonsense."

I feel in some ways like I'm at another crossroads. I believe my original semicolon pause gave me incredible insight into the human condition, and I'd like to continue honoring that journey as I move forward, whatever that progress looks like. I think I originally looked at what was happening to me as an opportunity, a second chance, to live my life to the fullest. I think I've been doing that on my own terms and with purpose. I'm proud of that, despite the fact that -- or maybe because -- my fullest doesn't include partying with Bono while snowboarding down Mount Everest on the back of a yeti. Now I think it may be time to truly start the rest of my sentence.

If all goes well, you should hear from me again the evening of Monday, February 25th (here and/or on Twitter and Facebook). I've also confirmed Jamie still has access to update the blog. If only I could find my damn living will (not morbid).

Acceptable

2019-02-09T10:17:00.002-05:00

It's now a pretty fast moving train, so try to keep up. Before making a consultation appointment, the surgeon wanted me to have a barium swallow test, just to have as much information as possible to confirm the achalasia diagnosis. Always a fan of new pictures and more data, I was happy to comply. It was also a test I'd already experienced at the rehab -- maybe three weeks after my stroke -- so I knew it wasn't terribly unpleasant. Basically, you just drink a mixture of water and Barium and trace the path of descent via X-Ray. Unfortunately, I don't have my own scan yet, but the picture below is a pretty good representation of what they showed me on the live display (though less twisty and without any release into the stomach: just a tower of backed-up liquid):

I'd be the Abby Normal on the left.

I met with the surgeon the next day, and he confirmed that I'm a perfect candidate for the Heller Myotomy but probably not the Fundoplication. While reflux is a fairly common result of the procedure (i.e. opening the esophagus up so everything can get down to the stomach also opens the gate for acid coming back up), he feels that adding restriction back to the lower esophagus can encourage recurrence of the achalasia. Heartburn in exchange for being able to eat again feels like a fair enough trade to me, as does the hopeful prevention of additional surgery down the road.

So I'm scheduled for the laparoscopic Heller Myotomy (4-5 small abdominal incisions) on February 25, with a planned overnight in the hospital, another swallow test the next morning to check for leaks, a return home, and about a week off work. Of course, while hopeful, I don't put a ton of stock in expected recovery times. After all, when you "expect," you cross your Pee and See Tea. Yeah, I know that's a stretch. Point is, the only things that are certain in life are death, taxes, and change. And I'm okay with that.

This latest chapter has been a good test of acceptance for me, in all its forms:

There's acceptance as resignation;
Acceptance as the relatively peaceful state at the end of the five stages of Kubler-Ross grief;
And acceptance as grin-and-bear-it tolerance.

As long as we're on that topic, why is The Museum of Tolerance about anti-Semitism and racism, as if putting up with minorities is something special that needs to be taught? Isn't it actually a Museum of the History of Intolerance, in which case the goal is to foster inherent Acceptance and Inclusion, not begrudging Tolerance?

Sorry. I know I digress. But over the past six months or so, I've been told a number of times that my situation was "unacceptable." And while I respect that what I've experienced is unpleasant for others to witness, I have to make peace with it on my own terms. That's the kind of Acceptance I'm aiming to achieve.

The New Abnormal

2019-01-26T10:13:00.001-05:00

The good news is that after my endoscopy, I was able to eat fairly normally for a couple of weeks. I managed a meaningful portion of Thanksgiving dinner (including a slice of pie), and felt optimistic. It was amazing how many people came out of the woodwork to recount stories of how they or a family member had gone through a similar procedure with long term success. But have I not already established that I'm anything but typical? By early December, my esophageal spasms returned if I ate too much or too quickly. For some measure of what that means, my Pizza and a Movie Night had become a single slice, nibbled over the course of a good ten minutes, with the end crust going to the dog. The good news is that Jamie bought me a Nutribullet for Hanukkah, so the bulk of my diet is able to come from very healthy smoothies. The bad news is that I continued to lose weight -- maybe another 10-15 pounds. The good news is that I'm a little closer to my BMI target. The bad news is that the BMI is stupid. The good news is that last week the gastroenterologist was able to get me in for an Esophageal Manometry to test the movement of my esophageal muscles and esophageal sphincter/valve. The good news is that added to my unpleasant collection of catheters. The bad news is that the test diagnosed me with Type II Achalasia, a rare (lucky me, always defying the odds) disorder which causes spasms in the esophagus and a failure of the valve which opens to release swallowed food into the stomach. Weeeeee!

So what's next? Well, I'll be seeing a surgeon soon to decide between two options:

A repeat of the endoscopy, this time with a Botox injection to keep the valve open (and younger looking)
A Heller Myotomy with Fundoplication

My understanding is that the second option, while a little more invasive, is more of a permanent fix than the Botox,which only lasts six months and can create scar tissue which would interfere with a subsequent Myotomy. Ironically, the Fundoplication (fun to say) is an add-on procedure to prevent the surgical opening of the esophageal sphincter from causing reflux (which was pretty much where this adventure began). Not that I'm eager to go under the laparoscopic knife, but I'm guessing that's what's in my relatively near future.

So, once again, I'm playing a bit of a waiting game.

Once upon a time -- between my aneurysm diagnosis and surgery -- I saw a psychotherapist to help me process everything I was confronting. He talked a lot about the anxiety of my limbo state, as I waited to discover my, "New Normal."

Two years after my stroke, in the spring of 2012, I remember a friend at my 20th college reunion commenting on how well I seemed to have adjusted to my predicament. She meant it as a compliment, and I took it as such -- I was definitely getting to a point where I was settling in to life as I then knew it, growing beyond my Pre-Stroke sense of self, and even surprising myself a bit. For instance, my wheelchair had been in the trunk that entire weekend, but I'd never taken it out, opting instead to slowly shuffle around campus. So I was feeling pretty good about myself.

A few months later, seemingly out of nowhere, I had a grand mal seizure that scared the bejeezus out of Jamie and landed me in the ER. Fortunately, that turned out to be a one-off.

Six years later, I think I'd allowed myself to enjoy some complacency again, allowed myself to think I knew what I was doing, to casually go about my business.

Then came my back issues, taking me down a peg or two. Then came my swallowing issues, shrinking me down a size or six. 2018 was a year of the unexpected. I'm trying to let this year have its way with me without surprising me half to death. Is it even possible to be prepared for anything without being paranoid or creating self-fulfilling prophecies?

At my 25th college reunion, I developed a self-soothing technique when I woke Monday morning with the thought that overnight parking might be a towable offense on Sunday nights: Without quite, "...wishing for bad luck and knocking on wood...", I proceeded to paint a mental picture of what I would do if I were to look outside and discover my car gone: quite reasonably, I thought I could get a taxi or Uber to the impound lot; being Memorial Day, the lot might be closed; I could see if I could stay in the dorm one more night; if not, a hotel (I could probably take the next day off work). This technique eased my anxiety and made the act of peeking down the street to see if my car was still there far less intimidating, because I knew -- step by step -- how I would have handled the alternative. Turned out, the car right where I'd parked it the night before, and I'd peacefully planned for the worst without spiralling.

So as proud as I was to perform this anticipatory problem solving, not all hurdles are so easily seen coming down the road. Yes, some would probably have predicted -- given my age, weight gain, and asymmetrical muscle strength distribution -- that it was only a matter of time before my back or knees (or both) gave out on me. And while I appreciate application of the scientific method as much as the next devout agnostic, I also enjoy the delusion of living without fear of unintended consequences. For one thing, even Know-It-Alls don't know everything. No one predicted achalasia in my future, especially since there is no known correlation with strokes. And no one knows what the next thing will be. For all I know, the next unexpected course change in my life will be that there isn't one. Maybe that's just wishful thinking. Moreso, I have to be satisfied believing that no matter what challenges I face, I can withstand them. I believe the platitude is: "If you're handed it, you can handle it." I don't believe there's a plan for me, but I know my plan is to roll with the punches, whatever they may be. I think I've become pretty damn good at it.

Bring it on, 2019!

Pipe Cleaner

2018-11-11T13:28:00.001-05:00

Seeing as I'm writing this entry and Jamie isn't, it probably goes without saying that I did not die on the table (though I also wouldn't put it past me to haunt this blog from The Great Beyond). As much as you'd probably expect brain surgery to cause me more agita than an endoscopy, I was actually pretty nervous about "the procedure," in part because it was painted as fairly minor. I heard quite a few stories from people who'd had it done, and not a one was a tale of horror. But leave it to me to complicate something mundane. While the gastroenterology nurse practitioner specifically referred me to a hospital where a more potent out-patient anesthesia (Propofol) could be administered than the sedative they provide in the office, there was always a lingering concern that I'd have a seizure or ill-timed spasm with a camera down my throat. I was comforted some by the fact that I'd undergone general anesthesia for my cranioplasty after the stroke, without incident, and that I haven't had a conscious seizure since 2012. Nevertheless, I wasn't fully certain I'd be unconscious until the anesthesiologist confirmed it the morning of. Some people had told me they'd been in "twilight sleep," and I was pretty eager not to be aware of anything happening. As it turned out, I remember quite a bit, but nothing of the procedure itself. First, I talked to the doctor, who said the nicest thing while filling in the rest of the crew about my case. He said I was a 48-year-old man who'd had a hemorrhagic stroke and was currently suffering from dysphagia but would generally be considered a, "low-risk patient." Seriously, that's the kindest description a medical professional has given of me in years.

Once I was wheeled to the endoscopy suite (fancy, I know), the anesthesia nurse, Jay, put a menthol-coated swab on my tongue, to numb my throat, I mumbled something like, "You're gonna give me more than that, right?", and he re-assured me as they placed a green plastic bite guard in my mouth (see below). I was pleased it wasn't some kind of jack designed to pry my mouth open, because I remember how sore I was after having my Wisdom Teeth removed.

Bite down, insert camera through hole

Then Jay said something about starting the anesthesia, and I was being wheeled back to the recovery room. While I don't remember dreaming, I know as I started to wake, I was repeatedly tapping my right index finger against the blanket, because I thought I'd been told to answer a question and was trying to click on my response. I can't tell you what the question and answer were, but it was very important at the time. For Science!

The fog cleared quickly, I checked that everything that should work was (five fingers, five toes, two arms, two legs, one mouth). Soon the doctor came in to reassure me, Jamie, and my parents that he hadn't found any masses or cancer but had experienced some spasming and "resistance" at the GE junction (lower esophagus connecting to the stomach) and dilated it with a 60fr Maloney dilator (kind of a balloon in a tube, see below), "raising the possibility of achalasia." That's the only hint of any of this being neurological and/or stroke related. I may be going back in for a motility test, but that depends on how well the dilation holds. So far, it's been quite miraculous, as I've been able to eat fairly normally and feel food in my belly for the first time in months. For the sake of my BMI, I just have to try to keep my portions down, exercise, and hopefully lose a little more weight. Though I don't have a lot of faith in the reasonability of the BMI, as it says I still need to lose another 20-25 pounds.

Much to my chagrin, there was no video of the procedure, but I have inserted some scanned images below to demonstrate why I couldn't eat before and why I can now simply unhinge my jaw and slide in an eclair (not that I would ever do such a thing).

Esophageal dilator

Diagram of the upper digestive tract

On the trip in

On the return trip, after dilation

Gulp!

2018-11-02T12:09:00.000-04:00

Even though my story basically started as one big question mark, I try not to be one to wallow in speculation and anticipation. So I wasn't going to write about this until I had some answers. I also don't want to make it into a bigger deal than it is. But here I am.

Remember how I'd started living to eat and put on some weight (maybe 40 pounds) over the past eight years? And couldn't seem to find an exercise regime, diet, or age that would change that? Well, my body took matters into its own hands (as it tends to do). About three months ago, I started having trouble swallowing. It was sporadic, kind of felt like I was choking (though I never was), but made it unpleasant to eat -- for myself and others. There's nothing like having a coughing fit when you're an aneurysm/stroke/heart attack/seizure survivor. As a walking preexisting condition, I'm seen as a touch vulnerable. Even though everyone has food or drink go down the wrong pipe once in awhile; when I do it, people assume I'm having a conniption.

At first -- much as I've settled into a"new normal" that's hardly new -- I was concerned my condition was somehow stroke related.So when the little burps and periodic heartburn started, I was pleased to write the whole thing off as "reflux". My doctor concurred and tried me out on prescription Zantac.

After another couple of weeks, I didn't find the symptoms were diminishing but instead had been enhanced by gloriously melodramatic regurgitation if I ate too much. And by "too much," I'm talking about more than four or five bites of whatever solid food was in front of me.

I've switched to a low-acid reflux diet, Prilosec instead of Zantac, make sure I eat seated upright, avoid talking while eating,and restrict myself to more frequent, smaller meals in small bites, just to keep my calories up. Ensure and other so-called "nutrition shakes" have become my friends. It's vaguely reminiscent of when I was on a feeding tube with a Jevity drip, except that I never actually tasted Jevity. During those two weeks long ago, I probably lost 10-15 pounds. During my recent couple months of liquid diet coupled with involuntary Bulimia, I've lost about 25 pounds.

Yes, yes, I'm the envy of all who haven't watched me repeatedly upchuck the same three bites of food.

It is admittedly unpleasant to behold, not to mention PTS-inducing for anyone who's nursed me back to health since the stroke (i.e. my family and friends). No, it's not terribly enjoyable for me either, but I've gotten used to managing it; with the incentive that the less I eat and subsequently bring back up, the less guilty and infantilized I feel. Not that there's anything infantilizing about literally having your own sick wiped off your face by your wife or co-workers

And I'm not saying the weight loss hasn't been a fringe benefit. After having to essentially buy a new wardrobe to accommodate my weight gain, it was nice to find a more economical, one-handed-friendly belt to satisfy my fashion needs.

And now -- to finally get to the point -- I've seen a gastroenterologist who doesn't necessarily think it's reflux or stroke related but rather one of those things that can just happen to people in their, "fourth or fifth decade of life." Once again, hooray for middle age!

On Monday, I'm scheduled for an upper endoscopy, which will hopefully be able to identify and remedy the issue.

I am having a little existential angst over the prospect of a camera on a tube going down my throat but am trying to remain true to my mantra of old -- "I am open to the universe." I am Doris Day: Que será, será.

Hopefully, exciting video footage to follow.

Take luck and care with the luck you're caring for (sorry I couldn't find a better Brian Regan clip).

Like a Steel Sieve

2018-09-09T16:06:00.004-04:00

Even though I'm not playing with a full deck, I pride myself on my memory, especially my long term memory. While my short term memory is only semi-reliable (up to about six digits); and my nearterm memory is often called into question (i.e., "I told you about that a week ago, Ken!" Really?), I have a lifetime's worth of recollection stored up there somewhere, often in remarkable detail. So when I recently undertook the exercise of sifting through a box of collected detritus in my parents' basement, it was with both joy and trepidation. Over thirty years' worth of letters, cards, photos, stories, poems, and essays needed to be sorted into toss, recycle, share, or keep piles.

Admittedly, I approached this work with as little sentimentality as possible -- only glancing at most, reading items which stood out as familiar, unfamiliar, or remarkable -- recycling most to be turned into new memories for some other lovelorn and/or heartbroken soul. Gotta live in The Now, right? The memories are still there. What's the point in reliving them? The only reason I could think of to keep much of anything was to repeat the effort in another thirty years, for a laugh and to re-confirm that history transpired as I recalled it. But the goal of this go-round was simply to clear up some space in the 'rents' basement and lighten the load in my attic.

On the whole, the effort was successful: I was able to trace the history of myself as a writer -- from age eight on -- and confirm the timeline of events leading to my first and worst heartache. What proved most interesting were the stories and poems I don't remember writing and the letters I apparently didn't internalize as deeply as I thought I had upon first reading. Also how a mere glimpse of someone's handwriting can still traumatize me.Such is the value of time and age, I suppose, though it hardly salves the sting. And does leave me questioning quite how well I knew myself back when. I was angrier than I recall. No matter. "The past doesn't matter; the future doesn't matter; the present's just a matter of time." (bad lyrics to a song never written -- might as well have been shoved in a box but instead stored in gray matter, to be pulled out at moments like these).

Like I said, the standout items were often things I don't recall. My apologies to a girl who sent me a nice letter about her sophomore year of high school, along with a picture in her very 1986 bedroom (nothing untoward, I assure you), who I simply don't remember. That photo and another group picture led me to some context of the summer I apparently spent with her as a Counselor in Training. But I have no recollection of her otherwise. From now on, she will only exist in the memory of sorting through these boxes. Maybe I should have kept those.

Not that I tossed everything.

My favorite keepers:

A poem from third grade:

I Lost My Head

I went ice skateing[sic] in a hat.

The ice broke and I went splat.

I felt all around

And guess what I found?

My head in a bush

And it felt like mush!

By Kenny S.

The results from a 1990 Vocational Interest Survey (I'd just returned to college after a year away, and was trying to pick a major), showing similar interests to occupations as a:

Horticultural worker
Respiratory therapist
Medical illustrator [despite the fact that I can't draw worth a lick]
Photographer
Musician (can't play an instrument other than the "beat piano")
Advertising executive [because I enjoyed Tom Hanks in Nothing in Common and did an oral report on advertising in eighth grade]
Librarian [not unlike Knowledge Management, where I've landed]
Food service manager
Dietician [does eating to live count?]
Nurse [been on the receiving end plenty]
Occupational therapist
Computer programmer
Medical technologist
Art Teacher
Beautician (it certaining takes a lot of work to look this good)
Flight attendant
Reporter
English teacher
Foreign language teacher (three years of junior high Spanish)

I didn't have very similar interests to any occupation but was very dissimilar to

Police officer
Physical education teacher
Personnel director
elected public official
Life insurance agent
Chamber of Commerce executive
Funeral director [how many people find a match for this on Career Tinder?]
Buyer
Investments manager
Accountant
Banker
Credit manager

My takeaways from all of this were that -- in the immortal words of Lloyd Dobler -- I don't want to sell anything, buy anything, or process anything as a career. I don't want to sell anything bought or processed, or buy anything sold or processed, or process anything sold, bought, or processed, or repair anything sold, bought, or processed.

A hand drawn map of the UK from 6th grade (I remember spending hours at the kitchen table , eyeballing this and many other countries for Miss Vanwart):

A three-panel history of the travel marketplace from 7th grade (my handwriting has changed remarkably little):

Apparently, in the past, people would promise indentured servitude to merchants in exchange for a voyage to the New World; in the Present (circa 1982), "we go to travel agents, who arrange for our hotels, plane tickets, and the emptying of our pockets"; and in The Future (presumably, The Year 2000, since that was the default Future), we'd visit offices with travel computers which, "will figure out the cheapest way for us to get to and stay at our destination." The patron in my picture is purchasing a ticket on the next shuttle to Mars.

Okay, so I didn't quite invent the Internet, but I was close. Nor did I accurately predict the pace of interplanetary travel but anticipated the planned obsolescence of the human mind (in my Future, the travel computer is contemplating buying a new printer and disks with its commission, while the merchant and travel agent are both dreaming of money).

To each his own.

Ability Now!

2018-07-22T13:19:00.000-04:00

I'm admittedly plagiarizing myself here, because this post is something I wrote for my work blog, which in turn partially plagiarized something I'd previously written here. So, sorry for the redundancy. It just felt important to reiterate.

Since joining the Diversity & Inclusion (D&I) team in 2016, the Employee Resource Group (ERG) I lead at work has taken many forms:

Feeling that building a community of employees working with disabilities would be an important internal support system, we began as the Disabled Employees Network. That's still one of our goals; but once D&I recruitment began, we saw remarkable support from disability allies as well as caregivers to family members, not just employees with disabilities. Given the nature of our business (i.e. disability insurance), that shouldn't have been all that surprising;

So, in 2017 we became the more-inclusive Disability ERG. This name allowed us to pursue support of our disabled population and caregivers, as well as the education of Unum's broader employee population and exploration of how best to use our personal perspectives with disability to influence how we serve our customers;

After attending several conferences with other companies' ERG leaders, I noticed a pattern in their groups' names and agreed that we'd also benefit from accentuating the positive. We have therefore now become The Ability ERG.

Of course, we can't escape the term "disability", as it is engrained in our industry and our culture. Unfortunately, it is also a loaded term, often stigmatized and conjoined with inability, unwillingness, and entitlement. The fact that we've moved as a society from handicapped to disabled still betrays a bias that patronizes those outside the able-bodied norm as being disadvantaged. The other side of the coin tends to grasp onto somewhat saccharin euphemisms like handi-capable.

I personally embrace the term disabled, because it accurately and literally describes a switch that was turned off in my brain when I had a stroke. I can understand why people with congenital impairments (i.e. they've only known life their way) would not identify with or even be insulted by the notion of disability, since it assumes they are lacking something essential. I can see why they would prefer a term like differently abled or no qualifier at all. Why do we need labels to describe everyone? What's so scary about not fitting into tidy packages?

The last eight years of my life -- learning to live in my new form -- has been humbling to be sure but not degrading. If anything, I feel more empowered by my disability than I ever felt pre-injury. I feel empowered to become differently abled.

That's not meant to be motivational or inspirational claptrap. For one thing, I think inspiration comes from within. I don't know much, but what I can tell you I've learned from becoming disabled is that I'm capable of much more than I ever imagined or gave myself credit for. I just hadn't been tested enough to prove it. Interestingly, my department recently performed a D&I exercise to see who'd been born with the most advantages in life; and I "won" (white, upper middle class, Ivy League-educated man that I am). I'll freely admit that I was dealt a pretty good hand. In some ways, that privilege could have left me ill prepared to handle my recent challenges. But it's not just the cards in your hand; it's how you play them. I may have started with four aces, but it's The Joker that won the pot.

Jokers are wild.

To recognize our latest rebranding, this week we held our first annual Ability Night. This year was a wheelchair rugby exhibition, pitting an experienced team of quadriplegic players against a visibly able bodied team of company employees. The general goal was to highlight the capabilities of accomplished athletes who just happen to be in wheelchairs.

By losing quite definitively, the able bodied team also helped demonstrate how living with a disability is very much a honed skill, not a disadvantage.

Stuck in the Middle with Me

2018-05-06T16:18:00.001-04:00

It's right in my blog header, but in case you haven't noticed, one of the ways the semicolon behaves metaphorically for me is that it usually appears in the middle of a sentence (i.e. middle age).

Middle age is fraught with uncertainty, compounded by what I call, The Second Child Effect: By the time we raise our first child for a couple years and/or live the first half or so of life for about thirty years, we delude ourselves into thinking that we've, "got this." Nothing's gonna surprise us or pull one over on the professional parents and adults we've become, right?

Of course, that's just idiotic. But most people, including myself, are idiots.

My realization of the relationship between this fantasy and reality has mostly manifested itself physically:

1987: The earliest example I can recall was when I was around seventeen (not middle-aged but constantly in existential crisis), while subbing in one of my father's weekly doubles tennis matches (it was always exciting get called up to "The Show"). I dove (impressively, I'm sure) to volley a passing shot at the net and landed on my hip. Thinking nothing of it at the time, I woke up the next morning a little sore and within the next day or so discovered I could no longer fully bend my leg at the knee. My chiropractor (yes, I had a chiropractor at 17; thanks, Mom) explained that your hip is connected to your hamstring, so knocking my hip out of alignment had stretched my hamstring to the point that I could no longer bend it. "Ridiculous!" I thought. "I've been throwing this body around like a rag doll for seventeen years, and it's never made a peep of complaint!" Then he adjusted my hip, and I was fine in a day or two.

2000: For my thirtieth birthday, I went Cresta Sledding, which is basically just blade sledding on a ski slope (you even get to ride the lift up). That and parasailing are as close as I've come to Extreme Sports or adrenaline even. For some reason, I was the only person who seemed to enjoy the sledding (Jamie hit a lamp post). But, sure enough, the jumps and bumps left me with a sore back the next morning. Again, I resented this bag of bones for not properly weathering the storm. Wasn't it bad enough I had the stigma of 30 hanging over my head?! And, again, the chiropractor (not a paid promotion from the ACA) set me straight.

2008: A year after Gus taught us that a good portion of the knowledge we'd acquired from his brother was virtually useless on him, I learned that middle age could hurt from no cause other than living. During a family vacation in Vermont, I found myself lying back-down on the condo floor and an ice pack, legs resting on the seat of a futon couch (per the chiropractor's suggestion). All I had done was drive a car across New England, and now 38-year-old me was lying next to his 66-year-old father, both of us on ice packs with our legs in the air; because the rotation of the Earth had thrown our alignment out of whack.

Of course, this was pre-stroke, so even though my back seized a bit every time I bent over, at least I could get on and off the ground without much effort or fear of falling.

2018:This week, I suffered my most debilitating non-injury I've ever had. Even saying, "suffered," or that I "injured myself" seems to give the pain more credit than it deserves. "Injuring yourself" somehow sounds active and courageous. Now, my stroke has taught me how to safely handle myself in an imbalanced world, but it's taught me next to nothing about pain. While in the hospital, I was regularly asked to rate my pain on a scale from 1-10 and smiley face to weeping frowny face (see below). I think the highest I ever went was four, and that was after having my skull taken apart and reassembled, with only Tylenol to relieve the pain. Jamie says I'm stoic. I wasn't being brave or holding back. Mostly, I think I just took the frowny face at its word: "Was this the worst pain I could imagine?" No, thank god. It was a four. Meh.

But this Thursday, just following a meeting, ironically, to script a Virtual Reality production about a woman who injures her back falling off a ladder (nor that's injuring yourself), I discovered that I could barely bring myself to even lean forward to stand. Had I fallen off a ladder? No. Had I leaped in front of an attacking mountain lion to save a co-worker? No. How did the mountain lion get in the building without proper ID? Did the lion work with me and I'd just never noticed? Yes, that's entirely feasible.

But the truth is that my back had been bothering me for about a week, I hadn't gone to the chiropractor since the last time my back tightened up, and I simply sat oddly in the chair, tweaking something. Every time I tried to stand, I was stabbed in the lower back, an easy 8. No mas, please. My left arm started shaking; because that's what it does when my brain identifies pain, sour, or itchy. That's just what happens when neurons fire in a half empty room -- ricochet. I either shake on the side I can't control, or I laugh. Laughing has actually been my odd, lifelong response to pain. Why is there no laughing hysterically face on the chart?

I did manage to stand and shuffle out the door and hug the wall, to the horror of my two colleagues. I felt sweaty, and they said I'd turned gray. My manager, Ben, asked if I wanted him to get my chair and wheel me back to my desk. A lot went through my head after that. Of course I did. But pride, dignity, things like that. Then I remembered a day in the rehab when my pants fell down during group physical therapy. I know I told someone I that watched my dignity sink below the horizon that day, like the mast of a ship. I realized then that in the grand scheme, a moment of embarrassment meant nothing. I let the ship drift out to sea. I've also just returned from a conference where all we did was talk about disability. For me, that's a lot of acceptance and ownership of what I've lost. It's also a matter of taking pride and ownership in what I'm able to do.

So I gasped out, "No, thanks," refusing to backslide (aside from at the airport, where getting a mobility assistant is best for everyone, I'd been wheelchair unbound for eight years), and inched slowly along my good friend the wall. Rounding the corner, I could now see how far away my desk truly was. Not wanting to hold up my co-workers anymore, realizing it could take me hours to walk there on my own, realizing I might not make it there at all on my own, remembering my dignity adrift and that every humiliation is an opportunity to educate, I agreed to the chair. Sitting turned out to be much more comfortable than standing or walking (somewhere from a two to a four), and I was pretty easily brought back to my desk. Once there, I managed to get myself collected and call the chiropractor. Turned out they didn't open until 3:00, and it was only 1:30. I decided I'd get as much work done as I could and then head straight there. At around 2:30 Ben asked if I wanted him to wheel me out to my car, and I agreed (though I was hoping my back would loosen up enough to walk.

Fortunately, getting into the driver's seat wasn't too painful, and I hoped my back would be better still once I reached the office, assuming they were open. As it turned out, I met the doctor in the parking lot, he tried to help me inside, and we both decided it was best for me to get back in the car and head home to rest until Friday (at that point my back was at around a seven). Lest you think him callous, he did get me an ice pack. He did the best he could under the circumstances, as did I.

Once I arrived home, we realized how fortunate it was that we'd held onto my old wheelchair and the ramp into the house. The ramp has also been handy for the delivery of new appliances. Jamie managed to get me into the Family Room and my recliner. I'd been told to lie down, so it was either the recliner, the Living Room couch with no TV, or my bed upstairs. And we didn't build a ramp or elevator to there.

So in the recliner I stayed for the rest of the day and night. TMI, it was much like being back at the rehab -- everything brought to me, then removed, cared for but degrading. We upcycled a urinal (a never-to-again-be-used water bottle), and in the morning I was loose enough to ease myself up and out of the chair to the bathroom and beyond. Jamie wheeled me to the car, then into the chiropractor's office for an adjustment. I even got the pain relieving cold laser treatment. That was a new one.

I spent one more day and night in the recliner, finally changed my clothes for the first time in three days (dignity? What dignity?), and managed to get up the stairs to bed. Today (Sunday) I'm a little better still, obviously okay to sit at the computer (only a 1-3, depending how I lean) but still a good six when I stand up, bend over, or weight bear too much.

As much as I'm writing all this off to aging or that spectacularly-achieved old tennis injury, I shouldn't give my wonky brain short shrift. Maybe my heightened powers of empathy contributed. Even though my back had been giving me trouble for years prior to the stroke, my hemispherical imbalance definitely forces my right side to overcompensate and throw me into misalignment. Not to mention that my left side's inability to turn on a dime doesn't help pick up the slack when I'm nursing my right.

Needless to say, I'm going to start going to the chiropractor monthly as a preventative measure. I may be stoic, but I'm not a masochist. No more frowny faces, please.

Retaking the Low Ground

2018-03-04T11:23:00.000-05:00

Along with more aspirational goals of more broadly circulating my book proposal (which I finally finished at the end of last year!) and embracing my role as a disability and diversity rights advocate, my reasonably traditional New Year's resolutions mostly center around fitness, nutrition, and weight loss. I did pretty well last year becoming more active (mostly the tricycle) and eating better (or, at least I started seeing a nutritionist), but I'm still portly (I also like to throw around the word corpulent).

I've started this year continuing those healthier habits (on a stationary bike for the winter, along with some snow shoeing), but the weight loss does not want to come. I know I was spoiled growing up with the kind of metabolism that allowed me to eat whatever I wanted and not gain a pound (to the point that I was almost constantly chided by Jewish mothers and grand mothers about how I needed to put on some weight. "Wasting away," I was. And I'm not a tall man. Then there was a moment when I was visiting a patient at the rehab a few years ago when a woman in a wheelchair looked up at me and said, "Well now, you're a big guy." I did stop myself from retorting, "Everyone looks big from down there, ya old biddy." But I'm certainly not as diminutive as I used to be. My BMI is, "Be More Immense".

As much as my gravitational pull increases, I'm also striving to defy gravity and take back the floor from the fear of falling. That means I've finally added to my exercise routine getting down on the ground, stretching, and getting back up again It's nice seeing the world from that different perspective in a reverse Dead Poets Society kind of way. I've also just taken my third bath in eight years. I do love a good bath and have missed it. I'm still working out the safest techniques for insertion and extraction but wouldn't say no to a walk-in tub.

Unmasked

2017-10-22T12:10:00.000-04:00

For the past three or four years I've participated in the annual Maine Brain Injury Conference as a speaker and/or panelist, so it was nice this year to simply be an active audience member. I contributed plenty to the Return to Work panel discussion and had a chance to enter the realm of the visual arts realm through the Unmasking Brain Injury Project , in a workshop led by members of my own Brain Injury Voices (raffle tickets still available for the November calendar raffle).

I haven't decided whether to submit my mask to the Unmasking project or even frame it, but I figured this was as good a time and place to put my mask on display and describe its meaning (the final step in the mask making process). The story my mask (below) tells is fairly straight forward:

I removed a portion of the right temple to -- very literally -- represent my craniotomy and stroke, showing the lost section of my skull and brain. I made a point of doing all the cutting without assistance, one handed, often holding the mask between my knees.
I reapplied that extracted piece of my head and decorated it, representing both the stickers the boys used to decorate my craniotomy helmet as well as how much my injury has supplemented and enhanced my strategic capabilities and my capacity for empathy.
I covered the inside of the mask's eyes with a thin layer of cloth to represent both seeing life through a different lens, as well as a through a constant veil of fog.
I also poked holes in the nostrils so I can breathe (who makes a mask without air holes!?).
I left the rest of the mask undecorated, partially to avoid making a mess of colors or indecipherable images but mostly because we are all blank canvases and my story is not yet complete.

Can You Identify With This?

2017-09-23T13:09:00.000-04:00

I can't decide if this is a Very Special Episode or merely incredibly self-involved. Either way, it's an extension of White Guilt. Or Jewish Guilt. Which is stronger?

I have lived the majority of my life with the privilege of being a straight, white, well-educated, upper middle class man.

The only hitch in that identity has come when filling out demographic forms: I've always checked off "Caucasian" as my race, mostly because "Jew" is not offered, and I've always been afforded the perks of being part of the white hegemony. I guess ethnicity would be a more precise qualifier. I'd glady color in Jewish . If the question delved more into religion, I'd struggle. I may be a Jew and Jewish, but I am hardly Judaic. I remember learning about The Holocaust in school, I asked myself questions about what it meant to be Jewish and how far I would go to to reject or deny my heritage in order to save my own or others' lives. Ultimately, that probably has less to do with my definition of what a Jew is versus the definition held by those who hate me simply for who I am. I probably have more qualifiers than they do. The few times I was in the minority (as a Jew in England, Alaska, and Maine), it was primarily embraced as a novelty and never uncomfortable, except when regaled with, "I once knew another Jewish fellow..." stories. I also once infiltrated the Oral Roberts University bookstore with another Jewish friend and felt like we had eyes of suspicion on us from campus staff and security, as if we might suddenly break into a Fiddler on the Roof medley. I suppose some would argue that if I don't want to be ethnically profiled, I shouldn't go walking around with this nose.

This contemplation has all surfaced now because we're going through a crisis as a country, most recently accentuated by the white supremicist rally and counter protests in Charlottesville, West Virginia. President Trump couldn't help himself from saying that the violence in Charlottesville was on "many sides," which I think he truly believes was an insightful way of acknowledging that conflict only arises when there are opposing viewpoints. If only we had a single opinion and everyone agreed with it, things would be fine. Trump doesn't think unity is agreeing to disagree or agreeing that hate is wrong in all situations, but that if we all agreed with him, there'd be no dispute. The man wouldn't know insight, nuance, and self-awareness if they beat him over the head. I also think he says such things for the potential opportunity to grandfather his vindication, as he did with Antifa's violent response to Alt-Right rallies in Berkeley.

But back to me and my identity crisis: I've been promoting a disability self-identification campaign at work as part of the Diversity & Inclusion effort I'm helping lead. The value of varied perspectives on the world and the comfort and freedom to espouse them have long been principles I've held; but -- as I've been saying -- I would never have lumped my milktoast self in with a "diverse" crowd.

Now -- as a person with a disability -- I have become a member of the the fastest growing minority in the world (so says the U.N.). Asking my co-workers to choose that identity, however, has proven challenging (even if for the larger purposes of demonstrating how the company embraces varied viewpoints and enabling support systems and increasing empathy for others experiencing similar challenges). For one thing, disability has a stigma. Accepting your disability, to some, implies a surrender to weakness. I prefer to think that accepting who you are over who you were or who others would like you to be demonstrates a strength of will that supercedes any loss.

The semantic label of being "disabled" is also challenging, as are the implications that it should be the goal of every person with a disability to be re-enabled or "fixed". It's been suggested to me that, taken literally, disability applies to those who've suffered an event which removed certain abilities. Thus, someone with a congentital impairment, who has never known a life with, for example, sight, hearing, or bi-pedal locomotion, is not in fact disabled but rather lives a full life of being differently abled. I know that sounds like an overly-PC or euphemistic term, but I'd argue that it should be the goal of someone, like myself, who has become disabled to also find the power and satisfaction of becoming differently abled. In large part I say that because I'm tired of people drawing lines in the sand and calling it their Identity. It may be part of who you are, but it isn't all you are. Identity is an amalgamation of characteristics (including race, ethnicity, gender identity, sexual orientation, age, abilities, etc.), not a single criteria . And Identity should be flexible enough that if you find much of it centering around hate and/or violence, you can choose another one.

To wrap up this diatribe, I want to address a huge part of the current tension in the U.S.: racial profiling.

An unfortunate piece of that practice is related to law enforcement, as exemplified by the practices of Sherif Joe Arpaio, as well as President Trump's decision to pardon Arpaio's racist behavior as perfectly acceptable.

Profiling extends to a ridiculous tool floating around Facebook, allowing you to find out, "your DNA ancestry," based on your photo.

On a lark, I decided to upload this picture of Sherif Joe and see what racial profiling said about him:

To my delight, I received these results:

This unscientific experiment and exploration of Diversity& Inclusion have shown me how we are more similar than different: many minority experiences come out of self acceptance and the choices of how, when, and whether to share that identity with a society that may not be so tolerant. We don't all need to just get along. We need to get a clue.