Sunday, November 11, 2018

Pipe Cleaner

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.
Image result for endoscopy bite guard
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). 
ConMed Esophageal Balloon Dilators
Esophageal dilator

Diagram of the upper digestive tract
On the trip in

On the return trip, after dilation

Friday, November 02, 2018


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 serĂ¡, serĂ¡.

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).

Sunday, September 09, 2018

Like a Steel Sieve

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.

Sunday, July 22, 2018

Ability Now!

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.

Sunday, May 06, 2018

Stuck in the Middle with Me

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:

1987The 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.
Image result for pain scale faces
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.

Sunday, March 04, 2018

Retaking the Low Ground

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.