Wednesday, December 21, 2011

What If

This one requires a little bit of context and a caveat for Unum employees: stop if you’ve heard this one before. I was very kindly asked by our Corporate Communications area to write a piece reflecting on my, let's say, "situation". I was happy to do it, and what I put together follows, along with the headline and bookends written by my colleague in Corp Comm (what I've decided to call it). She has a blog too. I happened to go into the office this past Monday -- the same day my story hit the intranet and the corporate newsletter, as well as largescreen monitors throughout the building lobby -- as if anyone really needed to see my face that big.The response has been very nice, only encouraging my continued return to work. And the link all the way at the bottom has a really nice picture of Gus and me.

A story of hope and healing from one of our own

How the work we do and the culture of our company made all the difference for a colleague

Monday, Dec. 19, 2011

By Ken Shapiro, project manager III

When I started working at Unum approximately five years ago, what I knew about the company was limited to: they’re a major employer in the Portland, Maine, area, they sponsored the fireworks-spouting lighthouse which would sprout up behind the centerfield fence when the Portland Sea Dogs hit home runs, and they sold disability insurance.

My knowledge of disability insurance was limited to my wife's maternity leave. This explains why building business acumen has been on my development plan for many years running. I would not, however, recommend how I've gone about achieving that goal – by needing my disability coverage more than I could have predicted.

I suppose we’re in a business of “what if.” Not that we want to be fearmongers, but five years ago I would never have imagined how honored and grateful I’d be to be both an employee and customer of our company. As an employee, it gives me great pride to know how important our work is to the lives of people going through some of their darkest times.

So how did I get here? Almost two years ago, I learned I had been growing a cerebral aneurysm for as long as 10 years. Approximately a year ago, after brain surgery to remove the aneurysm and a subsequent stroke which left me hemiparesic on my left side, I began my long road to recovery and the trek through physical rehabilitation to a return to work in a role which fortunately does not call upon areas of my body heavily affected by my stroke – meaning I spend most of my working time at the computer and have found adaptive equipment (such as the dictation software enabling me to write this) which aids my efforts.

As much as I've come to appreciate the value of my short term and long term disability policies, I've come to appreciate even more the support rendered to me by my friends and co-workers in the Benefits Center Learning and Performance Development area.

They have offered incomparable good wishes and encouragement to (literally) get me back on my feet and back to work. My disability benefit specialists and our in-house return-to-work staff have also provided support which made the transition from hospital room to home to office that much easier.

What was an incredibly difficult year for me and my family was ultimately made enriching through the generosity of friends and co-workers and an ever-extended community of kindness. I've seen this in visits to New England Rehabilitation Hospital of Portland, through simple connections on Facebook, as well as through comments on the blog I use to chronicle my experience.

I hate to claim mine as a cautionary tale, since there really is no measure of prevention involved. I am just one of the lucky few granted an opportunity to reflect on the ways our lives are interconnected when “what if” happens. Yes, I am lucky; in part because I’m coming out the other side and also because I get to say this:

Thank you for everything you do to help people like me. Know that even if you don't provide direct services to the people who depend on these benefits, what you are doing makes a difference.

Read more about Ken’s journey on the New England Rehabilitation Hospital website.

Sunday, December 04, 2011

At War with the Portuguese Man o’ War

I've long been at odds with the jellyfish in my head(or is it a Jell-O mold?)  -- though never the organ itself until the past year – only the various, more ethereal incarnations: the mind-brain (good for over thinking), the heart-brain (good for over feeling), the soul-brain (good for over philosophizing). There are probably others as well – all of which, when lined up end to end, equal "me".

My stroke has certainly helped me appreciate my physical brain, but it's also made me wonder whether we've put too much faith and reliance in this one Grand Poobah of our bodies. Sure, the same argument could probably be made about our hearts or other vital organs. But our brains are their masters as well.
When it was suggested to me that I had around a 15% chance of having a stroke during or following the surgery, that information was coupled with the idea that a stroke occurring in a somewhat localized area and in controlled environment would still be preferable to a global episode affecting more areas of my brain or a hemorrhage which would require immediate intervention under circumstances that didn't necessarily allow for immediate intervention(i.e. outside a hospital).
I also neglected to translate the positive spin on a localized, right hemisphere stroke – spin which described mostly a "physical weakness on my left side” into the inability to use my left hand and/or the need to learn how to walk again. My own ignorance of what to expect has caused me to draw a somewhat incomplete picture here of what I've experienced. My progress bar I think does an adequate job of answering most of what you might expect to combat as part of stroke recovery.

This entry is more about the laundry list of less expected effects, chock full of good medical terminology:

This one's the whole ball of wax. With the right side of my brain no longer able to serve its standard functions, neurological connections have to be rerouted, especially when it comes to left-side motor function. Basically, without my left brain and remaining healthy portions of my right brain picking up the slack, I wouldn’t make any kind of recovery. Initially, this meant doing a lot of "visualizing" while sitting in bed and trying to move my left side. This activity involves a combination of imagining how I used to do things, mirroring with my right side what I would like to do with my left, holding my breath, clenching, and doing long division in my head. If that doesn't sound easy, that's because it isn't, especially when you’re used to your body just doing what it's told without any effort. Fortunately, now I don't have to concentrate that hard to do quite a bit with my left arm and leg.
So much for the big stuff. Yes, our brains are the control center for conscious use of our muscles. But there's also a lot of hidden, autonomic work going on. I know I for one am glad I don't have to think about making my heart beat or about breathing. That said, I most likely had my heart attack at or near the moment of my stroke – so there is some connection there. But, again, I'm lucky that ship righted itself.
But here are a few less common consequences of my stroke – due to lapses in my cerebral control center:

Just as my seizures -- pre-stroke -- were random electrical discharges causing déjà vu and songs to play in my head, clonus is an excess of commands being sent to my muscles, causing spasms. I take some medication to calm them, but I can't say it's made much difference.

When I first started to experience clonus, I had recently arrived at the rehab and had very little–to-no conscious control over my left side, so seeing any activity – even random and involuntary – was nice. What I learned soon after was that the clonus wasn’t entirely random—it could be triggered by certain activities. For instance, putting weight on my left toes would start my left leg shaking. I remember the first time I walked in the parallel bars with my Wednesday  PT, Shelly – my clonus kicked in pretty heavily and she remarked on the fact that not only did I have clonus in my leg, but also my glute. "I've never seen butt clonus before," she said. In my experience  physical therapists are very butt centric. The answer to many PT questions is, "tighten your butt”.
Just as those initial spasms gave me some solace that my body still worked, I've found it calming to think that tremors tied to tired muscles or other unrelated activity (such as yawning) represent connections being rebuilt between what's left of my brain and my muscles. And it isn't always unrelated – for instance, when I consciously try to lift my left arm, that motion is often coupled with some shaking. So even if too much energy is being pushed through, at least some of the right connections  are  being made. As for the truly random, something like yawning in the mornings will get me to extend the fingers on my left hand in a way that I cannot voluntarily. It's somewhat magical and at least shows hope that one day I will consciously be able to control my fingers again.

Apparently, our brains are constantly making subtle calculations about how much muscle tone to automatically apply to certain areas of the body simply to compensate for gravitational pull. I did not learn this until I started to have some pain in my shoulder. My OT quickly identified that I had a subluxation – a slight dislocation in my shoulder – simply because my brain was not able to hold the joint in place, along with the fact that my muscles had atrophied from lack of use. I wore a sling for awhile but have now developed enough strength to pull it into alignment. I just have to pay attention not to let my arm hang.

windchill factor
last winter was very hard in part because I have become much more sensitive to cold than I used to be. It's not that my body is no longer able to regulate my actual temperature; I'm still warm-blooded. However, I get chilly very easily. I equate this with an internal "windchill factor," since it isn't necessarily tied to the actual temperature, just how it feels.

motion sickness
This has improved over time, but my first trips home from the rehab were especially hard because I found that the drives, especially if there was a lot of stop-and-go traffic, would make me queasy. Hard to believe that just two years ago, I voluntarily went on Everest in Disney World. In retrospect, it's even more horrifying because I soon after learned about my aneurysm. I can assure you that you won't catch me on any roller coasters anytime soon, not even Goofy’s Barnstormer.

Still, my mind-brain wonders whether we might do well to invest in some alternative control system. Or this.

Sunday, November 13, 2011

Progress Bar

I love progress bars. And, yes, I happily acknowledge how much of a geek that admission makes me. I enjoy installing software just to watch the progress bar fill up. And I like installing updates even more, because it feels like getting something for nothing and might include a meaningful and useful change to a program I already like. What I cannot abide are stalled progress bars, circular or otherwise non-progressive representations of progress, meaningless updates which take a ridiculously long time (I'm talking to you, iTunes and AOL software, circa 1995), and forced reboots.

Back on the "Why I like progress bars" side, I'll just say, how often do you get to gauge and garner some level of accomplishment simply by sitting and watching something fill up? I'll tell you how often -- not very. In my current circumstances, I would love for there to be some indicator and background algorithm telling me how close to being "done" I am. Unfortunately, there's no such thing. My rehabilitation is as much art as it is science, and no one can say how far down the road I am. This particular time is especially significant for me,  now that I've passed the one-year anniversary of my stroke. I’ve heard anecdotally about people who suffered a stroke and then were "fine after a year”. But I have also heard anecdotally about people who continued to see improvements five or six years after their stroke. I have looked to the arbitrary one-year mark as a moment of potential miraculous recovery, and at times – even while working very hard at my therapy – hoped that time alone could heal my body. As with most things, I think the truth lies somewhere between the extremes of  wishes and hard work.

So, progress bars . I realized that even though the blog has been a great tool for reporting on news or our mental states, I haven't really been able to give you all much of a sense of the every day. Thus, please take note of a new feature toward the top of the site. You won't see it in the e-mail edition, only at the blog  site itself. It's a progress bar of sorts, just to give you a sense of where things stand in some key areas, most of them pretty every day. My apologies for anything that's a little too every day (i.e., potty related), but it's all pretty damn important. Because most of my meaningful progress has and will come in moments -- moments where once ordinary and seemingly insignificant activities become extraordinary and then once again, hopefully, become ordinary. It's useful for me to see it in a broad swath – a year at a glance – because it truly shows how far I've come in a relatively short time, as long as that short time has felt.

Sometimes my progress is depicted by powerful and empowering moments I've been aiming for; sometimes, the goals are less tangible. Edgar Wright(writer/director of Scott Pilgrim vs. the World) wrote on my Scott Pilgrim poster, "Achievement Unlocked". If you don't know what that means, you have not completed your assignment of seeing the movie, you have rarely played video games, or both. I am not a hardcore gamer, but here's my interpretation: In many games, when your game character (or, "avatar") completes a portion (or, "level") of the game, you may "unlock" new powers or abilities (or challenges)for your avatar. While not all progress is that tangible for me, it has often been an apropos analogy for my most significant achievements. For instance, getting upstairs in the house (literally, a new level)unlocked the power to shower, help put the boys down to sleep, and to sleep in my own bed. But most accomplishments are more subtle stages in my evolution than breakthroughs. Hopefully, my progress bar shows how I've continued to evolve and improve. Sometimes I feel it, sometimes it all blurs together. Sometimes I have to remain cautiously optimistic – in part because too much optimism can lead to overconfidence, which can lead to hazards. Just an example – I went out with friends from work recently and climbed onto a barstool. At the sight of it, I questioned whether it was the best place for me to be sitting, but I was also feeling pretty secure in how I'd been handling sitting and standing lately. When a friend I hadn't seen in quite a while walked into the restaurant, I attempted to get down from the stool and greet her. However, I didn't properly estimate the distance to the floor or the amount of swivel to the stool. The next thing I knew, I was tipping backwards – fortunately into her arms (thanks, Melissa! Nice catch.) This was a bit of a bruise to my ego, though much better than the bruise I would've received on my butt or possibly my head. It was just a lesson to go at my own pace and remain vigilant in new situations, even if they feel comfortable and ordinary. As comfortable as I'm becoming in my own new skin, it's important that I not grow complacent. I can't even bring myself to make the "Now" column in my progress bar truly green – I had to choose a green that was still a little hazard yellow.

Since the theme of this entry involves some visual aids, I'd also like to present some before-and-after images of my head – CAT scans taken prior to my surgery and one from this past June:
this was from July2010. You can see the aneurysm on the right side, surrounded by some calcification.otherwise, what you see is fairly normal "grey matter".

this is a CAT scan from June 2011. You can see a bit of a lens flare on the right. That's caused by clips left on some arteries after the removal of the aneurysm and its surrounding calcification. The black areas on the right were pretty eye-opening and a little sad for me –the area which had been directly occupied by the aneurysm is now filled with cerebrospinal fluid. Other darkened areas on the right side of my brain represent damage caused by the stroke. So you could say I'm not dealing with a full deck.

This was from August 2010. It shows more of an arterial blood flow perspective, but you can see the aneurysm, brightly on the right side.

this is June 2011. I take away less bunching on the right and improved bloodflow overall

this is also June of this year. The takeaway/oddity is that I have a hockey mask in my head.

I like this one not only because it clearly shows the clips in my head, but because the profile is distinctly mine – there was definitely no mix-up with the medical records.

Tuesday, October 18, 2011

Train in the Distance

This post was composed primarily during two train trips over the weekend, although I haven't been able to editit until now (Tuesday). In the beautiful and elusive words of Paul Simon, "Everybody loves the sound of a train in the distance; everybody thinks it's true." He goes on to explain:"What is the point of this story? What information pertains? The thought that life could be better is woven indelibly into our hearts and our brains." Basically, "the grass is always greener…" Only more poetic.

Mind you, it's a song about a failed relationship, but it's really about hope and romance.

I'm reminded of it because I am on a train to Boston, for the first time since Jamie and I took a train toBoston for my original surgery (not the sequel). It's a big deal for me now, not just because of those memories, but also because this is the first time I've really set out anywhere on my own since my stroke. So it's a step into the void for me and for Jamie. It's certainly for a good cause -- my friend Jamie Boy's (Jaimz to me)40th birthday. We were going to trek as a family, but it was just more practical for me to go by myself. Not to mention important for me to try new things. Yes, it's a reminder of my limitations -- I'm slow, I can't afford to be jostled in a crowd, I need an easy path up to or down from or through train doors, I can't walk on a moving train. But it's also a nice reminder of how I used to feel every time I got on a bus or train to New York (when I was"commuting" from Maine to New York, circa 1996-2001). I’d think about just riding and riding and seeing where the ride took me. It wasn't about being unhappy where I was -- it was about possibilities. Everybody loves the sound of a train in the distance. I learned recently that Siddhartha -- the original Buddha – named his first child "Fettered”. It's somewhat callous, but true that choices we make regarding family, career, home ownership, etc. can bind us as much as they ground us and enable us to experience things we never would, floating through the ether without them. No, I'm not comparing myself to Buddha, much as I would like to be on a path to enlightenment. My recent journey, including this trip, has focused on regaining freedom and independence. I'm reminded a little of an essay contest I entered in high school – sponsored by the local branch of the Optimist Society -- with the theme, "Freedom: our Most Precious Heritage." I won, which If ound somewhat amusing at the time, and even more so now, with an essay which argued that freedom is a privilege, not a right. Back then, and I guess now as well, I resisted ideas of entitlement. So as fortunate as I've been in my life to live with so much freedom available to me, I appreciate the privilege even more now that my freedom has been restricted. I'm still not sure how my argument falls underthe umbrella of optimism, but I've never considered myself much of an optimist. Even though I probably could be, I don't think of myself as a pessimist either. More of a realist. In answering thequestion, "Is the glass half full or half empty," I will usually be difficult and say, "it's half full of air".

Time has passed. I'm now on my return trip to Maine. What adventures have you missed? First, matzoh ball soup and cheese blintzes at S&S(Jewtastic!)on Friday night with Jamie and his wife Stephanie, a good night sleep, Saturday brunch (chicken hash Benedict) with Jamie Boy's family, mini-golf at Kimball Farm, including getting caught in the rain (how's that for romantic?), board games back at Jamie andStephanie's (Apples to Apples, anyone?), Indian takeout, homemade cakes a la Stephanie, a home-cooked pancake breakfast Sunday morning with Jamie, Stephanie, and Jamie'sbrother Rob's family. Then lunch with my very real virtual friend Jeniene, before hoofing it to the train station. I've walked more in the last two days than I have in a year. Imean, I've walked plenty for therapy, but this time I was actually going someplace. So, in summary--good company, good fun. What more could I want?Jaimz, I could never have asked for more in a best man or in the man I would later marry (as in, I officiated Jamie and Stephanie'smarriage in 2009). the train's stuck behind a broken down freight engine. So it goes.

So I wouldn't call this weekend a grand adventure in the traditional sense. No lion taming (though thecircus was in town), no bushwhacking (though I did hike through what at times felt like a rain forest on the mini-golf course), no epic battles (though Jamie Girl and the boys did watch The Princess Bride in my absence). And I will get the girl in the end. What I did have was the adventure of testing my boundaries a bit and discovering that they're not insurmountable. Makes me want to stick my thumb out and hitch a ride at the next station. No, Mom, I wouldn't actually do that. Romance has its limits. And I'm a realist, remember?

Wednesday, September 21, 2011

Exceeding expectations

I went back to the rehab today, though under very nice circumstances: I was given an award for "Overcoming Barriers and Exceeding Expectations". I prepared a speech, but the other recipients didn't give one, so I kept mine in my pocket. Fortunately, I have this bully pulpit from which to spout. So here is my speech (in italics):

When I first heard about this award, I was honored and humbled.
I have jokingly referred to it as being voted "Least likely to wander the halls at” three in the morning”. Also as “the award no one ever wants to be eligible to win.”

Once I had a little more information, I was even more humbled to be selected. The idea of overcoming barriers is hardly uncommon here.  I think everyone at New England Rehab Hospital has his/her own barriers to overcome. That's pretty much why we’re here. Keeping that fact in mind,  I feel unworthy of being singled out.
As for “exceeding expectations”, the only expectations I'm honestly concerned about at this point are my own and my family’s. I know I'm not done yet. I haven't reached all my goals. What's truly unexpected is that I've been granted this opportunity to thank everyone here who has helped me get to this point. I know I have come a long way – look, no helmet – and I could never have done that without you. It's too long a list to name, including all my doctors, nurses, CNAs, therapists,  my friends, and my family, especially my wife and kids -- who have acted as therapists and coaches and cheerleaders as much as anyone. It's hard to see a rehab as a home away from home, but when I first arrived here after surgery in Boston, even though I didn't really know what I was in for, I was happy just to be back in Maine. When I went back to Boston for my follow-up surgery, I was thrilled that returning  to New England Rehab was part of the plan, to try and finish what I’d started. And when I was finally ready to go home, I was glad I'd have the opportunity to return here for outpatient therapy,  if only to stay connected to this place. You all helped make what could have easily been written off as the worst year of my life more than just tolerable; you made it enriching, enlightening, and meaningful. Thank you so much.

Gratitude was mostly what I wanted to convey, so the only thing I can think to add now is extra reflection, as I am prone to do. For one thing, three other people received this award, which was indeed a reminder of how good I've had it in many ways. Also, it was a reminder of how different everyone’s challenges are. I said recently to a friend that strokes are like snowflakes – no two are exactly alike, and I would extend that metaphor to recoveries. As much as no one I've met has been afflicted exactly the same way I was, no one has recovered in the same way, or at the same pace, either. Sometimes it’s been hard not to be jealous of someone who went home sooner than I did, or is walking without a cane or who can open and close both hands, but I've been able to hold myself together knowing there is no magic formula; it's not a matter of doing something different or more. Or maybe the magic formula is the journey itself (hokey, no?).

As for exceeding expectations, I realized there were a variety of ways one could interpret that. It's definitely a subjective determination. Or at least a matter of statistical analysis. I suppose it would be nice if expectations had been high from the get go-- exceeding a mountain of expectations would be quite complimentary. I certainly don't deny that I've come a long way, and but there have been times when it's felt like expectations were a little too high, simply because I am "young" and "healthy" – some would say I've had the odds stacked in my favor. That said, I've also had one doctor tell me that, given everything I faced (between the aneurysm, the brain swelling, the Subarachnoid hemorrhage, the heart attack, the stroke, and the need for multiple surgeries), he would've put my chances of survival at about 10%. I wasn't handed that little nugget until I'd been through most of the immediate threats, so I can't say it's weighed on me much; but it's certainly food for thought. And it provides argument for keeping expectations low – as long as I'm alive, I've exceeded expectations. I had a recent conversation with the nurse from my brain surgeon's office, and she referred to me as a "miracle" – this from someone who had really only seen me at my worst. I was also fortunate today to see the doctor of physical medicine who visited me in the neuro ICU at Massachusetts General (he came up to New England Rehab for the ceremony). He too had the benefit of offering congratulations through the rose-colored glasses of hindsight. That's generally the level of perspective I try to hold onto – keeping an eye on the distance I've already traversed. I have future aspirations, but I'm trying to keep them reasonable. You know what happens when you “expect”: you make  an ex out of pec and t. No, I don't know what that means either. What do you want from me? I have a brain injury.

Tuesday, August 30, 2011


This entry comes to you in part by an extended power outage (24 hours or so), courtesy of Tropical Storm Irene -- an apt reminder of how beholden we are to the power grid (I wouldn't have been able to write at all if my iPad hadn't been charged.) Jamie tells me it's a bit of a downer, but I figure that's all part of the package; in for a penny, in for a pound.

One of the greatest struggles throughout this fragment of my life has been feelings of helpless and/or uselessness. Fortunately, much of what I consider my most useful traits are tied up in areas least affected by the stroke. Meaning, my knowledge. My job happens to be as a Knowledge Manager, which entails capturing, organizing, and delivering information to those in need of it. Prior to my surgeries, I was able to transfer some of my "tacit" knowledge to others by way of documentation or one-on-one interactions. At work that was relatively easy because we have mechanisms in place for such purposes, as well as people interested and inclined (and paid) to appreciate the reception of said knowledge. At home -- as with just about everything else -- the burden of my unique skill set falls upon Jamie, who has (shall we say) little natural inclination toward, or desire to, take on tasks surrounding online bill paying (which became her domain during my initial convalescence) or wrangling the mess of cables behind the computer and TV (which she’ll begrudgingly do in a pinch).

Now, since so much of my identity has been linked to esoteric knowledge (much of it only useful in a universe of my own construction) -- I have admittedly slid by on my good wits for years -- I've had somewhat of a mind-body imbalance. I regret that now and have often wondered whether someone more attuned with his or her physicality would have an easier or harder time during  stroke recovery. I can imagine a triathlete, for example, being much more frustrated by his or her physical disabilities. That's not to say I'm not frustrated, but I tend to feel it most around my particular routines -- like typing or crawling under or behind or into aforementioned computers and TV cable nests.

On the contrary, I could also see an athlete having greater familiarity with the intricate biomechanics of, say, walking. I've had to get by on some muscle memory and an apparently faulty recollection of when to move what where (I need to work on my “gate pattern”). I've mentioned to a number of my therapists that dance lessons in advance of the stroke might have been helpful, since there are often a series of "steps" which need to be memorized and repeated even when performing basic movements. Of course, if I'd really taken "just in case I have a stroke" dance lessons, I also should have taken a baseline neuro-psych evaluation. And I should have practiced doing, well, everything, with one hand. Then again, if I'd actually entertained doing any of those things under that particular what-if rationale, people would have thought I was crazy. Though Jamie's wanted us to go to dance classes for years.

Mind you, I do have some physical nostalgia and moments of glory. There was that diving Nerf football catch I made on the hill at Gould School in fourth grade.(I think I was Lynn Swann). There was the stand-up triple I hit during my second year of little league. I barely felt the ball make contact  -- just saw it launch off the end of my bat and head for parts unknown. I was sure it was going over the chain link fence and was horribly disappointed when I was told to hold up at third. That was the year I won Most Improved on my team(my most treasured sports trophy). Then there was the time I fell across the Shuttle Run finish line, during the 9th grade Presidential Physical Fitness Test. You see, Kristen Spry started walking across the gym just as I was finishing, and I had to throw myself down in order to avoid running straight into her. Mr. Wosilius was impressed by my level of commitment, and this was not a man who was easily impressed. He'd been a linebacker for the St. Louis Cardinals before blowing out his knee during his first pro game (at least that's what I'd heard). Talk about an athlete coping with injury - from professional football to teaching gym and sex Ed ("Testosterone!" he boomed) in a suburban New Jersey junior high. Can’t imagine that was an easy transition for him. Wos used to jog through the hallways, shaking the entire 9th Grade wing. The only other time I impressed him was when a basketball was kicked into my eye: "You're gonna have a nice shiner!" he said, seemingly proud of me. I didn't get a black eye, though. And I'm not sorry either.

On with regaling you with my list of physical triumphs: I won the Jefferson Lakes Country Day Camp CIT tennis tournament, circa 1984. I used to walk the four-mile Coffin Path between Grasmere and Ambleside (1989-90)in about an hour. That’s nothing remarkable I'm sure but still a fond memory, and it reminds me of an ambition I have to one day walk across England . In 1998 I jumped down from a fence in Golden Gate Park and did a neat tuck and roll to absorb the impact, just like stunt doubles taught me in countless movies. I also used to do a hilarious impression of speed walking.

Anyway, while being home the past eight months has helped me feel more capable (to the point I was able to care for myself all night, one night last week, while Jamie and the kids went camping), home is also a regular reminder of my incapacity to help with the kids in some ways, fix the tangles of cables, or do minor handy work around the house. I was never terribly handy, but I could manage small jobs or kit assemblies (yes, I reversed the direction the dryer door swings, twice).

Since my "manhood" is not particularly tied to my physicality, as impotent and demoralized as this experience has made me feel, it's no less emasculating than unemployment was a few years ago. And I don't mean my "manhood” in antiquated terms of man as breadwinner or in any sense of virility. My best days as a "man" were also during that period of unemployment, when I had the grand, rare opportunity to stay home with my then infant son. As much as I miss being able to father my children in certain ways (like picking them up and hugging them with both arms), nothing can rob me of that precious year and a half. Unfortunately, our culture does not tend to value the contribution of stay-at-home parents as much as those earning a wage, and I definitely fell into the trap of neglecting to fully appreciate my role within the confines of those unorthodox circumstances.

My friend Jeniene has written very eloquently on this subject of illness and gender, as it relates to her battle with breast cancer.

I'm so glad to be back at work now (half time, from home), because it allows me to contribute more tangibly to my family's well being than my recovery otherwise allowed (not that rehabilitation isn’t a valuable occupation in its own right). Work also grants me the opportunity to apply the esoterica in my head to something meaningful, even if the meaning is often a mystery to everyone except the people I'm working with (and sometimes even to them). It makes me feel useful.

Tuesday, August 16, 2011


Last week I got my KAFO, my new leg brace.

On the whole this is a positive development, because it provides me with support for my knee which my old brace did not offer. It prevents my leg from moving out to the side and my knee from hyper extending (i.e. bending the wrong way), which I apparently had a tendency to do when trying to stand up straight. However, this behavior worried my doctor and therapists; they were concerned it could lead to long-term knee injury (certainly something I would like to avoid). So the positives of the new brace outweigh the negatives. I'm provided with greater stability, which also boosts my confidence in my left leg and allows me to walk a little bit more without the cane, to do such things as carry a glass of water from the kitchen to the family room. The downsides of the brace are that it's a little more cumbersome than my old one, a little more difficult to put on in the morning, and a little more visible, especially in these summer months. Unfortunately, I wasn't able to get the dancing elephant-patterned plastic I wanted, but I did get my second choice (faux jeans). But its visibility does remind me to discuss  the semantics of my condition. Even the word "condition" gives me pause. I was looking at a health survey recently, and it mentioned something about any new health conditions. And I thought, "no, I don't have any new health conditions; I'm in recovery from a series of events." I guess I think of a condition as ongoing. Even my aneurysm didn't feel like a condition: it was an object. My stroke, or at least the effects of it, are an ongoing condition, known as hemiparesis. But I've had a hard time settling into certain terms and/or potential mindsets that go with them. I honestly don't even know that I’ve ever qualified as "paralyzed,"  "crippled," or as an "invalid" (though I did come up with the bumper sticker slogan, "Being an invalid doesn't make me invalid.”). I may have had a heart attack, but even my cardiologist’s office was hesitant to define my "cardiac event." that way (I greatly prefer the phrase “myocardial infarction” anyway. I'm fairly certain that I am “disabled”, since I am collecting disability insurance. I am also pretty sure I am "handicapped," since I qualified to receive a handicap parking placard. I’m too cynical for "handi-capable" or “differently-abled, but I definitely have an appreciation for the sentiment they convey. I spend a good amount of time trying to prove to myself and others that I am capable of more than my circumstances suggest.

In the rehab I can remember a couple of occasions when someone said something about his or her "bad" arm or leg, or about how a "normal” person might be able to do something they couldn’t, and I found myself feeling more like an advocate than I ever had before, chastising them and reminding that we were all still "normal" and that our bodies had done nothing "wrong". Thus, I always refer to my “weak” side, not to my "bad" side. Never mind that being “normal” is hardly anything to envy. It’s so Melvin, man.
Recently, I was perusing Café and happened to search "aneurysm", at which point I found many, "I survived brain surgery and all I got was this lousy T-shirt” shirts. I didn't really feel like I needed to advertise any more than my scarred head , leg brace, and cane already do, so I ended up with a semicolon shirt. (Dear Ken,  The t-shirt would actually be – in the interest of being completely accurate – “I survived two brain surgeries, a cerebral hemorrhage, a heart attack, , a stroke, and a skull replacement surgery; and all I got was this lousy t-shirt.  Love, proof-reading Jamie)

There’s another semantic argument right there: "I survived." I don't deny that as an accomplishment, but I'm uncomfortable with many of the expressions which describe who I am – stroke "victim", stroke "survivor", stroke “sufferer”. I'm not really sure what term I most prefer. I just  really don't want to form a new identity that's beholden to this experience. Strokes are actually catalogued as “cerebrovascular accidents (CVA)”, which puts me in mind of being a guy who was standing on a street corner one day and got sideswiped by a bus, though that's probably close to the truth. I want to continue healing and regaining without dwelling on that random act of fate. I'm also lumped in a group under "brain injuries." A think I hesitate when processing that one, too, because it brings to mind physical trauma, as well as mental incapacitation; I'm fortunate in that the first really only happened to me in a controlled environment, and the second has been relatively mild. I've read reports and seen pictures of Representative  Gabrielle Giffords, whose experience has been similar in some ways to my own (she also now has a plastic skull). But I was lucky enough to not get shot in the head for the privilege. No, there is nothing funny about that, not even in the similarities between what's happened to me and what happened to Brett Michaels.
As usual, thanks for making it to the bottom of the page.

Sunday, July 10, 2011

Return to Work

As much as my "recovery" has to do with my health, I'm suddenly realizing how fitting the alternate definition is for me: this journey has basically been a salvage operation for the life that sank to the bottom of Davy Jones' Locker, tambourine and all.

That's certainly not to say my recovery is complete. I still have quite a ways to go. But next week I am set to embark on the next leg to normalcy (or something like it) -- getting back to work. Now, in large part because I work for a disability insurance company, I was privy to estimated disability leave tables before my original operation. For an aneurysmectomy, I was told I'd be out for six to eight weeks. Of course, there were extenuating circumstances which have pushed that to nine months (no, I have not yet checked the estimated leave for a stroke; but there are so many different kinds of strokes, I don't know how any estimate could be particularly accurate.

For some, under different circumstances, I'm sure a nine-month sabbatical from work would be a welcome opportunity. In part because my job suits me so well but in much larger part because of the people I work with and because it represents the achievement of a key goal in my recovery, I'm eager to get back to it. Although I've only been at my current job for about four years, these people have helped see me through two of the worst experiences of my life: Gus’ premature birth and my most current dilemma. I'm confident that if I happen to experience a second puberty, they will get me through that as well. I have been met with nothing but support at every level. After Gus’ birth, I joined my department Sunshine Fund committee. I'm not what I would consider a “sunshiny” person, but I wanted to give something back. At this point, I don't think there are any number of Photoshopped cards that can repay the kindness I’ve received. But I do pledge this -- if I hear anyone, including he, refer to my boss as "Scary Dave," I will leap to his defense, for he has been nothing but Considerate and Generous Dave to me (and I’m not just saying that because he's my boss and a little bit scary).

My only regret in returning to work is that I can't do so yet in person. I miss seeing these people on a day-to-day basis. But, for the sake of my healthy recovery and in order to continue with some formal therapy (along with a rigorous exercise regime), I need to start slowly and pace myself and am very fortunate to have the flexibility to work from home for a time. I'll just be working a few days a week, a couple of hours a day to start and then slowly increasing that each week. For the most part, my cognitive skills have returned fairly quickly and back to previous levels. I base that statement on my own perspective and some testing and therapy. There are certainly possibilities that I will be a little slower processing some kinds of information, but I'm hopeful and fairly confident that this will be one of the most positive experiences of my recovery, just like Raise The Titanic.

Saturday, July 02, 2011


AT is for Assistive or, Adaptive Technology. On some level, because of who I am, I like to think that all technology is assistive. After all, necessity is the mother of invention. Of course, “necessity” changes for Everyone and depending on circumstances. My current circumstances have certainly provided me with a somewhat unique set of needs, and I am trying to find technology that can aid me in my trek to eliminate or at least diminish these particular needs. You may have  noticed that I haven't been writing much here  lately. It’s somewhat of a blessing that my brain is faster than my hand, but that’s made it very frustrating to sit down at a keyboard long enough to get my thoughts in a form to be read. Through a local organization, I do have two kinds of one-handed keyboards on loan. Unfortunately, the learning curve on both of them is larger than my current willingness, patience, and availability. This particular blog entry is coming to you through the use of dictation software called Dragon Naturally Speaking.  I’ve found a mix of Dragon and manual editing to be most efficient for me. It would be nice if they also produced Dragon Naturally Walking. Better still, I could really use an actual Dragon who can type 65 words a minute and chauffer me around (a  job I think Jamie is definitely tiring of).
When I think of all the assistive technology that's been made available to me since I started down this road, there's quite a long list,  starting with something called the Hoyer Lift in Mass. General Hospital. Soon after my stroke, the only way to get me out of bed and onto a gurney or chair was to use this sort of harness and winch built into a track in the ceiling over my bed. Once I was even allowed to work the controls myself (at least the up-and-down part); they still needed another person to roll me along the track. Since then, the technology has becomea  little simpler and more familiar, like helmets, wheelchairs, quad canes, and straight canes.

I can't really speak very intelligently about the technology which assisted the medical personnel treating me, nor would they be very palatable to describe, since as far as I know, they mostly fall in the realm of bone saws, high-frequency vibration tools to shatter calcification which had formed around the aneurysm, and machines which created my plastic skull from CAT scan images. Nevertheless, I don't know where I'd be without any of that.

I have something called a reacher, which I would actually recommend everyone have for grabbing items that have fallen (or been thrown) behind washers and dryers or under couches. In the shower, I have a tub transfer bench. It saves me from having to stand in the shower or make the treacherous journey of stepping over the edge of the tub into the shower. I also have a suction-cup- held showerhead holder which easily positions the stream of water on me. And I have a long-handled scrub brush so I can actually wash my back. Just to round out the bathroom experience, we have toilet frames that add handles and armrests to any standard toilet. There are also strategically-located grab bars around the bathrooms. One of the trickiest things I’ve found is putting toothpaste on my tooth brush without it tipping over. Fortunately, I'm now able to use my left hand to at least hold the brush while I do that. In the kitchen I have what's called a rocker knife, which is similar to an Alaskan Ulu knife. That makes it much easier for me to pitch in a bit when it comes to shopping vegetables(they’re not just for whale blubber anymore). That was supposed to be “chopping,” but I want to leave in amusing Dragon bloopers. On the whole, it really does a pretty amazingly accurate job, though.I also have a Knork for one-handed cutting.
I think that's the extent of my specifically-designed assistive technological experiences so far, though use of my iPod Touch and iPad have been invaluable along the way, from the perspective of one-handed data entry. I've also had help from a handful of orthotic devices such as the Giv Mohr sling, which provides support for my left arm, and an  AFO for my left leg., Soon that will be swapped out for a KAFO, which should provide me with additional knee support(thus the addition of the “K”). From a more virtual technology perspective, I can't stress enough how valuable Blogger has been in providing a platform from which to tell my story, as well as Feed Burner - the service that distributes the blog as an e-mail, for those of you who prefer that medium. Facebook has turned out to be more essential than I could've imagined for community building and sustaining, as has Twitter and Twitter Feed, the latter of which allowed me to merge my Tweets and my Facebook Status updates. Back to the IOS world, apps for Facebook, tweeting and, and blogging have been extremely helpful.
Thanks to all the industrial engineers who helped design these products, though not to the creators of the Auto Ambulator or of the institutional food packaging at the hospital, which is by no means one-hand friendly.

It's one of my goals in the next few weeks to try and write more and truly put Dragon through its paces, because, as I've tried to make clear in the past, this blog has provided no end of assistance in my recovery. Thanks for listening.

Saturday, March 26, 2011

More Thank You's

It has been, and continues to be, a long hard struggle. Another thing that continues is the generosity, love, commitment and friendship that Ken's friends at UNUM show us. They came the other day to give us both the money they raised during Kenapalooza, and a beautiful book they made to commemorate it. It was . . . the only word I can use is overwhelming. No, here are a few others: beautiful, humbling, gratitude, needed. Thank you.

Saturday, March 05, 2011

Neuro-psych eval

If you're ever feeling a little less than your best, because you: have a cold, had children, didn't get much sleep, or,say,had a stroke, I would not recommend taking an IQ test. That's what I did this week- over about seven hours on Tuesday and Thursday, I took a "neuro-psych evaluation", which pretty much amounts to an IQ test.I've known this was coming-it was mentioned on my first day at the rehab hospital. And i know all of this was done with very good intentions- to help pinpoint cognitive deficits caused by the stroke. On the whole I've been pretty lucky on that front - at least in terms of my own perception of my cognitive abilities. And I was discharged from speech therapy (which included cognitive testing and exercises) after about a month in rehab. So that was a good sign, too. I won't have the results of this battery of testing until close to the end of the month, but based on what it felt like, I am struggling a bit with short-term memory(especially strings of more than five number)s and concentration, and my spacial skills(i.e rearranging shapes in my head)- never my strong suit- have not improved. And I should brush up on long division. On logic, language, and comprehension I felt pretty good. Basically, I'm a modern human who will continue relying on the tools of modern living: Post-Its, spellcheck, and calculators. BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Wednesday, March 02, 2011

And the Maddie's and Dave's

It was, thankfully, brought up to me that while thanking all my Lisa's, and Jen's I had forgotten to thank the Maddie and the Dave. And if there is anyone else I am forgetting know it is just that I am a bit scattered and not ungrateful. So, again, thank you ALL - named and unnamed!

Monday, February 28, 2011

dance to the funky music white girl

Kenapalooza was far bigger than I expected. I cannot believe what you UNAMANS can put together (especially you Lisa Gaudet. By the way if anyone has an event that needs planning I have the woman for you . . .). And all the Jens, and Erika's and other Lisas. Just too many people to thank, so I thank you all.

I was overwhelmed by how many people came and all the good wishes and hugs. It was a great, great night. I got a wonderful spa trip (thank you again Julie, Stephanie and Jamie!). I got to dance my fanny off, and to slow dance with Ken. He had a wonderful time, and was also overwhelmed by it all.

Beautiful venue, yummy food and great friends. Thank you, thank you, thank you!

Sunday, February 27, 2011

Gratitude bestowing

This is my long-delayed Thanksgiving entry, though I doubt I'll ever be able to say it all or well enough. Valentine's Day seems close enough (at least it was when I started this). Not that this will be a ranking of the things for which I am most thankful , but my Valentine, Jamie, is certainly toward the top of that list(and, yes, I did let her read this before Valentine's Day). J, you are my soft place to land, and I've needed a stuntman's airbag for a skyscraper fall on this one (insert Hooper reference here). You've literally saved my life on a daily basis for the last few months, and gave me something to look forward to (your visits) every day during many grey days in the hospital. We've often said, with regard to marriage and kids, that we'd never want to go through it with anyone else. Better than a wife, you are my partner in life. I can't say that I'm glad to have gone through this with you (or to have put you through it), but I am infinitely fortunate to have had you by my side; though I'd do just about anything to undo the last four months or so. I wouldn't wish them on my worst enemy, if I had one.
Good Fortune
Even with a mountain of circumstances for which I am by no means grateful, I have also been very fortunate in how certain events played out:
1. I had tangible symptoms which led to the discovery of the aneurysm prior to a rupture
2. I found an extremely capable surgeon to help me.
3. My stroke affected me in a relatively limited way (i.e. I am still me).
4. The delay of my original surgery gave Jamie and me some extra time together, strolling along the Charles.
Good Family
You can't choose your family, but even if I could have handpicked them, I'd never have done as well as the hand I was dealt. I can't really say enough about how our family has come to our aid, but -- just to be specific -- our kids have been patient and resilient. in the face of events they are far too young to fathom. As much as it breaks my heart to hear Gus' little voice say things like ,"Good job walking, Dada," they  make it so much easier to put in the exhausting effort it will take to "rehabilitate."
Jamie's mother came to our house and cared for the kids during both hospital stays in Boston, allowing Jamie to be there with and for me.
My parents have traveled up from New Jersey, numerous times, to offer support (moral, emotional, financial, and practical), in both Boston and Maine.
My brother and sister and their families were at my bedside in Boston and Portland. It shouldn't take something like this to reconnect, but it certainly helped us all recognize how much we mean to each other. It also gave my siblings some quality time together during long car trips.
Jamie's sister has volunteered babysitting services on a number of occasions, giving Jamie and me much-needed time together and alone both before and after the real ordeal began. My uncle, aunt, and cousin came to Boston and Portland, giving my uncle and me the fortunate opportunity to bond over our mutually-unfortunate debilities.
Good Friends
You can pick your friends, so I'll credit myself with pretty outstanding taste there. Or, on my friends' taste in picking me(especially now that they know it ain't no picnic being my friend).Just to single out a few -- Jamie ("boy") and his wife Stephanie, who acted as Bostonian ambassadors during our stays in Massachusetts.Tess, who has provided nursing care and advice, as well as childcare and a watchful eye for me on rare occasions when Jamie("girl") was not available to do so.
I also can't say enough about how blessed I've felt by the cards, pictures, meals, visits, and efforts made by friends, co-workers, neighbors, and members of our new school communities, in finding ways - large and small - to help us ford through the deluge of often overwhelming calamity.As I tweeted awhile ago (Sure- why not paraphrase myself quoting a famous movie line?) -- Looking at my hospital room wall made me feel like George Bailey --"the richest man in town."
Along this long road, my college friend Katherine( with input from many other geographically-scattered friends) put together a miraculous book of photos and stories.
And in a few short hours I should be on my way to an event (dare I call it a "palooza"?)far more ambitious and generous than anything I could have dreamed up.

And then there are the big shoulders of this virtual community. There's lots of overlap with the above groups, but you have also meant so much more to us than we could ever have anticipated.

Last but certainly not least, I am thankful for the army of doctors and nurses and nurses aides and therapists who worked and continue to work tirelessly to make me comfortable and healthy and whole.
My gift for all of you is a group of  pictures, such as the much-discussed, little seen (fortunately) Superman briefs over hospital scrubs.
Halloween 2010 (Superman overroos)
Christmas 2010

Snow Reindeer
Halloween 2010 w/ Gus (skunk) Aino (clown), and Wyatt(Clark Kent turning into Superman)

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Sunday, January 30, 2011

Reinfomation about Kenapalooza

I know some people had trouble accessing the Facebook link. Hopefully, this will work better. It's a PDF (Adobe Acrobat) version of the same info.if you don't have Reader yet, I'm flabbergasted it took this long to pose a problem: Kenapalooza PDF

Tuesday, January 25, 2011


Ken's amazing, generous, wonderful friends (led by Lisa Gaudet) at UNUM, have come up with Kenapalooza, check out this link:
And you all know, or maybe you don't, how much Ken LOVES to be the center of attention. Darn sarcasm is really hard to write. Anyway, if you can come, please do.

Be well! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Saturday, January 08, 2011

me want to go to there

There are a few things that make Ken and I work as a married couple. Not that we always do, but mostly we work. I think one of the biggest is that we are both fairly reasonable people. Neither of us seem to get too far gone into our own shit to see the value of the other person's view, or feelings or, argument. The other is that we both rely on humor to deal with things. And in this situation that is a good thing, eases tension and the like. Because I know that all you couples know what it's like to be told what to do by your significant other. It's not that fun. Poor Ken has me as his OT, PT, and everything else. It is a hard thing.

For the record, I know most of you reading this blog think I am a saint. But here's the thing, most of you reading this blog don't live with me. And those of you (Ken, Wyatt and Gus) who do live with me know I can be quite grumpy, and loud, and bitchy. Ken is rarely loud, but he can be the other two. What I am saying is this: despite the fact that we are well, human, and married, we are doing alright so far, with reasonableness and humor as our weapons of choice. It tends to make the arguments rather tame when your goal is "I will out reasonable him", or "I will make her laugh". I don't want to sugar coat things, this is the hardest, hardest thing. We are both physically and mentally ass whooped. BUT, as Ken and I agreed today, we do want to choose to learn something from the experience and, gasp, maybe become better humans. Maybe this will finally inspire me to start my non-profit: PEOPLE FOR THE ETHICAL TREATMENT OF EVERYTHING, or PETE for short.

I think Ken's job is much harder than mine. Having to rely on people for so much is not an easy, or dignified feeling/thing to go through. But he is dealing with it very graciously, patiently. It is humbling for me, much of the time (I ought to say that to his face). I am trying hard to be calm and gracious as well. To remember to love him and the boys with what I do, not just my words. It is a battle at times. But me want to go to there.

P.S. Me want to go to there is from the show 30 Rock, in case anyone was awonderin'.