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.

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:

Neuroplasticity

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:

Clonus

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.

Subluxation

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.