Sunday, September 14, 2014

Walking the Talk

Slow and steady wins the race. Never be a dirty bird. No, there's no particularly good reason for those phrases to be linked in my head, but I've learned not to question my brain's mysterious ways. They are.

The particular race at hand was the brain aneurysm awareness walk I did yesterday (always good to take my aneurysm out for some fresh air). Now, out of context, a mile-and-a-half walk on Portland's Back Cove doesn't sound like a big deal. However, the context happens to be that this was the longest distance I've strode since my stroke; I raised $500 for a worthy cause; and I achieved all of this more slowly than anyone else on the trail (about two hours), with narey a stop or stumble, aside from a break to remove a layer, swig some water, and scarf down a granola bar. In fact, had it been an option and given enough time (say, all day), I think I could have walked the entire 5K. Maybe next year. To think that nearly four years ago, I was confined to a wheelchair. It actually would sadden me to say, "four years ago," without the "nearly,"  because the truth is that on September 13, 2010, walking 1.5 miles in less than half that time would have been a laughable challenge. In fact, given some training and self-hypnosis (and/or Valium) to ignore the time bomb in my head, I could have run the full 5K course.

The greater context that made this effort that much more worthwhile is best depicted by the picture below, where my teammates Mary, Marc, Donelle, and Jamie (behind the camera) crossed the finish line at my side, with more enthusiasm than I could apparently muster (hey, they had the patience to take two hours trudging 7,920 feet, too!). Not to mention the event organizers who stopped striking tents and packing up gear in order to come out and give this dead man walking a hug. For those who tragically lost loved ones to sudden aneurysm ruptures, I think I represent some level of miraculous hope. That role is far bigger than my little life and somewhat exaggerated by the cane, leg brace, and recently-added sling (obscured here under my sweatshirt) -- my left shoulder still has a tendency to dislocate a bit if I let my arm hang too much. Should I start wearing my helmet again to make it clearer that it's all in my head?


Tuesday, September 02, 2014

Not to Belabor the Point

According to the Department of Labor, since 1894 the United States has celebrated the first Monday in September (today [at the time of writing], Labor Day) as, "...a yearly national tribute to the contributions workers have made to the strength, prosperity, and well-being of our country."

In preparation for this holiday, and as the designated facilitator of the late August session of my bi-monthly brain injury support group, I chose Work as a topic of discussion and am taking it to this forum as a way to capture some of that conversation's salient points and muse further on them.


First of all, I should thank the tireless efforts of the American Labor Movement for creating the five-day work week that gives long weekends like this a time to shine. The only flaw in this case is closing schools as well. As much as kids would like to complain about how hard they work, this holiday is not for them. If only there were some way to give school staff the day off without our children staying home. Unfortunately, I can't figure out an adequate solution without landing in some sort of Lord of the Flies, inmates-running-the-asylum scenario. I would also like to propose a four-day work week where two groups of employees work every other day, alternating weekly schedules (i.e. Group 1: Mon., Wed.,Fri., Sun.; Group 2: Tues, Thurs., Sat., Mon; at which point they have become Group 1; repeat). With half as many people at work each day, far more would get accomplished. I call it "The Round" week (set to the tune of "Row, Row, Row Your Boat").


No, I have obviously not thought the plan all the way through.


For any number of reasons, I am very fortunate to be one of the employed disabled (not to be confused with my best-selling zombie allegory, The Working Dead):

  • My job happens to be fairly sedentary; therefore my physical impairments do not generally interfere with my work or can be accommodated for.
  • My job primarily focuses on mental activities unaffected by my particular stroke.
  • Because my aneurysm was diagnosed three months prior to my surgery and stroke, I had time to prepare myself, my family, and my co-workers for an indefinite leave of absence (which I actually like to think provided some growth opportunities for people filling my shoes and made me feel less guilty about leaving anyone in the lurch). 
  • Because I happen to work for a disability insurance company, my peers and managers were well versed in providing a supportive out-of-work and return-to-work environment, allowing me the time and therapy I needed to get back to the office, as well as recognition of my strengths -- not just my deficits -- upon my return. There is no better example of how buoyed I felt by my work family than the wall of my rehab room (pictured below), which they helped decorate.
  • My family and friends were able to provide some financial assistance when insurance payments were insufficient and when, well, shit happened (like the dead well pump of February 2011).

My particular circumstances do raise an important distinction: Work does not inherently mean employment. And while what we do may on many levels define who we are, what we do to bring value to the world does not have to have a paycheck at the end of the day. 


Talking about all of this with members of my support group (who are extremely understanding and, well, supportive people) made me realize that I have some residual survivor's guilt about the relative ease with which I've reclaimed my past life. That is certainly not to diminish my achievement of returning to work -- or the sheer effort it can take just to get through the day -- but simply an acknowledgment of how fortunate I've been in the support I've had and, in many ways, even in the circumstances of my injuries. From a brain injury perspective, a stroke that leaves someone walking with a cane, sporting a dent in his skull, and unable to use his left hand can in fact be easier to weather in that it is at least more visible than injuries primarily confined to the shadows of someone's noggin. It's also difficult for me to see some of the hardest working people I know relegated to the unreasonable stigma of "collecting disability" (as if there are C-notes scattered on a beach somewhere, and that the regularly-demoralizing process of having doctors tell you you're ill-equipped to hold a job is easy), simply because our society places so much emphasis on measuring human worth with employment and ties much of our social safety net to it, when there are so many more ways one can contribute to the world beyond work that pays. I actually make a concerted effort now to better balance my life at and outside work. My stroke, this blog, and volunteering with Brain Injury Voices have given my life more purpose than my work alone could and in turn provide my work with an extra sense of meaning. And never mind that the hardest jobs I've ever had were acute rehabilitation and intense job searches.


Back to identity tied to profession, disability can rob one of his or her status as a stable element in an otherwise unstable world. The support group conversation helped me recognize and express how much my return to employment was tied to my obligation as father, husband, and breadwinner.


I know it was just as difficult for Jamie when I was laid up and she was left vulnerable for hitching her wagon to my star.


Our family is actually soon going to be forced to reverse those roles a bit: Jamie has been suffering back and stomach pain pretty much since she was pregnant with Gus seven years ago and has finally learned that all this discomfort may be caused by a swollen uterus, a very large uterine fibroid and an umbilical hernia. She calls her uterus and fibroid The Twins (put together, it's like she's three or four months pregnant with twins [and just as moody]) and has named them Uti and Fry. In the next month she will hopefully have surgery to relieve most of that pain. But it's hard not to worry how the procedures will affect her abilities to support us (another unpaid job which doesn't get nearly enough credit) and whether I am up to the challenge of providing her the level of care she'll need. Once again, we find ourselves extremely grateful and fortunate to have the support of friends and family during this chapter.


Life is labor.





My rehab Wall of  Love, complete with wedding pictures, Superman underwear, Scott Pilgrim poster, assorted artwork from the kids, and chain of good wishes from co-workers.