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 CafĂ© press.com 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.