Sunday, August 13, 2017

Out of Control

As Miss Jackson says, "'s all about control." I've talked about that before. We control what we can, and we choose what we try to control. Because it's also all about choice. When things don't go according to plan, we can instinctively rant and rave about how reality isn't matching the picture we'd painted in our heads, or we can choose to paint a new picture with the supplies available.

Speaking of not so pretty pictures, over the past seven years I've gained a fair amount of weight -- possibly from a sedentary lifestyle, a diet of "everything in moderation," fatigue, or various prescription med side effects. Of course, I lean toward the latter (lattest?) two; because they're most out of my control and least point to me as a fat, lazy slob.

But blame is lame, so I've tried to get myself in a bonafide exercise routine this summer. Yes, I've passed my cardiac stress tests with no effort whatsoever; but chemically racing my heart rate every two years is no more a legitimate workout than when I used to tell myself that sixty sit-ups a year (during the President's Physical Fitness Test) was all I needed to do to keep in shape. That's perfectly sound logic when you're ten, but not so much when you're pushing 50.

So with my recumbent tricycle stored in the back of my station wagon -- at the ready for Maine Adaptive excursions around Back Cove in Portland -- I've also been able to ride around the campus at work on my lunch breaks.

Generally, that's gone very well. I've done multiple, four+mile rides with Maine Adaptive and tackled some challenging hills at work, even finding that I can now climb hills in a higher gear than when I started (something I didn't know was an indication of progress, having never ridden a cycle with gears before now).

And then, a couple weeks ago, I had an "incident" while riding at work: I had trouble negotiating a tight turn, went up an angled curb and embankment, and tipped over. It was very much a, "Well, this is happening..." moment, only occurring to me later that perhaps I could have shifted my weight and prevented the fall altogether. At the time it was fairly pleasant to just let gravity take me, knowing I was wearing a helmet and falling gradually about a foot and a half at most (recumbent tricycles don't sit high off the ground).

Once I was on the ground, it was also nice to just lie there and take it all in. I like to think I would have eventually gotten around to getting up, but a very nice man who happened to be out for his own mid-day constitutional stopped to check on me, get me righted, and send be back on my way. As I was waiting for the trike to be ready, I noticed something novel I don't often feel -- pain on my left arm. Generally, the stroke hasn't affected sensation on my left side, except in subtle ways. But this was nevertheless unique. When you're a kid, skinned knees and elbows are fairly commonplace, but as an adult -- especially one who expends a disproportionate amount of energy focused on safety and slow, intentional movement -- bumps and bruises are unusual.So when I touched the pain on my left elbow with my right hand to find it wet with blood, I was somewhat tickled by the seeming normalcy of this abnormal event.

As my "road rash" has healed, it's been received with an odd mix of concern and kudos. Some see it as a badge of honor. Mostly, I like that it feels ordinary. Otherwise, it's one more time that a mishap can act as a lesson. I'm not going to let it stop me from getting out there and feeling the wind in my face.

Speaking of which, with the annual Maine Brain Aneurysm Walk coming up, I may ride the full 5K instead of walking the mile and a half. Sometimes it's just nice going fast, as long as I'm in control.

Saturday, July 15, 2017

Paddle Me This

For a good portion of my life, kayaking was my extreme sport of choice. No, not terribly extreme, but that fact in itself is demonstrative of how little risk has played into my outdoor activities (or activities in general, really). Thrill seeking pretty much came down to hiking in the English countryside without a map and the simple rule of never doubling back. But when faced with the opportunity to get out on a body of water in a boat: whether on lake, river, or sea, I would gravitate toward the kayak. I liked skimming the surface of the water and at times peering straight down to the bottom. I suppose this began at summer camp, then a few Delaware River trips with high school friends. I don’t think I ever went out in Alaska, though always imagined it would be exciting to do so as glaciers calved next to me and orca hovered beneath.  Jamie and I tandem kayaked in Monteray Bay, tailed by sea otters (vicious, snarling sea otters!). And then our first house was on a small pond, just right for a relaxing drift.

We moved in months before Wyatt was born; and when assigned to sketch  an ideal picture of parenthood (the greatest adrenaline rush of all!) for our birthing class, I drew my point of view of sitting in a kayak with my child between my legs, paddling off into a golden sunset. That's a perfect fantasy of parenthood from the perspective of a person who had no idea what he was in for (in complete control of his vessel, on still, unwavering  waters, with a passenger who can neither move nor speak unpredictably). I was very fortunate to make that image a reality a year or so later but had not been in a kayak since the stroke. Here's a picture of that last excursion in 2010, with our family friend Cyrus (though I think Wyatt and I went out that day, too).

Me and Cyrus, 2010

This summer I’m planning to do a few different activities with an organization called Maine Adaptive Sports & Recreation (both cycling and kayaking) and had originally hoped to go out with them Friday, July 7. Unfortunately, I didn’t get on their roster in time. However, in anticipation and in consultation with a friend who works with a similar organization in San Francisco, I purchased a set of kayaking pogies, which are designed to keep your hands warm in cold water sea kayaking but can double as an assistive device. My friend described them as oven mitts that attach to the paddle. And that’s pretty much what they are.

Of course, I only need one pogie but figured it would be a relatively easy way to lash my left hand to the paddle. My fingers tend to curl in and could perhaps be pried open to wrap around the paddle shaft, but I don’t have enough conscious grip to hold onto it for long.

Living one handed for the past seven years has been a difficult choice for me. In part, it was a matter of sticking to my strengths and not living in false hope of rebuilding my symmetry. But I’ve often wondered if it would be considered an insult to someone whose left arm had been amputated for me to simply ignore my left arm and hand.  Yes, I find periodic jobs for it like flipping light switches and holding my toothbrush while applying paste. But for the most part, I do try to forget it’s there and keep it out of my way (unless I consciously hold it up from my shoulder, gravity will pull it down at my side). I could melodramatically argue that while, yes, I do still technically have a left arm and hand, I’ve had a right hemisphere brain amputation and therefore lack the ability to control my left side beyond very basic, selectively-practiced and re-wired movements (i.e. it's more of a software than hardware problem). As I said, the muscles are somewhat contracted and tend toward pulling in toward my body or pulling up from the shoulder. Straightening or swinging out feels unnatural and triggers tremors from feedback in the left side of my brain, which already has its work cut out for it, having to  manage every other thought and bodily function it was never intended to. So I do what I can. Judge not.

Anyway, Saturday, July 8, was our friends’ Ed and Amy’s annual July Fourth-ish party at their lake house. Seven years ago (when the above picture was taken), I brought that gathering to a screeching halt with the announcement that I was growing a ticking time bomb in my head; and this group has supported me the whole way. So what better place to unveil my grand scheme to put my left arm to work?

When, days earlier,  I'd revealed my plan to Jamie, she had her doubts and worries. Because, understandably, she’s made it her job to worry about everything she can (or even can’t) control. And I’ve made it my job to understand and test my limits as safely and responsibly as possible and to not worry if I can help it. To paraphrase Taylor Swift, the doubters are gonna doubt and the worriers are gonna worry. And I’m just gonna shake it off (with my one good hand!).

So, with Jamie and Ed’s help, I managed to ease myself into a wide-mouthed kayak on land (“ease” being a relative term of a hard sit-down later described as a, “controlled fall”). I'd say that description about covers all bipedal locomotion. Once I was seated comfortably and securely, we attached the paddle to the pogie, secured the pogie to my wrist with a Velcro strap; and gently slid and lowered the kayak into the lake.

From there I was pretty much on my own. While I imagined I’d work into some sort of cyclical rhythm with my left arm following the motion of my right, what turned out to be more natural was resting the left paddle shaft on that side of the boat, pull paddling on the right, and then paddling on the left by pushing with my right arm. That got tiring pretty quickly, so I did try using my left arm to pull as well, pretty effectively. For awhile I actually managed not to just go in circles.

I made it far enough out to see a bald eagle flying in the distance and to sit and rock in the waves, ride the current into shore, and have Jamie and Wyatt swim along side me (see below).

And the doubters stopped doubting, the worriers stopped worrying (about that particular thing for that particular moment), and I basked in the sun and the gentle lap of the water.

Giving up use of my left hand does mean letting go of certain things I always took for granted. For instance, peering out at fireflies the other night, I realized I will probably never cup one in my hands again.

But figuring out how to do what I want with what I have makes every accomplishment that much more meaningful.It isn’t fun having to repeatedly prove myself. But it's also nice to confirm what I think I’m capable of.

How many people does it take to screw me into a kayak in 2017? At least three.
Note the silver pogie on my left hand.


Saturday, June 17, 2017


One of my biggest goals in leading the Disability Employee Resource Group at work is to personalize the disability experience and empower other employees with disabilities to come forward and support one another. One of the ways I attempted to do that last month was to share disability Point of View videos like this one. That inspired me to put on a bike helmet and GoPro camera and produce my own POV video (below; it's about seven minutes long). If you're reading this, there isn't much that'll be new to you, but it was fun to try and tell my story in a different way.

Sunday, June 04, 2017

Damaged Goods

I started this last February, offline, but wanted to pick it up again...

I’ve written about this before, but nothing is a harsher reminder of the burden I place on my family than a snowbound, power-out day. No electricity means no heat and no water (the wonders of being on a well).

The screams of frustration from Jamie and the boys, who are trying to at least clear the snow from the walkway, the top of the drive, and the edges of the roof (ice dams are laying in wait to pry under the shingles and leak come spring) rattle around my echo chamber of a brain, reminding me that it’s my place to be suffering out there with them, instead of sitting in my pajamas, stoking the wood stove and lamenting my fate (that too feels like a luxury).

On a similar note, out of the blue I received a letter from the  Bureau of Motor Vehicles requiring me to have my doctor sign off on my ability to drive, despite the fact that I’ve had my license back for four years without incident and nearly five since my last seizure. I’m sure it’s all standard protocol, but nevertheless screams that I can’t escape the perception that there’s something “wrong” with me.

Interesting, too, that this all comes as I embrace myself as a person with a disability and try to advocate for and support other disabled employees at work. One of the biggest challenges there is finding people who will  self-identify that way, either because of the stigma they feel is associated with the label or an unwillingness to let go of their “normal” identity. I understand both of those perspectives: Becoming disabled can happen in seconds. Living with a disability is a learning process that takes years, not unlike mourning the loss of a loved one, except the loved one is you. Even though I’ve grieved and moved on in many ways, I can’t fully escape that other guy, nor can the people who love him/me.

Oh, and have I mentioned that the lice outbreak in our house a couple weeks ago has suddenly reared its ugly head (pun intended) again this weekend? One more barrage of things for Jamie to deal with (buzzing hair, washing and drying every piece of cloth in the house) and blame herself for (obviously, she isn’t responsible for their existence but is responsible for their extermination, because I’m of no use in the process). Lice is a lot like disability, in terms of that inaccurate social stigma (lice=dirty; disability=weak and looking for special treatment).

And it just happens to be my birthday. I thought I’d had my mid-life crisis at 40 by having a stroke but have actually found 47 harder in many ways. It’s the confluence of getting older, feeling like I still have a lot I want to accomplish, and having little energy to commit to any of it.

Jumping ahead to the lovely springtime of early June, I'm happy to report that we survived the power outage, the lice are gone, and I'm well on my way to empowering more employees to embrace their differently-abled side (gotta find a better turn of phrase for that -- re-abled? abilified? super-compensatory?). 

One of the perks of working at a disability insurance company is that they recognize the value in disability perspectives. Jamie and I had the opportunity to take a trip to Florida at the end of April for a disability conference, May was very actively recognized as Disability Insurance Awareness Month with a panel discussion about life as a claimant and an experiential learning event filled with disability simulations, I flew solo to Tennessee (first time since the stroke) to tell my story and plans to the Board of Directors, and I drove solo to and from Providence to celebrate my 25th college reunion. We're no spring chickens, but we partied like it was 1989 (except that in 1989 I didn't party).

Needless to say, the year so far has nicely emphasized what I can do and what I've gained from the past seven years, not what I can't do or what I've lost.

Sunday, January 29, 2017

Take It Easy

I know, I know, if life were (subjunctive mood) easy, everyone would do it.

And, yes, it's that time of year again (just barely), when I rail against New Year's resolutions, because they set unrealistic expectations. I do have some tangible goals for the year:

  • Finish my book proposal
  • Lose some weight
  • Speak Truth to Power (except that, unfortunately, our current seats of power hold little regard for objective truth)

My ethereal goal for the year follows the tenet of the above-mentioned Eagles song to not..."let the sound of [my] own wheels drive [me] crazy." I'm not specifically looking to stand on a corner in Winslow, Arizona, but I'll take it if I'm dropped there.

I'll admit that this entry started as a brain fart onValentine's Day last year:  I mis-remembered the radio show phone call in Sleepless in Seattle where Sam (Tom Hanks) describes his marriage to his dead wife as being, "effortless". It's actually,"like magic".

The Valentine's Day connection was about how romantic comedies provide a disservice by suggesting that relationships are easy. And -- as I do with everything -- I extended that metaphor to life in general. I was thinking how much I miss life being effortless. Not that it ever was. But there were certainly times it was easier than now. Marriage-before-kids didn't require scheduled time to communicate. Body-before-stroke (or maybe just before middle age ) didn't spread (quit looking at my gut!). I didn't feel like an ogre looking at myself in the mirror or eyeing my fingernails (though the sight of me, unfortunately, doesn't seem to drive children away).

When looking at this list of Right-side stroke effects, I recognize myself in some of the descriptions, most of all in a lack of motivation. Not that I can entirely blame the stroke for that (blame is lame); in my hipster doofus twenties, the imaginary bumper sticker on my forehead read, "The closest I come to ambition is constant dissatisfaction." As a kid I was actually quite the perfectionist. Now I have no use (or belief) in perfection.

I searched "effort" in my blog and found this update my mother wrote early in my time at the rehab.
Culturally, we believe injury can be worked away. No pain, no gain. Work smarter, not harder. Or just work harder. Walk it off. Rub some dirt on it. But brain physiology and psychology don't work that way.

I've worked hard not to question whether I didn't work hard enough in my recovery, in order to get back to my full physical potential. But my mottos are, Progress over perfection and Perfection is overrated. Perfectionists fear failure, because if you truly try your hardest and don't succeed, you must not be perfect. As long as you leave room for failure -- say with procrastination -- you can blame the gap in effort.Though blame is lame.

So my main goal for the year is to take it easy by continuing to do what I've been doing, which is finding ways to make things that require a lot of effort a little more effortless. And to deny those who believe that if it isn't hard, it isn't worth doing. Sometimes, doing things because they're easy is reason enough. I have a steady practice of playing Spider solitaire on my phone, because I know I can pretty easily win a game. Endorphins achieved, thank you very much. Easy or not, I'll take the W.

I know I've talked a bit about Assistive Technology before, but I think it's worth highlighting a couple devices which have helped me feel a bit more independent as a one-handed person in a two-handed world, just because they sand down the effort of mundane tasks a bit:

  • It turns out that cutting the nails on the same fingers you use to hold the clippers is nigh impossible. Enter the One-Handed Manicurist.
  • Once in awhile, I come across a lid I can't Thighmaster tightly enough to open. Enter Jarbot.
  • And this clipboard is my constant companion, because you never know when a tiny receipt will need signing.

And I'll continue to say, "Yes," whenever possible. I am open to the universe and all it has to offer.