Sunday, December 28, 2014

Head Games

Back in college, my friends and I would periodically go to school hockey games, and there was always some guy (probably on his second keg), screaming, "Hit 'em in the mind!". I never took it as a call to  skull-splitting, cross-checking violence but rather what passed for Ivy League frat boy psychological warfare. Don't know if it helped us win, but it always livened up the arena.

This Christmas, my parents bought me MindWave, an EEG  biosensor which is intended to measure basic brainwaves, mostly around attention and meditation. I actually had my first EEG testing back in 2010, to look for any seizure activity. I had subsequent scans during sleep studies for apnea. This winter, I plan to start some EEG-based neurofeedback treatment at the rehab to learn some self-regulation techniques and possibly map topographic activity within different lobes. I have plenty of pictures showing damage caused by the stroke, but none which show healing. Depending on who you ask, the damaged or dead brain cells on a fair portion of the right side of my brain can no longer serve a purpose. However, there is increasing evidence that merely damaged cells can generate new cells (neurogenesis) and that healthy brain cells can be rewired and recruited to perform activities beyond their original intention (neuroplasticity). For instance, even though the right side of my brain used to control the left side of my body, my current left-side mobility is now presumably controlled by retrained neurons in my left hemisphere. Or, so the theory goes. I may never know for sure. Some might say it's a moot point -- the proof is in the pudding: if I can move my left side, it doesn't matter how or why. It's one of the many ways we are blissfully ignorant of how our bodies manage to function. But I'm curious nevertheless. That's why I'm looking to go down this rabbit hole.


The Mindwave EEG has given me a preliminary picture (below), though I'm certainly not well equipped to interpret this brainwave data:


Brainwave Visualizer: shows the fluctuating levels of different types of waves.

Mindwave also includes some games designed to hone attention and meditation skills. Here are some screenshots:

The Mindty Ant: By focusing on the fruit, you help the ant roll it into his food cache.

Mind Hunter: Focus allows the game to target animals, blinking then shoots a bubble that whisks them away (very child friendly). 

Zombie Pop: You focus on the zombies being made in the zombie factory in order to pop their heads. I haven't yet made it to the level where you actually fight the zombies.

I'm not quite here yet, but I'm working on it.

My friend Marc -- unaware that I was experimenting with EEG already -- found a perfect non-virtual companion Christmas gift to the Mindwave with a MindFlex he found at GoodWill. It uses EEG focus and relaxation to appropriately speed and slow a fan beneath an accordingly rising and falling foam ball, with an eye toward navigating an obstacle course. Like this:
Now, while all of this attention and meditation exercise is a distinct area of improvement for me; and tapping directly into my brainwaves is cool, a pretty big part of my self-prescribed mental exercise regimen has long included retraining areas of memory, strategy, logic, spatial organization, and word finding through apps like:


There are more formal brain training programs like Lumosity and Mind Games, but I find them a little too clinical.

Thursday, December 25, 2014

Whoomp!

Here it is: I like Big Buts, and I cannot lie.

In this stretch of the year emphasizing gratitude, I find myself exhausted by thankfulness. This occurred to me initially on the day after Thanksgiving. I know it's called Black Friday because it's the start of holiday shopping and a profitable turn for retailers (getting, "in the black"), but it certainly sounds ominous, like the mayhem of getting up at three in the morning for the sake of a good sale. I realized in the midst of all my gratitude, I wanted to luxuriate in a bath of sour grapes. Black Friday could just as well be a day of well-earned resentment and bitterness -- bitter like a black cup of coffee.

Often, I feel like I can't complain about life because my near-death experience is supposed to have provided me some kind of grand perspective and enlightenment. That brings me back to the Big Buts -- horrible things I feel but am not supposed to admit, lest I sound petty or self-pitying:

  • I am and will forever be grateful for the support my wife's given me over the past four years, but I am bored with feeling beholden to that bolstering and being unable to resent the coddling I sometimes receive. Jamie, by the way, feels the same -- how can she properly and righteously get pissed off at me when I literally went to the brink of death and back for her and the kids?
  • I love and appreciate my kids for [mostly] smiling through our mutual trauma, but I do question research showing that people with children live longer than those without or that married men live longer than single.
  • Given what I've been through, I am very fortunate to hold a job and work with and for people and a company who want to see me succeed; but work can be a slog of ridiculous politics and facades. As meaningful as the end results of my work may be, sometimes it feels like all we manufacture in a white collar industry is angst.
  • My friends have been a force of encouragement, but I've found myself regularly having to be the one who invites, rather than the one invited; leaving me wondering if I've somehow ostracized myself by getting sick and being a downer. Of course, no one would admit to intentionally leaving out the strokey guy with the cane, but it can feel that way. Or, maybe I just prioritize escaping my life more than others.
If I hadn't burned my bridges before, maybe I've stuck my foot in it now. I'm not saying these things because I think I'm entitled to get away with it. I'm saying them because I think everyone has legitimate gripes sometimes, and honestly complaining about what I have doesn't mean I don't know how lucky I am to have them.

Someone at my brain injury support group threw out the motto, "Above ground and walking," to express the blessing of life. But, once again, I'm forced to question the notion that every moment is sacred.

Mindfulness teaches us to live in the present but also to not judge what we're feeling in that present. Yes, the present is a gift. We tend to praise and reward ourselves for feelings of gratitude in the moment. Not so much bitterness and anger. Neither end of the spectrum should be inherently good or bad. It's mostly subjective. Mind you, suppressing anger and resentment is tangibly unhealthy but, then again, so might expressing them. Fear is generally considered negative but is at least instinctually protective. What's resentment for? I'm still working that out and generally try to steer clear of it for that uncertainty -- it feels fruitless. Translating rage into anything other than an outlet -- even if it's an honest venting of legitimate emotion -- is rarely productive.

That said, just because it feels good to rant, I've compiled a list of rage anthems (from the man who has nothing to complain about):

Turn it Down for What?
We're Not Gonna Take It
Fight for your Right to Party
Sabotage
Sleep Now in the Fire
Anarchy in the UK
Fight the Power

In conclusion, Happy Holidays! Here is a gift of a picture of an early Christmas gift Jamie made for me this year. It's a pretty spectacular representation of the support I've had and am grateful for, even if it means I need to walk with the aid of a cane. Dammit. There it is.


Candy Cane cane


Saturday, November 22, 2014

Another First

I've debated about whether this event is in fact Blog Worthy, but there's definitely more to it than a Tweet or Facebook status update; and new firsts are becoming fewer and further between in my recovery. So here we are:

This week I walked in public without my cane.

I do walk short distances at home and at work (sometimes even without my brace), when I need to carry something large or can't find my pine cane amidst all the pine flooring, furniture, and cabinetry. But on Monday evening, after filling up my tank (under $3.00/gallon, woo-hoo!), I found myself outside my car at the gas station -- wondering whether I'd be able to carry both my cane and the half- gallon jug of milk I'd been asked to pick up-- and ultimately concluded I'd leave my cane in the back seat and go it alone. Getting in the store was one curb step up and a fairly light pull door away, which weren't a big deal. Once inside, I did become somewhat hyper aware that, outwardly, I was some guy walking funny for no particular reason (Cane and Brace of Explanation, respectively being in my car and under my pant leg). I was in fact coming from a work Happy Hour and did have one Pineapple Potion under my belt, though I actually think I was in better shape than the guy in front of me who was buying a Twisted Tea six pack  (not his first of the day, me thinks). I sincerely doubt he or the cashier even gave me a second thought -- I was more aware of my silly walk than they were.

Once I had my milk paid for (thanks to my handy, wallet-toting murse -- man purse, not male nurse) , it was just a matter of opening the door with my milk-loaded hand, heading back outside, and stepping down from the curb to get to my car. That was really the test, since I basically never step up or down without holding my cane, a railing, a wall, or someone else. Over all, aside from being a little self conscious, I felt steady and safe. I'm not ditching the cane any time soon, but it's nice to know I can when the situation calls for it.

And here's a shot of my new murse. Technically, it's a military map case shoulder bag, but I'm not ashamed to call it a murse. Bottom line, it's an essential piece of Assistive Technology that allows me to carry my wallet, phone, keys, and a number of other things without monopolizing my hand. And this satchel's a little larger than my old one, making my messenger bag nearly but not quite obsolete (I need its cup holder for my coffee travel mug). My lunch bag is still a separate sash, too. Maybe one day I'll find one bag to rule them all but not yet:



Sunday, October 26, 2014

Never Tell Me the Odds

For many of you, I probably don't need to clarify that movie reference. In fact, I probably don't even need to add that the possibility of successfully navigating an asteroid field is approximately 3,720 to 1. This time of year (the anniversary of my brain surgery, hemorrhage, craniotomy, and stroke [to borrow a term from someone at my support group,  my "craniversary"]) I do tend to get reflective and flip through my chapter in the Jewish Book of "Why Me?"

This year -- armed with some stats from the Brain Aneurysm Foundation and the recollection of my first neurosurgeon's mention that my long-stable aneurysm was 4% more likely to rupture with each passing year -- I took my fruitless contemplation to even greater lengths and started calculating probabilities of what has or could have happened to me.

I and a mathy friend (thanks, Wilk!) estimated the following likelihood of rupture had I taken no action to remove the squid (assuming a baseline risk of .5%, based on the BAF numbers):


Year
Likelihood of rupture (uncompounded)
Likelihood of rupture (compounded)
1
0.5%

0.5%



2
4.5%

0.52%
3
8.5%

0.54%
4
12.5%

0.56%

I mentioned this was a pointless exercise, right? Depending on your risk tolerance, the odds don't look so bad; but it doesn't matter, because what happened happened. And if it was going to happen, I was certainly much better off in bed at the MGH ICU than falling to the ground wherever I happened to be. There's very little value in trying to predict all the ways our lives can go wrong, based on statistical analysis or neuroses. In my own private Hunger Games, the odds were ever in my favor.

Ignoring that reasonable perspective entirely, I also went back to a medical disabilty calculator I have access to at work and did some searches on my past and Jamie's upcoming procedures (tomorrow):


Ken

Condition/surgery
Estimated Days of Recovery
aneurysmectomy 
42-84
subarachnoid hemorrhage
91-indefinite
stroke
21-indefinite







Jamie


Surgery
Estimated Days of Recovery
Hysterectomy
28-42; 82.9 for a man
Hernia repair
1-14


Mind you, these predictions are all based on return to work for a "sedentary" occupation (more true for me than Jamie); and ability to work is only one definition of disability.  Case in point, me: The Americans with Disabilities Act defines Disability very broadly as, " a physical or mental impairment that substantially limits one or more major life activities, including major bodily functions such as the functions of the immune system; has a record of such an impairment; or has an actual or perceived mental or physical impairment that is not transitory and minor."

By that definition, I am disabled when it comes to driving and parking but not working. Not to mention what a sticky wicket the "perception of impairment" is.

The calculated days of disability can be adjusted based on age, gender, and geography (I can't tell you how many times I was told my relative youth was an advantage), though I think family obligations should also be factored in. When Jamie looks at these numbers, she's determined that failure is not an option, and I know that sense of responsibility encouraged me to get back to work within nine months. On the other side of that coin, Jamie keeps recounting a story she heard once about a single mother who opted for time in jail over paying off old parking tickets, just to get away from her kids for a few days ("three hots and a cot").

I don't want to be defined by my disability, but I know I've come to identify myself as part of the disabled community.

Terms like "Handicapable" and "Differently Abled" used to seem saccharine to me; now I'm trying to come up with my own:  Misabled, Deabled, Reabled, Creabled, Crumbled. Anyone? It's interesting that in golf, a handicap is intended to even the playing field. I guess my handicap would be a 72, so -- as in War Games -- the only winning move is not to play.



The Recovery Curve

Another critical piece of data served to me in the hospital was a fuzzy graph of stroke recovery progress, showing that improvements tended to "plateau" (another way of saying there's nowhere else to go) after one year. I know that suggestion made 2010-11 especially stressful for me and my family. And while Year One did get me home, back to work, and walking, Years 2-4 have been far more accomplished in that they've shown me the flaw in the very notion of "recovery," because it is predicated on the faulty bias that I was in a pedestal-worthy state pre-stroke and that the true measure of progress is a return to "normal". While it is true that I feel safer having balanced my center of gravity and healthier about my improved stamina (though I still have plenty of mental fatigue), my real sense of physical satisfaction comes from my improvement in putting on coats; walking without a cane and carrying things; and just generally doing things one handed (is "compensation" functionally the same as "recovery"?). Not to mention that beyond the one-year plateau, I got my driver's license back, did the Maine Brain Aneurysm walk,
and started using my injury to educate others (speaking at last year's Maine Brain Injury conference, participating in a panel discussion this year), becoming a member of Brain Injury Voices, joining the  board of the Brain Injury Association of Maine, and having the privilege of speaking recently to a University of Maine class on the psychology of disability).

I don't know that I can quite call it progress, but I've also gained back all the weight I lost in the hospital -- plus forty pounds (I carry it mostly in my artistic integrity).  What else? I've also developed a bit of an online shopping habit

So, hokily, I'd say the past three years have been about moving from recovery into discovery. There are times I'm actually glad this has happened to me, for the people I've met and the purpose it's provided. Take that, Plateau.

Now What? 

I've had some setbacks this year on social and work etiquette. So I know I've still got a ways to go. I'm very happy with my volunteer and advocacy work and hope to expand that. And then there's always the Unknown. I'm still curious about how my brain has rewired and/or healed and would like to get a picture of that, either by fMRI or Brain Mapping. I also might try out the MindWave.

Of course, much of the Unknown has nothing to do with me, as we await the outcome of Jamie's surgery. We've done our best to prepare: Jamie's mother will be staying with us for awhile, I've set up a separate blog and planner space here, and the boys and I have been practicing our bedtime and morning readiness routines.

Problem is, Jamie runs a tight ship and I row a pretty leaky dinghy, in a circle. Our focus has to be on reversing our roles a bit: Helping her, helping each other, and helping ourselves. And she's going to have to let us. The only certainty is change.

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.

Saturday, August 23, 2014

Pet Years

I started writing this in December 2013, after our three-year-old cat, Newt (a.k.a. Fig or Sir Isaac) died following a brief battle with cancer. It was during that window when I'd see a dark, puddled  towel on the floor and forget it wasn't him. Of course, this got me to thinking about the relativity of time. Do we say one cat year equals five human years to help us anthropomorphise our pets (though anyone dying of cancer at age three or fifteen is tragic. Should he have behaved like a 15-year-old boy?)? Or, do we make that calculation to emphasize how much impact pets have on our lives (though we only had him three years, it felt like at least  fifteen)? The emotional effect of his age was largely tied to the tumultuousness of those particular three years in our family, as well as the fact that Newt was a bit of a troublemaker -- between the snout full of porcupine quills he acquired one night and the fisher attack he narrowly escaped on another. He was also a bit of a loud mouth. He was the perfect companion cat -- as intended -- for his slightly-younger brother-from-another-mother, Thomas (a.k.a. Tommy Two Tone, Lily Tomlin, Tommy Salami, Tommy Five Large (see surgery below), Tommy Tippy, Tippy, Tippi Hedren, Secretary of Health and Human Services Tommy Thompson, Reverend Tim-Tom, or Schmutz [because of the gray smudge on his white nose], depending on my mood). Newt and Thomas were literally Yin and Yang (see picture below of black-and-white Newt and white-and-black Thomas). Soon following Newt's passing, Thomas nearly joined him after a suspected hit-and-run. [expensive] Emergency surgery for a diaphragmatic hernia later, he's doing remarkably well, though he still won't make nice with our dog, Max, who we've had for about a year and a half. 

So I've concluded that calculated animal years are merely psychological. We had Newt for three years, and he'll always be with us. We've only had Max  (a.k.a. Maximum Puppydrive, Maximus Cutarius, and Maxi-one-in-a-million), for a year or so, but he's already as much a part of our family as I am (if not moreso). I only had my first cat, Misty, for about a month when I was four; but I'll never forget the day that grey tabby kitten arrived at our house, tucked into my uncle's winter coat; taking her to Show 'n' Tell in nursery school at Temple Shalom; and finding her curled up for warmth next to the refrigerator vent, unable to stand from distemper. As I said, she was only in my life for about a month but made a lasting impression (between giving our second cat her name and her twin sister hers -- Christy -- by rhyming association; as well as providing me with my highly-marketable pornstar name: Misty Valley View [first pet+street you grew up on]).

Misty (2) and Christy went on to live into their early twenties. While the 1:5 formula made them quite elderly, their lifespans simply represent my childhood.

Measuring time has become obsolete, since we work by perceived time anyway (One of my proudest skills is the ability to get things done in just under the amount of time I have to do it); geological time is so unfathomable, it's fairly meaningless; the internet has made timezones so moot that I carry on Words With Friends (Scrabble) and Dice With Buddies (Yahtzee) games across the country and ocean. I maintain intercontinental Facebook, Twitter, and text friendships at all hours of the day and night..

Looking at the clock and calendar, the best I can tell:

  • Seconds measure heart rates, how fast people run, and how long it takes a car to go from 0-60.
  • Minutes tell us how long we'll be sitting in front of a movie.
  • Hours remind us how long we have to get through the day.
  • Days are units in a week.
  • Weeks are units in a month.
  • Months represent an infinite amount of productivity.
  • Years are reminders to make Best-Of lists.
  • Decades define fashion and musical styles.
  • Centuries register socio-economic trends
  • As previously stated, millennia are relatively pointless in their vast conceptual expanse.
  • Bottom line, time is time. If you made it through before, you can do it again. I tell myself that often in moments of stress. As my high school English teacher, Mr. Clark, would say while roaming the classroom during exams, "Time is passing; even if you're not."
  • I recently binge watched two seasons of Orange Is the New Black (so I've had the theme song, You've Got Time stuck in my head for weeks. That all took me back to the idea of life being a sentence.

So. 

Just as we measure time in terms of our pets, we also treat certain types of years as pets:

  • Marriage years are pretty much 1:15 -- Jamie and I have known each other 18 years and  married for twelve, but I can barely remember what my life was like before her. And I'm sure every year with me has taken at least two off her life.
  • Parenting years are 1:30, in that, as with marriage, it's hard to remember or imagine my life without my kids. It's certainly not that I see them as adults (in fact, on some level I'll most likely always see them as children).
  • Vacation time: I'm now writing this on the last day of a family vacation in Vermont in a place I've been coming for 35 years. One of the nice things about doing that is seeing how little this particular locale has changed. You can see in the pictures below the hilltop tennis courts and swimming pool that will always represent summer getaways for me. I've also posted a picture of the wide railroad tie and gravel stairs climbing that mountain to fun. I did climb it this year, though it was about as intimidating as it was at age 8. So it's been a great vacation for all I've accomplished -- climbing those stairs, playing "mini-tennis" (just the service boxes) with Wyatt, swimming, walking around town, having quality time with my parents, siblings, nieces and nephew, playing mini-golf with Wyatt and my parents, catching up on Last Week Tonight, watching They Came Together,writing this (finally), making a dent in the novel my friend Julie very kindly dedicated to me (no, it is not about me, only loosely inspired by me in that it is about a thirtysomething English woman who illustrates children's books); having a night out just for Jamie and me; fixing and/or breaking my family's computers. And then there's the delusion of vacation time -- that without work and with the kids at day camp -- I should have ample time to do everything I want and then some. Not so. Vacation time also carries over a bit into Re-Entry to Reality Time. Thus the fact that I'm not finishing this until a week after our return to Maine.
  • Semicolon years: it's been four years since my aneurysm was diagnosed (my aneurversary; I need another term for my stroke's birthday on October 1 (cerebralation? suggestions?)), since I started living my life as a semicolon. The positive side of that lifestyle is a focus on hope and -- hypothetically (within reason) -- fearlessness. The downside of that somewhat romanticized outlook is the anticipatory limbo (yes, I just like saying anticipatory). This pause of contemplation has given me valuable perspective but at times puts life on hold (a.k.a. Shapcrastination). I know it's not just me. We all make promises to ourselves about what's going to jump start our lives: "Once I have surgery...recover....get discovered...start exercising (my walk, by the way, was downgraded to 1.5 miles)...the kids are in college...get a better job...go to college...get married...get divorced...move out of my parents' basement... buy a house... get clean...have a baby, etc. We tend to believe a change in conditions will make all the difference. I don't think that's inherently untrue, but I also don't think it magically leads to the progress we so desperately desire.
Semicolon time is more than other time. Not longer, just more. If time had mass, the past four years would be a black hole.

Yin and Yang (Thomas and Newt)

Puppy Max and Gus

Puppy Max and his boys



Puppy Max and his friend Stella. A year later, Max is bigger than she is.




The pool at the top of the hill.


The tennis courts in the middle of the hill (as seen from the pool at the top).


Hard to see, but these stairs just keep on going up to the courts and then the pool.






Saturday, July 12, 2014

Fill It Up

I recently completed a 12-week Mindfulness course at the rehab.

While many people equate mindfulness with meditation, there's a lot more to it than that. My goals specifically were to improve my concentration and focus, as well as to improve emotional control. that first goal has certainly been triggered by my stroke (though I wouldn't say it was ever my strong suit). The second goal may surprise people who haven't lived with me and who I have tricked into believing I'm even tempered and mild mannered. I feel like this class has provided me with an additional set of tools and strategies; and while I know I won't do accurate justice to describing its tenets, I will do my best to explain how I think these practices are helpful to me.

Tune in, tune out, turn on 

Many mindfulness exercises do in fact begin with deep breathing (in through your nose, out through your mouth) and relaxation but ultimately come down to concentration. Many classes would begin with
a guided meditation -- some soothing, disembodied  voice on a CD, leading us into, say, a secret garden. It would then be up to us to flesh out the environment's sights, sounds, smells, and sensations, all while tuning out the ambient artifacts of the room in which we were actually sitting. Needless to say, that's not always an easy task for those with scattered brains. Eventually, we moved on to touring our own "happy places" (no, that term was never actually used). I found this especially challenging as I took myself to Alcock Tarn (a small, manmade pond -- dug and stocked with fish by Lord Alcock-- on a hill near where I lived in England). What I found most challenging about this exercise was deciding which "me" I was taking on the journey -- 1989 Kenny, who thought nothing of trudging up a steep hillside to sit beside a mirror-still lake while Royal Air Force jets performed low-fly maneuvers below him; or the 2014 Ken who probably wouldn't  be able to make it up that hill and who would think twice about even sitting on the grass, knowing the effort involved in getting up again.Ultimately, while just trying to concentrate on the pastoral scene, I was arguing with myself about who I wanted to allow myself to be. In the end, despite the distraction, I won out. Because, you know, Radical Acceptance (another key principle of mindfulness). Jamie captured it well long ago. I don't have to like where my life is -- every moment of every day -- but I do have to be okay with where I'm at now or else melt down.

As you can see, a lot of mindfulness -- for me -- is about choosing how and where to concentrate my very limited concentration and energy. Ridiculously, I've actually told my kids, "Choice is a super power." It's all part of my best-selling parenting manual -- Focus Pocus: The Magic of Getting Your Children to Pay Attention. Learning to carefully choose my battles has helped considerably with emotional control, as has learning to focus in on certain sounds (like laughter) and tune out others (like teasing). And recognizing when to simply remove myself from a situation. Another good mind-over-matter trick is to actually zero in on pain (such as at the dentist), in order to dampen the sensation. My personal spin on this is to challenge myself to smell or taste a food, simply by thinking about it. If scents can trigger memories, why not the other way around?

Shiny Objects

At work my challenges often center around "Executive functioning, " which is often affected by right-side strokes. Planning and prioritization can be a struggle, as I'm easily distracted from doing the things I should be doing by the things I want to be doing. Not that strange, but my manager and I have been working on ways to turn those should activities into "shiny objects" I'll want to tackle. Not exactly Mindfulness, but a useful strategy nonetheless.

Opposite Action

As George Costanza discovered, sometimes you should do the opposite. Opposite Action is a Mindfulness technique which has provided some nice, tangible results for me. While constant vigilance and planful movement has been a key to keeping me physically balanced and safe for the past four years, fear of falling has also held me back somewhat from certain returns to previous normalcy. As usual, it's a matter of finding a way to reasonably test boundaries. For instance, while it still would not be advisable for me to attempt to run (or even jaunt), my tricycle provides a safe way for me to exercise and satisfy whatever vague, self-propelled Need for Speed I may have. Enough so, that when presented with the proposition of a September 5K walk/run to support brain aneurysm awareness and research, I ignored the fact that I haven't walked nearly that far post-stroke, did the opposite, and signed up.

Even more basic, I'd been showering sitting down for four years, except on the odd occasion when I was someplace with a walk-in shower. Then, while at the hotel in D.C., my handicap-accessible bathroom turned out to be a tub/shower with grab bars. Faced with the options of calling to ask the front desk for a tub bench, stepping over the edge of the tub, or simply not showering before meeting with my Congressional representatives on a hot spring day, I did the opposite of what I was used to, faced my fear, took faith in the strength and balance I've recovered, and stepped into that tub so as to not stink up Capitol Hill (insert your own Republican joke here).

And, once home, considering that we have the same layout of grab bars in our bathtub, I've continued to shower standing.

The victory may be all in my mind, but I'll take it.

Sunday, June 01, 2014

Cruel and Unusual Punishment

Not to worry: Nothing [new] has happened. Just my usual tangential thinking.

It's just that I recently attended a stroke conference, mostly to help man a table for Brain Injury Voices. That put me in a position to repeatedly rattle off my laundry list of experience with stroke. That list is somewhat tattooed on my brain (so to speak) because of a t-shirt Jamie got me for Father's Day last year. It reads: "I had an aneurysm, two brain surgeries, a heart attack, and a stroke, and all I got was this f*ing t-shirt". It's a big hit at support group. There's no room for more, but I suppose I could add, "a cerebral hemorrhage, a craniotomy, cranioplasty with a plastic skull flap, two months in rehab, and a grand mal seizure." I'm not showing off or claiming my list is longer or worse than anyone else's. Some speakers at the conference (mostly rehab doctors and therapists) reminded me how lucky I was in how my stroke affected me. For instance, while I experienced a little"left-side neglect," some stroke victims are literally unable to see one hemisphere of their world (going so far as cutting off half of words they're trying to read). Some right-side stroke sufferers also experience Anosognosia, making them completely unaware of their deficits. The speaker gave an example of one patient who would press the call button during the night, stating that someone was grabbing her in her sleep, when in fact she had simply rolled onto her own stroke-affected arm. There are always those, "There but for the grace..." moments.

Here's where I'm going -- I was also struck by the recent, "Botched execution" in Oklahoma. Wouldn't you think an execution is "botched" only if the prisoner survives?Apparently not. It was one of those times in our history when, perhaps, a reasonable debate will begin in our country only because something went wrong and tested the tenuous, though intractable, boundaries of our Constitution. It feels fairly obvious to me that The Founders' intentions in the Eighth Amendment were to prevent the abuse of power by the government (just as I would apply that intention toward the Second Amendment). Why would the defining document our society holds so dear rely on suffering to determine how and when we should adjust our willingness to be somewhat flexible about which freedoms we hold most self evident -- whether that be the right to sentence a criminal to death or to own a gun)? Personally, I don't think it does; and that's where we've gone off the rails -- extending our goal to run a government which does not oppress its people, into an unreasonable  philosophy of life, built around expectation, entitlement, and "fairness". I'm coming to accept, "I deserve," as a rationale for choices -- as long as that sense of deserving comes from a place of self worth -- but I don't think I'll ever be able to get behind anyone's belief that he or she is owed something simply because of historical advantage or suffering. 

When I heard Kenneth Feinberg speak in Washington about his time running the September 11 Victim Compensation Fund (amongst other, similar disaster relief funds), I was in awe of both the magnitude of his task -- knowing that no amount of money could right the wrongs committed -- and the nerve of some claims he received. One such example he gave was from a person wanting compensation for losing a loved one in the 1993 World Trade Center bombing and another who called regarding the 1995 Oklahoma City bombing. I do get it. I get the desire for something resembling fairness or justice, as well as the desire on Mr. Feinberg's part to create an impactful speech by repeating the phrase, "Where's my check?".  As much as I've at times wondered if my suffering is some kind of fair payback for my otherwise blessed life, I understand the desire to get what you believe is coming to you.

But, as I say a lot to my kids: "Blame is lame." As is, by the way, using the phrase, "Blame is lame." Life is like a box of chocolates. Or, maybe life is like a crock of sausage -- You don't want to know how it's made and it's never made the same way twice.

Sunday, May 11, 2014

Policy Wonks

There are rare and precious pockets of time in our lives -- time insulated from reality and which create a simpler, focused alternate reality with a select community of membership. For me, I think the first time I recognized that unique brand of experience was "6th Grade Camp" (a week-long sleep-away camp when I was in [you guessed it] 6th Grade). A number of summer programs I did in high school would go on the list as well; freshman year of college; Jamie and my honeymoon in St. John;  the summer Wyatt was born (during which Jamie was on maternity leave and I was on unemployment after my teaching position was eliminated), since we had nothing to do except take strolls down the road, sit by the pond, and focus on being freaked out by parenthood; college reunions. And on some level I would even count my months in rehab as one of these pockets, for all the relationships I nurtured and the focus I was allowed on healing.

This past week in Washington, D.C., was another such chance to shed some of the concerns of daily living (don't know how I survived three days without being screamed at or screaming at anyone), be pampered by a hotel microcosm and enjoy having all my needs met within a square mile radius of the lobby (if not in the lobby).

We, the members of Brain Injury Voices, were afforded the opportunity to focus our energy and, yes, our voices on speaking about very personal issues with people we could normally not easily access. A very busy Sunday through Tuesday shaped up thusly:


  • Flew in Sunday afternoon. Air travel gave us a good opportunity to get our routine coordinated -- me in a wheelchair while my left-hand entourage cared for my luggage (I'm one of the most physically disabled of the group).
  • Sunday dinner in one of the Washington Hilton's excellent restaurants (paid for through the vast generosity of many donations).
  • Early Monday morning breakfast and Hospital Award for Volunteer Excellence (HAVE) ceremony with members of the American Hospital Association. While delivered right in the hotel, this event did give me my first opportunity to ride on an escalator since my stroke. That personal achievement and our group's award are emblematic of all we've been able to accomplish in spite of (and because of) our brain injuries.
  • Monday's lunch, also courtesy of the AHA, was most noteworthy for the keynote speech by "pay czar" Kenneth Feinberg (more about that another time).
  • Monday afternoon gave me and some members of the group a chance to talk with a representative of a disability insurance Political Action Committee. While I may have to walk a thin line of conflicted interest when it comes to disability advocacy, I've realized more and more how important and advantageous my unique perspective (as both a disability insurance claimant and employee) 
  • can be in influencing both public and private policy changes on brain injury, disability income protection, and return to work.
  • Monday dinner was with the Brain Injury Association of America, which shed a lot of light on the need for work to bring attention to some of the unique challenges of brain injury (an often "invisible" condition) and build awareness toward easing those challenges, including the reauthorization of the TBI Act (which I didn't even know existed).
  • Tuesday was our most politically-charged day -- a visit to Capitol Hill and meetings with staff from Senator Angus King's (I-ME) and Representative Chellie Pingree's (D-ME) offices, with about a mile-long walk and secret subway ride through the Congressional catacombs between lobbying sessions. These conversations renewed my faith in our political system.

All of this hard work came after equally-difficult weeks of fundraising and planning (though, fortunately -- because the itinerary was mapped out by brain injury strategists -- there was plenty of rest time built into the agenda and ample accommodations made for and support provided to those of us who needed it).

Why is it we "practice" things like politics, law, medicine, and religion? Maybe because they're all activities without definitively successful outcomes? Parenting should definitely be added to that list. Hell, living, period, should be on the list. I, for one, am a practicing human being.
My first attempt at a "Scalpie" in Senator King's office (not sure how he procured that sign).

Then I thought it might look better without the nose.
Proof of Legitimacy


We got everything we could have wished for, and more.

Sunday, May 04, 2014

Flying. High now

Guess where I'm blogging you from.

There's Wi-Fi on the plane to Washington, DC, and I have the world's smallest Bluetooth keyboard paired with my smart device.

We'll, I did. Now I'm about to go to sleep in the Washington Hilton on this first night of the Brain Injury Voices Does Washington tour. There's plenty to come and will be plenty to tell, but I'll tell once it comes.

Good night.

Sunday, April 27, 2014

Acquiring Minds Want to Know

As much as I've acknowledged for nearly four years that I've been somewhat physically hobbled by my stroke, I think I'd been somewhat unwilling to accept the higher significance of my condition. It's really only been the last year that I've allowed myself to identify with Brain Injury and the Brain Injury community, though I'm much the better for it. There's a mass of semantics at work there, between the mere word, "injury," the term Traumatic Brain Injury (which I've heard the most but which was more recently clarified for me as the external branch of Acquired Brain Injury (any Brain Injury occurring after birth [i.e. not  hereditary, congenital, or degenerative]). Because, ya know, Brain Injury is an acquired taste. And, while a rolling stone gathers no moss, it picks up a ton of other crap along the way. I was introduced to ABI at a new brain aneurysm support group sponsored by the Brain Aneurysm Foundation. Funnily, while my aneurysm was the start of all my trouble and the stroke an additional acquired extension of it, that bubble in my head has long taken a backseat to my stroke/"Cerebrovascular Accident"/"Cerebrovascular Insult"/ "Brain Attack." There's no adequate language to sum up the collateral damage.

As occupied as I've been of late with being brain injured and using that standing to its best effect (i.e. paying it forward), the aneurysm support group (which consists mostly of aneurysm rupture survivors, family members of people tragically killed by an aneurysm rupture, and the rare anomaly [like myself] who had the good fortune to discover his aneurysm pre hemorrhage) was a psychosomatic wake-up call to pay closer attention to the headaches I've been having. Not to worry -- my sense was and my doctor agreed that the pain was craniotomy related, since it was local to my skull and worsened when my reassembled boneflaps move (such as when I yawn). Nevertheless, with my flight to DC looming large, my doctor ordered a precautionary CT scan.

Fortunately, the results showed my head to be "unchanged" since 2012 (which is about the best you can hope for when you have a junkyard for a noggin). As usual, I've compiled some images -- the first is most X-ray like, the others are flipbook movies of different series of scans (I recommend slowing them to half or quarter speed in the YouTube settings). Sure looks pretty weird to me, but the radiologist said, "No additional...abnormalities are identified". Don't think I could fit much more anyway.

Titanium aneurysm clips are intact.









Saturday, April 05, 2014

Lists

Our lives are ruled by lists: "To Do" lists, Reminder lists, Shopping lists, Ingredient lists (depending on your gluten or nut or vegan sensitivities); and Buzz Feed, ViralLine and Huffington Post lists of irrelevant -- yet immensely-important-when-they-pop-up-in-your-Facebook-Newsfeed -- things (I'm looking at you, 13 Reasons Why Small Dogs Are A Big Deal and 19 Hilarious Roller Coaster Photo Ops). Recently, a founding member of my brain injury group passed away but left us with a token wholly representative of her wise, giving, and funny nature -- a list called, Things I Can Do. While I don't feel it's my place to share her list in its entirety, (except for my personal favorite, #7 -- "Bug People"), it did inspire our group to make our own lists and focus on what we have, not what we've lost. This is the list I came up with for myself:
  1. Figure things out.
  2. Write/share/educate/provide perspective to others.
  3. Snowshoe
  4. Drive
  5. Tricycle
  6. Be a father.
  7. Work
  8. Think.
  9. Overthink.
  10. Be Myself.

After seeing what I'd spit out off the top of my head, I realized my list could be broken down into the following categories:


  • Things I Can Do
  • Things I Can Still Do
  • Things I worked hard to do again
  • Things I can only do because of the stroke.
What I like about the list is that it focuses on my strengths. As a society, we zero in far too often on our weaknesses and how to "fix" ourselves, when our strengths usually outweigh our deficits. We also tend to overshoot when it comes to what we believe we can do and instead take it as a challenge toward self improvement. I think I've been pretty clear in the past about how I feel about New Year's resolutions, and grandiose bucket lists (who knows what tomorrow will bring?) Thus, before and after my surgery, I maintained, "Totally Achievable" Bucket Lists. Unfortunately, my Before list was lost in the internet ether, but I've done my best to recompile it from memory:



  1. Make French toast with the boys.
  2. Give tuna juice to the cats.
  3. See the end of Lost (not sure it was worth it)
  4. See the end of Star Wars. (not sure it was worth it) [and I didn't know then that the series wasn't over]

After currently looks like this:

  1. Make French toast with the boys
  2. Juggle (done with one hand)
  3. Hula hoop
  4. Go bowling
  5. Swim
  6. Walk on the beach
  7. Pass driver's test
  8. walk through automatic revolving door
  9. bike/trike for ice cream with the kids
  10. Use an escalator

I do have more grandiose aspirations (publishing my book, tricycling long distance), but I'm unwilling to call those goals Totally Achievable because I can't allow myself to take anything for granted. Yes, it can be exhausting to be that hesitant about the future; but it feels better than getting my hopes up too high and either being disappointed or regretful.

That said, I did face my fatalistic fears recently and in March allowed myself to think as far ahead as May! -- to an award ceremony in Washington, DC, where Brain Injury Voices will be accepting a HAVE ((Hospital Award for Volunteer Excellence). I've booked my plane tickets and hotel room and am now writing yet-another fundraising plea (thanks to everyone who helped me reach my goal to buy a recumbent tricycle -- I pick it up tomorrow!), so our group can make the journey to accept the honor, meet with Congressional representatives, and visit with brain-injured service members at Walter Reed Medical Center.

I now close with a list I recently discovered in my blog Drafts folder from August 2005:

Pet Peeves


Ironically, as well as being fodder for another pet peeve, I've written this once already this morning. It's ironic because I originally decided to write this list in my blog so that it wouldn't be lost in the ether. Then again, the "ether" would have been Tess' e-mail, since she's the one who requested the list.
  1. Entitlement
  2. Entitled Drivers.
  3. Entitled Customers.
  4. Entitled Noise.
  5. Baseball movies that use tight shots on the action
  6. Do-rags (though not schmattes).
  7. Entropy.
  8. Machismo.
  9. People who tell you what you should do to improve your life.
  10. Big books with small print.
  11. Not remembering things I did two minutes ago.
  12. When you lose everything you've been working on for the last hour.
  13. Not anticipating consequences
  14. Lethargy
  15. Extremism
  16. Pet preferences (everything isn't frowns and grimaces, after all). [not sure if that was an actual pet peeve or the start of a new list (like having the toilet paper roll flip over the top)]
  17. Not being able to think of anything else.
  18. Oh, the powder at the bottom of the Cheerios bag/box. I hate that.