Sunday, December 16, 2012

Head Transplants

My name is Ken, and I like cutting off people's heads and putting them on other people's bodies.

No, the irony of my hobby is not lost on me, given my own Frankensteinian existence, but it all began long before I had my head cut open for scientific discovery and bloodsport.

I take you back to New York City in the mid- 1990s:

I was working at an online database of TV and film industry information, where I had easy access to media press kits and a photocopier. I don't know exactly why, but one day I took it upon myself to become the designated maker of cards for various occasions. That amounted primarily to copying pictures from press kits, copying other pictures from office gatherings, and cutting and pasting the copies as I saw fit. I don't have any original examples to share, but I have mocked up a couple of digital re-creations of ones I remember, though I couldn't tell you why I compiled these particular images. The first is a mash-up of Peter Bogdanovich's (seen at the right) drama Mask and Jim Carrey's comedy The Mask. (I believe I originally used the advantage of a physical medium to make the tongue spring off the page). The second is a mash-up of Speed and Forrest Gump. (I think I was actually drawn to the visual joke of the bus stop and only later enjoyed the serendipitous word play.) I'd like to think my handy work brightened the days of my fellow data entry drones:

(Get it? -- "Speed Gump," like "speed bump".)

After that, I moved to Maine, worked for the same company from home,  and didn't have the equipment or inclination to  continue that creative outlet until 2006: I was a stay-at-home father with an infant son who napped well. I was also the youngest child in a family who had established a practice of creating pictorial calendars for the grandparents. And I'd taught myself PhotoShop.

 In 2007, I did another calendar, with a little more poetic license:

Blue Steel
Which one's the real turkey?
"Tiny but Mighty" was the super hero we invented for Wyatt, who was always in something like the third percentile on the growth chart.
Wyatt's World

As is often the case when a second child comes along, since 2008, the calendar tradition has been neglected. But this was part of our 2008 New Year's card:

It was also around that time that I started at my current job and began translating my previous work practice to the digital era (What has been dubbed by others as the age of the "Ken Card"). I keep them all in a mysterious folder called, "Eskimo" (movie reference, Wilk?). With the caveat that I have been granted no permission to re-produce or modify copy-protected materials, I present some of those works (which I think actually fall under Fair Use guidelines):

In 2007, my AVP at the time celebrated his 30th year at the company, and I created a slide show of highlights from his starting year, 1977.
Another from Dave's slideshow.
Anne's retirement
Lisa's return to work after successful cancer treatment. The fig was a metaphor for her shrinking tumors.
My father's retirement
Heidi, our Personal Effectiveness trainer's and Potterphile, departure for another job.

In 2011, when Dave could not be present for the Portland team picture, I made sure he was still included (I don't remember the point of the Coke bottles).

I'm not above being the subject of my own jabs, so when I was about to return to work fulltime, I took a page from a movie about a man who, like me, suffered a brain injury, learned to walk again, examined his former self, and chose who he wanted his future self to be. I was also recently reminded of it by this amazing piece on NPR.

Most recently, but not least, the launch of my friend Laura's novel (now available).

The point -- if I ever have a point -- is that these represent the best parts of the brain I had, still have, and will have.

Saturday, November 24, 2012

Downs and Ups

This holiday season, I am thankful that I's and O's remind me to turn lemons into lemonade, and downs and ups to turn falls into flight. I believe it was the great Douglas Adams who said that flying is merely falling down and forgetting to hit the ground. Okay, I've paraphrased that incorrectly. It should be:

The Guide says there is an art to flying", said Ford, "or rather a knack. The knack lies in learning how to throw yourself at the ground and miss.”
Douglas Adams, Life, the Universe and Everything 

I was talking to a friend recently about my last brain dump, and she was saying that she prefers when I look forward and not back. While I do agree that living in the Now is best, sometimes the present is a tantrumming child which doesn't deserve the attention. Also, if I were truly going to live in the past, I would not dwell upon these past two years; I would certainly be grasping further into my youth and the relatively infinite promise it held.

My Now is a near-constant reminder not to forget the lessons of the recent past and the limitations they've inflicted on my present. I was originally envisioning this post as a "fall log," but I don't actually think each of my stumbles warrants description, nor do they negate the progress I've made. They've ranged in personality from frightening (my first, in the bathroom); to dramatic (the flipped desk chair); to amusing (the Nestea Plunge into the waiting arms of Melissa Whitaker). They've all been somewhat unexpected.

Case in point: about a week ago, while bending down to pick up the trailing electrical cord for our bathroom space heater – something I'd done successfully every morning for the previous month – I neglected to evenly distribute my weight between my left and right feet and suddenly found myself tipping to my left. With a thud I was on the floor, though, fortunately, only hit my hip and not from a great height. At the sound of my collapse, Jamie and Wyatt rushed out into the hallway, concerned I'd injured myself. The bright side is that I was not hurt and was able to stand up on my own. It was mostly a bruise to my ego. As much as this and all my other lapses have been frightening,  they are necessary reminders to remain vigilant. But they are also my Cecelia, shaking my confidence and leaving my family in a state of unease about my safety.

No pun intended, I don't want to let these little setbacks get me down. As much is I have to focus on my footing, balance, and safety, seeing myself as either stable or fragile can be either a jinx or a self-fulfilling prophecy, respectively,  leading to mishaps.

So long and thanks for all the turkey.

Sunday, November 18, 2012

Brain Dump 2: I's and O's

Remarkably, it's been just over two years since my aneurysmectomy and subsequent stroke ( is that an aneurversary?). What do you get your stroke for your two-year anniversary? Well, I'm giving mine a healthy dose of perspective (after all, I am the designated Perspective Keeper) and a fistful of ongoing resentment.
To think that two years ago I could hardly sit up in bed without wearing a helmet and having a cadre of spotters surrounding me. Now I'm back at work in the office fulltime and periodically walking short distances without my leg brace or cane. The other day I even placed my cane on an acorn in the driveway and hardly stumbled as it rolled me away. A couple of weeks ago – just following Hurricane Sandy – we took a family walk farther down the road than I've been able to go since we found our cat Thomas in July 2010. I can't say as much about increased mobility in my left arm and hand, but yesterday – for the first time in a very long time – I opened a small container by holding it tightly enough in my left hand to allow my right to turn the lid.

My apologies if this is a rehashing of things I've said before, but as with the bi-annual self-assessments we completed last week at work, I find this exercise validating and reinforcing in that it shows I have in fact accomplished something even when it often feels like I'm sitting still.

Of course, as much as it's practically happened overnight, it's also been a long transition of rebuilding my brain, learning to walk again, learning to do just about everything with one hand, and willing myself forward. We've lived in and with and through this whole experience and can be grateful for how far we've come. Wyatt very kindly asked me the other day whether it's hard having to do all the things I have to do, the way I have to do them. Short answer: It is, but more and more I'm used to it. He said he's used to it too, which is hard to hear. As much as I'm glad we've somewhat settled into our new normal, it's always somewhat crushing to accept. The topic I've chosen for this commemorative brain dump is admittedly a subject which may make some squeamish (enough so that it's warranted the creation of a new blog post category/label, called, "TMI". That said, I's and O's happen to embody so much that's been essential to my experience – from the indignity of institutional living, to the dedication of my care givers, to the sheer hilarity of my circumstances at times. Not to mention that my vanity and modesty pretty much went out the window the minute I had my groin shaved for my angiogram.

Most literally, I's and O's refers to the detailed record-keeping in the hospital and rehab regarding how much food and liquid I took in ("I's”) and how much solid and liquid waste came back out ("O's”).

For practicality's sake, I appreciate the medical need to watch out for renal failure. But, as you'll see, this practice can go to some extremes.

When I stretch the metaphor further (as I am prone to do), I'm left with that whole perspective question and the desire to monitor the nutritious value of all my experiences. For instance, I began writing this during some rare alone time in the house. Forced to contemplate how best to use this solitude, I knew this entry was an important To-Do for me, but so was a lack of tangible productivity. Sometimes less is more, especially when it comes to quiet. (I've been trying, unsuccessfully, to instill that idea in my children). It's also only in extending the idea of monitoring what I take in and what I deliver that I realize we tend to put a lot of pressure on ourselves to spin the every day straw of our lives into gold, whereas no matter what healthy foods we eat and drink, what comes out the other side is only the scrap– we're supposed to silently retain all the nutrients, turn some into energy, and dispose of the rest. That's somewhat unreasonable as well – burning more calories than we consume. How does that translate spiritually? I think we're in a current culture and economy calling for us to find ways of making more with less.

While being closely monitored in the hospital for those three months or so, I think I actually lost 15 or 20 pounds. I've easily gained that back and then some, often struggling to close my pants (did I mention I have to do it with one hand?) Sometimes I use a hair band as a waist extender (to paraphrase and make my Facebook self less obscure, I mean an elastic, not Mötley Crüe – originally, I said Ratt). To make this struggle easier, I've considered taking Enzyte to make my right hand bigger (does it not work that way?), but it ultimately will come down to losing weight. I do eat fairly healthily and moderately but face the same hurdles as anyone in finding time to exercise. Uniquely complicated for me (not an excuse) is the fact that it is difficult for me to safely exert enough energy to burn enough calories (high speed on the treadmill is about 1.5 mph. Add to that a concern that exhausting myself could lead to setbacks and seizures.

Early on after the stroke, I was on a strict liquid diet through a tube surgically implanted in my stomach (that tube stayed with me long after I was cleared to eat and drink orally, “just in case”. In fact, it was only “pulled” (a procedure often described to me just that way, always to a reaction of fear and disgust) two months after my stroke, following my final surgery. Jamie said I turned white as a ghost when the deed was finally done, though it was less uncomfortable than when they put it in.
Through my tube, I received all my food, fluids, and medications.
After passing my swallow test, I graduated to “mechanical soft” foods and “thickened” liquids (which had the texture of drinks mixed with apple sauce). The tube was actually a preferable way of taking my meds; I have always been one of the world's worst pill takers – my joke is that at the age of 15, I would take 38 St. Joseph's chewable aspirin for a headache, just to avoid swallowing Tylenol. Now I have to take about eight pills a day and have actually started dropping them in yogurt or applesauce and even then often chew them instead of swallowing outright (scoff all you want, handful pill poppers, I don't care; I actually think it's quite reasonable of my gag reflex to find swallowing without chewing unnatural). I've also moved on to gummy multivitamins and, ironically, back to one St. Joseph's aspirin a day (though now as a healthy cardiac regimen, though they've disappointingly changed the flavor). I made the recent change to using thicker substances to take my pills after doing a spectacular coffee spit-take all over the wall of my office, much to the horror of some of my kind co-workers,who I'm sure feared I was having some sort of fit, as coughing throws me off balance a little and causes my left arm to spasm.
What I didn't realize until toward the end of my hospital stay was that my intake and output were being conscientiously monitored and logged (rim shot). Certainly, when my diet was strictly in liquid bag form, they knew exactly what I was consuming. Once I moved to solids, There was most likely a record kept of the foods I ordered each day and how much was left on my tray at the end of each meal. Monitoring my output was mostly anecdotal, except when I was peeing into a catheter bag or a urinal bottle. Especially right after surgeries, there seemed to be an urgency over whether I had peed, and that concern was often piggybacked with the threat of a catheter. After my first surgery, I know there was one time they did have to resort to a “straight cath” because I was not delivering enough. They would even role in a portable ultrasound machine, so they could measure exactly how much urine was in my bladder and compare that to what was in my catheter bag or urinal. My family very conscientiously encouraged me by downloading waterfall sounds to their phones (thanks, Maggie) or putting my hand in a basin of warm water, just to help me avoid the dreaded cath. One of the first things I asked after regaining consciousness (in writing, I believe), was whether I was going to be incontinent. I know I was aware of having soiled myself and was worried there was no hope for anything but that for the rest of my life. Fortunately, that has not been the case, but it did lead to the need for adult diapers during that first month or so. They should call them Depends not just because you can depend on them but because how you take them off depends on what's in them. One thing they certainly don't do well is breathe, because I was accosted by a yeast infection in the creases of my groinal region. I was told by my co-workers – who are predominantly female – that, even more than usual, this made me “just one of the girls”. All I knew was that it made me itchy and uncomfortable, and could apparently only be treated by some rare and mysterious anti-fungal powder they had to special order from the Albanian talc mines. Again, my friends and family very diligently dogged the nurses about whether this elixir had been procured, so much so that I silently dubbed them my “'Nadvocates”.
Prior to the stroke, at least not since childhood, I had not had any issues with my “bowel routine”. In fact, My co-workers would often razz me as I walked down the hallway every day with a magazine tucked under my arm (Which reminds me, I never did write that letter to KM World, telling them I'm a regular reader of their fine publication). However, apparently during an extended hospital stay, patients will often experience some amount of constipation. Every other day was the tolerable limit, and I was constantly polled as to when I'd had my last bowel movement. Once I did go, I was then asked to describe it. Even after my rehab discharge, I messaged my nurse Megan with a simple, “LS” (Large Soft), so she could close out my file on a high note. I still monitor myself pretty closely and am not as regular as I once was, but I'm less strict about policing it than the pros (thank god).

I's for O's
A regular part of keeping regular was the inclusion of a stool softener called Colace with my other medication. If the Colace wasn't enough, after two days I'd be asked if I wanted a “Brown Cow” (warm prune juice mixed with Milk of Magnesia (“Milk of Mag,” at the rehab, as much as Phillips wants you to call it “MOM”). If that didn't work, I'd be asked if I wanted a “supp” (suppository). “Wanted” is an awkward way to phrase that question; when it was time, there wasn't much choice in the matter. As it was explained to me, the Brown Cow was Liquid Plumber and the supp was a snake. Needless to say, the cow was preferable to the snake, but they never disappointed. I also always had prune juice with my breakfast, which would often spill (sorry, Hannah).

Awkward Moments
If you aren't already cringing from the previous recollections, here are a few special moments on our theme:
1. Upon returning to the rehab after my cranioplasty, the readmission process required a urine specimen. As most of you probably know, someone has determined that the best samples are taken “midstream”. This requires a Raiders of the lost Ark idol switcheroo after beginning the process. Needless to say, it was difficult for me to swap out my urinal (pee jug) for a small, sterile specimen jar. A nurse came in and offered me what seemed to be the holy grail – what I thought she said was a sterile urinal. Turns out such a thing is a mythical creature (a uricorn), so my CNA was tasked with hovering outside the bathroom while I sat on the toilet and waited for the urge to strike. Unfortunately, the urge was fleeting that day, and she had to wait a good 20 minutes before I was even ready for her to help me with the idol swap (sorry, Jena), though it did give me plenty of time to try and memorize my only bathroom reading material once again (I still can't remember exactly how to say “powder-free synthetic surgical gloves” in Spanish and French, as many times as I tried).

2. This is more weird than awkward, but the first time I detected post-stroke movement in my left arm was mid defecation. All of a sudden, my forearm and hand started smoothly floating upward. It's one of those oddly-encouraging connections my brain has formed, partially misdirecting the signal for one form of effort toward another part of my body.

3. My OT Chrisanna's birthday recently passed, and I can only hope it was two years ago to the day that she strolled into my room for a session, only to discover the ridiculous spectacle of me trapped in my wheelchair and wrapped around my bedside curtain, while trying to use my urinal. Long story short, I'd been left in my room after PT; didn't have approval to transfer myself to my bed; my urinal was out of reach; and when you gotta go, you gotta go. I imagine it looked somewhere between this and this (more the first than the second).

4. I think when I was back at Mass General for my cranioplasty, during that critical second day without a movement, I was sitting (and sitting) on the toilet when a nurse stepped outside the bathroom door and bellowed something I would be quite happy to never hear again: “Have you voided yet!?” This along with the concerned , “Of course, we don't want you to strain.” And, “Do you want a supp?” She knew, as I learned from one of my favorite X-Files episodes, straining can cause an aneurysm to burst. No pressure. Just breathe through it.

5. I fondly remember the first time I peed standing up after the stroke: it was in the shower at the rehab ("It's all pipes!"). Also a good Scott Pilgrim clip.

There. I told you it was probably more than you wanted to know, but there's no need to be sqeamish. As the book says, Everyone Poops. And if you or a loved one have ever had an extended hospital stay, or will, you should be prepared for it. Same goes for caring for a newborn – you will learn to tolerate depths of the grotesque you never imagined possible. These are ultimately the things that most universally define our humanity – pooping, peeing, and how annoying it is to bite the inside of your cheek.

Friends and I once debated the nature of being high maintenance. I can safely say I win, hands down, since I'm the only one of us who's needed his ass wiped for him in the past two years. Beat that.

In conclusion, the best depiction I've seen of institutional toileting is in this scene from the very satisfying 50/50, about a young man dealing with a spinal cancer diagnosis, chemo, and surgery. This scene follows his surgery, when he's still using a catheter bag. It's just like that, though not quite so romantic.

Monday, September 03, 2012

The Insanity of Hope

I'm afraid this is one of those entries where I'm going to blather on and on, waxing philosophical. Sorry, but it's the part of my brain that still works.


I know the title of this post isn't going to earn me an invitation to the White House, but it's based less on a definition of "hope" as Einstein's definition of "insanity" – doing the same thing over and over but expecting different results. In my work, that tactic at times pays off, as I can push through a computer bug or slightly change environmental variables without even realizing it.

In my personal life, however, that is just out-and-out out of touch with reality. Examples: asking the kids to keep stray toys off the floor, hoping that I will wake up miraculously whole.


I suppose hoping for the best is merely optimistic, although I've been struggling with that as well. As much as I do hope for the best, I certainly don't consider myself an optimist, as that term -- for me -- carries the stigma of unreasonably expecting the best possible outcome. I think I've made my views on expectations, assumptions, entitlements, and deservedness clear. I've been trying not to latch on to pessimism either, though I did wear that label with pride in my youth. It think I've landed on cynicism, which I've personally defined as hoping for the best but not being surprised when reality doesn't quite match those wishes. As much as I prepared for the worst prior to my brain surgery (drafting my will and Do Not Resuscitate order), I never truly believed I would need them. Perhaps that belief was enough to stave off the worst. I'm not willing to give up the ghost on that, but I've also become pretty disillusioned by the power of positive thinking and prayer (which I package together). I know of and I'm thankful for all the goodwill projected my way over the past two years. At the same time, it's hard not to wonder why it somewhat missed its mark and what the larger meaning and/or purpose is. Jamie asked the kids the other day how they would spend their perfect day. They (Wyatt, Gus, and Sam – my starter child-- who I've know and babysat  pretty much since he was born ten years ago) all said they would learn Spinjitzu and discover their true potential (thank you, marketing geniuses at Lego). I'm not so much looking toward Spinjitzuing anytime soon, but the latter sounds pretty good. I was considered a precocious child and struggled for a long time with the realization it would be very hard to live up to that potential, plus that I couldn't be precocious forever – much as having a stroke at 40 could be considered ahead of my time.


I don't know that there's an official ranking, but I would guess that the top two philosophical questions are:

  1. what's the meaning of life?
  2. Why do bad things happen to good people? Then again, why do good things happen to bad people?

I've always thought of myself as a relatively good person and not in particular need of being taught a lesson, but I've been dished out a doozy. Certainly makes one wonder what I may have done in a past life or whether I'm now free to plunder like a pirate.


One of the common themes of my psychotherapy has been that of "betrayal" (and not necessarily because I brought it up). I think many people who have struggled through health challenges like mine have felt betrayed by their bodies, as well as  by promises of the American dream and the belief that goodness renders reward. Although "promise" is another one of those words I find too extreme to accept blindly. Basically, nothing is a sure thing. My therapists and doctors have often seemed burdened by the fact that my sort of rehabilitation is not an exact science – there is no proven formula to success, only a formula for improvement, and even that improvement is graded on a curve of degrees and time. Sometimes that has been reassuring in and of itself – that as much as I want to work hard at recovery, it may be an effort of diminishing returns. Many people – friends and loved ones – have offered suggestions on what I "should" or "need" to do. I often rebuff that advice in exchange for what I can or want to do. I am fortunate enough to have what I truly need – food, clothing, shelter, and affection – I'd rather not dwell on some false idol of attainability.

I remember during the 1992 presidential campaign how Ross Perot lamented the fact that my generation would be the first to do worse financially than their parents (those themes are being repeated currently). Back then, while Readying for my college graduation and with the GenX, slacker, wind of Age 22 at my back, I found a level of solace in the fact that I could place some  blame for my own failure to find gainful employment in the man-made, cyclical, natural force that is our economy. Nevermind that a model which aspires to create an economic strata of the working class, the middle class, the upper-class, the Super-upper-class, and the Uber-upper class is unsustainable and clings far too desperately to an American Dream which never existed and which cannot exist for everyone. Unless Horatio Alger Inc. starts churning out 4G-capable titanium bootstraps(TM).


So it's not that I believe I should be able to hobble around the same track over and over again and see remarkable returns on that limited effort. But I also really would rather not have to work so hard that I'm miserable or that I kill myself trying to heal myself. I am willing to try new things. For instance, I've started seeing a new physical therapist who specializes in a technique called Feldenkrais. I also put some of my new strength into swimming this weekend and hauling myself (with assistance) on to a floating lake dock. I am also planning to start back on my morning, simple yoga routine, because my only real exercise right now is walking around the office hallways, and I find the simple fact and challenge of getting down on the floor and moving my body in less-familiar ways a good method of  re-training my brain and muscles. I'm still trying to work out other breaks in my routine which could lead to further independence and autonomy.

Tuesday, August 28, 2012

Cracking the Coconut

Remarkable times we live in, eh? Very infrequently in this on-demand, instant streaming, real-time world must we resort to deferred gratification, which is why I felt so compelled to compile this assortment of images after receiving a copy of my ER Catscan of a few weeks ago. When I made my request from the radiology library, they reminded me I also had a scan on file from November 2010, and I realized my brain scan trading card collection was incomplete and just had to order it. I had scans from prior my surgeries, scans following my aneurysmectomy and cranioplasty, but nothing from between the time of my craniectomy and the subsequent artificial "bone flap" replacement. Given how much the jellyfish has affected my life, I've paid relatively little attention to its tank, even though (seizure aside) my healing skull is probably the thing I'm most conscious of above my neck. I continue to have mild headaches (which I'm told are normal), as well as an awareness of clicking sounds at times, especially when I wiggle my ears. That too is a relatively normal part of the healing process as the tectonic plates of my cranium fuse. That process is made slightly more difficult by the fact that bone is mending with plastic. Mostly for my own curiosity and at times disgust, I've assembled the following images, which offer a timeline of the ins and outs of my head. I've added captions for the blog itself, but they probably won't come across if you receive an e-mail of this entry. Remember, left and right are reversed in the scans:
My first CT, from 7/9/10. My skull is intact, and my brain is relatively "unremarkable" (so said the report), aside from the giant aneurysm lurking outside the reach of this particular scan section.
11/24/10, post surgery. You can see the glint of clips holding the arteries and a fairly significant missing piece of noggin. This scan actually provided the measurements used to fabricate my artificial piece of cranium.

10/31/10. By far the most disturbing picture I found. At first, I honestly thought someone had PhotoShopped it with a warping tool. And to think people didn't run away screaming.
Early November 2010. A complete tonic to the previous picture and a reminder of the beautifully-decorated helmet I had to wear whenever out of bed (Did I mention I was missing part of my skull?)

8/7/12. The shine is still the arterial clips. My skull's a bit rounder, but you can see (on, the left, which is the right) that it's not perfectly healed.
cool scars.
8/28/12. None of these are of my good side, if I even have one,but it's settling in.

 I hope you enjoyed this trip down Memory Lane by way of Cerebral Cortex Junction. Putting this together actually gave me the first chance to share some of my scans with the kids. Of course, Gus now keeps asking to see my brain. I've assured him there's only one person I trust to do that.

Wednesday, August 15, 2012

What is Sick?

 First off, I appreciate everyone's good wishes regarding last week's event, including the fact that those  wishes often came in the form of, "Enough already!" outrage. It's nice to know everyone else is is as tired of my drama as we are.

This afternoon I did have a good seizure-follow-up appointment with my neurologist, which helped clarify the nature and origin of my electrical malfunction – he felt it was merely an indicator of ongoing healing in my brain (i.e. a reaction to scarring caused by my surgery and stroke). He was also fairly confident that the increase in my anti-seizure medication has a good chance of preventing future events. He reassured us that additional seizures would be unlikely to cause permanent damage and that if they were to occur in my sleep (as last week's did), there would be little or no need for emergent medical intervention (though Jamie did the right thing by calling an ambulance, since it was a new development for me). Over all, he wasn't able to offer much that was definitive, aside from confirming that the CAT scan taken in the ER did not show any new damage or bleeding. Mostly, he cemented the fact that the brain remains a mystery, even for someone who specializes in studying it. That's one of the reasons I've always enjoyed him as a doctor. For instance, he was genuinely tickled today when I recounted that my left arm shakes reflexively when I rub my left eye."I guess there's some kind of connection there," he said, adjusting the bow tie he always wears.

As much as I'm glad to have some level of clearance to return to my status quo, it's also been hard not to ponder the meaning of any change in my condition, going so far as waking myself during the night, only to then offer consolatory amazement at my consciousness, as if that awareness alone could stave off future attacks.

It has been frightening for the past week, being reminded of illness or weakness or however one wants to do describe my condition. While my kids know more about aneurysms and strokes than I'd prefer, it's generally easiest to say I "was sick" (past tense) in answer to questions about why I'm so slow and need a cane. It's still strange for me to think of the aneurysm and stroke as an illness or ongoing condition (and have not felt it's been a degenerative condition for quite some time). They feel like historic events or waves which swept me up and deposited me in my current state. In the ER -- when relaying my medical history -- the nurses often said I'd previously suffered a CVA (cerebrovascular accident). It's an odd term but fitting -- like I was hit by a bus. My hemipalegia, muscle spasms, and seizures are merely after effects of that accident, some horrible mistake.

So the good news is that for now I remain stable. This turn of events may put my return to driving on hold for at least three months, but the adjustment to my medication should represent adequate intervention for continuing progress. There's no need for me to curb my return to work (now fulltime in the office) or slow physical efforts. Onward and slowly, carefully upward.

Tuesday, August 07, 2012

A False Sense of Security

The title of this entry is inspired by how much we had settled into the "new normal" of our lives, including the ability to go to sleep each night with relative lack of worry. For me that was in part a gift of nearly 2 years passing without much incident, health wise. Also, what I consider part of the "WTF?"reaction to trauma. As much as I somewhat believe life hands you only what you can handle, and that there are good lessons to learn from challenges, there is also part of me that believed– or at least wants to believe – that misery begets a certain amount of immunity. Life's unfair, but it's nice to think there is some balancing act at work.

When I went to bed last night, I had no reason to suspect that I would not wake up in my own bed. All things considered, I've been feeling fine. As it turned out, when my eyes opened this morning, I was in an ambulance headed to the Emergency Room. While I had experienced seizures early in my health crisis, they were mild and manifested themselves as a sense of déjà vu and anxiety. In actuality, those seizures helped save my life, since without them I would never have received the MRI which identified my aneurysm. While I was immediately put on anti-seizure meds, my neurologist believed they were caused by the physical interaction of my aneurysm with the rest of my brain.  my surgery supported that hypothesis, since I hadn't had a conscious seizure since. Early this morning, however, I experienced what I would consider a much more traditional seizure. Often in the morning – when waking – I have some spasms on my left side, caused by my yawns'neural misfires. At first, Jamie thought my thrashing today was just that. Once she realized I was struggling to breathe a bit, she called 9-1-1 (for me) and her mother (to watch the kids). Though the EMTs arrived quickly, she did have time to get me on the floor and start CPR. In retrospect, that may have not been necessary, but it's a good reminder of  lessons learned long ago – that chest compressions should be performed to the beat of the Bee Gees' "Staying Alive" and that you cannot perform proper CPR while someone is lying on a mattress (which she recalled from Michael Jackson's death).

So the important thing is that despite the trauma of the way she was awakened and the fact that Wyatt unfortunately entered our bedroom while the paramedics were working on me, I was and am no worse for the wear. I did bite my tongue in a few places as well as Jamie's fingers while she was trying to unlock my jaw, my left shoulder hurts a bit from its standard slight dislocation and the fact that Jaime pulled me off the bed using my left arm. I also lost patches of hair from my legs, arms, and chest where EKG leads were attached at the hospital. They did a quick Cat Scan which thankfully showed nothing new and  took some blood work, which should show whether my anti-seizure medication is dosed to low. For now, they have increased it slightly. I'll see my neurologist next week and see if he thinks any more action need be taken. There's nothing anyone can point to as an obvious cause. Recently, I have not been more stressed or exerting myself more. I had been told previously that even mild seizures could lead to stronger ones. So maybe if I had been having them in my sleep.... I am certainly hoping that the extra thousand milligrams of medication today at least allow me to wake in the same place I slumber.

Sunday, July 22, 2012

The Getaway

The word "escape" has been regularly creeping into my vocabulary lately. Escape from what?  How about what not. Work is an escape from home (and vice versa). The verisimilitude of  Facebook is often an escape from reality in general. And then I am brought back to earth by the fact that there simply is no escape  from the indeterminate prison term that is life (don't worry, that's me talking while on an anti-depressant).

But last week, we went on vacation: my parents very generously shipped themselves, my family, as well as my brother and sisters' families to Club Med Punta Cana . The word "vacation" itself implies escape: We vacated our "real"  lives in deference to some facsimile of our lives which did not include responsibilities as an employee (I was very good and did not check work email once), homeowners (my sister-in-law, thankfully, housesat and watched over the cats and fish);  and to a certain extent as parents (most days, the kids were in "Mini Club Med" camp, including circus school). And it was an all-inclusive resort, which meant that over-indulgent meals (white chocolate bread, yum!)were generally a matter of a walk ( or golf cart ride) to one of two restaurants and drinks were delivered to us pool or beach side ( have you ever had a conga, virgin or otherwise? Delicious.). as much as I reveled in it, I find the idea of all-inclusiveness amusingly overambitious (it puts me in mind of the old joke, "What did Buddha say to the hot dog vendor? [Punchline: "Make me one with everything."]) So that pretty much stripped us of our entrenched roles and, hopefully, left behind the husk of our most genuine selves. I know I was still identified by my cane and my leg brace (once again wishing for a T-shirt that says, "It's not my leg;  it's my brain."). Twice, Club Med staff ran down the beach to the sight of me being helped from the water by my family, and I was asked a number of times whether my injury had happened there (obviously, a liability concern), though I also reaped the benefits of my disabilities. Being whisked through airport security in a wheelchair, passed the simultaneously annoyed and sympathetic looks of those waiting in long lines,  I kept wanting to say, "I must be in the front row!"

I specifically asked Jamie to leave behind her identity as my caretaker (my parents, brother, sister, and brother- and sister-in-law were more than willing to pitch in there)  and focus on spoiling herself. Not to mention it was a good opportunity for me to spread my wings, even if they were water wings -- I did a lot of walking (often out of my brace, even once feeling the sand between my toes) and discovered that wearing a life jacket in the Caribbean allowed me freedom from struggle but still granted the opportunity to kick my way around. One of the best moments came when Jamie and I played "King of the Waves", standing in the relatively gentle surf and trying to push each other over. This was not only good balance exercise for me but also an opportunity to escape my nemesis Gravity, since the most problematic outcome would've been falling over and floating to Puerto Rico. It was also a chance for Jamie and me to have a few moments of levity ( which are often few and far between).
I'm not sure whether "escape" and "getaway" -- which suggest beingon the lam --  or "vacating" -- which suggests intentionally leaving the premises to make room for someone else, is better. Either way, it was a great chance to both escape from and find myself and my loved ones. And to immerse myself in this:

Spotty Wi-fi, a frozen Kindle, some stomach distress, and return flight hiccups couldn't change that, even though they were also included, unintentionally, in the package.

Wednesday, July 04, 2012

As ye sow...

It's been a good week for the blog, which puts me in mind of an Old Testament quote chiseled into the side of my freshman dormitory: "As ye sow, so shall ye reap."I'm not really one to quote the Bible, but that one stuck with me. It also reminds me of a mash-up I've been holding onto: "When life gives you a stroke, make cerebral lesionade. Boo, hiss, moan. Maybe I should have kept that to myself much longer.

So, the good week. I happened to be checking out the website for the software I used to make my mind map and noticed they were having a contest. Yadda, yadda, yadda, I won! A couple days later, a few people pointed me toward a New York Times blog post about semicolons. Yadda, yadda, yadda, I sent the author a link to my blog, and he sent back a very complimentary note. That got me thinking about why I call my blog what I do (it's always bittersweet to see what I was thinking BS (Before Stroke) -- how I thought the lull before my surgery was my semicolon pause. It was certainly one opportunity I've had to step back and reflect. But the stroke has been a much longer, grander, and heavier reflection. Hopefully, I'm coming through to the second half of the sentence. How's that for heavy metaphor -- life as a sentence?Which gives me opportunity to recommend the series Life (both seasons now available for instant streaming on Netflix).

Saturday, June 30, 2012

Picture of a Fractured Mind

I've been toying with a new tool at work – something called mind mapping. I'm especially drawn to anything with the word "mind" or "brain" in it lately ("Squirrel!"), and it has been useful in capturing my somewhat scattered thoughts.

I thought it would be fun and interesting to actually create a mind map of my mind, so that's what I've placed below. A picture plus words is worth a thousand plus words, after all. I dare say, it isn't all that different from others' minds.Warning: The image is large and and may be difficult to read, but I hope you can make it out. You may actually just want to open it in a separate window.

Sunday, June 24, 2012

Father's Day

Yes, I know it's not Father's Day; today, I just happen to be getting what I thought I wanted last Sunday – a little peace and quiet and a chance to talk to myself and you nice people. I say this is what "I thought I wanted" in part because I think solitude is what many parents crave and also because what I actually got – lunch with my older son and a walk to the playground with him and my younger – turned out to be just perfect.
During our lunch, I was able to have a heart-to-heart with Wyatt and let him know that he can talk to me about anything  and ask me any question. His most pressing question at the time apparently was, "What's 8 million plus 12,054?" When I gave him an answer, he gawked at me, flabbergasted. Though that also gave us a chance to talk through the equation so that he could tell me the answer as well. As much as my stroke and its effects often make me feel less capable as a father, this was the sort of parenting moment  I truly cherish. Along similar lines, Wyatt once thanked me for teaching him to "swish and spit" after brushing his teeth. How more essential a role could I play? So, boy, didn't it irk me when I heard something on the radio discouraging rinsing after brushing.

I do strive to be a role model for my children and actually team with my wife in parenting my kids -- instead of being a third child for her to care for -- but there are definitely times I feel I've abandoned them. Unfortunately, the energy level of five and seven year-olds are completely contradictory to stroke recovery. Someone at work said the other day how "40 is the new 20", and I replied, "for me 40 was the new 70". That's certainly how it's felt. Probably more like 80, since 70 is the new 55. I remember when I was 35 and had my first child, my father said how he thought we would be better parents for having more life experience under our belts. I honestly can't say how my life experience up until that point has served parenthood well, as much as having some additional twentysomething battery power (as  my parents had) might have. The danger of being older and more "experienced" was that our experience  was in developing independence and self-sufficiency, which is completely contradictory to the selflessness required for parenthood. I've often heard told of people who wanted a "big family" or "loads of kids". I was never that person, and I don't really know who those people are – perhaps older siblings from a large family, who helped "raise" their youngest siblings? Jamie worked as a teacher in a daycare for many years. The year before Wyatt was born, I taught K-2 computing, which I told myself was a good introduction to parenthood. But I honestly I don't know what can prepare one for the intrinsic sense of ineptitude and guilt and inadequacy of being wholly responsible for another human's life. I also feel like people who choose to have more than one child -- as we did – have been duped. We were actually first tricked by our friend Lori's son Sam, who turned out to be our "starter baby". If it weren't for babysitting Sam from ages three to eighteen months, I would have never felt "prepared" for fatherhood. Though telling  myself I was prepared to be a parent was as much of a lie as telling myself I was prepared for brain surgery, because Sam went home at the end of the night. As our first baby, Wyatt then conned us into thinking we knew what we were doing. Then again, every week with a new baby is a con, convincing you that you know what you're doing. And then everything changes the following week. Telling yourself that you can handle a new baby because you survived the first is as big a lie as they come. That said, I suppose that's not true only of children but of every day – no two are exactly alike. One challenge may inform the next, but few will prevent them. The other conundrum of having another child is the guilt – you'll never be able to give your first child the kind of attention s/he's used to, and you'll never be able to give your second child the kind of attention you dedicated to your first. I remember having an interior monologue with myself and Wyatt, where he asked me, "Dadda, will you love the new baby more than me?" And I said, "No, I'll love you both the same; I'll just love you half as much." Remember, that conversation was all in my head. Though that's another lie we tell ourselves – that we have an infinite supply of love we can instinctively distribute evenly to all comers. I'm in a regular debate with friends over the book I'll Love You Forever." My contention is that the book depicts and celebrates parental love as an equivalent to obsession. Others disagree. My argument isn't that parental love can't be unconditional, but that it doesn't have to be indiscriminate either. I want to love my children for who they are, not just for what they are. The truth is that sometimes they do and say horrible things and it is difficult to embrace that as loveable.

But back to the stroke, because that's why we're all here, right? Both of my sons have independently picked up my cane, started walking with it, and said, "I'm an old man." That's been very hard to hear and not respond to. Not to mention that the AARP would not appreciate the characterization of "old" as negative. Gus has asked me a number of times recently why I'm so slow. Sadly, I don't think he remembers very well what I was like before. Wyatt has taken more of an intellectual interest in what happened to me and often recalls how fast I used to be, usually followed up with a very genuine, "I'm sorry about what happened to you." I always respond that I'm sorry about what happened to him as well. It's certainly nothing a father would choose for his child. For now, I'm doing everything I'm capable of to provide financially for my family and to undo some of the sadness provoked by our circumstances. This morning, for example, the "worst thing in the world" happened to Wyatt when Gus accidentally erased the saved progress on his videogame. Frustrated with his frustration, I first fell into the trap of reasoning with him and trying to provoke perspective – even after seven years of parenthood, I still haven't got a clue what I'm doing. Then, when the family left for the beach (leaving me with what I wanted -- to be left alone), I did what any good father would do – I Googled ways to restore erased Super Mario Brothers 64 game progress and then -- coming up empty -- attempted to play the game and earn back some of his lost points (at which I also came up empty). C'est la vie.

Monday, May 28, 2012

Nineteen Again

I've just returned from my twentieth college reunion weekend, and I have to say it was just what the doctor ordered. Not only did I successfully challenge myself physically(walking around campus much more than I expected to and never taking the wheelchair out of the trunk), but I reconnected with some of the best people I've ever known. Even though many of us were somewhat randomly thrown together 24 years ago,  it's wonderful to see how those relatively brief connections allow us to pick up right where we left off. I expected to easily win any contest of hairline comparisons (since I've got cool scars to show off), but much as I felt like the oldest 42 year old in the bunch, everyone still looks and acts like the kids we were.

I hadn't been to a reunion since my fifth, and the overarching theme has been to experience many of the typical college tropes I didn't actually experience in college. I guess I still haven't been to a frat party (no great loss as far as I'm concerned), but I did have plenty of heartfelt conversations with the help of a cocktail or two. At the fifth reunion, I bore witness (unfortunately) to someone essentially hazing himself by proving the theory that you can't drink a gallon of milk in an hour. This year, I was comically forced to streak down a dorm hallway after discovering that wrapping a post-shower towel around one's waist with one hand (especially with a towel not quite bath sized) is no easy task. Slow as I am, I did manage to do it without being spotted or having someone call campus security on me.

I know I've written at length about my desires to reclaim independence and at least a sense of  ease and carefree youth, but I can't say enough about the friends I made during my college years, the ways they've continued to support me since graduation, and the way they enriched my life this weekend simply by slowing their pace a bit, carting my food and drinks, appreciating the fact that I still exist, and encouraging me to push beyond the boundaries of my limitations. After my fifth reunion, I was compelled to take a cross-country train trip to extend the festivities. This time around, it's probably going to be more like virtual visits through Facebook and texting. But that can be real, too. Even virtual connections between random collections of people are plenty real when they're the right people.

Thursday, May 24, 2012

At a quarter to three, I metaphor

Truth be told, I started writing this in September 2010, while sitting in our friend Lori's beautiful house overlooking Little Sebago Lake in Gray, Maine, during my "gearing up for brain surgery" phase. I think we had plans at that point to go hiking as a family, which was our annual tradition.

You see, Jamie and I were married atop Bradbury Mountain  on May 24,  2002. I use those terms loosely, by the way. Bradbury is barely a mountain and we were barely married (though I'm pretty sure at least the latter is legal). It's a long story, but the short version is: she surprised me with a proposal in a bathtub on Valentine's Day,  and I surprised her with a wedding on top of a hill.

Every year since then, on or around our anniversary, we have climbed that hill (weather permitting and with the exception of 2011, when I simply wasn't able to make the trip. In retrospect, I actually don't know why we didn't at least go to the playground there last year.) I've long said that if there is a better metaphor for marriage (or life) -- climbing the same familiar mountain year after year, interspersed with self-inflicted and/or circumstantial challenges -- I haven't yet found it. Except for our trip whale watching yesterday (2010) -- which turned out to be post-hurricane water watching. Saw a harbor seal, a butterfly, and almost saw the gum I swallowed in 2003.

On our wedding day, as I eagerly/anxiously awaited getting to the summit, where friends were waiting to jump out and pronounce us husband and wife, as my months-long covert op was coming to its end game, it was clear that you can't plan for everything, though up until then I had planned for plenty:

  •  a surprise wedding license excursion to Portland City Hall.
  • shopping for our wedding attire (separately and in secret).
  • Buying our wedding bands and having them engraved, "double happiness may-july 2002" (that was as much either one of us knew at the time).
  • arranging for our friend Tess to become a Notary Public in order to perform the ceremony.
  • convincing Jamie to go for a hike that day without raising suspicions.
  • hiding our apartment key so our wedding party could break into our apartment and retrieve a garment bag of clothes.
  • a red-herring shopping trip to Freeport (because I "hadn't been able to find anything to wear yet").
  • a sleepless but not obviously sleepless night for me the night before, nervous I wouldn't pull it off.
  • arranging for a potluck at our apartment the evening of the wedding.
  • Booking a bed & breakfast in Jackson, New Hampshire, for the weekend following the nuptials (our "mini-moon").
  • arranging our official honeymoon in in St. John, for June.
  • curbing our parents' dissatisfaction with our decision to elope at home by "allowing" them to plan two parties for us in July (one in New Jersey, one in Maine) -- so much for keeping the spotlight off us.

That day and since then, every hike up that mountain has brought some lesson. Usually, it starts with me reminding Jamie it's our anniversary and twisting her arm to go in the first place. Which is a little odd, since she's always been much more active than I. Like I said, I think the lessons over all are that marriage is a leap of blind faith and that you can't plan for everything, such as:
  • 2002: periodically drizzly weather
  • 2002: Jamie's anti-consumerism tirade in Freeport and declaration that she, "didn't really feel like hiking!"
  • 2002:Jamie insisting on taking the longest possible route to the top, even though:
  • 2002: a call to the wedding party from the L.L. Bean bathroom had revealed that they (Best Man Jamie Boy, Maid of Honor Kristen, and Officiant Tess) were already waiting for us at the top of the mountain.
  • Any number of years:Wrong trail.
  • Any number of years: Long trail.
  • Any number of years: Right trail up, wrong trail down.
  • Any number of years: rain mixed with mosquitos.
  • 2005: hiking in the rain while Jamie was pregnant with Wyatt (many pee breaks required)
  • 2006: Hauling Wyatt in the backpack (bliss).
  • 2007: Hauling Wyatt in the backpack when he didn't want to (not so blissful).
  • 2007: Carrying a picture of Gus to the top when he was in the NICU.
  • 2008: Coaxing Wyatt to walk up when he didn't want to.
  • every year since 2007: Keeping Wyatt from running/falling down the mountain
  • 2008:Carrying Wyatt and Gus.
  • 2010: Coaxing Gus (to no avail) and splitting up (Wyatt and I went up, Jamie and Gus went back to the playground).
  • 2011:still recovering from stroke, celebrated at home.
Our vows were, not unexpectedly, nontraditional, but I think it's fair to say that over the past 10 years we've certainly had and held each other, definitely for better and worse, for richer (gainful employment!) and poorer (two spans of unemployment on my part, a year of disability payments, living off a single income); in sickness (duh); and in health (of course, taken for granted at the time). In many ways this past year has been both the most enriching and successful of our marriage and the most trying, egregious failure. At least we're coming through it without a constant desire to blame or bludgeon each other (not constant).

And now, some commemorative pictures:

2002/wedding day

Ken getting to the top with a grunt of relief.
Jamie getting to the top and lying, "I KNEW IT!"
changing clothes

We do.

Jamie and her lilacs

The precipice


1st anniversary champagne, bad hat, and rain

Pictures have frustratingly disappeared.

Jamie, pregnant with Wyatt (who was born a few weeks later)



holding picture of Gus in the NICU



Wyatt and Ken at the top


Apparently, I still haven't quite learned my lesson, since for this, our 10th anniversary, I tried  to meet Jamie Boy, Tess, and Kristen for a picnic in the park, and prepare this blog entry as a gift and expression of love, respect, and admiration for what has been the most important relationship of my life. I also hoped to hike as much of the mountain as possible. Unfortunately, only Tess was available, but at least we did hit some of the trail. And I uploaded the pictures without Jamie seeing. Maybe next year I'll climb the damn thing for real, as hard as it is to think that far ahead. Who knows what lies between now and then? It's all an adventure, right?