Wednesday, January 29, 2014

Before and After

Am I my BI (Brain Injury)?

The short and sweet answer is, "Of course not." Our identities should not be tied to a single set of events any more than they should be tied to a particular role we play in our lives: child, parent, spouse, resident, patient, victim, employee (I learned early on from game shows that Americans too often tie "Who are you?" to "What do you do?" (e.g. "Let's give a big Card Sharks welcome to Todd, a marketing analyst from Modesto."). If we allow ourselves to be pigeon-holed, we leave no room for growth.

Of course, my stroke has raised a lot of identity questions for me because the brain is as close to "self" as we've been able to define. And, for me, my self is as close to my soul as I've been able to devine. I'd like to think that if my soul weighed  21 grams before my stroke, this experience has bulked up my ethereal spirit by 9071.8g (thus explaining the 20 pounds I've packed on).

I've also obviously placed a lot of emphasis on comparing life BS (Before Stroke) to ASS (After Suffering Stroke); but, in truth, this before and after may be no more significant an experience than the B&A transition from child to adult, bachelor to husband, childfreeman to parent, renter to home owner, etc., etc. We play many parts as we strut and fret our hour upon the stage, all of which shape who we ultimately are.

I have gone to great lengths to get to know myself over the years (is self awareness the same as being self conscious?). So much so that waking after my stroke and feeling like "me" was a huge relief for me and my friends and family. That said, it's a dis-service to think  that who I was needs to be who I am and always will be. I was lucky to retain my sense of self (I've met other TBI survivalists who did not have the same good fortune and have consequently spent far more precious energy on reinvention than I've needed to), but I don't want to hold me back either.

Just as I've contemplated a sense of loss, I've also trolled the depths of identity with the question of whether it's for me to determine alone. Just as works of art tread a fine line between intention and interpretation, identity exists somewhere between how we see ourselves, how we try to comport ourselves, and how others see us.

This idea brings me to today's exercise. I've asked a number of friends and family members to provide their impressions regarding who I was pre-stroke, compared to who I am now. This was admittedly a somewhat unreasonable and self-indulgent request, amounting to reading my own eulogies. But my hope was to hear insights I am too close to see myself.

I will begin with my own, straight-foward, bulleted list, move through a variety of Ken Shapiro, This Is Your Life voices (with some editorial commentary [in brackets], and close with some rebuttal (because I always have to get the last word).

My nuts and bolts comparison (in no particular order):

  • I'm slower and more deliberate, which translates into more mental processing, additional time to get ready in the morning, and more time generally to move from point A to point B.
  • I get cold more easily, though -- Polar Vortex not withstanding -- that's improved a bit.
  • I'm more easily tired and take more naps (I've fallen asleep during an MRI (though that was pre stroke, at the barber (also pre), and in a variety of therapeutic settings: massage, acupuncture, Feldenkrais, Reiki,  craniosacral ). Sleep is healing.
  • I'm less "regular" and a little less hygienic (given the extra time required to get ready in the morning, I have to alternate between toileting and showering).
  • I'm more intolerant of reflexive complaints, intolerance, and extremism (not really a development of the last three years and completely inconducive to parenting).
  • Along the lines of the above point, I cannot stand the words, "always," "never, "need" (as in, "I need you to..."), or "should" (as in, "You know what you really should do?"). There is no need, only want ("There is no Dana, only Zuul." Anyone?)
  • I'm not keen on long-term planning (5-years is way too far out to contemplate, never mind retirement). We're looking to visit my family in New Jersey in April, and that's about as far ahead as I'm willing to speculate. Otherwise, I am open to the universe.
  • Interestingly, I think this experience has made me more optimistic about and less fearful of life.
  • Along those lines, I just give less of a damn.
  • I have a better Work-Life Balance (which hopefully just means better perspective on where to best direct my energy).
  • My left arm shakes when I yawn, sneeze, rub my eye, or try to consciously move my hand.
  • I walk with a leg brace and cane most of the time.
  • Getting down on the floor and up again requires planning, preparation, and purpose.
  • I have to more intentionally focus on how I express emotions (so as not to often appear angry or sullen), as well as how I interpret other people's tones and mannerisms (I may get false impressions/over-reactions).
  • I'm more sensitive to having to raise my voice to be heard or of being yelled to (also not conducive to my house).
  • It takes two cosmos to get me tipsy, whereas a glass of wine used to do the trick (though that could just be the extra weight of my soul, absorbing the alcohol).
  • I have permanent bedhead (head, not hair).
  • I can only independently raise my right eyebrow for emphasis (though I can raise them both at the same time).
  • I can't curl my tongue or whistle well anymore.
  • It isn't all bad, though: I get good parking, am whisked through airport security in a wheelchair, ride the elevator and use handicapped bathroom stalls without guilt.
That's all from 2014 Me for now, except for [bracketed comments].

[The first voice from my past is my own, circa 1976. When exactly do you become You? My parents recently delivered a load of my old journals, including a book entitled, This Is My Book, which I completed at Age 6]:

[On a page called, "Different Things About Me," I was asked to underline my defining traits. I chose]:

  • "I cry."
  • "I make noise."
  • "I get angry."
  • "I help around the house."
  • "I'm never on time."
  • "I'm a good friend."
  • "I talk a lot."
  • "I finish the food on my plate" [though the underline trailed out].
  • "I make jokes."

[I did not underline]:

  • "I'm always on time."
  • "I am always wise."

[I'm not gathering a lot of insight from those choices, other than acknowledging I was a work in progress (not "always wise").]

[Sticking with Before voices, here's Me again, in 1987, just shy of my 17th birthday. What strikes me most about this teenage voice is my YOLO Certainty about the way the world works. I suppose you could call it "innocence," and it most definitely has been lost.]:

From [my journal] Life V: February 15, 1987

A couple of years ago, I continually told myself that I was, "too old for my age." I always felt like I was more mature than other kids,  psychologically and emotionally. Then I decided I wanted to be a writer. "You have to be able to think young," I told myself. "Creativity and imagination are attributed to youth." So I decided to retain "Kenny" as my official name as a writer[now I want to say "nom de plume," but that phrase didn't exist in 1987.] , thinking this title would preserve my childhood. Ah, but what's in a name that can prevent the passage of time? Nothing.

Now that I am more mature [remember, that's all of 17], I can see how immature I was back at that time, when I thought I was so much better off than everyone else, maturity wise. I can also see that I still have a great deal of growing up to do. Maturity, in many ways, means becoming more serious: [For instance], I used to love Scooby Doo. Now I watch it and get annoyed with the stupidity the program portrays. I also find Buck Rogers [happy 71st birthday, Gil Gerard] a little inane. Maturation has allowed me to recognize The Flintstones and Batman [Gotta love Adam West's staying power] as the clever satires they always have been. I just could never see it before. So there's a lot to say for maturity. I enjoy logic and being able to make sense of a mess instead of playing in it. [But] there's also a great need and importance for proper childishness. You can never and never should let go of the past. There's always something to be said for it, no matter how terrible it seemed at the time.

When I was at my age of moral superiority, I only felt inferior sexually. I was fourteen years old, witnessing so many other boys my age who had girlfriends, let alone an active interest in women. I was interested, but there was no way I would ever flirt with a person of the opposite sex. At summer camp the older boys and girls mingled. I was a Counselor In Training with little if no confidence where girls were concerned. All the other boys seemed so adept in their follies, like it was the most natural thing in the world. I would simply watch and comfort myself with various thoughts: Someday I would kiss a girl; someday I would have sex (most likely when I married); someday I would have the most wonderful girl,  someone drawn to my sense of righteousness and caring. If I only knew then what I know now:  I do have a wonderful girlfriend. I've kissed her a lot . I haven't had sex yet, but I've come pretty damn close. I don't know what drew her to me. I'm still  righteous and caring, but I'm also a lot more outraged and stoic and hardened than I used to be. I'm not 14 anymore, although I often try to convince myself I am. 

Maybe someday.

[Now to my parents, who have known me longest (I guess I'm going in order of relationship length]:

Mom [who I asked to tone down the gushing]:

Through it all, he’s the Kenny I’ve always marveled at: smart, caring and one-of-a-kind, with a unique take on the world -- and the humor to turn the heaviest of subjects into a matter to chuckle over.
Even his mishaps were unique.  How many kids swallowed a light bulb or shoved a Rice Krispie up his nose?

So, when you think about it, the tragedy of Kenny’s stroke was just as unique:  a giant, calcified aneurysm inside that special brain of his? What were the odds? [very slim if 1/50 people have unruptured aneurysms and 5-8% of those are giant (written by my dr.)]

It’s that special brain that keeps astounding us, despite his limitations now. Would he be able to work again, I worried.  How much independence would he regain? It’s not that I’ve stopped worrying (I’m his mother, after all), but he keeps reminding me through his accomplishments and humor that he’s still the smart, determined and interesting Kenny I’ve always known.  In his blogs, he leads us through dark times, intricate analyses of his life and condition, and then wows us with a punch line that stops my tears in their tracks as I start to laugh.   

The night before his surgery, we went with Ken and Jamie to see Scott Pilgrim vs. the World, a quirky movie that he chose and I was sure I wouldn’t like.  But it was a great choice, offbeat and funny.  Sort of like Kenny.  Heading back to the car, he showed off his racewalking prowess, a skill I had never known he had.  He slipped in a remark about whether he’d be able to do that after the surgery, but we tried not to think about his comment.

I still try not to. I think instead about the strength Ken keeps demonstrating, the new skills he keeps developing, and the power of his words.


From my perspective, I don't see much change from the before to the after...either in the positives or negatives. That being said, I think there are now pauses sometimes when you are speaking/answering a question that I don't remember from the before. I think your sense of humor/wittiness is the same but I am definitely enjoying it more since you are sharing more through your blogs.

Julie [college friend]:

When I think of Ken when I knew him best, we were in our first year of university together [Julie's moved to England and has put on that Madonna ex-pat affect. We Americans call it "college"]. Ken had small hands with short nails, he had a lot of hair, he was skinny, neat and tidy in appearance, and he owned a pair of acid-washed jeans. (God, so 80s, Ken.) I’d never met anyone from New Jersey before, but Ken was quite an unthreatening example of this particular species. He was an observer; he watched people, listened to conversations, and then would deliver a line that would make us all topple over with laughter. He spoke slowly, and had good humour [English affect spelling] in his voice. He always wore white sneakers, and walked quietly, and was welcome everywhere. He had an unreasonably large field of pop culture reference. We used to leave handwritten notes in those days and he wrote in large, straight print, every letter rounded and clear. I had a crush on him, or he had a crush on me, or we both had a crush on someone else…there was a lot of romantic angst going around, most of it unspoken. We were still teenagers.

I write fiction for a living, and you would think that would make me observant in real life, but that’s not particularly true. I think I, like many people, tend to notice people when I first meet them and lay down a foundation of impressions and beliefs about them. And then, especially if you don’t see the person often --unless something dramatic happens -- your impression tends to stay more or less the same. It’s a fundamental laziness. I’m still surprised when I look at my husband and notice he doesn’t look exactly like the man I married, or when I notice the signs of aging in my parents, or in my own mirror. To me, through the years, Ken was Ken.

Of course with Ken, something dramatic did happen. I remember meeting him just before his surgery and as usual, I talked a lot and he talked much less. As usual, he was funny and self-deprecating. We made Frankenstein jokes, and I knew this might be the last time I saw him.

I’ve seen Ken in person twice since his surgery, stroke, and heart attack. The first time was -- I must admit -- pretty nerve-wracking for me. This is a totally selfish thing to say, and I’m ashamed to say it, but Ken hopefully was expecting me to say something like this [I was, since my trauma is not mine alone]. I’d been following his progress via his blog, from halfway across the world, and we’d chatted online, but I still didn’t know what to expect. I guess it was February 2011. His head was a different shape from when I’d last seen it, which rather forced me to form new impressions over the ones I’d made when we were teenagers. He couldn’t move very fast, he seemed very stiff, and he spoke more slowly than usual. He frightened me, to tell you the truth. I was astonished at how quickly life can change. Although I knew he was recovering well, I was scared that his life was going to be much more difficult than anyone had expected. I worried that he and Jamie would find it hard to cope, that Gus and Wyatt would have to get used to a new version of their dad, that he would be changed forever from the Ken I knew. I didn’t say any of this, of course. Worries like this are much more difficult to articulate than jokes or confessions of crushes.

But most of my conversations with Ken for the past few years have been online, because he’s been in the States and I’ve been in England. Online, aside from the odd typo, Ken hasn’t changed much at all. He’s funny and generous and articulate and thought-provoking. He has an astonishing range of popular reference (most of it beyond me), he dithers when I nag him[about how to go about getting a book deal], he performs strange experiments just to see what will happen, he writes lucid and often moving prose. He types hella fast one-handed. When I asked him if I could shamelessly borrow his aneurysm and give it to the heroine of my current novel, he said sure. He’s generous with aneurysms and seizures. He hands them out like candy. And he’s even more generous with his time, and his thoughts, and his experiences, and his humour.

We met for lunch this past summer and aside from the brace on his leg (denim-patteerned but disappointingly not acid-washed), Ken seemed entirely like Ken to me. Okay, he’s not quite as skinny, and doesn’t have quite as much hair, but I think this can be said for most of us who are now in our 40s. I know there are ongoing difficulties; I know there are endless adjustments and worries and new ways of doing things. But a lot of my original impressions from way back when have remained intact. So much so that when Ken asked me to write something about how he’s changed, I said I would hardly have anything to say, and I whined that it was much, much easier to write lesbian robot porn (which is what I do in my spare time for fun). [ebotica?]

"Deep down," replied Ken, "I’ve always felt I was a lesbian robot."

It could have been 1988.

Julie’s website is, and her novel about the woman who has a bit of Ken’s wonky brain will be out in hardback this July with Bantam Press. The robot porn is written by and has nothing to do with Ken at all [or does it?].


[whose arm I had to twist a bit to write this, though I'm very pleased she did. She was like Warren Beatty in Truth or Dare (Madonna just keeps sneaking in here), when he said, "There's nothing to say off-camera. Why would you say something if it's off-camera?" Sometimes Jamie feels about the blog the way Warren did about Madonna being followed by a documentary film crew)]:

How have you changed since the stroke? The bad news is, not a lot (I kid, I kid). No, so, seriously folks . . . .

How have you changed? I think you've changed slightly in every way. In ways not even you could define. I don’t think a person goes through something like this, something this KABOOM, and doesn’t change down to a cellular level. Meaning it changes how you perceive the world (which you didn't see in the most trustworthy light before), how you carry yourself in the world, it follows you. You were and are dealing with huge things that would have knocked down a lesser man .

I think the stroke has made you see yourself as very vulnerable, and in many ways powerless [I agree that I do tend to demure more often, which is unfortunate and puts more of a burden on Jamie, even though the intention is often to avoid conflict and be less of a burden]. It has made you a less patient person, a more inward person, it has lessened your ability to show your emotions (I know you feel them just as strongly) and make a connection. it has (at times, I think) made it hard for you to read situations correctly. It has, at some times over the last three years, made you a person it was hard to be married to [right back at ya]. And don’t get me started on the - to use a Wyatt and Gus word – Epic snoring (thank you CPAP for solving that problem). When you are tired, you lose your train of thought more, and are more forgetful. But it’s really not any worse than most of us past a certain age.

This is all hard for me to write, I don’t want to hurt your feelings [you haven't]. Not to mention this did not happen to you in a bubble, I was in there with you; you know what I mean [I do]?  Marriage is hard. The stroke certainly doesn't simplify what is already a complicated (for good and bad) relationship.

And while all of the above mentioned things are true, they are also getting better. I think we are working hard.

On the plus side since the stroke, you make the most hilarious face when you eat sour stuff, and you have a great guffaw that you didn't have before.

I know how close we came to losing your you-ness, but you are still you. And you still have the pertiest eyes.

Donelle [co-worker, friend, coach, and cheerleader]:

My view of Ken both before and after comes through the lens of knowing him only since he joined our work team [about seven years], so my “before” view is only for that timeframe [about three years] in his life. When he first came to our department, he was somewhat quiet and did not necessarily match the “corporate image.” From the top down he appeared as many of us in the working world but always had this hidden anti-corporate secret hiding under his pants. Yes, under his pants. He wore wild, crazy and fun-themed socks – I haven’t checked his socks of late to determine if his medical events have changed this fashion statement but enjoyed that he always had that bit of hidden playfulness [I tend to go for comfort over style now, though sometimes I'll still wear fun socks just as a treat to myself and anyone who happens to notice.].

Before, Ken would take a lot of time to explain an idea or answer a question. I'm not sure if he was formulating the answer as he went or was trying hard to educate the rest of us who didn't understand the details of his technical world. Before and after, his responses are often well thought through, insightful, and result in a refreshingly different view – it just takes a little while to get there and to ensure that you both understand the point he is trying to make.

Before or after Ken appears to enjoy “tinkering,” finding ways to figure the smallest of details out – I perceive that this has changed some - it can take so much of his energy just to get up and drive in that he may have focused his energies more on the “must dos” versus the “nice to dos”. I also see him trying to teach others the things only he knows to give them the tools instead of him doing it all.  This seemed like it was a hard thing for him before, maybe it is still a hard thing for him now but he seems to be doing it more – this is a good thing.

One thing that is the same both before and after - He has always seemed like a loving and caring father and husband.  I think it is that love that has given him the inner strength to learn to walk, to talk, to eat, to dress, to drive again and still be able to work full time.  I think it is that love that also makes it a hard thing too because I know it is hard for him to not be able to do and be more and yet he still continues to find the ways he can be the parent he wants to be; he looks for ways to still have a normal – a new normal.  I think I see more of a determined person now.

His humor both before, during, and after is dry and creative – I don’t think any medical event can change that.  Lastly, Ken has a caring heart – perhaps maybe opened a bit wider with the cardiac event but always present.

Many may look at him and see what the medical events have done and see on the outside some physical challenges or weaknesses…not me, I see a stronger and more resilient man, never willing to give up or give in.

Marc [friend, co-worker, car pooler, jack of all trades, a godsend to our family, and unique in that he's only known the After Me]:

I’ve only known Ken since August of 2012; I never knew him before his brain injury.  Frankly, my first impression of Ken Shapiro was a guy to whom I wanted to politely say “no”.  Ken reached out because six years ago, something possessed me to put my name on the company rideshare listing.  Ken proposed we commute together because he didn't currently have a license and our houses in Cumberland are only two miles apart. 

And because, clearly, I must be ecstatic about surrendering my work-week autonomy to a total stranger. The thing is: I couldn't really come up with any good reason to say no. 

So, I said yes. 

It was a bit awkward at first; I didn't know Ken, and I was having a little trouble getting used to his mannerisms.  But about the third or fourth day, Ken made some kind of casual remark that struck me as funny.  Actually: really funny.  But I didn’t know if I could laugh because I thought maybe it was accidental humor.  Handling accidental humor can be tricky: you risk making the other person feel bad by laughing at what was intended as a serious comment. Or else you just make them feel dumb by demonstrating you’re in on a joke they didn't even realize they’d made.

I shouldn't have worried.  As the days rolled on, I came to understand that Ken’s humor is quite deliberate and is delivered in a manner that is dry, often coming at you laterally, unexpectedly.  I also quickly learned that Ken always has something interesting to say on an astonishingly broad array of topics.  So: pretty much the ideal rideshare partner [I should be clear that Marc bravely acted as my co-pilot when I was practicing for my driving test and valiantly follows my often-derailed train of thought during conversations, sometimes better than I can, tracing how I got from topic A to Topic Z by way of G, J, and F. He also shows a special interest in and respect for my one-handed abilities.]

That was my second impression of Ken: the unexpectedly interesting guy.  The shared commutes that I assumed were going to be an inconvenient obligation rapidly became something I look forward to every week.

[To my kids' delight, Marc also writes fan fiction inspired by a zombie video game]

2014 Ken again. 

I don't know how compelling this has been to read, but it's been a successful experiment from my perspective (ego sufficiently stroked). While I was looking for potentially constructive feedback, and got some, there is still some question of whether I can do anything about, for instance, my lack of filter. But as G.I. Joe says, "knowing is half the battle." That said, my lack of filter has also long been one of my greatest assets. I've earned many friends by saying unexpected and/or inappropriate things at unexpected times. My other interesting takeaway from this exercise  is that -- given the general consensus that I haven't changed all that much from BS, just how brain damaged was I before (after all, my aneurysm had been growing for quite some time)? Maybe I am my TBI. Maybe we all are.

And, remember, this blog is a conversation. So if you've got something to say about me -- good or bad -- now's your chance. Feel free to comment below.

1 comment :

  1. Ken, this was such a great post. I really loved hearing your perspectives and others' perspectives on BS and ASS. I'm with Julie -- hustle the book proposal!! EFS