Monday, July 29, 2013

Adrenaline Junkies

If you want to see some relaxed, happy people, get a bunch of fortysomething couples (most with young kids) and stick them in a house together for a weekend (sans kids). We just returned from such a trip to a condo in the White Mountains of New Hampshire. Some people explored their wilder sides on zip lines, airbag jumps, and alpine slides in the area. The craziest I got was a leisurely chairlift ride up and down a mountain, a $10 build-my-own root beer float at the Mount Washington Resort, and an ejection from said resort's pool area for not, technically, being a guest of the hotel. The biggest rush was simply hanging out together as adults (children make it very easy to lose track of yourselves as individuals), playing Apples to Apples. Otherwise, I mostly satisfied my goal of sitting around. I also finished reading my old journals (1993-2001). They were mostly filled with the Manufactured Angst of youth. But a few entries jumped out at me, and I thought I would dictate them here (hopefully, you won't tire of the sound of my voice as I did):

This first one shows how long I've been grappling with the kinds of existential matters I tend to ponder in this blog (though, as my friend Tess pointed out, the blog is another animal; since it is written knowing it has somewhat of an audience, whereas my journals were written only for myself (even if I never read them until now):

April 17, 1993 [at the ripe old age of 23]

Contrary to popular belief, old people were never young. And young people will never get old. And anyone who thinks otherwise couldn't prove a thing: Photographs are easily doctored, eyewitnesses bribed.

Although the name on the front of this notebook may resemble that on 14 others, although the Roman Numerals following the ever-pretentious title – Life – may suggest a chronology, I can assure you that I am associated in no way with that other personage. I've never met the man-boy before in my life.

While I'm at it, I might as well disassociate myself from the guy who may write on the next few pages in the next few days, weeks, months.

I dismiss the notion that we are as individuals an accumulation of our daily experiences. Each day we are born, we live, we die. Then another mind takes the helm, and another, until the body gets tired of the game. It is the only memory that exists -- the physical record of the journey -- the vessel's chips, cracks, burns, scars, and scabs.

We  live under the delusion of continuity. We have instincts and desires – the basic programs – which smell faintly familiar; but it's just an illusion, just a way of giving us purpose.

[While that interior monologue may feel like an aside, I then continued with an actual aside...]

That [diatribe], by the way, was a randomly-accessed attempt at sagacity. It may hold a little truth in it, but very little. That's  the duty of a cynic. And I am a cynic, clothed, cloaked by social acceptance and liberal open-mindedness. Deep down I don't buy any of it. Go ahead, say something true; I'll tell  you that you're naive to believe it's so. I am a rock. I am an object. [my childhood mishearing of Simon and Garfunkel.]

[When starting a new entry, I would often see where I "left off" and respond to it...]

June 1, 1993 

Though I dismiss the bulk of what my predecessor composed, I also dismiss his dismissal of what he spoke. Perhaps we are not accumulations of experience. But we are aware of them. Families of many people within a single physical form. All continue to live until the body ceases to do so.  But a new one is born each day -- the product of those who came before.

[It was not uncommon for me to go long periods without writing in my journal, depending on the therapeutic need. This next entry, a year later, was composed during a visit to my grandmother in Florida, relatively soon after she'd suffered a stroke. It is especially prescient now.]

June 3, 1994

I don't think my grandmother has ever looked better. She's thinner than she's ever been in my presence. Though not wasting away. The shell is only the half of it. It isn't as though she's entirely fit – what with perpetual back and hip pain. She stays in bed with her eyes closed most of the time. I shouldn't presume, but a good day for her is when a relative, like myself, is visiting. Otherwise, her life consists of routine -- meals, pills, exercise (a hundred-foot walk down the catwalk outside, a couple of pedals on her pedal machine), reading the daily paper, trips to the bathroom (the fewer, the better). She hardly speaks, though there are days when something clicks and she goes on a rampage of calls discussing anything and everything that comes to mind.

I don't see myself as much of a help. She's not in a talkative mood today, though I find if I hit the right topic, (like Irving Berlin), she will participate. Otherwise, I try to free associate. She may appreciate that. It's hard to tell. Sometimes she smiles and nods; sometimes she closes her eyes. I'm told I should take no offense.

I'd always counted on her to lead our conversations, though that was a long time ago. Now that I'm capable of forming a complete sentence, I find that my mind goes blank in her presence.

This is about a vibrant mind left empty -- my grandmother's that is. Her stroke stole something, that's for sure; or at least misplaced it – leaving routine behind. But I can't speak her innermost thoughts. I should go sit with her. That's why I'm here. But when I do, I have nothing to say.  Right now she's listening to an evangelical talk show. I have no idea whether it's because she likes listening out of intellectual curiosity or because she just finds the sound of voices comforting or because she suddenly found Jesus.

One comes to Florida as a young person under the pretense of visiting relatives; but, ultimately, it becomes this pilgrimage to one's own mortality.

The body deteriorates and reinvents itself. It doesn't do what the other body did. It doesn't want what the other body did, doesn't remember what the other brain did or thought. Doesn't think what the other brain did.Or maybe it does. That's hard to gauge, depending on what the new brain decides to express.

We don't talk about death with my grandmother. My Aunt Libby [her sister]is starting to worry about her own. She has heart trouble. My cousins Morty and Magda discuss it in terms of wills and cremation and others who have gone suddenly.

It makes me fear aging more than death -- doing nothing with however many years or days or hours I have left [is terrifying]. Fear of death probably isn't the best reason for living life fully. I guess it depends how overtly one fears. Whether one confronts the fear by mocking. I know it makes me want to quit my job (which I haven't even started yet) and run off somewhere. Makes me want to fall in love.

I wonder if my grandmother believes in God. If so, I don't know that it matters, certainly to me, whether it's a Jewish God or Jesus or Allah or Buddha or Brahman. Seems to me that the line between atheism and worship is a much broader than any between organized religions. Once you've decided to believe in a supreme being, everything else is semantics, which I suppose is why fundamentalist anything bothers me. To have the nerve to believe that any scripture is the be-all and end-all is absurd, as if all other religions made terrible errors. So inane. Preferring one form or style of faith is one thing, but believing it's the only one for everyone or that all those not born into it are essentially damned is about as self-centered as the human race gets.

Sunday, July 21, 2013

Pinball Wizard

No fun/gross pictures today, so I thought I'd try a stream of consciousness exercise (with links and spontaneous edits added later). A number of people in my brain injury support group have memory issues, usually short-term. On the whole that's an area I've been fortunate. I do find I need to take notes during meetings for reference later and also to remind myself of things I want to contribute at the moment, in part to keep myself from blurting them out and interrupting others. My short-term memory is limited pretty much to six digits, which I often need to recall in my work. But there's no saying how much of that is stroke and how much is simply getting older. I do find my thoughts can be pretty scattered, but I also kind of enjoy the act of tracing one idea to the next and the memories encountered along the way. So enjoy the roller coaster ride with me.

I can't do this sort of free-association writing without thinking of the Late, Great Tina Lane (née Tina Sabina), my high school creative writing teacher. Ms. Lane would periodically end class by having us take the last 10 or 15 minutes for a Professor Corey. Aside from being an enthusiastic educator, Ms. Lane (ex-sister-in-law of Nathan Lane) was a free spirit who always encouraged us to stretch out and discover things about ourselves and the world which we might otherwise overlook. It was with her that I began journaling (mostly in spiral notebooks I collected while visiting prospective colleges), in a series I titled simply, Life, followed by sequential Roman numerals. They began as observation journals, with the intent of collecting details which might later be useful in stories but quickly devolved into diaries. In many ways, they were my first blogs. I captured much of my adolescent drama on those pages and continued writing there through the late 90s. This weekend I actually went back and read what I'd written in 1997, during a particularly fervent period of twentysomething romantic angst. I generally haven't traced back my history in this way, but my parents mentioned they had recently found some of my older notebooks (probably circa 1986)and will return them to me in August; so I was curious to take a glance at the ones I currently have in my possession. What I found is that I really haven't changed all that much -- internally -- in the past 20 years or so, which is both comforting and disconcerting. Ms. Lane always told me she thought I would end up in some sort of creative work, no matter what industry. I suppose that has been true for me – I need to bring some sort of creative energy to what I do in order to find it interesting, despite the fact that my right hemisphere is supposedly one's creative side and is currently out of order. The struggles I've had with creative writing over the years generally stem from egotism (either too much or too little). They always say, "Write what you know." I think the fact that I didn't write for a long time was that I didn't think I knew about anything and had anything to say. This could certainly explain why my most fruitful writing has taken place in the first person and – especially in the case of this blog – is about my experience with my lead up to and recovery from brain injury. If there's one thing I feel comfortable saying I know, it's my self. I don't know if I believe anything else is truly knowable. Though it worries me a little that I'm a one-trick pony, or that I'm doomed to be a schlimazel. I fear the same fate for Tig Notaro, though she's far more brilliant than I and has done more with the soup spilled on her than I could ever hope to.

Back to my Life journals – I think I stopped writing in them for a period in the early 90s because my English girlfriend, Gillian, didn't seem to understand my drive toward introspection. Not that I should have let that stop me, but it was my greatest goal at the time to get her to understand and appreciate me, despite my inherently-, overly-open Americanicity.

Uh oh. For some reason I've now hit a dam in my stream, perhaps from recalling Gillian's lack of patience for and my self-consciousness about this sort of self-indulgent excursion through the wrinkles of my mind. It may be somewhat amusing for me, but I can't imagine that fulfilling for anyone else. Though I do recommend you play this game of pinball with your own brain . How can you not? That's why I'm no good at meditation: I have to follow my thoughts wherever they lead me. I think especially because of my stroke, I find it comforting to see that my brain can still take the ride and not simply shut down or block out the world.

This feels like an end to this particular trip, but I don't feel like I've ricocheted around enough to call the exercise a success. Or should I just put you out of your misery? I don't know exactly what I hoped to discover or reveal or accomplish here that would be worth your while; I'm not big on holding on too tightly to hopes or expectations, since they rarely live up to themselves, but I don't feel like I'm there yet. Okay, there's the stuff. Now I've jumped the track from that last sentence to whatever I took away from our high school analysis of The Scarlet Letter – how Nathaniel Hawthorne presented a speech by minister Arthur Dimmesdale (wow, i can't believe I remembered his name!) as the most-inspiring sermon ever given by never actually writing the words for his readers to "hear". So just imagine that this blog entry was incredibly profound and revelatory.

Saturday, July 13, 2013

A Blast from the Past

A few days ago we unexpectedly found our thought-to-be-lost first digital camera. Still on its memory card were a series of images from different passages in our lives, but most keenly:

  • Wyatt-- perhaps two hours old and all of five pounds -- trying to nurse for the first time. 
  • Both boys from infants to toddlers (we used to keep selected images on the camera as an easy digital photo album).
  • Disney World, May 2010 -- where I'd gone for my company's recognition conference. Though at the time I had no idea what was growing in my head, in retrospect it was a bit of a last hurrah.
  • Thomas (a.k.a Tommy Two Tone) as a kitten, right after he left his farm and followed us down the road in July 2010 (just when we needed something adorable to enter our lives).
  • Wyatt's first day of Kindergarten (which I'm happy to say I did not miss), early Sept. 2010.
  • Perhaps most jarring and not for the faint of heart or stomach, me at Mass General on October 12, 2010 (I've confirmed the camera's timestamp against my parents' Boston hotel bills,  emails my mother was distributing at the time to supplement the blog, and the blog itself -- even if I can't remember it all, my history is well documented). So the pictures show me with somewhat fresh, still-stitched incisions in my scalp as well as an NG-tube up my nose (down to my stomach), because my direct-to-stomach G-tube for liquid nourishment had not yet been inserted/implanted/installed.
Seeing BS (Before Stroke) pictures is always a bittersweet reminder of how much I've lost. And the raw, close-to-stroke images, while surreal and upsetting, are a reminder of how far I've come.

So, without further ado:

The pool at the Disney Beach Club, where I went swimming with my cell phone, May 2010.
Kitten Thomas, July 2010

Wyatt and me on a hike, September 2010.

Me, with a tube up my nose at MGH, Oct. 12, 2010, about two weeks after my surgeries and stroke.

Also Oct. 12, 2010. It looks worse than it felt.

Sunday, July 07, 2013

Independence Day

Apropos to the July 4th holiday, my brain injury support group theme this week was "Independence".

That's a pretty rich topic for a room full of brain damaged people, many of whom have rebuilt themselves from scratch, often transitioning from living with a caregiver to being "on their own". No, Jamie, the support group does not recommend ditching one's spouse.

The venue was also a great reminder that independence doesn't have to be achieved alone.

While much of our ability to reclaim our lives from mostly-invisible injuries does come from individual work, most people acknowledged that accepting reliance on others and generally relinquishing control (which reminds me of my pre-surgery mantra – "I am open to the universe") is a necessary part of recovery. It also reminds me of my father's often-uttered declaration – "I don't spend time worrying about things I can't control." My usually-internal retort is, "No, but you spend plenty of time trying to control as much as possible." He's right, of course, that we often expend too much effort trying to lasso tornadoes (who was that? Pecos Bill?). But truly opening oneself up to current events (i.e. The Here and Now) can also free you to achieve more than you ever imagined.

For this July 4th, we went – as we do almost every year – to a lakeside barbecue at our friends Ed and Amy's house. It's been so damn hot, there was no question I was getting in the water. Part of my road to independence has meant  knowing I won't be able to make a move without watchful eyes upon me and helpful hands there when I need them.While I was able to get down a short, grassy slope, sit down to remove my shoes, socks, and brace, then scooch to the water's edge on my own; the first few steps in the pond did require support from my buddy Marc. Wearing a life jacket, I was easily able to float and paddle around for quite awhile (one hand, two feet). The biggest challenge was getting out -- dragging myself up the ladder to the fixed dock, getting on my knees, then using Jamie as a steady "table" from which to stand. In principle, I can stand up straight from the ground, but it's still kind of frightening.

Sometimes independence means proving to myself and others that I can do something. Sometimes independence means being trusted to take care of myself and others, such as last night when Jamie camped out with the boys and left me to fend for myself, the cats, and the dog. We all survived. Yes, one of the cats stayed out all night; but that was his own choice, as he ran past me when I let the dog out for the last time; and I wasn't about to follow and wrestle him back into the house.

Taking care of myself at night mostly consisted of sitting myself down in front of a movie, then being able to tote back and forth from the bathroom to the bedroom with my CPAP distilled water container and no cane. "Functional independence" is probably what I'm most gauged by (if anyone's really keeping track):

  • Walking.
  • Dressing and bathing myself
  • Holding down a job.
  • Driving.
  • Relatively easily sitting and standing.
  • Not falling down too often or too easily
  • Cooking for myself and others
On these notes but not a bullet, I remember asking my in-patient PT where patients usually start walking without assistance (I was still confined to a wheelchair, outside formal therapy, at that point). She said "in the kitchen," because of easy access to support like counter tops. Soon after that, during a NRG (Neuro Recovery Group) exercise in the rehab "practice kitchen" (it was nearing Christmas 2010 and we were working on one-handed wrapping), I found myself struggling with the choice of getting from the counter to the supply table. I could blame it on right hemisphere impulse control issues, but it was mostly a desire for independence that sent me suddenly stumbling/lunging toward the table. Remarkably, I think it was the closest I came to an actual fall while in the hospital. I saved all my actual falls for home, which was always disappointing, because it always made me wonder if I had been discharged too soon. Even when I visit the rehab, I've felt like a fraud walking the halls I was never allowed to as a patient. Actually, a week ago, I did finally earn my "green band" to do just that. Turns out, all I had to do was ask. Oh, and not be a patient anymore. So I'm no longer a fraud. I'm a functioning independent with a green, plastic bracelet. Though Jamie says I wrap presents just as well with one hand as I used to with two. Hey, that's what gift bags are for.

On the subject of impulse control, regaining Independence also means freeing oneself from oneself. And that's not reserved for those with a brain injury. Any mature human being must be able to recognize and accept the consequences of his/her actions. I know my hair-trigger mouth runneth over, before and after my stroke. No excuses; only choices. Our brains are often our worst enemies.

But despite the holiday's implications, Independence is not the same as Freedom, as anyone married with children and otherwise productive members of society can attest. Wyatt's been on a kick lately where he insists it's unfair being a kid, because adults can do anything they want when they want. I don't know what billionaire playboy he's been hanging out with, but it sure ain't me.

Though I'm independently wealthy in other ways.