Sunday, April 29, 2012

Brain Dump (the early days)

"Brain dump" is a term I'd never heard before my current job, but I do find it useful as a way of getting started on projects, since I often seem to be much more full of ideas than energy. Also, stream of consciousness tends to be my modus operandi anyway, which may lead me to start conversations in the middle (weren't you paying attention to my interior monologue before I got here? I mean, really.) There were times in the hospital when I thought I should real-time Tweet my experiences and thoughts, if only to paint a more vivid picture of what I was going through. I now find myself a year in a half out with a stockpile of memories I never shared and would like to.

While talking to my psychologist about my blog (of which he has read a bit ), I remarked on how much it means to me to be able to give an honest portrayal of my thoughts and feelings here. He said his impression was that the blog was more about my thoughts. I had to laugh and agreed that I probably do have more thoughts than feelings.

On with the brain dump -- not that I can afford to lose any more of my brain (collective sigh at my self pity). In actuality, there probably isn't a huge level of urgency in getting this out, but I’ve waited long enough. Not that I’ve had any significant issues with long- or short-term memory, but there is a thread in whatever I do that doesn't want to delay or rely on any assumptions, expectations, or entitlements (Haven't I covered that? Best laid plans of mice and men, yada yada).

First off, I recognize that my timeline is skewed. I was thankfully spared much of the anxiety Jamie and the rest of my family and friends went through in awaiting news of my surgery results. In going back and rereading Jamie's entries from late September and early October 2010, I see that what to me felt like a matter of hours was in fact many days if not a week (I’ve attempted to map that out in a table below). I remember being taken down to the operating room and the anesthesiologist starting my IV. I remember her giving me a message from my friend Sue in Seattle, who is friends with a doctor at MGH. I don't remember counting backwards or actually being wheeled into the OR. The next thing I knew I was back upstairs with Jamie and being asked by doctors to hold up invisible pizza boxes – that was a common neurological exam to check for symmetrical motor activity. I have a faint recollection of successfully holding the "boxes" with my left hand early on, but mostly I remember fearing the question, since the majority of the time I heard it from then on, I was unable to lift anything, imaginary or otherwise.

Perceived and actual timeline:

perceived events
actual events
morning, Wednesday, 9/29/10initial surgeryinitial surgery
evening, Wednesday, 9/29/10conscious, able to move both sides, some pain in right ear.conscious, able to move both sides, some pain in right ear.
Afternoon, Thursday, 9/30/2010NoneSurgery for brain swelling and hemmorage, craniotomy, heart attack
Evening, Thursday, 9/30/2010NoneWeak on left, okay on right. Responding to commands.
Friday, 10/1/2010none; aware of being shaved.same.
Saturday, 10/2/2010nonestroke confirmed.
Monday, 10/4/2010sitting up, with helmetsitting up, with helmet
Tuesday, 10/5/10talking, writingtalking, writing

Other important memories:

Lying in bed that night following my initial surgery, I recall feeling some pain in my right ear. It was not severe or particularly foreign, since I’d had a history of sinus infections and earaches over the prior couple of years. As it turned out, that pain was an indication of swelling and possibly bleeding, but at least I was in the right place for it to happen. It’s hard not to recall that now if I have a little bit of ear pain, though I try to balance the sensation with the relative unlikelihood of a hemorrhage at this point and the knowledge that if I were to suffer bleeding, the pain would be significant.

After that, aside from getting bad news of what had transpired, my memories are pretty upbeat:

  • Gesturing wildly to Jamie and my parents to get them to give me my iPod Touch so I could check the Director of Photography on Scott Pilgrim Versus the World ( Bill Pope) and confirm whether it was the same cinematographer as The Matrix (it was). I still can't believe we hadn't worked out a simple hand signal for "iTouch" in advance.
  • The singing Yiddish nun: there was a very kind nurse or nurse's aide who used to roam the neuro ICU, singing songs in Yiddish – she said it calmed the older Jewish men, which I guess is who I’ve become.
  • Goofus and Gallant: when I told a nurse my sons are named Wyatt and Gus, she said, “like the boys from Highlights magazine?” I corrected her that they were Goofus and Gallant. That was a nice indicator that I still had my pop-culture wits about me.
  • Ironically and/or horribly, my parents and I watched an episode of Family Guy , in which Peter has a stroke after eating too many fast food hamburgers. My mother asked why Peter looks like Richard Nixon. I did not answer at the time, but I believe the connection is that both their faces are modeled after male genitalia. That’s not intended to be an argument for Intelligent Design, other than on the part of Seth MacFarlane. And it certainly isn’t as apparent as the character Dan Aykroyd plays in Nothing but Trouble or the actual talking penis in The Groove Tube(directed by Ken Shapiro!).
  • my Aunt Ellen and cousin Maggie gave me a neck pillow . At the time I did not and could not realize its value – that pillow has gone everywhere with me and has been instrumental in helping me get a decent night’s sleep without putting pressure on the right side of my head. That was especially important when I had no right side of my head.
  • Koosh catch: Ellen and Maggie also brought me a Koosh ball, and the whole family had a nice game of catch with it. It was a good test of my reflexes, though sadly was early enough on that I remember still thinking my left hand might jump out to make a catch.
  • WTF: as that article describes, there was a controversy on the local news about a T-shirt the Wakefield Track & Field team was selling. That has appropriately become a theme throughout my recovery.
  • For some reason it was very important to the nurse’s aides that I be clean shaven. I know Jamie was horrified by that, and at one point there was a horrifying picture which my friend Jamie Boy had taken, showing how they shaved my beard into a small, Schneider-like mustache. I remember an aide asking one morning, in a thick, Spanish accent, “We’ll have to be sure to re-shave you today?”what I heard was, “We’ll have to make sure you reach heaven today?” My answer to both questions was a sincere, “No thank you.”
  • When I was first given my helmet and sat up in bed, there was a cadre of therapists, family, and nurses who formed a human wall, prepared to catch me as I teetered from side to side, frontwards and backwards. I quickly learned from that day on that if anyone ever asked, “Are you sitting up straight?”, the answer was “no”. If I actually were straight, they wouldn’t ask the question. That strategy also extended to the standard questions, “Are you standing up straight?” And “Are you putting equal weight on both feet?” Well, are you?
  • G-tube: disclaimer this is not for the weak-kneed: I still want to know more about the surgery to insert my G-tube (the feeding tube for my liquid diet, prior to being cleared for solid food or even swallowing fluids). Reading the blog, I can see that measures were taken to avoid another surgery if possible, and that was probably the reason it was performed with local anesthetic, rather than putting me to sleep. The surgery itself was probably the most painful thing I experienced throughout my hospital stay, regardless of the numbing agent they used. In retrospect, I would’ve asked for much more information about what they were doing, since I wasn’t expecting any pain. Sneezing in the middle of the surgery couldn’t have helped, but I don’t remember anyone being upset about it . That’s all the downside. The upside is that that tube provided me with nutrients for a few weeks until I was cleared to eat and drink orally. I also enjoyed the fact that the model tube was apparently new, which apparently warranted comment from every new nurse who saw it – “Why, that’s the smallest G-tube I’ve ever seen,” they’d remark, until I eventually had to put an end to it, saying they’d give me a complex – never disparage the size of a man’s G-tube.

Sunday, April 01, 2012

On the Road Again

I don't think it completely sank in until the driving instructor asked me how long it had been since I'd been behind the wheel of a car, but it was September 2010 – probably the drive to the train station to catch the DownEaster to Boston for my first surgery.

Long story short, I had my first driving "lesson" last Tuesday in order to prepare to take my road test and regain my license. Much of the hour spent in a supermarket parking lot and on quiet roads were simply to get me used to the feel of driving again, especially with some modifications that will be made to my car. Fortunately, AAA provides a pre-modified car for practice. Because my weakness is on the left side, the only modifications I really need are in moving the turn signals from the left side of the steering column and the addition of a knob to the steering wheel to make one-handed turns easier. Many people I mention that to have responded with a little glee, "Oh, you mean a suicide knob!" I've had a little trouble finding a true origin to that term, but I understand they were fairly common pre-power steering and in hot rods. I'll have to go back and re-watch Rebel Without a Cause and American Graffiti and look out for them.The image originally conjured for me by that term was that such a knob could make it easier to drive off a bridge. And, as it turns out, they are often called "Brodie Knobs" for a man made famous for jumping off the Brooklyn Bridge. They're apparently also called "necker knobs", though that's not much use to me, since I'd have to take my good hand off the wheel entirely in order to make my move (if I had a move to make, that is). The state tends to frown upon drivers having no hands on the wheel, which is one of the reasons why a simple turn signal extension arm over the center of the steering column toward the right side of the wheel is not as preferable as hand-accessible signals built directly into the spinner knob.

The good news is that these modifications are pretty basic and were relatively easy to get used to. And I didn't scare the driving instructor or the OT from the rehab horribly, nor did I take out any bystanders or mailboxes during my practice time.

I'm looking forward to one more practice run before having our car modified and scheduling my road test. In the meantime, look for me and my chrome skull suicide knob out drag racing in my sweet '96 Toyota Avalon, on my way to watch the submarine races at Inspiration Point.