Ornoth

The following text was composed in my hospital room, 72 hours after my episode, and shortly before my discharge home. Be warned that you might not want to read this at night, alone, or if you're prone to existential dread. Sorree!

I had a stroke.

I can't possibly begin to communicate what those four words mean to me.

I used to have an older sister named Martha. When she was 21 years old, she was newly married and a brand new mother. One night, in the middle of the night, she had a stroke and fell into a coma. She was placed on a respirator, and her husband and my parents were in the terrible situation of making the ultimate decision.

At the time I was only nine years old, but the loss of my sister left a deep permanent impression. I can't imagine what it was like for her to wake up in the middle of the night and what she went through. Nor can I imagine what her husband went through that night. Since then, I can’t count how many nights I’ve layed awake, next to my sleeping partner, with the horror of that memory playing through my mind.

I also had a grandmother, who after her stroke was left perfectly lucid, but anytime she tried to speak, all that would come out is, "Beh beh beh beh." Stroke is sudden, unpredictable, and absolutely devastating.

Those fearsome memories come back to me very often both in the day and the dark nights when I'm awake alone. So I've always been highly sensitized about stroke: its symptoms and causes, its devastating effects, and how vanishingly quickly life can change or be entirely snuffed out at complete random.

I can't describe to you the visceral horror that stroke has been throughout my life. It has always been my biggest dread of all.

I had a stroke.

The good news -- that you all want to hear -- is that somehow, miraculously, mine was vanishingly small, and at this very early point in my recovery, it seems likely that I will regain full functionality. So in a sense, I'm okay.

That doesn't mean that I will continue to be okay, or that I can simply resume living my life as if I hadn't had a stroke at all. For the first time I will be on long-term meds: blood thinners and statins, which have unpleasant side effects. And there's going to be a whole battery of follow-up tests and procedures. Although stroke symptoms last a long time, both recovery and the risk of recurrence can last years. It will take time to see if and how I can resume all the activities that I used to do, including cycling and kyūdō. And I'm finally going to have to start eating and hydrating like an adult.

For now, although I appear mostly okay physically, I can't begin to describe the mental and emotional impact on someone who was sensitized to stroke as a child. If you've survived one stroke, you're much more prone to have subsequent ones. That has doubled the dread that I've always felt and tried to manage.

In my meditation practice and in my personal philosophy, I've often referred back to my sister's death as the thing that defined my relationship with life and death. Her passing taught me at a very young age that death is very, very real; that it will take every one of us; and it can come without any warning at any time, no matter how healthily we live. That has been the justification for my attitude of enjoying every day as much as possible, realizing how precious and ephemeral each moment of life truly is. I've always considered it a blessing to have learned that lesson so early in life.

Of course, acknowledging death is a completely different thing when it's happening to you, when the proximity of death is part of your present-moment reality. And now I somehow have to figure out how to cope with this sudden increase in dread for the rest of my days, however many or few remain. It's hard. And it's inescapable. And it’s final.

Of course I'm thankful that for now I'm recovering well. Throughout my life, in many ways I've been incredibly lucky that things always worked out well for me. And I guess I have to thank my luck as well for this dreadfully ominous warning being such a benign episode. My stroke could very, very, very easily have resulted in major disability or death. So I'm incredibly appreciative of my miraculous good fortune... at least this time.

And I have the deepest, most heartfelt gratitude for the caring presence of my life partner Inna. She is the irreplaceable foundation of my life. But I’m also concerned about what'll happen when either one of us dies, since we're so dependent on each other. So to my many friends: if I were ever to predecease her, my dearest desire would be for those of you who care about me to reach out and offer your friendship and support to Inna: the most important person in my life, and the person whose life would be most impacted by my passing.

Having said all that, I don't have much of a way to end this post on a positive note. Facing one's own mortality is grim work. It’s very easy to face toward life and be thankful, joyous, and share as much love as one possibly can. But it's also wise to see, know, and come to terms with what the ultimate future holds for all of us. And now that death has gently tapped me on the shoulder and gotten my attention, it's time to start taking my own mortality very seriously.

With a heart and mind full of love, joy, and dread.

I can’t say that I’m a big fan of losing a body part that has been with me since birth.

The first time I consciously noted the discomfort in my abdomen was in August, after I finished the Pan-Mass Challenge. I didn’t really pay much attention to it. It came and went, but eventually it became clear that it wasn’t just going to go away. By the end of September, it became prominent enough that I scheduled a visit to the doctor.

After describing my symptoms, the differential diagnosis was gall bladder, which was later confirmed by ultrasound. It made sense that my discomfort presented after the PMC; the gall bladder is involved in the digestion of fat, and PMC weekend typically marks the celebratory end of my training diet, when I finally allow myself to binge on high-fat foods like ice cream and cheese, after avoiding them throughout the spring and summer.

While I waited for a surgery date, the only way to manage my discomfort was to go right back onto a diet that was even lower in fat than my training diet. It was tolerable at first, but very limiting, and as the weeks dragged on, it got pretty damned boring.

Things proceeded pretty slowly. I talked to my GP in September, then a wait for an ultrasound, then a wait for a consult with a surgeon. He told me the surgery would probably happen in three weeks, at the beginning of November. Seven weeks later, November had passed with no surgery appointment and no word from the hospital.

I started a new job on Monday December 1st. That day, I came home and gathered up my paper mail from my mailbox, which included a notice informing me that my surgery was Thursday morning! You would think they would have called to make sure I was in town that day, or at least make some attempt to find a date that worked for me. Nope… Here’s your date, take it or suffer!

You’d think they would give more than 48 hours’ notice, right? Nope… So what if it’s your first week on a new job; if you want relief, you’ll clear your schedule on short notice. Ironically, their instructions included things to be done a week before surgery; I should have consulted a fortune teller, so that I’d have known to do those things five days before I was notified of my appointment!

The big challenge for me was finding someone who would take me home from the hospital. I’d already gathered four friends I hoped I could rely on, but one was out of town, two were unable, and another wasn’t responsive. I was pretty haired out until my friend Roopa agreed to help. Without her kindness, I would have had to cancel the surgery.

The actual surgery went pretty smoothly. While I expected hours of sitting around waiting, someone was usually talking to me, whether it was a prep nurse, an OR nurse, the anesthesiologist, his intern, the surgeon, or his intern. On seeing I was a cyclist (the unique tan markings are present year-round), the prep nurse gave me a memorable pitch for doing the American Diabetes Association’s North Shore Tour de Cure, which she oversees.

Once the appointed time came around, they wheeled me into the OR. By then I was already mildly sedated, but I remember the unique pattern of the lights. When the anesthesiologist put the mask over my face, I decided to count aloud for them, so that they’d know when I was out. I was told to just breathe deeply, and that pretty much was the end of that!

I have very little recollection of the recovery room, save for someone ringing Roopa to come pick me up. They wheeled me out and down to the car, where I lifted my arms in mock victory. Roopa got me home, where my halting gait caused one of the condo staff to ask if I’d been in another bike accident, but I replied, “No, just out of surgery…”

We made it upstairs and I flopped onto my bed. While Roopa very kindly ran down to the corner CVS for meds, I stripped off my jeans and shirt, hopped into PJs, and pretty much passed out. When she returned, we chatted for quite some time before she exercised her option to go home. I slept on and off a bit more.

The first 24 hours were challenging. Hydration and pectin drops were key because my throat had been irritated by intubation.

Being something of a Luddite about pain medication, I skipped the Percocet they prescribed, and didn’t even take any over-the-counter stuff. I’m a cyclist; I’m used to far more intense discomfort!

The worst pain was the dissipation of the CO2 gas they use to distend the abdomen; it irritates the diaphragm, but the signals sneak up that nerve and manifest as really sharp cramping pain inside the shoulder joints. That took a few days to dissipate.

After spending most of the day sedated or asleep, I opted to stay up late, then slept only briefly before waking up again at 4am. But that worked out okay, because I really wasn’t tired and had enough things to keep me entertained.

The surgery had been on Thursday, which worked well. Friday I spent most of the day sitting up at my desk, and was even able to remotely attend a couple work meetings. Each day I got a little bit stronger, tentatively introduced a little bit more food into my healing digestive system, and the pain slowly diminished. On Sunday I showered, shaved, and took the temporary dressings off my four incisions, leaving just some steri-strips. That made me feel a lot more human.

After three solid days of recovery, I headed back to work on Monday. I took the train in to the office and worked a regular day. Tuesday the trains were backed up, which forced me to walk the mile to work. None of this was fun—it challenged my stamina—but it did help me get back to normal functioning.

In the meantime, I experimented adding high-fat foods to my diet. Cookies. Cashews. Donuts. Pizza. A burrito. Fajitas. Lindt chocolates. And Häagen Dazs ice cream! My system took everything in stride, without any of the discomforting “downstream effects” that can accompany gall bladder removal.

Now, twelve days after the surgery, I’ve been cleared to do anything I want, including returning to kyudo and cycling. My sutures still require a little more time to heal, but life has pretty much returned to normal. I seem to be able to eat whatever I want, and I can finally make life plans without worrying about an operation with an unknown date and outcome.

About the only question I have left is how this might alter my on-bike nutrition needs during really long endurance rides. But I’m pretty confident, and eager to find out. But I’ll wait a while longer, letting things heal until springtime makes long rides possible again.

But overall I’m happy to say that I couldn’t have imagined a more successful outcome.

A week ago I participated in my third Pan-Mass Challenge, a 2-day,
192-mile fundraising bike ride to benefit the Jimmy Fund and Boston’s
prestigious Dana-Farber Cancer Institute.

I would have posted an update earlier, but I wanted to get the ride travelogue done, and it hasn’t been the usual pleasure to write. Although the first day was good, this year’s ride ended in a painful crash early on the morning of the second day of the two-day event. My ride ended when I went to the hospital to receive treatment for my injuries: abrasions all over my right side, a huge “road rash” on my right hip, and a puncture wound to my right elbow that required two stitches to close. I’m disappointed, frustrated, and feel pretty beat up, and I’ve still got $550 left to raise. Get the complete, unabridged story in my travelogue, and see the photos of the crash site and my injuries.