9 September Surprise

September Surprise 2024

“In Dying Order”

In the ‘90’s, Mary Ellen, our next-door neighbor at our last house, exhausted herself with deep cleaning before every major trip. Among other things, with each excursion, she set about to cull her several foot-high stack of National Geographic Magazines, though never succeeded. Her stated objective of getting everything “in dying order” has echoed in my head for the last 35 years as a worthy goal, though it was never one I personally embraced. Our clutter and chaos always made it out of reach like for Mary Ellen, so I settled for more modest accomplishments like continuously culling, striving to “take one out when we bring a new one in,” and practicing good stewardship of possessions by passing them on before they lost their utility.

Bill’s high degree of distress over the summer with the diagnosis of Afib and initiating treatment of it while in Italy, triggered me to press for culling the small pile of items we stored in Selva, Italy over the winter with our bikes. It was a modest but significant pivot: to sort our things with the possibility we might not ever return. It wasn’t: “We’re not coming back” but rather, we aimed to pluck the few things that were better used at home and to give away a few other items. It was more a symbolic gesture to reduce our inventory than a deep cut, but it would take the shock out of that eventuality when it occurred.

Less than 2 weeks later, on the day after touching down at Portland International Airport, I had an ischemic stroke which landed me in the hospital for 36 hours for diagnostics. There was no treatment to be had, only diagnostics.

A welcome bit of cheer in these dark days.

I had stepped out of our truck after squeezing it into the building’s garage at 3 in the afternoon and could barely walk. I had intense low back pain and collapsed on my left side with each step, neither of which was unusual except that the dysfunction had always been on my right side. Once in our apartment, Bill applied the standard traction to my lumbar area, but it made the pain unbearable. I slumped to the floor and on to my back to catch my breath.

When I got up to pee in the middle of the night, I had to crawl to the toilet because I couldn’t stand. After a 2nd similar trip a few hours later during which I was also leaking pee, we decided it was time to go to Emergency.

I knew I was a ticking time bomb for a stroke because of my years of uncontrolled hypertension so, even though it rocked me to my core, the diagnosis wasn’t a surprise. Rather than “But, but, but….” it was “It’s happened.” In hindsight, I realized I had already passed through the denial and anger stages of grieving when the diagnosis was unceremoniously delivered in the ED by the attending physician as she whizzed by us.

The good news was that it was a mild stroke a little higher up in my brain, with its biggest effects limited to a bit of dysfunction in my left leg, resulting in foot drag, and an undetermined amount of damage to my mental function.

A 100% recovery was projected, in weeks or perhaps months. The subsequent brief interviews with a speech therapist, physical therapist, and occupational therapist reinforced that I was on my own to recover because my deficits were minor: “It will take time” became a chant in my head. I felt quite capable of managing my rehab myself but their “touch ‘n go” approaches reinforced to us that the hospital stay was purely for diagnostics and not treatment.

The shocking news was that there was so much damage to my brain revealed on the MRI from prior, unnoticed ischemic and hemorrhagic strokes that the unkind neurologist was shocked that I wasn’t suffering from dementia. I overheard him saying to Bill: “She is sharp” (phew).

My hypertension could explain the multiple, little hemorrhagic and ischemic strokes, but it was a confused picture from the neurological perspective and the doctor shrugged his shoulders and left my room. I was released from the hospital with a grim prognosis for my future and an itchy, latex-like allergic rash from each of the electrodes that had been adhered to my chest.

The the next morning when at home, I dutifully took the first of 4 daily doses of the prescribed antihypertensive for the day, though only a half dose, and, an hour later, I began passing out while sitting taking a blood pressure reading. Five hours later and after 2 more spells of almost blacking out while sitting, I could stand. It was time for the next dose, which I skipped. I would try cutting the dose to 1/32 of the prescribed amount sometime, but the experience reinforced that after 3 years of not taking antihypertensives, I still wasn’t likely to be able to tolerate them.

My 1/8 of a crushed antihypertensive tablet (1/32 of the daily dose) would have to wait until I was stable.

I reluctantly started taking a statin while in the hospital and the internist cut the neurologist’s prescribed dose, the maximum used, in half 24 hours later because of my leg cramps and GI bloating. Unfortunately, the hospital staff made an error and gave me my second dose in 12 hours, instead of 24 hours, so for 12 hours, I had 16 times the amount statin that I later learned was the limit of what I could tolerate and of the usual amount. A week later, my internist cut the statin dose in half again after I had a night with 10 hours of severe bloating and furious leg cramps. A few days later, I cut my dose in half again to 10 mg once a day.

The evening after seeing my internist, 9 days after my stroke, I painstakingly slipped between the covers resigned to quietly dying in my sleep—I felt barely alive. I was shocked when I awoke at 1:30 am, with my first thought being; “I’m alive!” The next morning, I required almost 2 hours to sit up in bed because my heavy, zombie-like state from the night before was still overpowering.

Mary Ellen’s “In dying order” became my guiding principle while I struggled to unpack from our summer in Europe and packed for a winter of trailer life. We both made deeper cuts in our stashes, cleaned more deeply, and became more organized. Life as we had known it had been shattered by my stroke and the thought of death loomed larger.

The upside to my stroke was that, even though I was functioning on one cylinder, we had the gift of time. I sadly cancelled my 2 cherished bodywork appointments for the week which I needed more than ever; I lacked the energy and focus to exercise at all; and the air pollution level was too high for us to be outdoors, so those extra hours were funneled into doing chores in what was left of our 2 weeks at home.

In our 3 years of brief stays in our apartment, we’d never succeeded in effectively managing our garbage. In a short-lived burst of an hour of energy before the statins dragged me down for the day, I devised a plan for converting the floor space in our hall closet devoted to shoes to accommodating 2 plastic garbage bag holders for our dry garbage and mixed recyclables. The closet was just around the corner from the kitchen and near our front door, so it couldn’t have been handier. Finally, we and our apartment, had the deserved neater look, and we were delighted with the new-found efficiency. We split our pile of shoes into 2 different rooms, which transformed their former jumble into neat rows.

When I was alert but suffering from profound malaise, I managed to cull our obsolete medications to later deposit them in a hospital collection bin. Another day, I rearranged 2 large kitchen drawers: a small undertaking but another upgrade to our efficiency at home. “Dying order” was the theme but, in the meantime, we’d revel in the unfamiliar tidiness.

I also seized a gap between my brain fog episodes to clean-up a bit of old history between us, increasing our sense of connection in the troubled times. We were cleaning house, literally and figuratively.

I stumbled upon a photo of me from about 35 years ago—I hardly recognized her!

In the last couple of years, being good stewards of stuff had meant sharing our excess with the full-time residents in a funky, little RV park on the Columbia River. We stopped there on the way to the SW and on the way home from there each year. Our departure day this fall would look like Christmas when residents saw our display of cast-off treasures on their community laundry room table. Taking out the intermediary in the donation process made parting with some of our belongings a little bit easier and we were grateful for more spaciousness at home.

A More Uncertain Future

Over the summer, when Bill was stewing about the wisdom of hiking between the Rims in October at the Grand Canyon with his new diagnosis of Afib, I encouraged him to set those dilemmas aside; for now, our mantra would be “We’ll stick to the itinerary though the activities may change.” That posture added enough certainty to help him move forward. I recited the same mantra to Bill when I was in the ED: “We will expect to leave for the SW the following Monday, as planned.”

We are living in parallel realties: we are continuing from where we left off at the end of August in the Dolomites, not knowing if we’ll ever knock-out 60-mile hiking weeks with 10,000’ of gain again or not. I didn’t know if I would ever hike again; I didn’t know when my next stroke would occur or if I would notice it; I didn’t know if I’d die in my sleep that night from a stroke or if the big one would strike when I am 92 like it did for my mother. I wondered if I’d fully rehab myself before I was disabled by the next stroke. I had more information about my risks than I had before the cardio-vascular “accident,” but I had no more certainty about my future than previously.

Bill found this uplifting sketch of stroke recovery from a Johns Hopkins website.

Bill’s definitive Afib diagnosis this summer had left him with an acute sense of vulnerability, particularly about being unaccompanied on big hikes, like the Grand Canyon’s Rim-2-Rim. He felt the doors closing on his sporting options. My sudden stroke deepened the profound sense of vulnerability for both of us, on the trail and in day-to-day living. When a new level of calm eventually overcame us, we’d have to establish new criteria for our safety when alone and it vividly renewed thoughts about one of us permanently being on our own. “Later,” I said, we’d have to address these prickly but familiar realities later.

Of course, certainty is a delusion. None of us has any certainty from one minute to the next, though we are immobilized if we don’t presume some certainty. Like we say “I have more information now, not more certainty.” It’s been a lot of information to integrate.

Three Weeks On

We left for the SW on schedule on a Monday, 2 weeks after arriving back in the States. I had a 36-hour stint in the hospital and Bill stayed on schedule with his 2-night get-away to Palm Springs to be seen by his cardiologist and be referred for the cardiac ablation that would likely treat his Afib.

I did almost all of my share of the 7 days of driving to arrive in Flagstaff, as scheduled. My motor function deficet was on my left side so, given our truck has an automatic transmission, I could operate the vehicle. My decision-making skills and reflexes were undamaged, so we agreed I was safe in the driver's seat. Driving however, overloaded my brain with more stimulation than it could comfortably handle and, after 4 to 6 hours on the road, I was in a zombie-state the remainder of each of those 7 days.

My self-directed rehab program after being discharged from the hospital of walking and adding nuances to my exercise routine immediately ground to a halt when my brain and body were swamped by statin side effects. At first, I cut back because of concern that I was overdoing exercise, then I cut back because I couldn’t get out of the chair, or off the too-convenient floor where I was compelled to often rest. When I left the hospital, I was confident about a quick recovery but my confidence quickly evaporated.

At 3 weeks, my round-the-clock headaches abruptly stopped but the feeling of being hung-over and fuzzy-headed was my new normal. I was able to do my first set of 12 minutes of light body weight resistance training and did my first 1 mile walk at a 2-mph pace in dirt with only some stumbling. The next day was even better: I picked up a little speed on the trail and went farther. The third day, I was dizzy and low energy: “Was it another stroke, the result of overdoing, or a reaction to yesterday’s covid vaccine”? More uncertainty. After 4 hours of miserable, viral infection-like-symptoms, we decided it was the vaccine. “Is it a stroke?” will be on the tip of our tongues for a long time to come.

Letting Go of Expectations

Next week, when in the Grand Canyon, I had planned to do Rim-2-Rim and after my stroke, Bill had planned to go it alone and take the shuttle back the next day rather than walk back for a “2-fer”. But the day after we arrived in Flagstaff, a desert hiking club member tipped us off: the temperatures at Phantom Ranch on the Colorado River were over 100°. We wouldn’t ever do that all-day hike in those conditions, even without our new maladies of Afib and a stroke, and our younger friend canceled his backpack trip there as well. Back to: “We’ll stick to the itinerary but change the activities.”

A few days later, the air quality in the Park tanked because of wildfires, further making the epic hike a downright stupid undertaking for anyone. Our fitness and the weather have to be just right for the all-day, cross-canyon hike to be worth the risk to us and this year, none of the variables were aligning for a safe crossing. We would walk on the rim and a short distance into the canyon when and if the air was good and continue to get our affairs and stuff in the trailer in dying order.

For too many years now, the joke when we turned-out the lights had been “Hope we are both here in the morning,” though now it is a more full-throated exchange. Each morning, we now add the additional greeting: “Glad we both made it!”