The best laid schemes o’ mice an’ men gang aft agley…. -Rabbie Burns

There it is. You’ll note the dates. We created this blog with such hopes and plans for 2020. Then the world changed. Then we changed. Here’s the scoop:

 

Brian and I planned to retire in July 2020. We would sell our little condo, become nomads, and merrily go our way around the world. We had been working towards this goal for many years now. Our nest egg was in place. In January 2020 we even travelled to Monterey, CA to get Brian’s gallbladder out and clean up the medical decks before launching. On the flight home some people were masked, the airline was already taking measures to minimize individual contact.

 

February seemed quiet, but by March that was it. Lockdown. We were perfectly happy in our little home. We had food in the pantry. Puzzles. So many books on the To Be Read shelf. Yoga to do. Briefly, it was a bizarrely contented time.

 

Then April hit. On the 10^th I had a rare headache. We’ll never know how I got infected with Covid. We’d been isolating. But we live in a condo building with shared lobby, stairwells, elevator. Who knows? In fact, with the lack of available testing we can’t even prove that what I had was Covid. Our doctors say it was. But it developed into a weeklong fever. When that broke we were sure life would go back to normal. Week after week we thought that was the case. It wasn’t.

 

I have been sick ever since. The “long hauler” experience is different for everyone but it is never simple or easy. In some ways it has been harder on Brian. I don’t remember many months in 2020 and 2021. Huge chunks missing. Luckily, I have journaled since I was 14. I can look back and see 2-3 scrawled sentences. Sometimes only 2-3 words. Those days passed.

 

On one hand I am aware how very lucky I am. I was never hospitalized. I was never in pain. My breathing irregularities resolved within a few months. My work has been very understanding and I was put on long-term disability insurance (wrapping my head around identifying as “disabled” has been excruciating). Brian and I are financially stable. No one can take away our home. We weren’t trying to homeschool children through this pandemic. My medical providers have never expressed any doubt as to my veracity, which is certainly not always the case. I have a supportive family and partner. In some ways, this is very easy. 

 

On the other hand, this is very real. The symptoms are varied but the main ones are exhaustion, tremors, brain fog, and short-term memory issues. The minor ones are a range of bizarre – covid toes, stinging tears, and hiccups. Reading has been almost impossible which just kills me. All this time, and I can’t crack the To Be Read shelf. People kept recommending podcasts, but I could barely focus enough to consider one. I made the rounds with every specialist in Anchorage – rheumatoid, neurological, cardiac, pulmonary. The good news is that I absolutely do not have an underlying autoimmune disorder, nor have I had a stroke. Most of the testing has identified anomalies, but nothing that they can treat (or even understand). I do best when my heart rate doesn’t go above 150 bpm. Over that, and all hell breaks loose. My doctors are learning about this disease at the same rate I am, slowly. I am improving. Just at a rate that is so slow that turtles and snails whiz by me.

 

While long Covid still has no treatment, our doctor recommended I join a study so as to have benchmarks and feel a sense of contribution. I have since joined two online-only studies and now a 4-year in-person study looking at all possible factors (https://www.swedish.org/classes-and-resources/research-studies/org-20192-isb-uncovr). This will necessitate regular trips to Seattle, which is no hardship.

 

Initially being ill led to many feelings of shame, frustration or guilt. By now I have worked through most of that. A big part was having several honest talks with my boss about hiring someone to take up the load. With my memory issues, I couldn’t ethically talk to clients and give them advice….that I didn’t recall giving. The exhaustion meant that just checking emails took everything I had for the day. It left me nothing else. I have been working about 4 hours a week for the last year. This is not the way I intended to wrap up my career. Our doctor gave me the useful guidance: everyone wants to dismount, no one wants to be bucked off. But the buck has happened. As of today my notice has been turned in.

 

The path forward is far more tentative than our 2022 plans. We still hope to travel. We plan to keep our little condo (for now). I don’t think that we’ve seen our last pandemic. And we saw how quickly borders can be closed and people expelled. Having a landing pad makes sense. In the meantime, we are reaching for the joy we can. We find that in our relationships with family and friends, and discovering the world. A silver lining in all of this? Our bond is as strong as ever.

 

Lucy