Wednesday, September 14, 2022

The Accidental Buddhist

Another question I get from people is some version of, “How can you be okay with becoming disabled?” Ummm, I’m not? Sometimes? But it’s okay? 

I mean, if you’re seeing me it means I’m having a good day. I have the energy to get out of bed, I probably took a shower, and I put on (ugh) clothes. So I’m probably in a good mood.

 

Also, I’ve been sick now for 29 months. I’ve had a lot of time to adapt. I’m not in pain. If I were, this would be a completely different journey.

 

What I’ve learned is that there are a lot of people out here who are disabled. There is a lot of invisibility in this group. Long Covid has, by dint of adding so many more people to the cohort, elevated the awareness of the acronym-afflicted (CFS, CFIDS, ME, PVS, VICD, POTS, etc). Because so many other people are experiencing this right now, there is more openness and acceptance and vulnerability to sharing about it.


Someone along the line recommended this book, which I just finished reading (and yes, that means I read the first 30 pages and skimmed around the rest because that’s what my brain allows me to do right now). The author’s experience echoes mine in terms of symptoms and adjustments (but not isolation and disbelief from medical providers). And I discovered that without studying it I accidentally became mostly Buddhist.

 

I celebrate the things I can do. I mourn the things I have lost. I accept this is my life now. I set routines and expectations based on realism. I have not lost friends. You all showed up. My family is awesome. Brian is the best caretaker I could have ever hoped for.

 

I now understand why retirees become birders. Because when I walk the same 4.43-mile route every day I see my birds and watch their chicks grow. I learned the word “whimbrel” and know it is not a mere sandpiper. I’ve seen the damn sand hill cranes every week. The great gray owl was a treat. (My friend Jenny claims retirees get into either birding or genealogy because they are good, basically endless projects for people who need something to do. She is not wrong.) But it’s time to change things up.

 

It’s time to stretch a bit. We’re hitting the road. 

 

∼Lucy

Tuesday, September 13, 2022

How.....?

Last night my bonus mom asked me the same question we've received from many of you, "How are you going to travel with...." She didn't use the D word, but it's always lurking. I'm disabled. Sometimes I prefer to use the word compromised. But that's semantics. Long Covid is real, and has left me with a suite of symptoms.

https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/

This article came out yesterday and I really appreciate that it detailed many of the symptoms I have encountered. I can't really rank mine from best to worst, as they aren't all present at all the same times. But the inability to read/comprehend is perhaps the most heartbreaking for me. I love reading. I miss my books. My to be read shelf cries out to me. My library hold list is an exercise in frustration. Yes, I have tried audiobooks. Same problems with concentration. I do best with short form, and have read lots of essays and poetry over the past two years. The lack of executive function and concentration certainly made the end of my career feel like a buck off the horse and not a graceful dismount.

 

But to answer the lurking question: with care. This isn't a wild hare. Brian and I agreed to an early retirement and nomadic lifestyle on our first date. We've taken three trips since I became ill. Each one has taught us that yes, we can travel and be joyful. But we have also learned that there are limitations.

Our first trip was to raft the Colorado River through the Grand Canyon. Whoa! I can hear you cry. That?! But here's the thing: my physical limitations primarily mean keeping my heart rate below 150bpm. I've been down this river before. I had all the gear. And the "executive functions"? There are very few choices that have to be made on a trip like this. The river only flows in one direction. You get up, eat your breakfast, and float downstream. The big choice is where to camp and if you are pitching a tent. 

Our second trip was to Oregon for a family wedding. We took two weeks to tool around and enjoy ourselves. What we learned was that taking the slow roads and having quiet time are necessary. That seeing our family and having time with them is crucial. And that when faced with a major change to the itinerary (going to Seattle for my intake appointment for the Long Covid study) we were able to be nimble and make it work. And that asking for help is okay (thanks Cousin Donna for putting us up on a moment's notice)!

Our third trip was the shortest of the bunch: back down to Seattle for more medical appointments. We followed the patterns we'd set. Do not over-plan. Ruthlessly triage must versus can versus want. We still managed to spend time with loved ones (great new house Cousin Rafael!) but I know we missed out on seeing so many others because of my limitations.

Generally speaking I have two "good" hours per day. What this means for this journey is traveling slowly. We'll be in Madrid for a month. If I don't see every painting in the Prado and spend half that time in bed, we'll still have found enrichment. It means reaching out to friends and asking to see them under limited conditions: shorter time periods, quieter environments, and so on. (My brain will absolutely not put up with loud spaces anymore. Crowded restaurants playing music? NOPE.) If any of you insist on meeting up in a noisy venue, you'll get 15 minutes tops. Feel free to take Brian to a sporting event without me (okay, I would have been delighted with that before Covid).

So, we're looking forward to seeing you all, seeing new places, and figuring it all out along the way. Will my brain allow me to learn Spanish? We'll find out! But it already dredged out the memory that pulpo means octopus and that's a solid start.

~Lucy