Revisit 2019 travel to Spain with disabilities. A guest in other people’s lives. Differentiating between sound and noise. Heightening senses, expanding voice.
Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey. Read More
It’s been a strange week post-infusion. The infusion wore me down. My pathological optimism took a hit. Mood has its ups and downs in the best of circumstances. Although I mostly live up, the human condition is variable, jagged, up and down. I don’t dwell much on my Multiple Sclerosis. It’s seriously annoying, but I am not Multiple Sclerosis. This week I can’t shake having a progressive illness, especially during the witching hour from 1 am to 4 am. I saw my physical therapist. She told me I’m progressing very slowly. 2-3% a year over the past five years since she started recording the Boston University AM-PAC™ for me. Sheesh, that’s pretty specific. Slow, but still progressive. Walking’s my biggest challenge, as you know. I’ve gone from walking slowly unassisted to walking better and safer with a cane. Now it seems like I need two canes when I’m feeling less strong and on uneven surfaces. Plus I started using an electric wheelchair when I’ve exceeded my endurance limits. A month or so ago I graduated to a trike with 27 instead of eight gears when I noticed I was living at gear 2 on slight inclines. Ten years ago I set a minimum target of 3500 steps a day. I actually averaged 7500 steps a day five years ago but kept the minimum of 3500 because I so like to exceed expectations. Even my own. Now I average 4500 a day. I’ve only missed a handful of days at 3500 steps in the past 10 years – once when I had pneumonia, and several immediately post infusion.
I don’t share my demons for your sympathy. We all have demons, in different flavors. I share my demons to highlight my goal of operating at peak performance. I used to think of peak performance as something athletes did. Serena Williams, one of my athlete heroes, lives at peak performance. Peak performance is a moving target for everyone as circumstances change. For Serena, the moving target has been age and pregnancy. For someone with a progressive condition, like MS or aging, peak performance is also a moving target.
Peak performance depends on equal shares of genes/biology, circumstances, effort, and luck. I’m a white man born with pathological optimism. Those are genes. I did nothing to get them. They’re gifts. So is the MS. Circumstances are that I live in the US, I have access to many modes of transportation, our water is clean and clear, and electricity is plentiful. We can take advantage of circumstances. Effort is my routine of diet, exercise and stress management, loving my family, feeding my network, showing up. I choose to put in the work. Luck is that I met my wife and that both my sons settled in Boston. I’m thankful for luck. Effort is that my wife and I pulled up stakes and moved from upstate NY to Boston when our sons settled here. Circumstance is that Boston has many choices for healthcare delivery so I can pick and choose. Make sense?
It’s actually fun, curious, gratifying and hopeful to reveal and assemble the pieces of the peak performance puzzle. I never appreciated how much work it is nor how rewarding. It takes a team to live at peak performance. I have a great team. That’s circumstance, effort, and luck.
My mission expressed in my brand, Health Hats, has been to empower people as they travel toward best health. Lately, I feel like I’ve lost touch with the essence of empower. It’s been feeling arrogant. I’m not giving anyone anything. I’m not liberating anyone. I have no magic sauce, silver bullet, elixir, wand, pills or buds for empowerment. Maybe empower means that I’m participating in someone’s work to operate at peak performance. As a guest or a teammate, of course. OK, I can live with that.
Multiple Sclerosis opened my door to peak performance. Thanks for stepping through that door with me. Quite a ride.
I fell in New Orleans a couple of months ago flat on my face. No injuries, scraped my hands and arms. Freaked me out a bit and my friends. A week later, back home, I fell again. Same thing. My primary care doc and neurologist always ask, have you fallen? Falling is one of two outcomes we track together. (The other is, are you still playing your saxophone?) It’s been a long time since I’ve fallen. Outside. A year or more. I had to stop shoveling snow. I didn’t mind falling in the snow. Kind of fun. Worried my family, though. I do fall inside when I’m turning suddenly, like in the pantry or trying to vacuum. I’m starting to be a bit alarmed about this increased falling. I stumble a lot normally but always catch myself. This is stumble and fall. Not good. I worry about it at 2 am the apocalyptic hour. Otherwise, I’m pathologically optimistic and flex my superpower: accepting what is.
I met a buddy (we’ve been dear friends for more than 40 years) in Washington recently. He wanted to go to the National Gallery. He suggested we rent a wheelchair. I’ll push you, then we can spend more than 30 minutes looking at the paintings. He knows that my sightseeing endurance has been steadily decreasing. We spend more time to rest me each time I see him. I was reluctant.
My wife wants to travel. I’ve been resistant. I just don’t have the stamina anymore. I’ll be a drag. But, I love having adventures together (the nonhealth-related kind).
After the falls, I was in Baltimore for a meeting. I was telling a colleague about my falls. He uses an electric wheelchair, collapsible, with a joystick. He said I should consider getting one. He’s an amputee. He can walk most of the time quite well. Often the wheelchair will spend four months at a time in his garage. He doesn’t need it. But traveling can be wearing. It collapses and he can gate check it on the plane. Weighs 50 pounds. Folds with the pressure of one finger into the size of a medium size suitcase. Has a range of 14 miles. It’s 23″ wide. I’m intrigued. As a habitual doer, I bought one two weeks ago.
I feel like a charlatan. I can walk. I’m not paraplegic, I didn’t have a stroke. My chiropractor said, as long as I keep up my 3500-4000 steps a day, think of the wheelchair as an extender, not a crutch. What’s wrong with a crutch? I use a cane. Anyway, I’m testing it out. I’ve been aware of community accessibility issue for a long time, but now I appreciate every slope, every intersection, every pothole and crack, every lip that’s greater than one and a half inches. I’ve had to get out of the chair and right myself several times. That feels ridiculous.
When my mom starting falling, I suggested that she get a cane. Oh no, honey. That would be silly. I don’t need a cane. It would look ridiculous. I said, Ma, I use a cane. Do I look ridiculous? She replied, oh, no honey, I’m so glad you’re safe. It’s a great accessory for you. No irony.
So, anyway. Sigh. Soon I’ll be comfortable enough motoring around in it. (I need to give it a name). Next, I’ll have to take it traveling. Ok, maybe I’ll feel a bit ridiculous. Pride recedes, Europe on the horizon.