If I return home to my dear native land, lost then is my glorious renown, yet shall my life long endure, neither shall the doom of death come soon upon me. –Achilles, From The Iliad
Summer 2019
Time has no context…my sense of presence is drifting in and out…nothing seems important…the patchwork cirrus clouds command my consciousness, while the sinusoidal waves bring womblike comfort…am I’m dreaming? With each breath, I rise and fall, the water briefly covering my mouth, breaching the moment, reminding me of the urgency of the situation…I’m in very real danger, yet completely at peace…It’s a metaphor for life these days, a paradox….
How did I get here?
April 2019
Johnny Cash (thanks Trent) said, focus “on the pain, the only thing that’s real.” Pain, while relevant and certainly a governing body these days, isn’t real to me, it’s not physical, it’s entirely subjective and relative. If you’re used to DOMS (you know, that pain in your muscles that happens the day after a good workout), or perhaps the daily acute pain that comes from struggling with a disease like Parkinson’s, pain doesn’t register objectively, it comes at a discount.
Even with the “discount,” in route to Boston my left knee pain is so bad I have to put my foot high up on the bulkhead to relieve it. People are staring, impressed with my necessity-induced flexibility? …“Put your foot down” is the first exchange I have with the flight attendant. “OK, but can I stand…for the entire flight (“my knee is in terrible pain)?” …I look back from the galley and see my neighbor Oscar in the row behind me…a bit embarrassed…trying to diffuse. ”Hey, I’m Bill, I’ll be taking care of you today, I’ll be right here in the galley if you need me…lol”
I’m traveling to “compete” in the 2019 Boston Marathon, a life-long dream, but I can’t sit for more than 15 minutes without sweat inducing pain in my left knee and I’m also having extreme back “pain,” have for weeks. The cold compresses and Advil aren’t helping like they used to, I can barely walk right now. It’s the night before the marathon…I’m panicked.…I’m going to start and see what happens…but, honestly, in this condition, this could surely be my first marathon DNF (Did Not Finish).
I have mild degenerative disk disease and have always benefitted from anti-inflammatory interventions, including cold (ice) treatments, none of which are working now. Our dear friend Linda, with whom I was staying, recommended I try heat, which had historically made things worse (Structural vs. Muscular). I like to think I’m a student of science and would never be found kicking a TV, but I’m desperate at this point, so against the UL warning labels and historical pathological evidence, I taped a heating pad around my torso, set it to medium and attempted to go to sleep. I awoke to my phone ringing and jumped out of bed…I slept so well, I thought I missed my wake up…wait, what?…my back, for the first time in a month, it doesn’t hurt…I’m not talking about a marginal improvement, this is life changing!
I completed the Boston marathon, in my slowest time ever but under the 6 hours needed to qualify for the world majors. What a relief, saved at the last minute by my hosts’ heating pad and experimental openness….
May 2019
…The “MRI clearly show’s the cartilage in your knee is intact, you have some minor tearing in your quadriceps, but the dominant pathology is patellofemoral.”…Whew, this was incredible news, no major structural damage, now I just need to do some physical therapy and gate adjustments.
“Swimming!”
…”Huh?”
”Yes, you need to swim”, says my physical therapist…”Can you do that?”
Swimming would allow me to eliminate the impact on my knee, while cross-training for the three marathons I have coming up (I’m attempting to run all the world major marathons in a row), with Berlin looming in September, so…I would need minimally to swim through August 15, which will only leave 6 weeks to train for Berlin.
Ugh, I really don’t like swimming….
Who said…”Never meet your heroes?” Horseshit….
…I need a goal, one where the significance is so great it compels me to swim every day. I grew up around Lake Michigan and the allure of not being able, but wanting to see the opposite shore…I’ve always wanted to swim across Lake Michigan, always….
“Hey!…shh…I’m on the phone with Lynne Cox”…”Bill I’ve never done anything like that, a 64 mile swim is a huge undertaking, it’s not just swimming for 56 or 60 hours, it’s about the cold, deep lake water.” Lynne is a hero of mine, her strength and perseverance define human triumph…It’s an honor to be speaking with her.
I conferred with many open-water swimming experts, including Lynne, and determined that I could do it, despite the majority inferring that I could not, so I started swimming in the 50 degree water, every day, at first with a wetsuit, then without. I grew to like it and converted myself to a morning person (a feat in itself). Every morning, I would hop on my Vespa and ride it down to the beach, swimming several miles. I swam despite the weather, in tranquil calms to turbulent 5-foot waves, I didn’t discriminate. I really couldn’t believe it. I swam 3 miles, then 4, then 5, then 6, then 7, and then taught myself to eat and medicate while floating. Wow, I really can do this!
Steve Jobs said, “Sometimes life’s going to hit you in the head with a brick”
Then, something I never expected…. I started experiencing what I’ve witnessed with other dry land friends with Parkinson’s. I started freezing in the water, not from the cold, I mean I couldn’t get my limbs to move, at all, while swimming. I can’t adequately convey the intensity of mental effort applied, which met with no physical response…I still can’t fathom it completely.
In 1983, I was certified as a life guard and I am as comfortable in the water as anyone, but this was something different, no matter what mental state I forced a transition to, I couldn’t break it; that’s it, I’m going to die.…
Years and numerous close encounters with dangers in SCUBA diving taught me to stay calm in these situations, so I arched onto my back, getting my mouth just above the surface of the water, a real game of inches, and I exhaled and quickly inhaled. My body sank and rose with the volume of air, but it was sustainable, even in fresh water. Surprisingly, it almost seemed relaxing….
Man…. I had just secured a boat that was willing to follow me across the lake. I had started to socialize the fundraising concept to much excitement. I couldn’t back out. So I began experimenting with rapid effect medication substitutes, but when I encountered the freezing again, it was to no avail, the fastest acting agents still took 20-30 minutes to take effect. Too long.
How can this be?
I had been roaming the world of endurance sports at will until in January 2019, when I missed the cutoff time at CP5 of the Hong Kong 100 by 2 minutes, and now I can’t even complete 8 miles of a 64 mile swim. I’m losing confidence in myself, but then I think, just go for it, you will figure it out. 5 years ago, I would have. Let’s just say, I’ve matured since then, and so I decided it was too irresponsible to attempt the swim and shut it down.
End of story.
Cool Hand Luke’s boxing and Chumbawamba’s tub thumping offer similar inspiration, “I get knocked down, but…”
Despite my albatross, Parkinson’s, the overall journey can’t end this way. I learned a lot from those “swims” about myself, but also, remarkably, and more practically, about how to improve my running. Three years ago, I determined that I was incapable of running long distances continually anymore. This acknowledgment didn’t come easy and was a driving force for my extreme walking.
By experimenting to prevent the freezing, I began waking up an hour earlier than needed, to take my meds, so that they were fully effective by the time I started my swims. This proved invaluable to my running, as I discovered that the primary reason my left knee was so bad was due to running during medication off-cycles, as my stiff right leg, arm, and torso were driving profound bio-mechanical imbalances, severely tweaking my left knee’s rotation. So, now, I won’t run when in an off period, I only walk…well, mostly.
So logically next, I began experimenting to reduce or eliminate off periods. I already can ensure I’m not in an off-cycle for my morning runs by taking my meds earlier. But off-cycles are like dehydration, once you experience it, it’s too late; you must stay ahead of it. Only through doctor discussed titration experimentation was I able to determine the optimal dosage frequency and type, to minimize my off- periods.
These learning’s and applications were great, but not perfect, and I still had three marathon’s coming up in 5 weeks….
Fall 2019
How did it go? Well, I PR’d (Personal Record) in Berlin, ran an entire marathon for the first time since my diagnosis, and then in Chicago, I PR’d again, with my best marathon time ever, beating my 1999 time by several minutes. New York was a bit more of a struggle, but I still somehow ran my fastest New York time and finished the race arm in arm with another PD warrior, John Evans. My knee was feeling it again, but I now had a short reprieve!
I’m sharing this story for two reasons. First, some of us who may seem, on the surface, to have it all figured out don’t. I’m subjected to the ever-changing influence of Parkinson’s disease as much as anyone and I’m constantly learning and evolving. That’s my imperative. Secondly, I’m not breaking down walls, like I used to, but I’m thoughtfully and safely pushing my own personal boundaries, within the world I live, not bending to the disease, but working with it, embracing it to understand it and it’s effects better, and it’s helping tremendously.
Exercise is the antidote, Events are the proxy.
January 2020
As I write this I’m preparing to depart for Hong Kong, next week, to attempt the 100 again, on a knee that still is in recovery. I’m better informed, better trained, and better prepared than last year, and while I still may not complete it, I’ve done my very best I can live with that. Also, I’m hoping to complete all the world’s major marathons in a row, finishing with Tokyo and London this spring. I’m also attempting my first 100 mile race this June and looking at another endurance world record this fall.
I’ve continually found that setting aggressive and sometimes foolish goals for myself, not stopping at obstacles, but solving for them and staying positively optimistic, profoundly improves my overall well-being. Limits, like pain, are subjective and perceived, and it’s my hope that everyone finds the freedom to pursue their passions, beyond the perceived limits. It’s the only way to uncover what you are truly capable of.
I’ll be cheering you on.
I hope you will be cheering for me!
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Bill Bucklew is Chairman of the non-profit UnCorked Adventures and Chief Innovation Officer for Berkshire Hathaway’s The Pampered Chef. He dedicates much of his time to UnCorked’s mission: “To help People with Parkinson’s Disease make the most out of life, while we work together to find a cure.” You can follow UnCorked Adventures and Bill @ UnCorked Adventures or on Facebook.