birthdays, bucket list, cake, Chris Waddell, Dave Eggers, klepto-collaborative poetry, Leary Firefighters Foundation, Life List, Marie Lovas, Michael J Fox, Mike Pugliese, MS, multiple sclerosis, New York City Marathon, No Opportunity Wasted, Phil Keoghan, recumbent trike, Ride Ataxia, TED, TEDx
Birthday Life (List) to me! Wait, doesn’t that make sense? Let me explain.
I was born the end of August in 1964, so I recently turned forty-eight. On the one hand (as in, this damaged body, my fickle health, lots of disappointments & failures), I feel twice my age. On the other hand (as in, that part of all of us which remains child-like in terms of hopes & dreams, and in consideration of all the people & ideas & experiences that wake me up and make me want more More MORE), I feel half my age. Does everyone experience this dichotomy as they get older, hovering in the realm of so-called middle-age, or is it just me?
To provide appropriate context and help you understand where my head & heart have been dwelling of late, I have to first give you some information that’s the antithesis of Happy. In the couple weeks leading up to my birthday I received news that a very dear friend passed away, and then, days later, I got an email informing me another friend had died. Both of the deaths were sudden, unexpected. Both of the people were just a few years older than I am. So this birthday, more than most, was imbued with a lot of emotion, a great deal of spiritual sorting. I can’t remember a birthday where my focus was circling around and around (and around) the notion of what’s left undone when we die.
If you’re anything like me, you probably prefer to think of death as something that happens to “older” folks, but it happens to all of us, regardless of age, regardless of how much good health we’re in possession of or how much time we believe we still have in store. The fact of the matter is that we don’t have a known quantity of health or time. Most of us live day-to-day with the expectation of more time; we plan into the space of that time; we actually invest in the expected, planned-for more of our lives. We tend to live -if we’re young, or think ourselves young – as if the best of times have yet to happen, a glorious stretch of Somedays for all the good stuff, our shiny futures out there in the distance, waiting. We mean to reach the Somedays and shiny before we die, of course. Of course!
Since I have MS it’s reasonable to expect that I might have less time on this earth than the average healthy person who’s roughly my age. For example, I always think of myself as dying (when I think of dying at all) before my husband, who’s two years younger than I am and, as far as we know, in good health. It might be a safe bet that a healthy person with no obvious/diagnosed illness will live longer than a person the same age without any obvious/diagnosed health condition, but bets – no matter how safe they seem – are, by their very definition, guesses. Wagers are made with probabilities in mind, but a probability is a far cry from a certainty, an eventuality. It’s called a bet because nobody actually knows what’s going to happen. Mortality-wise, we tend to place our bets on living longer. We let all of our chips ride (to the next day/week/month/year/decade), even though we know, with our rational minds, that we could be in a deadly accident with the next trip out of the driveway, we might receive a fatal diagnosis at the next doctor’s visit. We allow ourselves the delusion that, for the most part, those kinds of unfortunate calamities happen to other people, and on the plus side, this system keeps us from freaking out on a frequent basis. But there’s an inherent flaw, a real down-side cost, as well, which is that we learn to take tomorrows and next weeks/months/years/decades for granted.
When an all-bets-are-off kind of calamity lands a blow close to us, to someone we know and love, the aftershocks can cause us to reexamine the system that’s designed to keep us from freaking out. A beloved’s life ending abruptly causes us, if we allow it, to look inward; that sudden loss gives us the opportunity to take stock. Losing Mike Pugliese – the trainer who taught Luke his life-saving, life-changing mobility assistance dog ways – and Marie Lovas – a beautiful, insightful and inspiring poet – brought profound grief, a great deal of reflection and reevaluation to me this past birthday. As in, What have I done with this life of mine? What am I doing (or not doing) to accomplish the goals I’ve set, to effect the changes I desire, to realize my dreams and make my time, my life, matter. More specifically, What have I done lately? and What opportunities have I left un-reached-for?
Like a lot of people, I keep a list of things I want to accomplish in my lifetime. Some people call that a Bucket List, as in, what you hope to do before you “kick the bucket.” I prefer the term Life List, which I
stole borrowed from Phil Keoghan and his No Opportunity Wasted mantra. (If you’re a regular reader of this blog, you already know I’ve got a compulsion problem bad habit unique talent for klepto-ing other people’s inspiring ways to supercharge my own dreams.)
Phil Keoghan – in an indisputable act of what’s legally termed “aiding and abetting” – wrote a book called No Opportunity Wasted: 8 Ways to Create a List for the Life You Want to Live
I consider myself a poet, so obviously I’m a big fan of words. I know that words have great power, which is why I believe in growing a passion for and a facility with language. Most especially in kids. I created a poetry-in-the-schools project back in Hollywood, FL where I used to live.
I’d always wanted to do something like that – it was on my list! – but for a long time I didn’t take any action to realize the dream. Then someone inspired me to get the dream off the List.
I klepto-ed some of Dave Eggers’ winning ways, followed part of his proven pathway, and realized that dream. Even now, I kind of can’t believe I did it. It wasn’t an easy thing, moving words from the pale blue lines of a notebook all the way to real life. But I did do it. That year of my life, crafting word-journeys with kids, transformed me beyond measure.
Like the realized dream of doing the NYC Marathon with Team Leary Firefighters Foundation and performing live-action Klepto-collaborative poetry for a TEDx conference, the feeling of having done what I’d long hoped to do was perfectly luscious, pure bliss, a divine experience of celebrating life. My wished-for life. A Life List is basically a wish list. Each wish is the barest of outline for a story I mean to create. Each wish-story says, I’m going to go here and do this, go there and do that, before (the end of the story, where) I die. Told with slightly different words, my Life List story is: I’m going to accomplish These Goals before This Deadline. Which seems like a sound proposition, but the
problem challenge with my Life List – with anybody’s Life List – is that the Must-Be-Completed-By date is unknown, and usually remains unknowable. Which is why the words “No Opportunity Wasted” create the befitting acronym NOW. (I have a fetish addiction to thing for good acronyms, have I ever mentioned that?)
Part of my Life List is about the way in which I want to celebrate my 50th birthday. My thinking, until very recently, has been that I’ve got a couple years to decide and plan for what I’ll do to mark the anniversary of having lived a half-century on this planet. I want to do something big, something befitting the fact that I’ve battled multiple sclerosis for half my life and prevailed in the fight. I’ve thought about doing the MS 150 in Southern California, which winds for a good part of the ride along the Pacific Coast. I’ve considered a cross-country trip on my recumbent trike; you know, kind of like what Phil Keoghan did, but without the tight time-frame (and not looking anywhere near as ripped & spiffy in my lycra). I’ve explored the possibility of climbing a mountain a la Chris Waddell’s tackling of Kilimanjaro via handcycle; I’d use a foot-powered quad, because 3 wheels don’t offer the traction and stability necessary for rocky/sandy/muddy terrain while ascending aggressive inclines on trails. Maybe a long ride to a large body of water that I then swim across (because swimming is the only other athletic pursuit that doesn’t laugh at my lack of balance); though it would have to be a lake or bay, or my open-water swimming would need to improve dramatically (the rougher the water, the more my equilibrium is thrown off).
Then there’s Kyle Bryant (who I’ve talked about before on this blog), a guy whose 2,400 cross-country ride – from San Diego to Memphis – and continuing tireless efforts to raise funds and awareness for Friedrich’s Ataxia have fueled my inspiration/motivation tank more times than I can count. And he continues to be a source of inspiration/motivation because he just keeps on keeping-on, keeps achieving more and more in the face of challenges that would make others settle for achieving less and less. Like Phil Keoghan, Kyle rode across America to raise awareness and funds for a cause, to make a real, lasting difference in the lives of those touched by a disease Kyle knows only too well. Taking nothing away from Phil’s efforts, commitment and accomplishment, it must be noted that Kyle did his cross-country ride with the added, substantial challenge of illness and disability. And because Kyle was able to tackle this feat – because, like Kyle, my life is partnered with illness and disability – when I hear Kyle’s story, I relate on a deeply personal level. I say to myself, If Kyle can do that, then maybe I can do something defiantly-big too. Something that makes a difference for others.
Hear what Kyle says in the opening? He says “… do it now, while I still can …” See? Great minds (and hearts) really do think alike.
For Phil and his cross-country ride, I’m filled with congratulations and gratitude and inspiration to get out there and make a difference. For Kyle and his cross-country ride, I’m filled with the burning desire to reach down into the deepest parts of me and meet the challenge, and because I see myself in him, I’m fueled with the belief that I, too, in spite of this body afflicted with illness and disability, am capable of accomplishing great things in the name of a great cause.
As you can tell from these examples, the way I want to mark my 50th intended to be extravagant in ambition. The adventure, the dream, is striving to be a bold statement of what I, in spite of MS, am capable of accomplishing. I need this goal to be both challenge and celebration. And I’m already in training, even though I don’t know exactly what the Big 50th bonanza is going to be. With every New York City Marathon as member of Team Leary Firefighters Foundation, MS 150 and Ride Ataxia. With each morning swim (not less than a mile), Pilates, and the self-created routine of exercises I do in the pool after my swimming (a combination of ballet moves & resistance training). All of those efforts are preparation and preamble for this Big Thing. Sounds pretty good, right? Sounds like I’m “on track” for the plan to succeed, wouldn’t you say? But what if I don’t have those two years more of getting-ready and planning that I’m counting on? What if my bet – placed on the idea of making it to my 50th birthday – loses?
Phil Keoghan’s idea for No Opportunity Wasted evolved after an event which caused him to think differently. Something outside of his control happened to him, which in turn caused reflection, which in turn caused him to reorganize the way he thought about his life. After re-thinking, Phil made a promise to himself and he committed to effect changes in his life. A promise, of course, is a bunch of words. Words with intention behind them, words meant to be true or to come true. But words themselves – even when they’re gift-wrapped with the sincerity of promises, spoken with the solemnity of a vow – don’t effect change in and of themselves. We have to follow up our words with action to effect change. And that means my Life List, my goals & dreams, all of my intentions, total up to a big Fat ZERO if they stay words on the page. Without action, goals are only ideas in my head, dreams are just wishes in my heart. I know this already; I learned the lesson from an experience involving inspiration received through someone else I very much admire, Michael J Fox, whose example of living life large and to the fullest in spite of illness motivated me to make some significant changes in the early years after being diagnosed with MS. I’ve klepto’d other people’s dreams since then, too, and declared in the past that my
not-so-secrect superpower is knowing the formula of inspiration + action = change. So it’s not that I don’t understand or had forgotten that the action portion of the equation is needed. Where I was failing myself – and my Life List – was in the belief that I had plenty of time to get around to the action-taking.
I’ve a actually had the Southern California MS 150 on my Life List for two and a-half years, but the seeds of that big dream were planted a decade ago, in 2002. I took a trip to California to see some friends and attend a creative writing conference. I flew into an airport more south than my destination of the Mendocino coastal area, San Diego, because I’d always wanted to drive up the Pacific Coast Highway, stopping at local eateries, taking photographs, journaling, spending time at every spot that promised to be – or even hinted at being – worth a closer look. Never before have I reacted to the air and sky and land of a place the way I did while traveling up the winding coastal road from San Diego toward San Francisco for the very first time. It sounds silly, I know, to say this, but what I experienced was the sensation of Home. Not of having found a home in a part of the country I’d never visited before, not that. I felt as if I’d returned home, after having been gone for a long time, and having missed every detail about that home desperately.
I can’t explain how it is that I felt at home in places whose names I didn’t know before reading the signs. Logic doesn’t apply to the sensation of feeling like you were born and grew up in a landscape you’ve never seen with your own eyes or walked across or breathed the air of. Everything and everyone seemed bone-familiar to me, in spite of that being absolutely impossible. Even more, everything I saw had the warmth and weight of being precious, almost sacred, beloved to the point of a beautiful, awesome aching. The kind you feel when a child spontaneously says I love you or your aged parent says Thank you – and the world around you stops for several heartbeats while you marvel at the power of joy to stun you and the sweet, swaying calm that gratitude grows in you.
For the first time in my life, I let myself seriously consider the phenomenon of past lives and decided it was, if not plausible, quite possible. Because I couldn’t find any other reason to explain why mountains, woods and rivers, harbors and coastlines, the blooming-wide faces of snow white lilies and particular patterns of turns in roads felt like the unforgettable refrain to songs I’d been sung since before I even knew how to parse language. And here’s the extra-significant bit: though I’d not been able to ride a bike due to MS-related balance issues for quite some time already, the one idea that refused to go away – no matter how many times I banished it – was, Lordy, I sure would love to come back someday and cycle miles and miles of this place, meted by RPMs (revolutions per minute) instead of MPHs (miles per hour).
So, not long after discovering recumbent trikes (in 2010) and then reclaiming – taking back from the MS MonSter – my ability to ride, I decided that one day soon I would indeed go back to Southern California to pedal north through the landscape that felt like home to me. I planned to do so in the best way I could figure to celebrate that returned means of cycling, by raising funds and awareness for MS. Which makes the 2012 Bike MS in Ventura the third opportunity I’ve had to take action, to triumphantly slash a line of Finished! through this particular dream on my Life List. But I didn’t sign up for the 2012 BIKE MS ride in Ventura. I planned to do it next year, because this past summer has been spent having eye surgeries (for MS-related vision issues) and recovering, which meant no swimming or riding for almost three months. I’m out of shape! And by golly, I thought, I want to be as fit as possible when I live out that dream of cycling in Southern California, the place I can’t forget and to which I feel such a vivid, vital connection. It deserves to be done when I’m at my best, I told myself, this thing deserves to be done properly. I confess, too, that I hoped to look as good as possible when that dream comes to life. Lycra, let’s face it, is not kind to the less-than-in-top-training-shape bodily form. When we envision our dreams being realized (come on, I know I’m not the only one), we see ourselves looking Marvelous! Obviously, without the proper training, with this softer, fleshier lycra-averse body, 2012 wasn’t meant to be the year to go for the dream. Timing, we’re so often told, is everything, and besides, discretionary funds are about as optimal as my riding stamina right now. When I first wished to ride in Southern California those ten years ago, it wasn’t physically possible; when it became possible, I wrote out the words and made the vow in my heart, promised to make the dream a reality. It was settled. Next year, October 2013, I’d do the Bike MS in Ventura. Or so I thought.
Then my friends, just five and seven years older, unexpectedly lost their lives, and the truth arrowed through me, white-hot, unforgiving, undeniable. Waiting until I’m in better shape or until I feel as if I look a bit less foolish in lycra or until the financial toll of travel expenses might take a smaller bite, that’s the kind of waiting, the kind of bet, I cannot afford. I keep hearing Phil Keoghan’s voice in my head, saying now Now NOW. And I know he’s right.
As of yesterday I’m officially registered to ride in Ventura for Bike MS this October, and I’m searching deals for flights and accommodations. Sure, the ride would be easier if I’d not had to take off three months of riding and swimming and working out this summer. Yeah, I might enjoy the ride more if I were a few pounds lighter, had stronger muscles, cut less of a curvacious figure in that unsympathizing lycra. There’s no doubt that the cost of the trip will hurt, and I don’t know a single person in Ventura or anyone else who’s doing the ride. The Bike MS people in the Southern California chapter have yet to get back to me about whether a volunteer might be able to take care of my service dog Luke while I’m cycling.
What if I go all the way there and can’t even ride for lack of a trustworthy Luke-keeper? The hills, jeez louise, the hills! I live in Houston, TX, Land of the Flatter-than-flat. And, lordy, I could go on and on, give you
excuse reason after excuse reason why waiting till next year (or the next one after that) might be the better, wiser, more practical choice. But the opportunity is here, this year, now. I wasn’t able in the past and I may not be able in the future, so I’m reaching out while I’m able to take hold of this opportunity. I will not – I refuse to – wait. Because waiting might very well mean the wasting of my last chance to live this dream.
Most likely, it’s not my last chance. But there’s no guarantee I’ll have another. So this year is it; it’s settled, for real and for good this time. I may not do all of the 150 miles of the route, and I for sure will not be the most svelte & Sports Illustrated-esque rider pedaling out there. I probably won’t raise a jaw-dropping amount of funds, because I’m obviously getting a really late start (though, hint-hint, please feel free to help me if you’re able!). But by golly, I’m going to show up at the Starting Line on October 6th, and, as my Grandma Anna used to say, “Lord willin’ and the creek don’t rise,” I’ll show up again to ride the next day. I will cycle through the place that has carved out an away-home in my heart and mind for the last decade, and no matter how wicked the hills or fierce my fatigue or insistent my pain, it’s a more-than-safe bet that I’ll have a smile on my face the whole darn way, both days. Go ahead, let your money ride on that.
I’m feeling happy at the start of my 48th year. I’m happy I’m alive, especially when Mike and Marie aren’t – and I
want need to send a prayer-hello out to them both, to say: Your lives, you, mattered to me. Your friendship made me better and happier and stronger. This Bike MS ride, in part, is my thank you for who you were and what you gave and how you lived, all of which I celebrate, and will never, ever forget.
I plan to grab up as much happy as I can this year (and the next, and so on). I’m happy to have the restored vision to be able to ride again! I’m happy to’ve come across Phil Keoghan’s book, which happened in the magic way of books arriving just when you need them. Do you know how long it takes to read a book when you’re limited to 10 pages a day? (I wonder if that slow pace is what infused my days of grieving for Mike and Marie with hope and inspiration and the courage I needed) Phil’s philosophy, his remarkable stories and far-flung adventures, his walking (& riding) his own NOW Talk challenged me to reach, so that I won’t have regrets. No Opportunity Wasted? OK, let’s do this!
Do you think they’ll have cake at the Finish Line? Because I think that’s when it’s going to feel the most like an anniversary of the day I first began this wild ride of a happy life, and what says Happy Birthday! better than cake :0)
That’s me with my Aunt Helen, who gave me all kinds of happy and home when I was a girl. She taught me to stick my finger right into the smoothed-pretty frosting, to indulge and to savor, and that good days and good food are made better when you share them. She always used to tell me the best birthday presents don’t come from other people, the really good gifts are the ones you give to yourself, because you know better than anybody what you truly need. It took me almost half of a century, but I finally understand exactly what she meant.