A MESSAGE FROM Support Belinda running the NYC Marathon a year after her heart surgery!
[november 19, 2021]
hello dear friends,
it was so amazing to receive all of your love before, during, and after the marathon! thank you thank you thank you <3.
thank you, too, for supporting me in raising money towards research on heart defects! together, we’ve raised $3,996 for my charity partner, The Children’s Heart Foundation.
[EDIT: apparently donations are still possible, no idea for how much longer!] TODAY, saturday 11/20, is the last day to donate. please, if you haven’t yet, donate before 11:59pm Eastern. any amount truly appreciated. i am alive today because of advancements in medicine and technology, and ongoing research efforts directly impact my options for future interventions.
curious to know how my marathon went? read on for storytime part 2 with belinda :)
with all my heart,
belinda
ps, again, any amount truly appreciated but here're some incentives :)
* $100 - i’ll bake you cookies
* $250 - i’ll write you a poem or make you a dance (happy to take prompts and requests, some examples)
* $500 - i’ll teach a dance or meditation class, or give a guided meditation
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the morning of the race, waiting at the ferry terminal in staten island before boarding the bus to the start village by the verrazzano bridge, i googled on my phone the official end time of the race. the reception wasn’t good, so i tried, again, on the bus. i was worried i wouldn’t finish in time, and wanted to know what my risk was for being disqualified.
the answer i got then was 7:25 p.m. (it was actually 8:30 p.m.). my pace during my 20-mile run along the actual course race was 13:53/mile, so doing some quick math — 14 minutes/mile times 26 miles — i figured i’d run the marathon in 6 hours. i concluded i’d probably be safe with the 1.5 hour buffer, but i’d never run a marathon before; anything could happen. that unknown occupied an elastically sized black hole in my calculations.
i’d run my half marathon, which i’d treated as a training run going at an easy pace), in 2:50:32 at a pace of 12:56/mile. doubling that got me to 5 hours 40 minutes. but that was also before i got injured. before i stopped running for 3 weeks, after which i took another 3 weeks just to get to 3 miles. which meant i only had 3 weeks to go from 3 miles to 20, with a 1-week taper (or rest) when most training plans build in 3. if i could have simply met my half marathon time, i would have been happy. my secret hope, which i told no one about, was 5 hours 30 minutes — a stretch goal for which i had no strategy, just a stab-in-the-dark hope.
i ended up completing the marathon in 5 hours 14 minutes 28 seconds, for an average pace of 12:00/mile for the 26.2 miles.
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certainly now, nearly two weeks later, but even in the immediate aftermath of the race, i could not believe what i had done. my time exceeded not only my expectation, but my stretch goal hope. i have a hard time believing i’m the same person who ran the marathon two sundays ago. it’s an amazing feeling to do something i didn’t think possible.
i am reminded of the buddhist journey towards awakening (or enlightenment, in the co-opt’ed language of the west). it is my belief that there are many opportunities for awakening before the last of the fetters of greed, hatred, and delusion fully release. it is also my belief that awakening is possible “in this very life,” in the words of the buddhist master Sayadaw U Pandita. one of the challenges for anyone walking this path is maintaining a continuity of practice that refreshes touching into that liberatory space. to be mindful is to remember. to be reminded of our fundamental buddha nature: that of innate goodness.
how might we touch into that space of aspiration for what we don’t presently think possible? of faith that those aspirations are worthy of pursuit? how might we make space for the stuff of dreams, and then actually walk towards them?
courage is an ideal that feels impossible, not least by its associations with valor or heroism. but from the Old French word corage, courage literally means “heart.” etymological sibling to core and creed, courage is acting from our center and belief: letting our heart lead the way.
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as much of a struggle as my injury was for me, it was in some ways refreshingly normal to have been stymied by something as ordinary as an overuse injury. it was never my heart that jeopardized my chances of finishing this race (let alone with any target time).
we don’t always get to pick the challenges that come our way in life, and i can (now, anyway) be grateful for the challenge i was meted. that i was even in a position to struggle was a privilege; worse yet to not have been able to run at all. say, if i’d developed a dangerous arrhythmia. and that wasn’t far afield from the realm of possibility — after all, i received the bombshell news of my leaking valve five weeks from the race, was advised by my old cardiologist to pause training.
ultimately, to have been deprived of the opportunity to struggle would have caused me greater suffering. despite injury, when it made no sense to, i signed up for the race anyway. i swam when i couldn’t run. i paid for a running coach when i couldn’t run. i both knew i couldn’t know whether i’d be able to run the race and i had to assume i would.
i suffered the most when i couldn’t struggle: those first three weeks after my half when i couldn’t run, when i felt powerless. i suffered the deepest because it wasn’t my heart that was holding me back, but my body. that was the bitterest pill that i could not, would not, swallow.
i marvel that i stayed the course. even when my marathon training plan became a find-bodyworkers-to-heal plan, and then a relearn-how-to-swim plan, and then a let’s-downgrade-to-a-run-walk plan.
why? i had the perfectly understandable, normal defense for dropping out of the race because of injury. running coaches straight up refused to work with me, advised i defer to next year, ghosted me entirely after initial consult. it wouldn’t have just been a cop-out excuse; i would have been doing what was “best” for my health.
but this is where my bad, defective heart vetoed. it was not in spite of, but because i had the reigning trump card of them all — open-heart surgery one year ago — that i could not let this bone go.
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i write to you on the one-year anniversary of my open-heart surgery. i had it on thursday, november 19, 2020, exactly one week before thanksgiving.
what is the significance of one year? i don’t know. a year is still too short, too soon.
but it’s one more year we’ve been friends, one more year i’m alive. and for someone who perpetually, insatiably, wants to know, and dig, and interrogate, i can let go, for now, and rest in that knowledge.
here’s to being friends, and here’s to being alive.
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[november 6, 2021]
update! should you wish to follow me during the race, you can track me both via NYRR's website and mobile app ("TCS New York City Marathon"). my bib # is 35376 and i'm starting at 12:00pm ET. here's the course map with mile markers for reference.
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[october 31, 2021]
dear friends,
one year after open-heart surgery for a congenital heart defect, i’m running the NYC Marathon — this sunday 11/7. i have the privilege of running on behalf of The Children’s Heart Foundation, which funds research on congenital heart defects. i’m writing to ask for your support in helping me fundraise the $3,000 minimum this week.
i would be grateful for any amount you’d be willing and able to donate. but here are some added incentives :). also i’m always open to other creative ideas of what i can offer besides what i’ve listed. and if you choose to donate anonymously, just let me know the amount you donated.
* $100 - i’ll bake you cookies
* $250 - i’ll write you a poem or make you a dance (happy to take prompts and requests, some examples)
* $500 - i’ll teach a dance or meditation class, or give a guided meditation
the mission of The Children’s Heart Foundation is to “advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research.” congenital heart defects (CHDs) are common, and there are a lot of us living with it—
* it’s the most common form of birth defect, occurring in almost 1% of births globally; it's as common as autism
* ~40,000 infants in the US are born each year with CHDs, and 2-3 million people in the US are living with CHDs
running this marathon is tremendously meaningful to me, and i am really grateful for your support — and our friendship. should you wish to learn more about this heart/marathon journey, read on for storytimes with belinda :)
with all my heart,
belinda
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this summer, i met a good friend of a good friend for the first time. i decided, after some initial conversation, to entrust her with the knowledge that i’d had surgery last year. her entire demeanor changed and she immediately said, “oh my god, i’m so sorry.” and then again. she said it like i had a death sentence on my head. she said it like i was an unknowable alien. i wasn’t sorry; i was proud — the surgery, and the one before that, means i’m alive and healthy. but she only saw me as a sick person. i don’t have to prove anything to anyone, but i want to — to myself.
what does it mean for me to run the marathon? that i’m not a sick person.
after my surgery, i felt like i no longer had the same body i once had, or any of the capabilities i had taken for granted. i got out of breath climbing the two flights of stairs to my apartment on the third floor. i got winded the times i thought i could run to my local subway stop because i was late. laying awake at night, i heard the roar of my heart muscle contracting and releasing, sounding altogether too loud and too fast.
what does it mean for me to run the marathon? that my heart has recovered from surgery.
for so long, a small part of me had harbored the (baseless) belief that i would die on the operating table when i had the surgery, which had loomed over me for half my lifetime. it may have been one of the reasons i became depressed for the only time in my life. i couldn’t imagine a future beyond a couple years. undertaking any large, ambitious project was irrational; why work on something you might never live to see the fruits of?
what does it mean for me to run the marathon? that i won’t die.
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i was born with tetralogy of fallot (TOF), a constellation of four defects in the heart. the artery carrying blood from my heart to the rest of my body was malpositioned over a hole between the two lower chambers of my heart, causing a mix of deoxygenated blood and oxygenated blood to be pumped out. additionally, my valve through which blood passes from the heart to the lungs was narrow, limiting the amount of blood that could go to my lungs to get oxygenated. as a result, my body wasn’t getting enough oxygen. i was called a “blue baby” — my skin would get a blue or purple tint, especially when i cried.
i had my first surgery at half a year old. termed a “complete repair,” it closed the hole, repositioned the artery, and opened up the valve. but it’s a misnomer — it was a treatment, not a cure. the valve that had previously been narrow now had the opposite problem: being so open as to be nonfunctional, enabling blood to backflow. as a result, my heart had to work extra hard — the increased load caused it to grow; but grow too big, and my heart would start to fail.
i didn’t have to get my second surgery last november, but i chose to. by all metrics and indicators, i didn’t trip the qualifications for intervention; i was one of the healthiest patients my doctors had seen. arriving at the decision to have surgery involved a tremendous amount of research and work, primarily because of the lack of data in a field so young — kids used to die before they could grow up, so keeping adults alive is a new problem. my main two axes of decisions for intervention were when (now or later) and how (via surgery or non-invasive catheter). doctors i consulted recommended nearly every one of the four possible combinations. ultimately, i arrived at the decision to have surgery as an empowered, educated patient — not because a doctor told me to do it, but because i truly believed, with all the resources and research and conversations i’d had, that it was the best thing for my health.
i benefited from numerous privileges, including being born in a developed country, living in a city with top doctors, having health insurance, and having time. i can’t imagine having been an hourly worker dependent on every shift to make my bills; i would have never shown up to any of my diagnostic tests and appointments, much less performed the litany of administrative tasks and emotional labor that is “navigating the healthcare system.”
before, during, and after my surgery, i received love in so many forms by friends near and far: science-backed recovery protocols, photoshoots to document my pre-surgery body, food that whisked me across the world, photos of thick cumulus clouds and floppy dogs, and countless hours of a friend’s voice or attentive companionship.
looking at the arc of medicine and technology and progress, i’ve had the privilege of being born when i was. now, patients with my condition are expected to have a normal life expectancy, no less than anyone else. but natural history studies of uncorrected TOF yields a 3-5% survival rate at age 25; i would have had only a coin’s flip chance of surviving to age 5, and half that to age 10. had i been born even just a few years earlier, i would have had to undergo two surgeries — an initial stent to stabilize the situation, and then the “complete repair” when the heart would have been large enough for surgeons to work on it.
that said, i face a lifetime of surgeries and interventions. while my surgery last year relieved my heart of its increased load from the prior 30+ years, already, my new valve is leaking significantly — kind of like hitting the lottery of bad luck; i'm a far outlier on the bell curve for a valve’s performance and longevity. i’m still feeling totally fine, no change except for the cobalt, chromium, and cow that now live within me. my heart is still better than it was before the surgery — smaller and less leaky. but i’m again undergoing a battery of diagnostic imaging and testing. and so, the journey continues — the desire for certainty and “doneness” revealed as mere illusion; we are only ever always falling into the unknown with absolutely zero purchase on the way down. there are no guarantees and we have zero control.
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in the face of all of that, i choose to exercise the control i do have. i’m choosing to run the NYC Marathon.
let me be clear: i am not an endurance athlete; give me strength and power any day. the night before my surgery, i did five strict yoga push-ups and a strict pull-up in neutral grip. i have never trained for a race; my standard run is no more than three miles. one running coach thought i was crazy for choosing a marathon as my first race. well, you have to start somewhere, and this is where i’m choosing to start.
at the end of may, still testing the waters, i signed up for a base training program but almost immediately, ran into trouble (no pun intended): pain first in my hips, then feet, then knees, and repeat. i spent a lot of time on physical therapy. i didn’t do very much running.
on the fourth of july, i applied to run with the Children’s Heart Foundation, my dream charity partner. but i was still unsure whether i could run the marathon — i wasn’t confident my body wouldn’t fail me, after all the pains from the prior two months. when i did get the offer, i asked for a week’s extension on the deadline to respond. in that time, i completed the first week of a popular training program, including its first long run of 6 miles, and finally said yes.
for a good month and a half, it was smooth sailing. my long runs kept being “the most i’ve ever run,” and that was motivating. i would start at my home in clinton hill, brooklyn and run across the brooklyn bridge, past city hall to the water, and follow the hudson river greenway all the way up to the 90s in the upper west side.
and then, during the latter half of august, i had a 2-week silent meditation retreat in rural washington state. the retreat center was called cloud mountain, perhaps because it was literally located on a mountain, which meant i couldn’t run without knee pain because of the grade; i ended up finding a 0.04 mile (125 paces) stretch of relatively flatter road on which i went back and forth for miles. before that find, i’d run to the end of a country lane and gotten chased by an angry dog whose owner was not the least bit repentant. my metabolism meant i was eating seven meals a day. needless to say, i wasn’t meditating very much, or well. i finally realized that bullheaded belinda had taken over, and stopped running after the first week.
on the last day of the retreat, before my redeye, i decided to run to and from my host’s apartment and wherever google maps designated “downtown portland” — an entirely underwhelming destination with an office building on each corner. it ended up being a total of nine miles. i wasn’t following the training schedule, but i was feeling insecure from and compensating for my time off. after the run, i was cutting my departure to the airport close so i didn’t manage to eat enough, and then nothing was open at the airport at that hour. on the plane, i slept maybe three fitful hours, landing back in new york on friday morning, only to sleep two hours that night before waking up at 4am saturday morning to run a half marathon per my training plan.
bullheaded belinda had returned. i completed the half marathon but injured myself during. after getting foot pain at mile three, i’d pushed through it for the next ten miles. i ran across the finish line, and then promptly collapsed to the ground, the calf cramps i’d been holding at bay finally prevailing.
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for nearly three weeks, i couldn’t run. being in recovery — again — was devastating. i wasn’t capable of doing the things i used to be capable of. and that was exactly how i’d felt after the surgery. signing up for the marathon was supposed to have fixed that; instead, i felt like i was right back where i’d started: not capable, and without control. as the days and weeks marched on, i had to sit in the space of not knowing: when — rather, whether — my body would recover in time.
one of my favorite book titles is: “My Name is Chellis & I’m in Recovery from Western Civilization.” and yes, the quotes are part of the title. from the first page: “just about everyone I know who is serious about personal healing, social change, and ecological rebalancing is in recovery.”
i learned what this marathon meant to me when i realized i might not be able to do it. i thought about everything i had sacrificed: a dance collaboration with a dear friend i had put on pause, the meditation retreat i had compromised. was it all for naught?
as a dancer, i have often bemoaned the way our western culture allows only for our minds but not the whole of our bodies. so much of the time, we’re just walking around as brains on sticks. but somehow, i made the same reductionist error: i thought only of my heart, when ironically it was never my aerobic capacity that stymied me, but the muscle and cartilage and bone of my lower body.
it turned out not running in order to train for a marathon took a lot more time than running to train for a marathon. i had no script to follow, and figuring out what it should be while also doing it while also adjusting for changes over time was so much more work than just running, even if it was for 2+ hours at a time.
i couldn’t run, so i did physical therapy for strength training and swimming for cardio. the swimming wasn’t by choice — but my feet couldn’t handle any other type of cardio. so i relearned how to swim. my first time in the water after seven years, i burned more calories hyperventilating than actually swimming. this was at the public pool in red hook where the width of the olympic pool was nearly twice the length of a standard 25-yard pool, with a lifeguard stationed on either side. i asked one whether you should breathe in with your nose and out through your mouth. smell the rose and blow out the candle — that’s what i’ve been trained as a dancer. no, she replied — it’s the opposite. at the other end, the lifeguard asked me, “are you learning to swim?” no, i thought, i’m trying to train for a fucking marathon. i said yes.
i was so caught up in the doing of recovery that i wasn’t actually doing very much resting. and amidst all that doing, i nearly didn’t have the space to contemplate all the suffering i had created for myself: of comparing my body to a previous version, of clinging to my goal of running the marathon, of not feeling enough — despite running a half marathon, which, as my friend reminded me, the vast majority of the world’s 7+ billion people have not done, with or without an open-heart surgery.
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september 16, the last day to register for the marathon, was the first day i started running again. and even then, i walked more than i ran — for a grand total of 0.81 miles. but still, i signed up for the marathon, only seven weeks away. for the same reason i had injured myself in the first place: pure obstinacy.
the day before, i had my first appointment with a physical therapist who doubled as a running coach, the only one who was willing to work with me. one running coach had flat out refused and said i should defer until next year, and another had ghosted me after an initial consultation.
he put me on a treadmill, stuck some sensors on my shins, and analyzed my form and gait. it turns out i run like a dancer, which isn’t great — you’d never want to see a dancer dance like a runner. i was too upright and rigid, which had the effect of my torso lagging behind my feet when i was running. i also struck the ground with my heel rather than mid-foot. and i placed a lot more weight on one foot than the other. his prescription? to run with a metronome set to a brisk 178 beats per minute, which would even out the weight between my two feet and fix my heel strike (since i wouldn’t have the time to stick my foot so far out in front of me) — thereby addressing the overuse injury of my right foot being in an overstriding, dorsiflexed position (when you pull your toes towards your leg instead of away, as you do whenever you take a step).
i’ve come to believe that the injury was, in some ways, a gift. i was plagued by all kinds of physical pains when i first started running because my form was wrong. i compensated for it by becoming really strong through the physical therapy regimen i did instead of the “base training” i’d signed up for — but it didn’t address the underlying problem. i wouldn’t be surprised if i would have eventually succumbed to an overuse injury anyway. the recovery process has forced me to retrain how i run — even walk — in a more efficient, healthier way. and it has made me confront the parallels between my overstriding form and my overstriving attitude.
i write to you on the heels of having just run 20 miles. i think subconsciously, i couldn’t bring myself to write this appeal until now — with the confidence (as much confidence as anyone could have, anyway) that i might really, actually be able to complete the marathon in a week’s time.
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i am extraordinarily lucky to even have the option to run a marathon. it is not in the realm of reality or possibility for many people with my condition and other congenital heart defects. i once asked a healthcare professional why i am so healthy — topping out on a measure of cardiovascular fitness called VO2 max among adult congenital cardiology patients at two hospital systems. i didn’t get a particularly satisfying answer, because the real answer is “who knows.”
i’d like to think i deserve my health — that i’ve done something to earn it — but i don’t. in an alternate reality, i might be plagued with fainting, seizures, or irregular heartbeats — common symptoms accompanying my condition. there are many good things in my life, and an even longer list of the absence of bad things. the vast majority of them, i do not deserve, i have not earned; i can only be grateful.
and likewise, whether or not i run this marathon doesn’t mean i’m more or less loveable, or worthy, or good. i know that, but i don’t always believe it. in some ways, i wrote this long story for you because i’m trying to earn your donation, your money. because how can we possibly be inherently worthy and deserving, unconditional of any effort or productivity? but it’s true: we are. we already are.
this marathon means so much to me. but i also know, in the grand scheme of things, i already have everything i need. that i am alive — it is a miracle. it is enough.
this marathon will be my celebration. come celebrate with me. because that you are alive — that is a miracle too.
