How did the #Greatest Team Ever become so legendary?
Like many superhero stories, it doesn’t start with a pleasant beginning.
Truth is, we have been molded for greatness. By the hellish cellular forge of cancer.
Cancer eat parts of us. It consumes us. It inflicts tremendous pain and the scars burn intensely in our hearts and in our bodies.
But what it leaves are our greatest parts. It cuts out our weakness. Now, the godliest parts shine.
We can be stronger.
We can be better.
We can be more caring.
We can take each day for the gift that it is.
We can fight like hell and never give up.
We can help others keep fighting when they want to give up.
We can feel pain in the worst ways and still feel the greatest joy.
We can use our voices to rally others.
We can muster our resources and our attention to the battle.
We can hold our people—in our present and our past—tightly.
We can use our imagination of a better future.
— to fight this.
Stripped of all else, we become the heroes who rise.
#Pelotonia #LegendsUnite #EndCancer
When my wife and I give to charitable causes, we normally ask to be recognized as anonymous supporters, because we believe our giving is not about public recognition.
In my job, my community activities, and in my personal life, I sometimes ask people for money to fundraise for my job, community agencies I support, and personal causes. While many are shy about this, I tend to be direct and share how someone’s support will impact the cause.
In just a couple of days, I will ride in my second Pelotonia and once again, I ask my friends, family and community to support me by donating to this effort that aims to end cancer. Considering the amazing work of this organization, I am optimistic that cancer soon will be history, and there are days where I truly believe that the dollars donated to support my ride will be the very ones to finally stick it to cancer.
For the last two years, I have reached out to my tribe to raise funds to reach at least the minimum fundraising commitment to participate in Pelotonia. I am fortunate to have a generous community of friends who support this effort and I do all I can to thank them. However, there is one friend who I do not know, and this person has anonymously donated $1000 to support my ride for the last two years.
Yes. Two years. $1000 per year. Unknown to me. Each time I have been notified of this donation, I have cried from being so overwhelmed by someone’s generosity. However we know each other and why this person supports me to this level, I do not know. I have tried to guess who this is and while I have a few prospects, I honestly give up. In the end, I do not need to know, but I do need to say thank you. As a result, I write this note to my supporter and hope that they read it.
While I have some guesses, I do not know who you are but I know that you hate cancer as much or perhaps more than I do.
I recognize that anonymity is forever your choice and since I cannot thank you personally, I am doing so here. If we know one another (as I assume we do), let me buy you a beer, coffee or lunch but feel free to keep your secret. You can know in your mind that this is my official thank you without me even knowing that you are my grand anonymous supporter.
This weekend, when I ride and inevitably suffer as cyclists do, I recognize that my pain is small and temporary. I ride for you and all of your friends and family who have confronted cancer. We will beat this disease and I will continue to ride until we do.
I have no words that describe the honor it has been to ride for you. While your donation has helped me exceed my goals each year, the bigger picture is that your support has propelled Pelotonia’s research mission including a recent pledge to fund a new $100M Immuno-Oncology center where cutting-edge, life-saving research will happen every day. Efforts like this will finally bring an end to cancer.
If I see you soon, please give me the opportunity to demonstrate a small gesture of kindness to show my gratitude, and remember that while I may never know your identity, I always ride for you.
Help me find an end to cancer by supporting me at pelotonia.org/dondemaria. (Feel free to give anonymously or let me know who you are — your choice.)
Lewis Dale Jones, 73, passed peacefully shortly before midnight on Thursday, June 13. The official cause will not be cancer. But there is no denying that the effects of cancer, and the side effects and impact of cancer treatments last fall and into winter, hastened his end. Ultimately it was too much for his damaged, frail body to overcome. Though I’m angry at the world — as we likely all are in times of such premature loss, or any loss, I suppose — I am at peace knowing that he is no longer suffering, and that the last words I heard from him were, “Love you guys.” The last words I spoke to him: “Love ya, dad.” He was in and out of it those last six days I spent with him; in his eyes as we said our final goodbyes, I saw a shimmer of knowing.
The rest of his obit follows.
Lew will remain forever the eternally faithful, loving, and beloved husband to Linda Noble Jones; plans were underway to celebrate their 50th wedding anniversary on September 20 of this year. Among the humblest and most caring men you’d ever be likely to meet, he did boast of, and take tremendous pride in, the accomplishments of his two sons and their wives, Brian Noble Jones (Erin Ciarimboli) of Athens, Georgia, and Keith Allen Jones (Jolene Truchan Jones) of Hubbard, Ohio. His sons consider themselves blessed to have had him as a role model in their lives.
Nothing ever made Lew as happy as time spent with his granddaughter and grandson, Kaylin and Brocktyn. He was their Papa Lewie and imbued in them a passion for fishing and time outdoors. They brought immeasurable joy to his final years, and eased the pain of old age.
His only sibling, a younger sister, Virginia (Eugene) Sheridan of Greenville, Pennsylvania, survives him. To her and their family, he was fondly referred to as Dale. He always valued his family and looked forward to fishing trips with Gene.
If you were blessed to have known him, you knew that Lew endured lifelong challenges with chronic pain. He rarely complained about it, but it was evident. Those close to him, perhaps, had the best understanding of the acute pain he endured on a daily basis. But it rarely phased him, and he rarely allowed it to impede him. His sons will forever cherish childhood memories of playing catch in the yard with him, even if for a few minutes, all his body could spare. He gave his family all he had, and more. Despite the pain, it didn’t slow him down if there were fish to be caught, arrowheads to be sought, or a garden to be tended. It’s impossible to count the precious hours Lew spent with his sons and grandchildren in pursuit of the big catch, and we are forever grateful for every last moment we had with him.
From his father he inherited this passion and acumen for fishing as well as gardening and arrowhead hunting. The two grew closer together in their later years, bonding during fishing trips to Pymatuning and Shenango, and the occasional weekend around the Allegheny National Forest.
Perhaps Lew excelled most at working crossword puzzles, a passion he shared with his son, Brian, and niece, Susan E. Mullin. When he completed The New York Times Sunday puzzle, we’d be certain to hear of it to share in his deserved glory. Lew was an avid lifelong reader, no doubt a secret to his crossword success.
And if you knew Lew, you knew how much he loved the Pittsburgh Steelers. He taught his sons a number of choice phrases to describe the Steelers when a play went south — only a few of them appropriate here! Years ago, he held both Steelers and Pitt football season tickets and spent many frenzied weekends with his dear brother-in-law, Charles S. Mullin, cheering on their favorite teams. He loved Charlie as a brother, and relished the time their families spent together camping, fishing, and beachcombing for shark teeth in Myrtle Beach.
Lew had an active church life for many years in Hubbard, Ohio, and, later, in Brookfield, Ohio. He loved his fellows in Christ.
Lew was born September 16, 1945, to Lewis Arnold Jones and Ethel Kardos Jones of Wheatland, Pennsylvania. He graduated proudly from Farrell High School (Pennsylvania) in 1963 and matriculated to Slippery Rock State College (Pennsylvania), earning first his Bachelor’s in 1967 and immediately joined the faculty of Sharpsville Area School District (Pennsylvania). He then earned his Master’s degree from the Teachers College at Slippery Rock in 1970.
His career as an English teacher spanned 32 years; he begrudgingly retired in 1997. His family fondly recalls the countless times former students would approach Mr. Jones out and around the Shenango Valley to offer their gratitude for his teaching style, knowledge, passion, and grace in front of the classroom. He was stern but forgiving and understanding, and regularly referred to as “the best teacher I ever had.” We warmly echo this sentiment.
Lew was preceded in death by his parents; his loving sister-in-law, Judith A. Mullin; his niece and fishing pal, Susan E. Mullin; and his classmate, best friend, and lifelong golfing partner, George Kahl. In lieu of flowers, donations may be made to Family House, 5245 Centre Ave., Pittsburgh, PA 15232, or to Brookfield United Methodist Church, 6591 Grove Street, Brookfield, OH 44403. Or, true to Lew’s spirit, take a moment to appreciate our natural world around us and take a loved one for a walk — or for a round of golf or a few hours by the shore. Be kind to each other, as he was.
Now, let’s get back to writing the obituary for cancer. pelotonia.org/noble
We’re 152 days out from Pelotonia ’19. That’s 21 weeks (and change) to prep for two days of cycling 180 miles across central Ohio. It’s been 210 days since we wrapped up our 200 mile ride with Pelotonia ’18. I’m still stuck in the mental desert between 180 and 200 miles.
I wrote here about the mental exercise of testing myself with a double century ride to wrap up last year’s effort. I reread that entry this week to see how it resonates with me now, removed from that August heat and those hilly (but beautiful and fun) new 20 miles on the front end of the day two route. I think I’m settled on the notion of the 180 miles this year. And I don’t want to scare Pelotonia rookies from the 200 mile route — or make anyone think that riding less than the full 200 makes the experience anything “less.” My hope is that people find a route that allows them to test themselves mentally and physically while still celebrating the lives of cancer survivors, those we’ve lost, and the battle ahead.
It’s the import of the experience that means so much to me. That’s what I want others to find in Pelotonia — or what I believe may help people sign up and overcome their fears. In such an endeavor, one that is both intensely personal but clearly a massive social event, you need to find your own motivation. You need to find your own arrow. Push yourself, embrace and cherish the road ahead…from today until August 4, 2019. Find a route, and join the greatest team ever. And be proud if it’s 25 miles or 200. Every mile counts the same.
I’ve also used this space to share my need to find new motivation. I’m sorry to say that the new motivation arrived this year when I wanted it the least. We’ve been watching my dad deal with the effects of chemotherapy since November. The plan originally was surgery first, to remove the tumor, followed by chemotherapy as a precaution. But immediate surgery was deemed too risky so chemo came first. And it has destroyed him. The past few months have been hell watching him suffer — and I’m lucky enough to be removed by a few states in Georgia. I can only imagine the mental anguish that my mom and brother have endured. Care-giving and worrying. Powerless to ease his pain. And all this pain and suffering by a man who has lived with more physical pain every single day of his life than I would wish upon my worst enemy. (Though, of course, I think cancer is my worst enemy. Our worst enemy. Because it’s agnostic. Cancer doesn’t care. It wants all of us.)
There is light on the horizon. He had surgery this past Friday to remove the tumor. His body was finally recovered enough from the chemo, and all of his organs agreed to work together long enough that the physicians deemed him healthy enough for surgery. It hasn’t been lost on me that he’s the same age as his father was when he went in for surgery, survived a few days, and then his heart gave out. He never left the hospital (alive).
My dad was never going to live to be 100 years old. If I’m being completely honest, I am 100% amazed that he’s lived this long. I hope we can see this blessing — that he is here, and has lived such a full life — and I hope he sees it. (And at the same time, I want him to know that I accept 100% if he wants to stop fighting. It’s his body, and it’s given him hell since day one.) There are so many who love him, who have loved him, this kind, well-wishing man. I can’t imagine myself maintaining the way he has through all of that pain, and on top of it, always putting others first. What a role model.
Writing this is hard, of course. It’s sort of a dry-run at his obituary. That’s what cancer does to us. That’s sickening. So here’s a different take.
Let’s think of this as an obituary for his cancer. It led a brief, evil, insidious life. It did as it pleased. Caused the harm, hurt, and suffering it wished. It was everything that he never was. As of last Friday, it is gone for good.
And he can get back to being his full, selfless self as a husband, father, grandfather (don’t get him started on those grandkids!), and friend.
Need another reason to ride? Let’s write the final obituary for cancer.
Adrienne Amador Oddi
As usual, the Oddis are bringing up the rear in Pelotonia registrations for the Midnight Train.
That said, I’m still hopeful we can recruit a few more folks for our ever-growing team (I see you Jamador!).
Although we may be last among the returners (and even some newbies!) on our team, we’re among the first 1200 or so to register for an event that will host over 8000 riders.
That’s good enough, right?
Alas — I’m tired of “good enough.”
We’re better than “good enough.”
I’m better than “good enough.”
So I registered today, within a few days of the Pelotonia registration going live.
And along with registering, I promise to be more than “good enough.”
I pedal so that doctors and researchers don’t have to settle.
I pedal so that patients continue to receive the highest quality treatment available.
I pedal so that families who are suffering can know that they’ll be getting more than “good enough.”
They’ll be getting the best we have to offer.
They’ll be getting the best I have to offer.
This year, I refuse to be good enough.
I’m going big because too many people are losing their battles against cancer, and I have to do something about it.
I’m going big because this year it’s personal, and I’m tired of cancer’s continued creep closer and closer to home.
I’m going big because it’s the only way to go against cancer. Cancer’s certainly putting up a good fight, and I’m not one to waver in the face of a challenge.
I’m going big…
For EL, SD, LG.
Are you with me?
Exactly seven days ago (as I’m typing), I was six hours and 45 minutes into the second day of a 200 mile bicycle ride through central Ohio. That Sunday, our trek began at 6:51 AM and would end eight hours and 44 minutes later. We spent six hours and 55 minutes actively pedaling on Sunday, after six hours and five minutes on Saturday — a combined moving time of 13 hours over two days on the bike. For the fourth year in a row we completed the longest route Pelotonia offered. 180 miles, 180 miles, 180 miles, and now, 200 miles.
I took mental notes about the ride because I want everyone to experience the magnitude of this powerful annual event. When I sat down to put (metaphorically) pen to paper, I discovered that last year’s reflections accomplished what I had hoped to connote this year.
Still, something was different this time, beyond the extra 20 miles and added elevation incorporated into the new maximum distance route.
I couldn’t get my mind beyond me.
I spent Saturday testing my legs and mind in anticipation of the new challenging course on Sunday. I’ve pedaled Saturday’s roads three times before — we know when to expect suffering, when we can lay it down and push ourselves, where we’ll have breaks for water and snacks. Saturday was a balance between pushing myself to record the best time on those 102 miles and conserving energy for Sunday while constantly calculating the depth of my mental preparation and physical readiness for the next day.
Sixty miles into day one, and I was completely freaked out about the first 20 miles of day two. My mind was eating me alive.
I ride Pelotonia to raise funds for scientific research so that we can end cancer.
I ride to exorcise my pain from the loss of family and friends to cancer.
I ride to celebrate cancer survivors.
I don’t want to ride it thinking about myself.
Pelotonia is a time of reflection for me, both to deal with this pain of loss and to celebrate the strength of my teammates who have overcome cancer. I’ve described it as the apex of my year — all holidays and my birthday rolled up into one weekend. It’s a time of rejuvenation and celebration.
This year, with the extra 20 miles, I couldn’t get my mind off of my fear — off of myself.
Pelotonia is bigger than you. That’s been abundantly clear to me since day one, when we volunteered the first time Pelotonia came to Gambier in 2012.
So I was furious that I couldn’t separate the temporal me from the physical challenge of back-to-back century rides, such that I could allow the event to be the celebration it should be. I want to end cancer, not to think about myself for 200 miles. I neither require nor desire the recognition of cycling 200 miles. I want an end to cancer. Period.
Next year, I’ll return to raise as much money as I can so that we can find an end to all cancers. I’ll happily sign up for the 180 mile route knowing that there exists a longer, more challenging option. I hope I won’t think of myself as a failure or about what I should have done because I could have done it. I answered that question this year: yes, I am capable of cycling 200 miles in two days. But I need my time to honor and celebrate our lost and living family and friends — Pelotonia is their time, and I want to make certain my mind is on them. That’s the therapy I need over those two days to replenish my soul. An ironic, selfish reward, I suppose.
Learn more about Pelotonia, join our team next year, and/or donate to our efforts to end cancer. #OneGoal. #EndCancer.
Charlie Carabello. Cancer Survivor and Cycling Culturalist. Pelotonia Stalwart and Advocate.
At Pelotonia each year, my friend Noble Jones (also our chief Evangelist for our peloton — The Midnight Train from Georgia) asks me to give a little pep talk to our team before setting out on the two-day, 200 mile journey. Pelotonia has a stated single goal: End Cancer. As a survivor it means a lot to me and to my family because this event always reminds me how lucky I am and that only through research (and $$ to fund this research) will we find these cures.
At any rate, this year, I thought I would be proactive and try to write something in advance and really inspire my team. Instead, I just about had a major ‘come apart’ right before we took off — so much for being a bold, fearless leader!
This event brings those emotions of being a survivor, a husband, and a dad all to front of my brain and moves my heart to my throat whenever I try to talk about it. BUT, I still think they are important words for anybody struggling with most any life obstacle and want to share them in full with both my team and anyone else who might choose to read them.
“People talk about leaving it all on the road. That your effort should wring you out.
Don’t do it. There are some things you should carry with you always.
Carry Hope, Love, Friendship, and maybe a little bit of Anger for those we’ve lost to this awful disease. Carry them close to your heart and let them fuel your legs and lungs.
But leave your Fear behind on the road — Push it out through the pedals, through your sweat and your tears.
Fear of failure, fear of recurrence, fear of judgement. Of not being ‘good’ enough or fit enough or strong enough.
That trepidation is nothing compared to being part of this amazing team that uplifts and pushes back against those fears.
So remember, when doubt and dread creep into your mind or your legs, that you are part of the MIDNIGHT TRAIN from GEORGIA.”
Thwack! A resounding thud resonates against the suddenly hollow insides of your body, the realization of what just happened flows from head to toe and from brain to heart. You sit in shock, trying to make sense of what happens next. This is how I imagine receiving news of having cancer. But the Thwack! also represents something I experienced just seven months ago. What follows details how I fell and learned to stand up again. And how that experience led me to fight a disease from which many have not been able to do the same.
A jump shot gone wrong, and in a moment, life is no longer the same. No warning signs. No awkward landing. No change in my warm-up or how hard I played. But I crumbled under the weight of a landing that was one landing too many. I lie on the floor, bewildered. That Thwack! plays over and over again in my head and I stare at my now useless left calf thinking “how did it all come to this?” But there I was, unable to walk nonetheless. A cold and uneventful December 15 changed my life considerably over the months to come.
Emergency room visits, doctor consults, and MRIs only proved the inevitable to be true— I had ruptured my Achilles. However, the tear was in an odd place, the musculotendinous junction. To spare you all the medical jargon, more typical Achilles ruptures occur closer to the heel bone and are usually repaired by surgery. Because of the location of my tear, surgery was not recommended as it would provide little additional benefit but increase the chance for re-rupture (more on that little bit later). So I become friends with a cast for several weeks.
Those weeks were difficult at best. I live in Johnson City, TN with an apartment that can only be accessed by either climbing a hill at 20% grade or a set of stairs with a leg cast and crutches, so just getting inside was an amazing arm and shoulder workout. Every menial task now required five times more effort. Cleaning dishes. Making dinner. Putting on clothes in the morning. Walking. I’m the kind of person that spends free time staying active and playing sports, but I couldn’t even walk. It was a brutal problem to mentally and emotionally process. I felt exhausted, but still full of pent up energy. I felt angry. I felt sad. I felt anxious. And I was facing six to 12 months of healing before beginning to feel normal again — it felt like insanity. It was unacceptable, yet unescapable.
On January 24, I got out of the cast, into a boot, and began physical therapy. In a few sessions, I was walking under my own two feet, albeit with a stride length of about 8 inches. Eventually I shed the boot. I walked everywhere with my 8-inch stride, but felt like I was flying. Co-workers joked because I took five minutes to walk across the 150-foot courtyard, but I didn’t care, I was walking again! I made significant progress in the weeks to follow. I slowly increased my stride length and walked with less of a limp. By the end of February, the therapist and I planned to wean me off therapy and slowly work to light strength-training and low-impact activity, such as cycling and very light jogging. With the mention of cycling, I became overly excited and signed up for Pelotonia for my second year. I felt that I’d have plenty of time to slowly work up to being able to complete the new 200-mile route after successfully completing my first 180 mile ride last year.
A week or so later, things began to turn for the worse. On March 1, the day after a moderate leg workout, I started having pain in my upper calf. It felt like I’d overworked the muscles while lifting. As the next several days passed, I began to swell in my achilles area and walking became increasingly more difficult. A visit to the physical therapist led to a call to the doctor’s office and a recommendation to lay off it for a few weeks until the doctor looked at it. As scheduling doctor’s visits go, I was going to have to wait 4.5 weeks to see him again. So I took it easy and continued working with the physical therapist. I slowly began to feel better, and began working activity as I could back into my life. Then it happened.
Thwack! Two steps into a jog and I was rendered helpless. Another tear. I was
demoralized. All of my progress vanished into thin air with a little bad luck. Only 25–30% of people that don’t have a surgical repair of the Achilles tendon end up with a re-tear, and I was one of the unlucky ones. I was passed around from doctor to doctor at the office as I became the “interesting” case amongst them. The MRI showed the tendon to be fully torn, but I still had slight functional capability in my physical exam, which is uncommon with full “tears.” Surgery was discussed and scheduled. I knew at that moment that my chances at Pelotonia were zilch on a bike.
But I wasn’t going to go out like that. While I could have just raised money as a virtual rider, I wanted to take part in the physical ritual that is Pelotonia weekend. I wanted to show people that I couldn’t be grounded. So I bought a handcycle and remained signed up for the 200-mile ride.
I learned extremely fast how naïve that decision was. My first ride on the handcycle was April 27. I completed 7.9 miles in an hour with 210 feet of climb.
It was brutal.
Every little hill felt like a 15% grade hill to my arms. I was nowhere near ready for 200 miles. I begrudgingly dropped to the 25-mile ride, knowing it would be difficult, but more within my physical limits.
A few weeks later my doctor threw a curveball and reconsidered surgically repairing my tendon. They were again worried that the repair would be too risky for little additional benefit. I was frustrated that I could not get a straight answer on the best path forward for me. I had just spent weeks firmly sure that I’d be having surgery, preparing for the recovery, and suddenly that wasn’t the plan. Eventually a strategy was formed: I would do intense physical therapy to see if my Achilles could stand up to the test. A week later I am impressing the doctor and the therapist at my sessions. With that success, my path was finally set on long-term therapy.
Within two weeks, I learned to walk again with no pain and was doing light workouts on a stationary bike. I consulted my therapist about riding my bicycle and he suggested easing back in to road riding without standing out of the saddle. On May 31, I went on my first bicycle ride in months. I was miserably out of shape and my left leg was noticeably weak, but there was only slight soreness in my calf and no swelling in my Achilles. I started to pick up the frequency of my rides and gained confidence, strength, and endurance each and every week. Since that day in May, I have ridden 469.5 miles in preparation for this year’s 200-mile ride for Pelotonia.
As I look back on 2018, I can’t say it’s been my favorite or most fun year. I do know, however, that I’ve grown more this year than I ever have as a man. I joined The Midnight Train from Georgia last year and rode in Pelotonia because I wanted to make a difference in ways I’d never felt I’d made before. I made new friends on this journey that have shown me the difficulties of living with cancer and the inspiring stories of their lives having survived it. They push on with me and I could not be prouder of them. That is why I ride this year, despite my limitations. If they can be brought to the brink, and still come out to ride and give the way that they do, then how could I not? For that, I thank you, Charlie and Amy; you gave me strength in the times I felt like I had none.
This year, I ride with one bad leg and one good leg. This year, I ride to show my commitment to The Midnight Train from Georgia, and our concerted effort to fight cancer. This year, I ride for Papaw Frank, who lost the battle to lung cancer long ago. This year I ride for Kelly Debusk, who is still fighting her battle with cancer. This year, I ride to show to myself that I’m stronger, mentally and emotionally, than I’d ever measured. This year, I ride with one goal, end cancer.
The Tour de France just concluded - 21 stages of excitement, heartbreak and crashes. While so many people would never watch a single 100-mile bike race, it is thrilling to me, especially when you consider that the Tour is 21 stages over 23 days - a truly grueling suffer-fest where riders power through pain and injury with the distinction of finishing or even more. I love the bike - I love riding my bike - I hate that in order to get a good ride in that I must sacrifice a great deal of time from my family.
We all are busy — that is our badge of honor these days. When someone asks the simple question, the response is often how busy I am with work, my family and my community. I love all of them, with the precious time with my wife and daughters paramount to my happiness.
A few years ago, I rediscovered my bike. My 1993 Trek 820 that I bought in college called me back and I started riding short routes near my house on this incredible workhorse of a cycle. Then I was given a gift that until now, I did not realize how much it would mean to me. In 2011, my birthday gift was a Cannondale CAAD8 — a bike that made the hills here in Athens so much easier than an old steel mountain bike. I love that bike but I hated the logistics of riding it when I had increasingly busy daughters for whom I would sacrifice all of my time.
So, in 2013, I declared that I was a runner and ran my first half marathon. I loved and still love running. It is my quiet time- 30, 60, 90 minutes without my phone or any noise but what is around me. I love the economy of running that in just 30 minutes, my exercise is done. I still missed the bike.
This year, my year of firsts, I have rediscovered my bike with the help of the baddest (and best looking) cycling team, The Midnight Train from Georgia. My goal to END CANCER has brought me back to my bike where I balance both speed and suffering, and connect with the peace that I have been seeking. I ride angry, sad and motivated. I ride even when my legs and mind tell me to stop. You see, it is personal — not just my dad but too many friends are battling (and sometimes losing to) cancer. I found my bike to help and to battle when people can’t.
I go back to the Tour de France- where Phil Liggett, its star commentator comes in. You see, I like to ride by myself. I know it is dangerous but it is MY time and I usually seek solitude when I get into the saddle. So, when I ride and hit difficult times or high speeds, I often hear Tour de France commentator Phil Liggett in my head with his witty banter, inevitably exclaiming that I am winning the polka dot jersey as the king of the mountains. He shares how I have kicked it into another gear and am dominant amongst my competitors.
Recently, I fired Phil (sorry), because I heard a new voice- my father. He was his usual polite self who rarely called me by name, instead referring to me as son, honey or sweetie. At the same time, his commentary did not praise me- it simply told me to keep pushing and to ride through the pain, both mental and physical. He told me to keep my backside on that bike and get up that hill. He told me that no fight can be greater than finishing my race on that bike and finding an end to cancer.
In a couple of days, I ride in my first Pelotonia and have chosen to take on its newest and longest route- 200 miles total, with 100 miles each day. I ride for my dad, I ride for my friends, I ride for people who battle and who have lost and I ride for everyone who struggles with the specter of cancer each day. I ride with the people who helped me rediscover my bike, who helped me see the power in this hunk of aluminum and carbon. I am grateful and I am empowered. Pain will not stand in my way — I will let the voice of my father push me through, ride confidently with my team, and help bring an end to cancer.
Together we can END CANCER!
“Don’t blame the bat, just blame the batter.” I grew up with that maxim. We all know what that means. The athlete should not blame their equipment when they lose or underperform. It is their fault, period.
Recently, on a training ride with the Midnight Train from Georgia (the toughest and best looking peloton ever), I sucked. I was terrible. I was so bad that I don’t know if words could describe it. I was fighting every inch with pain in my right leg and no power or speed as I hit any hill. I’ve never had more moments where I have wanted to quit than those 45 miles on that Sunday. Only the memory and strength of my father kept me going as I pushed along in my “granny gear” at speeds barely fast enough to keep me up on two wheels.
I was spent and discouraged. I kept telling myself that I was I better than this, but could not find another gear. While deep down I thought that this was an anomaly, a part of me was saying that I was not ready for 200 miles of Pelotonia in just a couple of weeks.
During the following week, I purchased new cleats for my shoes. These are the small pieces of plastic that lock into my pedals to ensure efficiency as I pedal, pulling up with one leg when I would push down with the other. Who would think that changing such a small piece would make a difference?
IT DID! My old cleats were worn and broken. I had no efficiency with them and lost almost all of my power. A simple change with an insignificant piece of plastic transformed my performance from a struggle to truly crushing hills the next week on a 55 mile ride with 2600 feet of climb.
Aside from feeling great after that ride, I thought about why I am riding 200 miles over two days with the Midnight Train and 8000 other riders. I ride for my father, but not just him. You see, I ride for everyone who just needs new cleats - who simply need some new equipment or a breakthrough to transform a struggle into a triumph. We are not far away from these things.
I can ride my bike and everyone who is fighting cancer needs us to raise money to fund what seems like an insignificant item that can transform that struggle with cancer into a triumph over it. It is that simple. Every dollar buys a new cleat or funds a scientific discovery— every bit of support turns a struggle into a challenge.
“I’ve got to make every moment count for something.” I tell myself this over and over when I’m waking up at 5AM to ride my turbo trainer. It lives in my garage. Right now, that is a real treat, ’cause the weather in Athens, GA has been hanging out at 75+ percent humidity.
The most recent addition to this ‘pain cave’ is a trainer that outputs power in watts to my bike computer. There are tons of articles you can read about this if you aren’t an ardent cyclist. If you are, you may have your own stance about training and interpreting power data. But for me, I’m looking to be steady and consistent most of the time. Holding the same number of watts for 5 to 10 minutes or even building intensity over that span of time — that is what will help me help my teammates cruise the course for Pelotonia 2018. If you have any doubt of my commitment — see the silliness I engaged in last Saturday during National Cancer Survivor Day weekend: https://www.strava.com/activities/1612946506
Lately, when I really hit that wall that says I can’t do this for much longer, I’ve started visualizing how much time it took when I had to prepare and give myself injections of interferon. For 11 months, every other night, I would prep the needle, clean the skin, make the cocktail of water and dry materials, stick myself and push that plunger.
I make myself slowly go through these steps from my memory vault, all the while trying to maintain the power, the cadence, and the effort for just a few minutes, few seconds longer. Remember the Suffering, Block out the Hurt, Burst through that next performance barrier, and No White flags.
But that focus can wander sometimes. The real focus for me isn’t the hell I’ve been through, but how I can make it less so for others. This is one of the greatest impacts of Pelotonia and why I commit so much time to it. I’ve seen too many of my friends and family devastated by Cancer and Pelotonia is at least one wonderful conduit with which I can strike back. You can check my progress towards this year’s goal here (and maybe help me get a little closer!)
By assuring that every single penny raised goes to research, they are focused on the future. A future where maybe cancer is just another chronic disease or even flat out cured. Ever year I’ve participated in Pelotonia, I’ve received some token from them to extol the notion that I am Living Proof. Cancer can be beaten back, held in check, even destroyed.
My year of firsts began on August 6, the day my father died. I received a morning call like I had for the last week or so from his surgeon who typically would provide me with an update of his post-operative progress for a 10cm T-3 malignant tumor in his colon. At 83, his progress was steady and sure. He hated the hospital and was determined to leave, taking as many slow and measured steps that he could to get out.
That morning was different — I barely said hello when the exasperated surgeon told me that dad was in cardiac arrest and I needed to get there. After rushing to the hospital, I was met by both the surgeon and a hospital chaplain — obviously not a good sign — and told that while the medical staff was doing everything they could, it did not look like he would make it.
With my wife and daughters on the way, the doctors asked to make the call, and sitting in a private waiting room with the chaplain I just met, I then started my year of firsts — day one without my father.
While my mother died more than 22 years before him, I did not feel grief the way I do now. Maybe it is because I am older, have a family and feel a greater sense of my own mortality. Perhaps, it was caused by the close presence of my father in my life, especially since he moved just a few minutes from my home and became deeply involved in our lives including volunteering at my daughters’ school. For whatever reason, it was very different — more intense, sad, painful and unexpected. Don’t get me wrong, I have laughed, smiled and felt my heart warm at times. However, pain and loneliness have won the battle thus far.
So in this year of firsts, the tough moments have triumphed everywhere from the funeral home to my living room, and my car to my office. His presence is missed, and I often am reminded of him in unexpected places causing me to withdraw into a depth of sadness that I have never felt before. I constantly do what it takes to do my job, be a husband and father. I don’t think I have been very good at any of these roles since August but have pushed on, hoping that my grief will subside and I will finally embrace and adapt to my new normal.
This doesn’t mean that there have not been memorable and positive firsts since August as I fight as hard as I can to be the husband, father and individual I strive to be. So many memories have made me and my family smile and laugh. We can’t help but describe delicious food as “so good” just like he would and call each other “honey” or “sweetie” since he called each of us those nicknames. We regularly recall his daily phone calls, his love for eating ribs and his weakness to give my daughters anything they wanted with such great joy. He left us with so much love and endless happy memories but his loss overshadows this right now. We want another phone call and would give anything for one more Friday night family dinner.
A month after dad’s death, my older daughter led my wife, younger daughter and me to the summit of Lookout Mountain in Montreat, NC to witness sunrise as it appeared over the mountains. The beauty and peacefulness of this moment has remained with me. We climbed the mountain in darkness only to be reminded of God’s beautiful creation as the light appeared. That was the first moment I remember when I thought I might feel better some day. I keep waiting for my personal sunrise and know it will come someday.
It only is fitting that the final two days of my year of firsts will be spent cycling 200 miles in Pelotonia- a charity ride where 100% of funds raised by participants are directed to life-saving cancer research. While Dad did not die from cancer, it put him in the hospital and he never left. He did not die from cancer, but it did kill him. So, I ride for him and while I cannot save my father, I want to ensure that we eliminate cancer and help friends who have fought and are fighting today.
Biking 100 miles per day is difficult but it is nothing compared to the pain and uncertainty cancer patients, survivors and their families experience each day. So, I ask anyone reading this to help me end cancer as I conclude my year of firsts with the toughest (and best looking) group of cancer fighting warriors- the Midnight Train from Georgia.
We will push through long summer days on our bikes and weather the pain from cycling long distances to raise money and end the struggle for those with cancer. I cannot think of a more appropriate way to end my year of firsts which has undoubtedly been my most challenging year. I can’t wait to do it, for Dad, my friends who have fought and are fighting cancer now, and all of my teammates who motivate me with their dedication, passion and drive to end cancer.
I’ve been to several weddings lately. One of them was literally the bi-product of Pelotonia (http://pelotonia.org/the-blog/2018/05/01/a-pelotonia-love-story/) and is a truly amazing story of love forged from the time spent riding a bike to fight cancer.
Each time the officiant arrived at the standard vow of accepting one’s partner “In Sickness and in Health,” I found myself overcome with emotions. I think most couples acknowledge that eventually they will have to take on the sickness aspect of this vow. But as part of the broader collection of promises made at your wedding, I think we mainly file it under, “Date To Be Determined in the Future.” Newlyweds tend to be young and healthy when they get together and the thought of perilous illness is not nearly as imminent as forsaking all others or whether they will have enough money for a house or who left the toilet seat up.
But then I look at my own life and say, “Wow man, I’ve lived that one for real.”
If you reference back to my very first post here, you will note it was my wife that noticed my rogue mole turned melanoma. It was her by my side or guarding my back as we fought the brute that is Cancer.
I’ve also come to realize through snippets of conversation I’ve overheard — or that she has shared with me personally — how one-sided that year and half was in terms of stress and strain. It was plain that I had one job — beat cancer. But a household with two young children is a lot of work, especially when (at the time) the chief breadwinner is curled in bed fighting with the after effects of treatment that morning. I don’t understand people who cut and run while their significant other has prolonged illness. I can permit the idea that if it radically changed the person’s personality so that you were not living with the same person you fell in love with, you might need to reconsider that promise. But that is not necessarily “in sickness.” I know I’ve changed some. I tend to be more serious and want control over the uncontrollable (see also my daughter’s room or my garage). But on the whole, we still share the same sort of dreams and goals.
Patients can’t always see what the caregiver is doing behind the scenes. They must possess an amazing duality as they offer positive support and belief in the patient’s survival while simultaneously trying to plan for a negative and life-alternating outcome. It pains me to no end that I was the cause of this strain to her life. But my poet’s soul is reminded of the words of Goethe,
“The sum which two married people owe to one another defies calculation. It is an infinite debt, which can only be discharged through all eternity.”
So whatever it takes, I will continue to try to even up my side of the ledger.
If you follow me here or Strava, Twitter, Instagram, etc. you know I am always posting and applauding people who have rallied to help me raise money for cancer research through Pelotonia. Normally this is where I would make a plea with the reader to support me in my efforts to end cancer. But since May is our anniversary month, I would prefer you honor the caregivers in your life. Their sense of duty and boundless love should take center stage, so this latest ride is for all of you (most of all, Joanna!).
We’ve officially begun preparations for #Pelotonia18 scheduling back-to-back cycling days every weekend we can. As anyone who’s stopped by before to read my entries, you’ll know all about Pelotonia and why I ride. This year Pelotonia has added several different route options in celebration of its 10th year — and $157 million raised to #endcancer. They’ve upped the ante on the longest ride, from 180 to 200 miles. We figured that since cancer remains a reality we can step up and accept the challenge.
I’ve been trying to embrace this challenge. We want to become more fit so that those 200 miles are even more enjoyable. So I don’t have to worry and fill with self-doubt (as I’ve posted about in the past.) Thanks, graduate school, for those ten pounds per annum.
But I don’t want fear to motivate me. And it’s so hard constantly falling back on the sadness of loss. Five years now we’ve been without Aunt Judy and Susan, and I still can’t type their names without crying. It will never make sense to me.
So I’ll pedal on.
And I’ve found new motivation this week. New inspiration. I am so moved by the amazing people in my life.
We have a new team-member this year. Don Demaria. Don’s father was diagnosed with cancer last year in the week leading up to Pelotonia. We added his name to our team banner. Though it wasn’t cancer that finally claimed his life, he didn’t make it a week. Gutting. Devastating.
Don just grinds on the bike and keeps going. He hasn’t been riding much at all lately but he’s back in full force, and he inspires me to push myself. I ride for his father.
Jonathan Amador. The brother of a great friend who also, I’m so fortunate to say, has become a terrific friend to me as well. Having never ridden on a bike, he signed on for a 12+ mile ride Friday evening to see how it felt. He loved it. So of course, the athlete that he is, with the fortitude that he has, joined us for 50 miles on Saturday morning.
It wasn’t easy for him — not that he should have expected it to be. As different activities may do, cycling challenges different muscle groups. It challenges your ability to ignore the pain of sitting on a saddle for hours and hours. It taxes your spirit when you think you’re cruising along just fine and another cyclist tears by you like you were standing still.
But he finished the full 50 miles on his second day ever of road cycling, and finished rather well. He committed, and saw himself to the end. That’s drive.
I found inspiration in his tenacity to pull myself out of bed this morning for another 27 miles. I didn’t want to. I was hoping somebody would offer an excuse — too tired, too sore, too early in the season. But my excuse didn’t come, so instead I rode inspired — by Jonathan’s willingness to embrace a challenge, to power through pain, and at the prospect of many more miles of friendship and fun cycling together as a team.
Dustin Nelson. He joined us for Pelotonia last year, signing up for the max 180 mile route basically sight unseen and with relatively little time on a bike. He crushed the ride, and he made high roller status, raising more than $5,000 alone. He immediately signed up for another go as soon as registration opened.
Unfortunately, he ruptured his Achilles over the winter. Twice, in fact. His response? I’ll do it on a hand-powered bike.
Friday night was his first time out, ever, on a hand bike. He didn’t make it as far as he had hoped, but he made it farther (and further) than I could ever dream possible if I were in his shoes. Dustin knows he has a lot of work ahead of him to make it 200 miles on his new (temporary) wheels, and he may have to change to a shorter route. But he’s undeterred to ride in Pelotonia and be a part of our train. His utter tenacity inspires me.
Doug Ulman and Jill Londino, and all of the Pelotonia team. Their willingness and enthusiasm to go out of their way to visit Athens and support our fundraiser last week meant the world. (Not to mention how wonderful it is to be with people who are seemingly always positive, welcoming, engaging, creative, and inspired.) I was embarrassed that the CEO would see such a small turnout. It didn’t matter to them, and their presence made the event special for all of our friends. Somehow, it made it more real.
We’re a small team, and we’re scrambling every which way we can to come up with different means to meet and exceed our fundraising commitments for Pelotonia. I always have dollar signs in my eyes when it comes to Pelotonia, thinking that I have finally discovered the thing to work for all of us, to knock it out of the park.
We didn’t set any attendance records at Southern Brewing the other night, and we didn’t raise nearly enough to meet any one individual’s commitment. But I think we inspired our community. Because of Doug and Jill. Their engagement with our friends and supporters brought our community even closer in support of our shared mission to end cancer. They helped people see how important this cause is for all of us. And why it means so much to our team.
Meet Doug Ulman and tell me you’re not inspired. I dare you.
Attend Pelotonia in August — as a rider, volunteer, or simply as a spectator, and tell me you’re not inspired. I dare you.
I rode 90 miles this weekend to celebrate the tireless dedication of the entire Pelotonia team — riders, volunteers, administrators, donors, sponsors. You inspire me to ride harder, pedal longer, and to go the literal and figurative extra mile as we seek an end to all cancers. No one is immune to it. The specter of cancer as a reality for each of us is all too real.
I am inspired to change that.
Pelotonia 2017 is now over and in the books. Many folks may know the ride itself occurs in early August but the fundraising actually continues until the first weekend in October.
With this deadline looming, I got yet another life affirming note that the weird Cancer universe likes to send my way from time to time. I had recently re-posted my blog “How the Hell Did I Get Cancer” for a variety reasons on twitter and Facebook. The very next day, I got a notification that I had received a healthy donation to my Pelotonia page. I really had not been actively trying solicit more donations and only sort of recognized the donor’s name.
I wrote back to say, ‘Thanks’ and hope to get a response that jogged my memory enough to remember more fully our connection to each other.
I got that and more.
To be thoughtful towards this person’s privacy, I’ve redacted personally identifying details, but here is the part that made me rock back in my chair.
“I was very sad to have read about all you’d gone through. My Dad passed away nearly 3 years ago due to melanoma cancer that had spread to his brain. He was healthy his entire life and fought hard after his diagnosis… but had succumb to the illness on his 63rd birthday. It was terrible to see the brain scans and have all those meetings with doctors and nurses and hospice workers, not to mention the meds and side effects and his gradual decline in condition.
Needless to say, when I saw your story and how hard you fought personally, I was felt inspired and motivated to contribute.
Way to go, man.”
I think about the fact that I could be that Dad and my kids in the shoes of this donor almost every day. My youngest was so little when I got sick that I think she was shielded from a lot of the possible outcomes of my illness. I am so lucky to have stayed healthy enough that she is now old enough to start asking those hard questions.
And once again, someone else has pointed out to me what a super power being a Cancer survivor is to others. I think I too often take it for granted. I just want to be me — emphasis on the little M. But I guess if I am going to have super powers, I also have to take on the rest of the Spiderman mantra. I do have a great responsibility to my community and will stand up on any soapbox you happen to have to tell me story, share my strength, and make sure we march on to the one goal #endcancer.
So this Last Donation is now my foundation stone for #Pelotonia18.
Cancer is an invasive, insidious, unquenchable disease. What it takes from you differs for each person afflicted by it. But over time, I’ve concluded there are some core elements of being human that it relentlessly attacks.
Self confidence, Peace of mind, Patience, Control — these have all been casualties in one way or another as I’ve pushed through treatment, recovery and being a survivor. They are a big reason I put so much of my self into cycling. By shear force of will, I can take back a lot of those things that the disease tried to take away.
For me, I have the ‘bonus’ of some outward facing and quite permanent signs of my treatment.
The large bald patch on the back left side of my noggin is hard to miss. I’ve begun making the self effacing remark that while Athens, Georgia may be a center for Southeastern Hipster Culture, my unique haircut will NOT be replacing the man-bun anytime soon.
But seriously, do I make people uncomfortable when I take my hat off? What about potential employers or new coworkers? I feel like I always have to be on offense explaining my appearance.
Sometimes I just want to be another face in the crowd. With my cap and helmet on, I can sort of blend in. Yes, my skin is spotty from vitiligo which was a side effect of treatment, and the left side of my neck shows the signs of the 7 hours of surgery, but you have to be really up close to notice. I have no excuses for poor performance except lack of hard work, but my successes are mine, too. There is a pretty solid ‘No Gifts’ policy on group rides with the vaunted Athens Winter Bike League. So while my cycling friends encourage me, they sure as hell are not taking pity for the spotty guy with the odd coiffure.
But a good friend, Pelotonia Midnight Train From Georgia teammate, and fellow survivor reminded me that when we outwardly broadcast our ‘status’, we are reminding those around us that a diagnosis is not a death sentence.
On a recent family vacation, I had a gentleman on the train spot my Pelotonia hat and strike up a conversation about it. I prattled on for 10 minutes (wife and kids — massive eye rolling) about what an amazing experience the ride is and how incredible the impact of the fund raising is on Cancer research.
At the end of it, he called me a ‘hero’ — right there in front of my family. I always cringe at that appellation. I still hold to the idea that when presented with my diagnosis, I really only had two choices — treatment or do nothing. That’s a pretty easy one to make when you have lots more living to do and people to do it for. Heroes throw themselves in harm’s way when they could just as easily sit back in safety.
Then today, I read Doug Ulman’s piece in the Huffington Post about survivorship and what he called the ‘obligation of the cured.’ It re-forged for me the idea that if I am a member of one of the crappiest clubs around, I have the power to make it a positive — not a negative.
Here is what I want to leave you with today. In the not-too-distant future, I’d like to be able to say, “Hi I’m Charlie and I’m the only cancer survivor you know.” That will be because we’ve reached the goal of ending cancer, and we will have no new patients to make survivors. We are making progress, but we need more time and more money.
Please consider a donation to Pelotonia today a step in that direction. Every penny you donate goes to research and gets us closer to that goal. I am closing in on my personal goal for this year’s ride but need your help to reach the line. If you can, share with others. If they need a survivor to talk to, no matter the type of Cancer, I’ll be there. #livingproof
Are we, as individuals, primarily a product of the events to which we’ve uniquely been exposed? Are we, as individuals, defined by the relative impact and perspective of our lived experiences?
Or, is it our individual reactions to potentially life-altering events that define us? Is it the moment of decision, or the decision in the moment? Exposure to experience, or reaction to that experience?
Not nature versus nurture so much as stimulus/response. Cause:effect.
Until you’ve been tested, witnessed, experienced, suffered…until you’ve accomplished, hurdled, exceeded, excelled…how do you imagine yourself responding to failure or success? And how have you been altered, allowed yourself to be changed — how do you, both willfully and unintentionally, (re)define yourself once you’ve encountered failure or success?
Without such experiences, would our counterfactual selves be worse or better than our actual living selves? How would my other me vary from the me that I am?
I acknowledge that I run the risk of treading into the fruitless and dangerous exercise of “What if?” But that’s not why I’m grappling with these words, nor why I’m trying to work through these ideas in a public space such as this.
Nor I am not writing for sympathy.
I’m writing for understanding. Not really for my own understanding of the world, and why things may or may not happen as they do. Not naively and selfishly claiming that I possess the faculties to understand how the universe works as it does.
I want to understand how and why I have allowed events that I’ve experienced to shape me as they have.
Three events in particular bear upon me regularly, and as I move further in time away from them, their weight generally lessens. But their impact is undeniable. And there still remains the occasional day, often out of the blue, where for whatever reason I can’t escape the weight of these events. Those days are rough.
In the summer of 1992 my family was in an automobile accident. It was a terrifying head-on collision. I was the driver. It was not my fault. We were hit by the vehicle of an inebriated driver who decided to pass five cars in a no-passing zone through an intersection. He wasn’t in my lane when I turned, and in fact I had time to accelerate in my lane of travel sufficiently to attest to the fact that he wasn’t in my lane when I left the intersection.
But the deep voices inside my head know that I could have prevented it. I could have waited. I could have been just as cautious as I usually preferred to be, even if it meant light ridicule for being too cautious. To this day, Captain Safety remains my nickname.
But I didn’t wait.
The details of everything involving the impact are irrelevant here. We were lucky/blessed/fortunate that we all survived the accident. My mom physically took the most damage, and was hospitalized.
My damage was to my psyche.
I became afraid to leave the house. I instantly learned to fear vehicles. I used to love the freedom we gained from cars. And now I was petrified.
So, I didn’t leave the house. I wouldn’t leave our property. For many weeks, I ate everything in sight…out of guilt, or comfort, likely both. When I did leave the house, it was to hide in the woods behind our house and smoke. Or to take a baseball bat to an old tree stump. I needed a release. I had harmed my family by a decision I had made, and I couldn’t function with that realization.
I put on more than seventy-five pounds in about three weeks. I destroyed my metabolism. I went from a quasi-capable (not talented, but competitive) athlete, to (what I felt to be) nothing. I hated my mind, and soon, my body. I hated myself, and I hurt.
Nearly a decade later, I awoke on a weekday morning to get ready for work. I lived in the Lower East Side of Manhattan, and my job was in the financial district at the southern tip of the island. There was no hot water in my building. I skipped the cold shower. My contacts wouldn’t sit right in my eyes, so I begrudgingly opted for glasses. If only these were the worst things I’d experience that day.
I’ve never written about that Tuesday. It feels so selfish. I lived. I almost can’t even believe that I experienced it. I remember giving a phone interview to an old friend who worked as a reporter back near home in Pennsylvania a few days after it. I distinctly remember entering this cathartic, documentary state of recollection — the only way I feel is fair for me to fully recount my experience when someone asks me about it — for I what I guess to be about forty-five minutes. Every single detail matters, and deserves attention, or else I haven’t told the full story. Evidently, a few weeks later a cousin who worked for a small Ohio television station came to where I was in Ohio to interview me — where I had moved to, ran to, retreated to. (Or as I often punish myself: moved from, ran from, retreated from). I don’t recall that interview ever happening. My mom told me about it not too long ago when I was trying to track down the newspaper article about my experience…I have no recollection of it whatsoever.
I think I was in shock for several weeks after September 11. If I close my eyes today, I can recount nearly every second of that morning as I experienced it. It takes a long time to play out.
I worked in what was known as the Standard Oil Building, at 26 Broadway. If you’ve ever visited the iconic sculpture of the Wall Street bull, you’ve stood in front of my building.
The first plane must have hit the first tower when I was in the subway. Maybe, and more likely, I was in my building’s elevator at the time of first impact, as I traveled up to the sixteenth floor. That makes the most sense, but I don’t know.
The second plane flew over my head as I stood outside on the patio/roof of the sixteenth floor. I’ve never before nor since seen a plane move so slowly. I know it’s highly unlikely, but I said at the time, and I maintain it now…that plane was so slow, so low, and so close, I swear I could have hit it with a baseball. Like a throw to home from left field…
Even today, right now, I don’t have the energy to recount the rest of my experiences that morning. I’m writing this, and there are tears in my eyes. I’m forty-one years old, this happened nearly 16 years ago, and I can’t. I. Can’t.
I survived. I felt guilty that I escaped, that I didn’t work in the World Trade Center. I felt embarrassed that I no longer wanted to live in New York City. I hated the world, and I hurt.
Susan died four years ago yesterday, on April 22. I tried to have this story finished yesterday, but it was too taxing mentally.
I am amazed to this very day how hard she was able to fight. (I am not amazed that she fought with such tenacity, strength, passion…I am amazed that she was physically capable for fighting for so long.)
The last time we saw her was on her birthday, April 2, 2013. She was busy making plans for her future, but I know she knew. I couldn’t stomach the thought of thinking it at the time, but I knew it, too. She wouldn’t make it to the end of the month.
I hated life, when it inexplicably tears such brilliance away from us.
Though I’m seeking an understanding of my reactions to these events, it would be foolish for me to claim that I’ve found any answers. I have made some mental compromises, or perhaps pushed myself, to arrive at a stasis that does not cripple me.
When the accident arises, I now force myself to think about alternative outcomes on that day. I make myself consider the worser “what if” scenarios that could have played out. What if my dad had been driving, and neither he nor my mom would have been wearing seat belts? What if this accident prevented us from an even larger, fatal incident on the interstate? What if our accident prevented the other driver from killing someone at the crest of the upcoming rise in the road?
I am scarred physically from the dramatic weight gain following the accident. But instead of asking what if I had not sheltered at home and gained so much weight, I concentrate instead on how I know I have changed myself for the better. Because of the accident, I stopped playing basketball and instead acted in the school play. My circle of friends grew and changed considerably, and I grew close to people outside of the basketball and baseball players with whom I had grown up, people I wouldn’t have associated with otherwise because they weren’t cool.
I learned empathy, and sympathy, and the importance of perspective. I discovered a more creative side to myself that I previously was afraid to explore.
I’m still Captain Safety, more so than ever before, but I can live with that. At least I don’t hate myself for it anymore.
Had it not been for the events of 9/11, I feel confident that I would not have left New York City. And I’ll be forever grateful that I did, because of everything I’ve been able to experience as a result.
New York City bears upon you. I’m sure that most cities have a comparable effect, the pressures and constant presence of millions of people trying to live their lives competing for the same resources. But in my experience, it was tremendously difficult to escape these pressures.
And it changes you. New York fundamentally changed who I was. My value system changed…to a capitalist, consume everything, give me more and more, I want it all, defined-by-my-possessions lifestyle. I wanted money, and I judged others by money. I stopped being welcoming and considerate, stopped smiling, and on the subway, I started pushing back. That’s when I knew I was a different person, alienated from family at home and old friends. I knew it, and I didn’t care. Because the consume-everything ethos of the big city told me I was successful. Told me I shouldn’t care…told me to push, and keep pushing.
I would not have changed had something not forced me. I required the magnitude and enormity of 9/11 to wake up. That is self-absorption.
And perhaps that contributed further to the inevitable shock that consumed me for weeks after 9/11…because I was not just processing the attacks upon our country, our way of life and being. I was working through a deep, spiritual re-envisioning of who I was, who I believed myself to be, who I wanted to be, and how I wanted people to know me.
I was freed to be comfortable with who I was. I no longer needed others to affirm my being.
I can’t bring Susan back. None of her friends can, no matter what we would so happily sacrifice, if only we could.
Mourning her loss had its time. Even though she would have despised the fact that people were thinking and talking and remembering about her, we needed the chance to process the prospect of no more Susan. It would, of course, be a complete lie to say that we’re over her. It’s simply untrue, now and as long as those who knew her are still alive, because she had so many plans…and the will, drive, curiosity, engagement, passion, humor, to accomplish them.
It would be easier to retract from the world, angry at this place that somehow would allow a cancer to starve and eventually steal such brilliance. Getting from April 2 until April 22 each of these years since her death is painful. The hope and happiness of a birthday and then the sorrow twenty days later, filled in between with an inescapable despair, because you already know what happens on April 22. What that date means, and always will mean, to you.
My experience of Susan’s death by breast cancer has elicited in me an unyielding desire to fight back against cancer in all its forms. I have found a community of dreamers, visionaries, and leaders who are committed to the very same. And it is this community to which I have dedicated myself in response. I don’t have the scientific knowledge to cure cancer, but I sure as hell can help those who do.
I proudly ride in Pelotonia each year with other dreamers, seeking a cancer-free world. I push myself throughout spring and summer to be ready to cycle 180 miles in August. I push myself to leave no stone unturned in spreading the word about Pelotonia, in being shameless in advancing the cause, and finding support for our team. I push myself physically when we’re on the road — to make myself a better cyclist, a healthier person, but also to celebrate the lives of Susan and Aunt Judy. Because I’m still angry and hurt at this world, but hopeful.
My response has been to allow Pelotonia, and the hope for a cancer-free tomorrow, to consume me.
And I couldn’t be happier.
Henry Amador Oddi
I consider this story a fragment of me. You can change yourself by telling (changing?) your story, right? I’m not even sure if I got the dates or facts right, but this is how I remember it.
As a young boy in our kitchen in Massachusetts, I recall learning what a mastectomy was. Mom showed off the scar, with gruesome pride. This is what I would call leather jacket Jackie phase — she definitely came out of it tougher.
I remember mom teaching us about having a tighter budget now, too. Those surgeries couldn’t have been cheap.
As years went by, from time to time, I’d catch myself wondering what it would be like to not have one of my parents.
Hilton Head Island, 2003. The news was shared that mom’s cancer had come back, now spreading up her spine.
It eventually grew all the way to her brain, collapsing vertebrae and slowly corroding her mental function. My brother Paul came home from college and frequently took her to chemotherapy. He watched the train wreck unfold, frame by frame, for the next three years.
My dad, a physician, was powerless to stop cancer’s long march. The insurance companies refused to pay for the surgeries she needed for her back. Despite proceeding with unfunded aggressive treatments and reconstructive surgery, she became 6 inches shorter, obese, and diabetic.
She was at my high school graduation, but only with great assistance from my family. The last time I saw her, she was lying in bed. Her room reeked of disease. I tried to wake her, but she was too far gone to talk.
Standing next to the bed, I told her how much I loved her, I was going off to college, and that would make her so proud.
I hope she heard me.
I recall August 16, 2006 well. It was the day Jackie died, my first day of college. Dad called me at 7AM, as I was getting ready for school, and shared the news.
That day, it seemed very mechanical when I went up to the professors asking if it was going to be a problem to miss class to go home for a few days. I felt guilty, undeserving of this excuse. It was as if I was outside my brain, observing physical me going through the motions. Just now as I write this, I finally realize why it was so hard for me to skip those classes.
…I got a 4.0 in college, Mom. For you. I really think you’d be proud.
Damn. That just hit me like a sack of bricks. This is going to take a moment to process.
These days, I have photos of her in that leather jacket, and a little sign that hangs on my bathroom wall that reminds me “mom loves you” purchased on one her frequent trips to antique stores (Paul was an unfailing chauffeur) towards the end.
I’ve also saved a place for her in our Peloton.
Some team members will contribute periodically throughout the season as we ramp up to Pelotonia weekend in August.