9 months ago, I was a visually impaired female with Fibromyalgia, crippling bilateral bursitis, debilitating migraines, a thyroid that stopped working, and an adrenal insufficiency. Adding insult to injury, because of all the meds I was on for these issues, plus some 11 eye surgeries, I had gained more than 45 pounds and was terribly depressed. An accident that caused me to break my foot over a year ago, ended up causing me to seek the comfort and safety of exercise in the local YMCA pool, where I reinstated my love of distance swimming. I hadn’t been to a spin class in a few years, and would sneak into the spin room when no one was watching to avoid embarrassment. Then, through the power of social media, my life took a dramatic turn in a direction I truly never saw coming.
I met Caroline Gaynor, the head of Triathlon for Team RWB, a charity that works to help active duty military and veterans reintegrate to civilian life through social and physical activity. I stumbled upon a Facebook page called “Visually Impaired Runners and Guides” for people like me who wanted to get active again after losing their eyesight, and to help me find a running guide near my house. Like a beacon, there she was, less than 40 minutes away in NYC. After inviting me to a triathlon expo and clinic at Columbia University where I met other disabled aspiring triathletes, I hunkered down and became more dedicated in my workouts. I had a purpose again. After so many heartbreaking and painful eye surgeries with mixed results, it was nice to see that I could again feel useful again and not have my body let me down. I slowly crept up the mileage on the treadmill, the time on the spin bike, and the length in the pool. I was really going to give this a shot.
My guide dog and I were attacked by an off leash dog in the early spring, bringing my running to a grinding halt, just as I was starting to train with Achilles International, a disabled triathlon and running group in NYC. I so looked forward to meeting other blind runners each week who had finished dozens of races from 5 miles to marathons and tons of triathlons. I couldn’t believe it was possible until they each shared their stories of triumph and heartbreak and crashing through barriers with their trusted guides. I worked hard in the pool with swim coach Joanne Dondero from the Greenwich Triathlon club, whose zen-like approach to triathlon and relaxed and smooth swimming built my confidence and speed very quickly. Her patience, encouragement, and above and beyond attitude and availability for even the silliest of questions made me realize I had truly met someone special. She helped me with my fear of deep and dark waters, and made me believe I was good at something again for the first time in a very long time.
I competed in my first triathlon with Caroline at my side, laughing, cheerleading and being all-around badass on the course, flying our way down hills past guys on carbon fiber fancy bikes. I ran the hardest race of my life with her and Erica from Achilles at my side on an insanely hot day in June, after battling a bad stomach just hours before the race. I was ready to quit at mile three on a hill when I saw an elderly woman in a wheelchair stuck midway up the hill. People rushed to her aid to give her a push in the blaring sun, and I just KNEW I couldn’t quit. It would be embarrassing. After all, WHAT was my excuse? I’m hot? Tired? miserable? so what! She would give ANYTHING to be actually running up that hill alongside me. I still think about this woman every time I get stuck in my training or have a rough moment in a race. I CAN do this, so I SHOULD do this. Blindness is not pain. It is not crippling. It is none of those things. It is a loss. And then you move on and do whatever it is that you used to do before blindness, except maybe just a little bit differently than you’re used to. I can adapt to anything, I always tell myself. And believe it or not, you do!
The NYC Triathlon was my first Olympic distance triathlon, and I was so honored when two RWB Members from Colorado and Texas agreed to fly out to NY to guide me. Deedee and Heather are an amazing couple who bring joy and warmth to anyone they meet. I was so touched that they would give up their weekend to give me, a total stranger, this gift of friendship and camaraderie. Deedee is a pro mountain biker from Colorado, and Heather an Ironman triathlete and Naval Academy swimmer. They trained hard, and Deedee bravely led me through more than 30 miles of the Hudson, the West Side Highway, and Central Park to an incredible second place finish my first time out at that distance.
I was recruited to a regional USAT Paratriathlon Talent search and training camp, where I got to meet other disabled athletes from every background imaginable. It was here that I met Patty Solimene Collins, a below the knee amputee Lt. Colonel in the US Army who was the current reigning World champion in her division of Paratriathlon. I was star struck, and honored that she came to camp to volunteer as my running guide for the weekend. The camp’s director, Robert Vigorito, invited me to come and compete at the Atlantic City International Sprint Triathlon, which would be the region’s first Paratriathlon Championship race. Patty mentioned that she was from New Jersey, and would happily be my guide. I was floored! TWO Para Athletes competing as one team. Now THAT’S a big deal. So of course, I said yes.
I began training hard to get my run time down, and had an amazing experience at the Challenged Athlete’s Foundation Triathlon Camp in San Diego this August. There, the coaching staff of Mark Sortino, Peter Harsch, and John Murray gave each of us great advice and drills to execute when we got home. I got to meet my mentor, Patricia Walsh, the current reigning National Champion Blind Athlete. Currently Paratriathlon is divided into two categories for the blind, Tri 6A for totally blind Athletes, and Tri 6B for partially sighted athletes. I was so grateful that for now, I would not have to race against this formidable competitor, as her run in a triathlon is up there with the elites. I was excited to be able to hang with her on the bike, and have faster swims, but never in a million years can I run like Patricia. She is a special woman and serious triathlete. As my vision deteriorates, if I can someday sit on the podium beside her, it would be an incredible honor.
With all of these successes and triumphs, there is always a price tag. During my training this spring, it was discovered that I have pretty significant exercise induced asthma. I was put on a steroid inhaler, which was like the silver bullet for my lungs. I went from barely making it through a 5K in 42 minutes, to running 10 minute miles for 6 miles with ease. Glaucoma is a nasty nasty disease. I have steroid implants in both of my eyes to control my Uveitis (an inflammatory eye disease causing damage to the retina from severe scarring). However, both the chronic inflammation, and the long term steroids cause one’s eye pressure to climb dangerously, which leads to glaucoma, which can eventually lead to total blindness due to optic nerve damage, the retina detaching, and the central vein in one’s eye to become ‘shut off’. With the added steroids of an inhaler, my pressure skyrocketed in my remaining sighted eye, and I was faced with immediate surgery two weeks ago.
I had convinced my Glaucoma Specialist to try a less invasive procedure with a cold laser to try and ‘clean up’ the filtration network around the eye that allows one’s eye to regulate its inter ocular pressure or IOP as we patients refer to it. With this, I would have minimal scarring and it could buy me some time until major surgery was needed, when they would perhaps need to put in a significant valve to relieve the high pressure. With the Championships in Atlantic City scheduled for the 15th of September, and the Northeast Paratriathlon Championships scheduled on the 28th, I was convinced this would allow me to finish out my season before I had to address the issue at hand. Well, on the day of the laser procedure last Monday, my Glaucoma had other plans. During the short wait of two weeks to schedule the laser procedure, my IOP had climbed to a dangerously high 45mm Hg. Normal is 10. According to my doctor, I was no longer able to do the laser procedure. I was too far gone. Dr. Tsai at Yale wanted to schedule me for immediate valve surgery the following day.
I was pissed off. After working so hard and battling so many obstacles of finances, broken feet, sprained ankles, and my weight, the last thing I wanted standing in my way was the very eye disease that I had overcome by turning to Paratriathlon. It was a cruel turn of events, and I took a look at Dr. Tsai and made my case for why I should be allowed to compete this past weekend. He shook his head, and made me promise not to go hard or drink too much water or do any bending over and to come in right away if my vision suddenly went dark. Did he ever WATCH a triathlon? Did he know me? Well, I wasn’t about to fill him in on what I was about to do. I knew the surgery would likely blind me, due to my severe scarring problem. I have 1% of vision left in my GOOD eye, and any surgery to that eye will cause severe Keloid Scarring, which caused severe pain for months on end in my right eye, and eventual blindness. Because the surgery itself causes inflammation and scarring, I would be left with little sight, if any, and a lot of pain for months. I begged him to wait until after Montauk, for the Northeast Championships. He left me no other option than to come in two days after my Atlantic City race. I decided I would crush it.
Patty Collins, my guide was herself competing at the World Championships in London on Friday with the US Team. Our race was on Sunday, and she planned to fly into Philadelphia the night before the race to guide me. I panicked as the race got closer, and scurried to line up backup guides, but quickly learned that finding someone tall enough to pilot my friend’s borrowed tandem was going to be a challenge. The race director stepped in and used the power of social media to attract potential guides, who lined up by the dozens to give up their OWN race to be my guide. I was touched beyond belief, and lined up a great woman I met online as the Plan B.
4 days prior to the race, I remembered that I had met the CFO of Thule Roof Racks when I was speaking about Service Dogs at his son’s Boy Scout Troop. He had mentioned that if I ever needed a rack, to please let him know. Borrowing Scott’s rack was certainly an option, but having my own would make life much easier going forward for both myself and my mother who was always worried about the two of us accidentally dropping the heavy bike onto her pristine car roof. With one email, I had a rack on the way for FREE thanks to Mark and the great folks at Thule!
Mom and I headed down to the race, and were happily greeted by familiar faces from the summer Para triathlon camp. We helped Howie Sanborn, a wheelchair triathlete, assemble his racing chair and hand cycle, an irony that wasn’t lost on this visually impaired athlete. I was honored that he let me even touch his gorgeous carbon fiber cycle, let alone assemble it by feel! I got to meet Ironman triathlete, and fellow blind competitor, Miss Tina Ament and her cool German Shepherd Guide Dog from Leader Dogs. She had a beautiful custom carbon tandem from Calfee that left me drooling for my own racing bike. I was applying for a grant at the Challenged Athletes Foundation for my very own bike, and praying that I could get something so special and perfect for me and a smaller female pilot. We palled around with other athletes, checked into the hotel, and attended a mandatory meeting for all the disabled athletes to go over the course and the rules for the following morning. The wind whipped across the field of the transition area where we left our bikes for the night, and I was eager to get into a warm vehicle so we could leave and get some food.
Anxiously during dinner at the Chelsea hotel with Tina and her guide Anne, I checked my phone for news of Patty’s arrival. Her plane had landed and she was in horrible traffic due to the Miss America Pageant that was taking place that weekend in Atlantic City. She was only a few blocks away, but not moving. I began to relax and bid Howie, Tina, Anne, and her sherpa Catherine goodnight, and prepared to greet my weary traveler. Patty arrived with a smile on her face, not looking like I had expected. She appeared rested and ready to tackle the morning’s race. We caught up on the course and the game plan for the morning, and got fast to sleep.
4:45 is an ungodly hour. I cursed the alarm and rolled out of bed, prepared for a morning of my usual intestinal distress and prerace nerves. Surprisingly, I felt pretty darn good. My checklist was in order, and I had made sure to bring my protein shake from home to avoid any unexpected food the morning of such an important race. At the race, we grabbed our gear bags and walked them into transition, huddled beneath down jackets and hooded sweatshirts in the 46 degree temperatures. Patty and I were dreading taking off the layers in order to put on our wetsuits. I managed to convince the race officials to allow Patty and I our ONLY test ride on the tandem, which we clipped into with ease. I had been incredibly nervous about how she would manage with her prosthetic left leg in coordinating the starting and stopping and unclipping, but she handled it better than most of my pilots that had been on tandems before. We would be fine, and my stomach settled again.
At the start, we hunted for the porta potties, and snuggled up with the other freezing para athletes. We were the very first wave of the race, and we were getting cheers and high fives from the age groupers who would be following 15 minutes behind us. The swim was in a channel behind the boardwalk, and the water was still and smooth, with a lovely temperature of 74 degrees. As we jumped up and down for warmth on shore, I was eager to get in and warm up. Patty and I eased into the water and practiced our first tethered swim together. She was tied to the right side of me, and had a great stroke. I was grateful that she was breathing left, so I could see her face with each stroke, and hear her verbal commands when needed. Then it happened.
I hit the first jellyfish with my left hand and leapt vertically out of the water, squealing like a girl. Patty looked at me like I had lost my mind. Actually I was starting to…… There are LOTS of jellyfish where I live in CT. They are mostly the non-stinging little ‘comb jellyfish’ that are the size of a half dollar and slip right through your fingers, causing you no harm. I was hitting some rather significant blobs and starting to become a little unglued. Patty was convinced that I was crazy, and kept telling me that I was mistaken, and that it was in fact seaweed that I had been tangling with. I looked over at Howie, who validated my complaint. This was going to suck, was all I could think. They sang the National Anthem while we treaded water, and I looked around with pride at all the active duty military and wounded veterans that surrounded me in the water. I could not believe at that moment, that this was in fact my real life.
With that, the crowd roared and the gun started. It was time for business. I began fast, then remembered what Tom, Patty, and Howie had all said prior to the race; “Slow is smooth, and smooth is fast”. I focused on long, smooth strokes, with good pull and a full body rotation. I was a little confused about where I was actually going, then came upon a swimmer to my left, who I kept climbing up on by accident. I heard a loud, “HEY!” and realized it was Thomas Lee. Tom’s been working hard on his swim, so I was secretly happy that he was keeping up with me. But then I realized that I was probably taking off too much pace, and got back to it. Bam! I hit another jellyfish. I said a silent, “Yuck” and swam on until getting tangled in the first buoy. I looked for Patty, who was still rounding the turn to my right, and followed. I suddenly hit a sea of jelly blobs, and felt utterly hopeless. I was trying so hard to focus on Coach Joanne’s words, “Tickle their bellies, gently push them out of your way. Remember, you’re in THEIR house, not yours. Be respectful and keep going.” I was practically in tears out of fear of being stung if god forbid one of them turned out to be a giant red one, which I obviously couldn’t see. I spread my fingers wide like a fan to allow them to ‘slip’ through my fingers with the water. That proved an excellent strategy until I hit the Mac Daddy of all the Jellies. He got STUCK in between my fingers, and was draped down my palm and the back of my hand like a silicone breast implant. I lifted my entire hand high out of the water, and launched him over Patty’s head, where he landed with a sickeningly satisfying “plop”. I silently cheered my bravery, and decided to start kicking to the finish. The crowd went wild.
A handler helped us out of the water, and I looked up to see Tom getting out at the same time. It was pretty exciting to see him do so well, but at the same time disappointing to know that I really blew my chance at a sizable lead in the only of the three disciplines in which I truly excelled. A handler helped Patty get her run leg on as I stripped off my wetsuit, and we locked arms to run to transition where our bike awaited us. The pavement to transition was excruciating to run on in freezing cold bare feet. I tried like heck to tread lightly, but the rough concrete felt like an awful form of torture. Patty was lightening fast in getting her bike leg and helmet on, and we jogged the bike to the starting line, and we were off.
The beginning of the course was really tricky, especially for a tandem. The main race area was an old air strip, and we needed to get out onto the main road, and eventually the highway. In our way was a brief ride across sand through narrow winding cones that would prove challenging to an experienced team, let alone one that had little more than 5 minutes of riding together during our mini practice. We couldn’t go too fast, as we would blow the turn, and we couldn’t go too slow, or the bike would get bogged down in the sand, and we would fall over while clipped in. I held my breathe as we carefully navigated the sand and got out to the street. Patty and I hit the gas like our tail was on fire and we were off!
We entered the highway and went through a toll booth. The police and volunteers out on the road were obviously not prepared for us, and some were even texting as we approached. Within a couple of miles, we passed Tom, although I knew that his fast running speed would make quick work of that gap. We caught Hand cyclist Scott, who was cruising up ahead followed by a lead vehicle to keep him safe. Patty was doing an amazing job, and I suddenly realized the irony that the bike was constantly tipping right with each pedal stroke. Then it dawned on me! OF COURSE it would! Between her prosthetic being on her left leg, and my clearly stronger right leg, we were crushing the right-sided pedal strokes, and weaker on the left. I laughed to myself, and focused more attention on my weaker left quadricep. Patty handled the gears like a pro, and we were cruising at 24-26 mph, by far the fastest I had ever traveled on a flat road. She kept repeating our speed to me, but it was hard to reply back to her, due to both my asthma, the cold air, and her sound-proof Aero helmet.
As we neared the end of the course, there were cars and a giant dump truck blocking our lane. They clearly were not prepared for the first cyclist, which was apparently US! Patty and I shouted at the police and the cars, and carefully navigated through the traffic safely, only to land back on the horrific dangerous sand pile. We powered through in a low gear, and managed to finally reach pavement again. We hit the final sprint, and I saw my mom turn around surprised that we were back so fast. Honestly, so was I!
We dismounted, and I unclipped my helmet. Patty stopped the bike and gave me a quick dressing down, telling me I had to put my helmet back on immediately or we would be DQ’d. I fumbled for what seemed like forever, and we trotted the bike into the rack. Within seconds I had my run shoes and visor on. I jogged in place, and caught my breathe as Patty slipped off her bike prosthetic leg, and placed the run leg on. As she looped my tether around her wrist, I took off running, only to fall backwards as Patty stopped suddenly. Something was wrong. Her leg wouldn’t lock into its socket. I struggled to understand what was happening, as I saw Tina and her guide now come into transition, change, then beat us out. We had lost our lead. Poor Patty was becoming unglued. I looked at her and said the same thing she had said to me early that morning. “Slow is smooth, and smooth is fast. Don’t worry about it. It happens. Just take your time.” She was getting more and more frustrated, and finally had to take the entire sock off and retry the prosthetic. With a little extra effort, she clipped in, and we were off. I thought to myself, “It could JUST as easily have been ME, dropping my helmet, or my inhaler. Shit happens. Let’s DO this!”
Patty was determined to close the gap that Tina and Anne had built. They were already running strongly onto the street, headed out for the historic boardwalk. I asked Patty for a time check, to discover that I was running an 8:45 mile. I told her to back off, as I KNEW that I would crap out at that pace given how much effort we had put into the bike. My intention was to run a 9:30, then drop it down after the first mile.
Tina and Anne were only 50 yards in front of us as we hit the boardwalk. Patty asked me the plan. Did I want to start closing the gap now or wait until the halfway mark and do it then? I agreed to wait, and settled into focusing on my form and breathing. Patty is an excellent runner, and was fantastic about fixing my fading form, encouraging me to use my arms, keep my thumbs pointed up, and my head and shoulders up. I looked up to be alarmed that Anne and Tina were now opening up their lead. I had underestimated Tina’s running ability, thinking that a distance runner couldn’t possibly ALSO be fast. Well she was! Shortly thereafter, Tom passed me, and we joked with him about his butt in tri shorts, and told him he was good eye candy to keep us moving! Within minutes the male elite leaders passed us, and we had some fine looking young men to keep our eyes busy and our legs motivated to move a little faster….
We rounded the turn for home at the half way mark, and I worked hard at focusing on using my hips and butt to drive my run home. I was exhaling hard to eliminate the asthma-inducing buildup of Carbon Dioxide that was beginning to rear its ugly head. Then I smelled bacon. I must have said it aloud, as Patty asked me what I had said. At this point, I was becoming breathless. “BACON- I smell BACON!” I yelled to Patty. She laughed at my absurdity in the middle of our big move, and we carried on. She kept up her coaching every couple hundred meters. Having something else to focus on, other than my diminishing oxygen was incredibly empowering and wonderfully distracting. I was becoming discouraged, as Tina’s lead was now nearly 200 meters, and I was starting to realize that I had made my move too little, too late.
When I start to get in my head like this, I started to list the things I had control of. I could control my breathing, I could send power to my glutes, quads and arms. I could be sure I was up on my toes, and that my cadence was keeping my feet under my body with every step. This I could do. I had only a mile to run, and I told myself that I had run faster and further, and that I felt good despite my unsteady breathing. I could totally finish this, AND finish it strong.
We got a lot of praise and cheers from the other competitors on the course as we made our way back into the airfield from the boardwalk, as the age group competitors began their run out. I could see the giant finish chute, and new that there would be an army of supporters there to cheer us home. While I wasn’t going to catch Tina, I could finish with a great deal of pride that we had put it all out there and felt strong and fast up until the very end. I started to smile as we neared the screaming crowd, and grabbed Patty’s hand. We crossed the finish line together, and I gave her the biggest hug I have ever given a person without hurting them!
Waiting for us at the finish line were three class-act folks; Tina and Anne gave us a hug of congratulations, which left me in tears with honor and pride, and Robert Vigorito, a USAT Lifetime Achievement Award Recipient, proudly placed my medal around my neck, giving me a great bear hug and kiss. I couldn’t have been more happy than if it were my wedding day.
Tomorrow at 2pm I am headed to Yale University Hospital for Surgery number 13 on my eyes. While I’ve been afraid for years of this day, when I’m at the end stage of my disease, and the last light is taken from my sight, I can honestly say I’m at peace with it, knowing that this past weekend provided memories for me that will last a lifetime. For Patty to give up attending her OWN silver medal ceremony at the world Championships in London, to immediately then hop a plane to come back and guide me, missing out on her special moment, she had given me mine.
I am uncertain what the future will hold, but I do know that I have made friendships to last a lifetime, met the most inspiring challenged athletes who persevere through pain and personal tragedy to come out and give the course their all, and I have found my own physical and emotional strength to carry me through my journey, knowing that I have a world of supporters there to help me succeed and achieve my dreams. I may be blind, but I will never, ever be afraid, helpless or alone again. Having my Guide Dog Elvis gave me my freedom back. Becoming a triathlete gave me a new life.
God Bless the following folks: Laurie Hollander, David Kuhn, Caroline Gaynor, Patty Collins, John Eng, Deedee Johnson, Heather Purvis, my mom Cathy and stepfather Rick and sister Cindy, Tim McCall, Coach Joanne, Clare Zecher, Wendy Coleman, Thule’s Mark Cohen, Bryon Solberg, Mike Jennings, Scott Nickel, Julie Eiben, and Carol Kana for changing what could have been a disastrous year into the best year of my life.