"Neva Div Up"

By Guest Blogger Belinda Williams

When I was asked to tell my story, I thought it would be easy. After all, it’s me we’re talking about. But when it comes down to it, it’s not always easy to let the outside world into one’s life, or explain what things have been like to those who haven’t actually lived through them.

As a youth in the San Francisco Bay Area, I was into everything athletic. I don’t think I had any special abilities; no matter what the sport, I just loved to play. I had good natural strength and balance, but wasn’t the fastest, tallest, or possessed the most endurance. However, I was very competitive. I roller-skated, ran track and cross-country, served volleyball, and even did the steeplechase and some triathlons. Running led to a recruitment trip at Colorado State University: I fell in love with the mountains, and instantly knew I was home.

Injuries put an end to my competitive efforts early on, but since athletics weren’t everything to me, that was ok. I remained active, worked on my studies, changed majors a couple of times, and then took some time off for a paid internship doing genetic research and development in California. I was aiming for graduate school, where I hoped to study medicine.

Everything changed just as I was preparing to take that next step. I’d been back from my internship one semester when one by one, things began to go wrong. At first, it seemed relatively simple… a bad reaction to a spider bite, then hypothyroidism and seemingly mild anemia. It was summer, so I had time to deal with those things… easily treated, right? It was when I developed an odd rash that I realized it wasn’t so simple. That day, my doctor drew another complete blood count, and the next thing I knew, he was calling a hematologist and getting me in that very day for a bone marrow biopsy. I wasn’t just anemic. Everything was low. I had no immune system. I was making the cells, but they weren’t surviving to make it beyond my bone marrow- they weren’t reaching maturation.

That was bad enough, but less than two months later I was on a referral to see a different hematologist at CU Denver and for a blood transfusion (I had about ½ the normal count by then and was ghostly white) when yet another diagnosis was made in addition to the blood disorder. I’d developed collapsing glomerulopathy- a kidney disease usually seen in people with HIV. I didn’t have HIV, though. No one truly knew what I had. I was basically told at the time of diagnosis that the kidney disease had a rate of 100% end stage within 5 years, and recurrence in transplants. I was told recovery was unheard of.

I went home and began treatment. My doctors back in Fort Collins were never so pessimistic, but they didn’t try and give me false hopes either. I began scouring all the research I could find, tracking every change, every treatment. In one year, I spent over 4 months in hospitals, generally with life threatening infections. I tried to keep my studies up- it was all I had left that was normal, but my grades suffered. The University let me go through graduation in December 1999, as I wasn’t expected to survive to complete my studies by then. In the end, I was lucky. Somehow, I recovered. No definitive diagnosis was made of the blood disorder, although we have ideas. My case has also led to some direction for research to take that may help others.

I was finally able to finish my undergrad studies. While not completely well, I was steadily improving and getting stronger. I graduated and began working in research at Johns Hopkins, then George Washington University, taking some graduate courses at GWU using the tuition benefits that came with my job. I began getting active again, inline skating part of my commute, getting off the Metro a few stops early. I have to admit, I LOVED jumping stairs where I could find them, shouting “Skater on the stairs!” to make sure the way was clear. I’m a bit of an adrenaline junkie.

Fast forward twelve years post-diagnosis. I’m now healthy. I’ve completed my pre-clinical studies in medical school, and am looking forward to taking step one of the boards before starting my clinical rotations. There’s always been the constant fear, though, that it could all come back. No one knew just what my kidneys could handle. Until two years ago, I was living in constant fear that this might just be a temporary reprieve.

Two years ago, when my mother suggested I fix up the old bike I’d once done triathlons on as a teen, I took it to my doctors. I was tired of being afraid. I didn’t want to just ride, as my mother had suggested… I wanted to pursue challenges I had once dreamed of as a youth. I wanted to ride up the highest mountains. I wanted prove to myself that my past health doesn’t have to limit me. I aimed for the biggest event I could think of at the time: the Triple Bypass. As an added incentive, I decided that while I was doing this for myself, I’d like to help others as well, and looked into raising funds for the National Kidney Foundation as my chosen charity that first year.

It wasn’t easy. I never expected it to be. I knew I was starting from square one, and that this would be harder than any athletic achievement I’d ever aimed for, and I wasn’t even aiming to win. I just wanted to finish. More than anything, though, I wanted to see just what I could actually do. I did my best to fix up my 1987 vintage Vitus 979, an old aluminum frame literally glued together at the seams, and way too big for me. I had a wheel build done on the old 126mm hub, and modified everything I could to try and make it fit just a little better, climb a little easier. In September 2009 I began to ride.

The first time I hit a steep hill, I had to walk up. That was the only time. There were times I felt like I was practically moving backward, but I rode all the way up every climb after that. No walking, no stopping. By the end of October, I rode up Lookout Mountain for the first time. It took me nearly an hour, but I made it. That was when I discovered just how much fun downhills could be! Unfortunately, in mid-December, I failed to take into account sand left by snow plows. I was once again riding Lookout on an icy day, taking great care in the areas I knew were slick, speeding up as I approached the bottom where it was dry. WHAM! Next thing I know there’s another cyclist bending over me asking of I’m ok. I wasn’t. I needed shoulder surgery.

So, it was surgery, rehab, then back training. With only two months before the Triple, once I was fit to ride, I pushed things even harder. Three weeks later, I was climbing Mount Evans from Echo Lake, the highest paved road in North America: 14,130 ft. elevation at the parking lot, 14260 atop the footpath. It took me 4 hours.

The day of the Triple Bypass, my mom ran SAG (support and gear). It took over 13 hours to ride the 120 miles, with over 10,000 ft. vertical and three passes, the highest at 11990 ft. elevation. Evergreen to Avon, up Juniper pass, down to Idaho Springs, a steady climb to Georgetown, then up Loveland Pass, skirting down into Keystone in mild sleet. I continued over Swan Mountain into torrential downpours through Frisco and Copper Mountain. The sun came out on Vail Pass. I finished about 30 minutes before they stopped serving the barbecue in Avon, just as the heavens exploded with another torrential downpour. I was exhausted, completely bonked and cranky as heck, yet thrilled beyond anything I could have hoped for. I’d done it.

I’ve now ridden the Triple Bypass twice. That first summer, I also rode the Mount Tam Century in California and the Wapiyapi Classic, a fund raiser for childhood cancer, in Aspen. I’ve had two new bicycles since that first season, and have completely given up my car. In 2011, my total ride time for the Triple was just under 10 hours. I wasn’t cranky, but exhilarated. It was a lot easier… and harder. I’d been the victim of a hit and run in mid-March. The bicycle I’d purchased just after Thanksgiving was destroyed. I broke ribs, had a bad concussion, injured my shoulder, and herniated a disk in my neck fairly badly, which is compressing my spinal cord between my 4th and 5th vertebrae. I’m doing physical therapy in hopes of avoiding surgery. I already had one spinal fusion when I was 18 (another bike wreck- don’t ask) and don’t want to go through that again.

I’m back on a bicycle, though! A friend helped me replace the one that was destroyed, and I intend to pay him back. I’m still riding for charities. This year I rode in Elephant Rock for Colorado Neurological Institute with Team CNI and JUC Spokespeople, just 3 weeks after getting back on a bike. For most events, I’m raising funds for Doctors Without Borders, although my efforts are off to a bit of a late start. I’ll also be riding my second Wapiyapi Classic in September.

Last week, I rode in the Bob Cook Memorial Mount Evans Climb. It was the first time I’d ever ridden all the way from Idaho Springs to the very top (without even a stop at Echo Lake): 28 miles and 6500+ ft. vertical in 4.5 hours. I’m happy with how I did. It’s my best time yet for that ride, twelfth time I’ve ridden the mountain, third time this year, and only my fourth time from Idaho Springs. In another week, I’ll be riding in The Copper Triangle. My big challenge will be Deer Creek Challenge on August 21st. I hope to successfully navigate the century and claim the challenge finisher’s jersey.

Next year, I’m already signed up for the Alta Alpina 8 Pass Challenge, a double century in Tahoe with over 20,000 feet vertical. I was supposed to ride it this year, but there was no way I could do it after the hit & run. One day, I’d like to ride in Race Across America, perhaps fill in for my friend Robert, “Robo” Baldino with Team 4 Gone until he’s able to ride it again (he was badly injured when struck by a semi during this year’s race, but is expected to recover). Perhaps one day I’ll ride even farther. I have no limits!

People frequently ask me why I do what I do. I have two answers for them: “Because I can!” and “Why not?” Why survive, when you can live? As a young hero, 5-year-old Coleman Larson used to say as he battled brain cancer, “Neva Div Up!” I never will. Tailwinds to you!

About the author: Belinda Williams is an avid cyclist, riding for charities and involved in numerous cycling advocacy and safety efforts on local, state and national levels. She is also working full time while studying for her medical boards. In August, she will be helping out with stage 6 of the USA Pro Cycling Challenge in Golden, Colorado, and will be a course marshal on the course for stage 2 in Aspen, Colorado. Belinda also writes a column for the Denver newsletter, The Back Fence.