Are your eyes open?

A couple of years ago I was at the state time trial, getting ready and listening with one ear to the conversations around me. You hear some silly stuff. Some guy was saying, “Well, when you’re getting ready to ride the time trial in the Tour …”

This was over the top, even for a delusional local bike racer. “Who is this dreamer?” I wondered, and looked over to where the voice was coming from.

Fortunately, I’d kept my mouth shut before looking over because the voice was coming from Roy Knickman, a guy who has, you know, ridden the Tour. Twice. As one of the top pro U.S. road racers in the 80’s and 90’s, he rode the Tour and the classics with Greg LeMond, Bernard Hinault, and Andy Hampsten on La Vie Claire; he was also a bronze medalist in the 1984 Olympics.

After his pro career ended, Roy became a firefighter in Paso Robles, where he met Jack Nosco through the community. He and Nosco, a fire captain, rode bikes together from time to time. In 2009, Roy’s son Andreas was diagnosed with bone cancer at age 12. Jack, who had lost his brother Mike in a car collision, came to Roy and said that, with Roy’s blessing, he was going to ask ten of his friends to do an insanely hard ride in the Santa Monicas, and each rider was going to donate a hundred bucks to defray some of the out-of-pocket costs of treatment. The ride would take place on the date that Mike had died to commemorate his life.

The ten riders turned into … 107. Andreas was the sole recipient in that first year and the joint recipient in Year 2. With the money generated by the ride and with more help that came from Andy Hampsten raffling off a trip to benefit Andreas, as well as a golf tournament put on by the Ventura County Fire Department, the proceeds covered all of the Knickmans’ out of pocket medical expenses for ten years. It was extraordinary and it allowed Knickman to take crucial time off work. The medical fund covered everything that insurance didn’t for a decade, crucial since they were undergoing trials at Sloan Kettering in NYC in an attempt to defeat the ravages of the osteosarcoma.

But on top of the cancer, Andreas at the time of diagnosis had been struggling socially because of underlying transgender feelings that were making it difficult to cope and fit in. The Nosco fundraiser was an enormous part of allowing Andreas, now Emma, to take charge of her own life and become the person that she was. The Nosco Ride and fundraiser were huge moments in her life because they showed Emma that people didn’t care about gender issues, that what they cared about was her. In her early teens, unsure about her the place on the planet and how people regarded her, the support of the Nosco Ride gave her a sense of security and love from the external world that had been missing. She has said that cancer, as result of the love and support it has engendered from so many people, probably saved her life.

The ride was designed to be hard and difficult with the idea that people would suffer, if only for a few hours, with the cancer patient recipients, and now people with other illnesses. Emma has been named a recipient for 2019 as well, her third time, and the ride has gone on to help so many more people. As Roy says, “That’s Jack. He has tied the date of his brother’s death to this event so that it’s a personal mission. He’s a giving, energetic human being beyond all words.”

In talking with Roy, I also was able to better grasp how profound the struggle is for patients like Emma. “It’s been such a brutal cancer,” he says. “She’s had eight recurrences of bone cancer; no on survives more than five or six and her resilience has rewritten cancer history. But she’s lost most of her lung function due to metastasis from the bones, and even with a portable oxygen condenser she struggles to walk. She can walk on flat ground somewhat, but not so well when we go to the beach and she has to walk in sand, for example.

“Even with five liters of O2 on demand, the mechanics of walking are so hard. She’s had her femur and knee replaced with metal, but most of the muscle had to be taken out, too, to say nothing of the fact that she’s endured 250 days of chemo. There’s a point where the treatment affects you, the pure quantity of being poisoned that much.

“Pediatric cancer patients are so different, so much tougher. Adults will balk at so much chemo because it’s so brutal. But kids don’t say no because they don’t want to let their parents down. They want to stay alive for their parents and their parents’ efforts. The whole thing is so brutal, it just wears you down. The horrible side of healthcare and the reality of firefighting, it’s so much. 90% of firefighting is medical aid for sick people, suicide, heart attack, homelessness in the river bottom, the 95-year-old husband taking care of the 94-year-old wife in the homeless encampment on the riverbed. It’s an extraordinary accumulation of human misery, all piled on top of your own experiences having to daily combat this aggressive cancer.

“It is something people don’t realize, that no matter how tough and strong you are, people have a certain endurance limit in dealing with this and being exposed to it. And as a friend or someone who wants to help, because the grind is continual and relentless, you eventually pull away because it’s too much. People are so shocked when they see the reality of illness and caring. Even now Emma is trying to find motivation to go to school, to do something in the medical field, but she has to have some kind of hope and normal life despite diminished function, whereas you as the parent have to be a cheerleader and also be realistic.

“Being a Nosco recipient is beyond cool because we’ve depleted everything, and then to come back and be part of the ride again to get Emma some more help is neat because it shows she hasn’t been forgotten, that there are people who care and want to help. She’s only 23.

“The whole thing about the ride is that it has kept its grass roots appeal and grass roots function in that it’s directly for people in the community. The recipients who are healthy enough come out to the ride to meet folks, and you know who and what you are supporting. It’s a local charity taking care of the local community.

“When you are going through any kind of illness, this kind of support is so important. I know a guy whose daughter had an immune deficiency that destroyed her kidneys, and after a month of hospitalization the family wasn’t ready for her discharge but in stepped Nosco to help out. You have to understand that any type of help you get, when someone says here’s a little bit of relief, it makes such a difference. These folks were so grateful, and when you get down to it, the relief has a powerful emotional component that’s so much bigger than the financial. Regardless of what you get, the fact that people acknowledge that you’re in need and going through some shitty things, it’s an emotional thing. Someone has your back and you didn’t even know they were there, it gives you hope, and you need hope to keep propelling you forward when you are constantly overwhelmed.

“The fact that I was a name in the sport that many people knew, that helped the ride get a little interest at its inception. Many friends from the racing community came out because of our friendship; Tilford, Hampsten, and many others, often without me even knowing. This ride also makes people in the cycling community see into this world of cancer and ilness. You know, my view of cancer before Emma got sick, I didn’t see that much of it in the world. What I didn’t realize is that I simply wasn’t opening my eyes. When I took an inventory, every third person I knew had a family member who had died or been stricken. This ride opens your eyes to how the world really is.

“When we’re young, we’re on top of the world moving forward, but having this happen in my early 40’s, it has made me pay attention to the world, and understand that cancer’s prevalent as are so many other ailments right here in my community right here among my friends.

Thanks to Jack Nosco, cyclists are coming out to make this a regular part of their calendar, to support, to donate, to help. It started for Emma, and the foundation has made it one of the largest events in SoCal that is truly a charity to help people in need.”

END


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8 thoughts on “Are your eyes open?”

  1. Seth – great article on Roy and Emma…donated just now…thank you for sharing…

    Tony Morales
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  2. I’m loving reading about the recipients and made a small donation. You got me thinking about Tilford and I went browsing his blog for his recollections of the ride. Good people abound if you just open your eyes to see them.

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