Friday, April 23, 2010

The more things change . . . .

Greetings from the viewing stands! I'm finally updating you all now that I have far more concrete information about what is to come for me in this endeavor.

As you all know, I left the route with a severe case of bronchitis that just did not want to get better. I pedaled 3 days with a head cold and 3 days with bronchitis - - and oddly enough, felt great while pedaling. (It only hurt to breathe when I stopped, which seemed kind of odd.)

I knew I was sick, and I knew I needed to rest for an extended period. Thus, I came off the route and home to New York to figure out what was next. As the bronchitis cleared (through a combination of rest and prescriptions), I felt like I could start training to hopefully rejoin the ride from New Orleans to Florida. Unfortunately, on an easy training ride over flat terrain in ideal weather, I discovered that I was in a major, major asthma flare - only the second I have ever had since developing mild asthma in my early 20s. Things went downhill since that easy little ride, and it became clear that I would not be able to train back to the level at which Todd is riding given that he now has 1,500 continuous miles under his belt. In fact, right now, any riding at all is a problem.

I started this project knowing that I risked physical harm - - whenever one gets onto a bicycle, one faces all manner of health and safety risks. I planned for the best, trained hard, and happily accepted those risks in order to fulfill a dream of riding cross-country self-contained. When I got sick, I re-evaluated those risks and, heartbreakingly, I have realized that "risk of harm" has turned to "certainty of harm" given all of the circumstances.

It's going to be a long-ish road back to full lung function. By late May, I hope to be ready to start training for Get Your Guts in Gear's Seattle Ride. For now, I am going on walks and trying to reintroduce shades of cardio activity into my life. I'll get back on my bike, of course. Just not in time to ride into St. Augustine on May 14th.

It's completely heartbreaking. I know for certain that there are some folks out there who are deeply disappointed, and I do not blame you. I, too, am deeply disappointed. This is not how this was supposed to be!

However, it's still true that the more things change, the more they stay the same. And the one thing that seems inevitable is that plans change, and one must constantly adjust.

And so we adjust.

As I wrote initially when I got sick, this is not unlike experiencing a Crohn's flare. You evaluate, adjust, and figure out how to deal with the changes to your health and to your life. It's not "fair" in the way that we'd like things to be fair, but living with a chronic illness never is. We just have to figure out how to meet the new situation.

I will be onsite in New Orleans as Todd arrives at our previously-scheduled visit to Digestive Disease Week - - a gigantic conference of gastroenterologists, and we will hopefully garner additional media attention at that venue. But for the spaces in between, it would be great to have additional folks out there with IBD, ostomies, or CRC. If any of these conditions has touched you or your family (and especially if you are able to speak as someone affected by IBD as a patient, family member, or other caregiver), and you are in East Texas, southern Louisiana, southern Mississippi, southern Alabama, or northern Florida, please get in touch with us so we can get you and your bike on the road with Todd!

Many of you have sent me messages of concern and support. Thank you. I'm gonna be fine; you don't need to worry about that. I recognize the difference between taking a risk and ignoring certainty. That said, here is what we DO need: please continue to support Todd while he and his dad continue their cross-country odyssey, and please continue to support our larger mission for Crohn's, colitis, colorectal cancer, and ostomies, either onsite or from afar.

As always, thank you for reading & following. Now back to the regularly-scheduled awareness- and fund-raising!

- Jay


  1. getting healthy is the top priority. see you soon. harry

  2. Disapointment that you cannot ride and complete your mission... not ever ever disapointed in yourself because you have situations beyond control. You are awesome for even giving birth to the idea of spreading awareness with this bike trip. Jay Good luck with your next adventure.It is quite evident you are riding in spirit with Todd.

  3. Best of luck, Jay! Crohn's attacks are as unpredictable as asthma. Take it easy and then go on the attack again! You and Todd have done much for those of us with Ostomy, Crohn's and Colon Cancers.
    We are beholden to you and admire and support your efforts.

  4. Jay, my thoughts have been with you from the start and I will continue to support you and Todd and your mission to make people aware of Crohn's,Ostomy and Colon Cancers. You take care and hope to see you in Seattle, the best to Todd and hopefully a safe finish..........

  5. Much admiration for your 'guts' to attempt this kind of endeavor. Good for you to drop back and take care of your health. You are still an inspiration to many of us.