Thursday, April 1, 2010

Wait, you mean it takes more than guts or partially missing intestines to ride every mile?

Greetings, all. I know you have been looking for updates, but alas, all of the recent changes have made it far more challenging to give them. Thank you for your patience and thank you for your support of this project and both of its riders!

I am (enviously) following Todd on the Spot Tracker, lending support from afar, and also following everyone's comments on Facebook and this blog. Since Saturday, Todd has ridden from Mesa, AZ to Globe, Globe to Safford, AZ, and Safford, AZ to Lordsburg, NM. Today he heads back north toward Silver City, NM.

For my part, here is the short version: it turns out you need lungs, not just guts, to ride. What started as a headcold the day before we left San Diego (annoying but not a big deal) deepened into a chest cold (a big deal but not the end of the world) and then blossomed into a true problem of lung function. When you have a history of pneumonia, medical folks like to make sure that you know just how easy it is to get it again. In Mesa, I visited an urgent care clinic and was diagnosed as bronchitis complicated by asthma, and was advised to seek follow up from my regular doctor. (BTW - I read in the newspaper article that Todd had a cold as well, but he didn't - - just in case you were wondering how I got so lucky to have mine progress while his did not!)

I have had a lot of time to reflect on what getting sick means, especially in the context of this project. It was not unlike my diagnosis with Crohn's disease in some ways. In both cases, I kept going and going and going and achieving each goal I set, until my body made it clear that there was permanent damage on the horizon if I kept going. As with the Crohn's, I realized over the weekend after a couple of days of rest that, in fact, I really was sick and that it was not going to go away on its own. Always an unpleasant realization, and moreso in this context. I have worked for months in planning, training, obtaining sponsor funding, and more. There is a lot riding on this project - - including the respect of many of you who have stated that it means a great deal to you that both people on this team are riding for YOU.

The experience of being sick while the project rolls on makes me once again empathize with every single person out there who wrote or thought, "I would love to do that, but the reality of my disease is that I can't, at least not now." When I read those comments, I was put in mind of how lucky I am indeed. And now, though my lungs are the culprit, I know precisely how you feel.

But even more - - let's all take a moment to think about kids with Crohn's disease and ulcerative colitis. Did you know that Crohn's and colitis can manifest and be diagnosed in a child as young as 3 months old?


I know many people who were diagnosed Crohn's or colitis as children - - at 3 months old, 18 months old, 10 years old, and as young teenagers. It probably also goes without saying those cases of IBD were not "easy" ones. I know their stories, I know how hard those individuals worked to make it through elementary school, let alone high school and college and into the workforce.

Crohn's and colitis do not just cause pain and frequent bathroom stops. They literally ulcerate and inflame the intestines causing not just pain, but profound fatigue. Read the back of our postcard for more information about the diseases and their effects on the body. In children, these diseases have profound impacts not only on a kid's ability to leave the house to go to school, but on their ability to absorb the nutrients needed to grow and develop.

Being sidelined makes me think of the kids out there right now living with Crohn's or colitis. It's not easy as an adult to know that while I am technically capable of riding my bicycle right now, I would do so at great peril to my long term health. How about if you're a young kid facing that? Think about missing school, or having to get all of your classwork done at home because you are too sick to leave your house, or being the kid who is singled out because you cannot do what all the other kids do, missing field trips, or not having a shot to become a "normal" part of what is going on in your community. Learning that "normal" is not all it's cracked up to be is not easy as an adult, let alone as a young child dealing with a disease that is surrounded by silence.

I never had to live through that. I got sick when I was 28. I had already graduated from high school, college, and law school and had started a professional career. I was able to deal with my disease and its repercussions as an adult.

The same is true of this project. I will remain involved because I can choose to do so, even if I end up not being able to pedal another mile toward Florida. I am not at the mercy of Crohn's or colitis in a 9-year old body. Or 1-year old body. Or a 3-month old body. I do not purport to understand those kids' pain.

But experiences like this make me think about them and wish much strength to those kids, their parents, their siblings, and to everyone else who is a part of those kids' lives. Stay positive, folks. I understand that it's tough - I know many families who have had their lives ravaged by Crohn's and colitis. So yeah, maybe this field trip will pass you by, but there are other creative ways of getting involved in things and of finding community. I am learning that yet again by trying to be part of this project while not pedaling.

For the rest of us, especially the healthy adults out there, remember these kids. Please join me in wishing them all the strength and positive energy in the world as they grow and learn to move through a world with a vicious disease that they will need to figure out how to manage until, at some point in the future, a cure is found.

- Jay

P.S. While I wish that my being sick was an April Fool's joke - - alas, it is not. : /


  1. Thank you for this post. It brought tears to my eyes because I was that kid with UC. I was diagnosed when I was 6 and got my permanent ileostomy when I was 8. Childhood was a miserable time for me, with being sick and with adjusting to an ostomy. Unfortunately it didn't get better in high school either. Thankfully, now I'm 34 and pretty happy with life. People got nicer and treatments for my other health problems got better. I feel for all the kids out there who are sick. And just hope that people are nicer to them then the people were to me.

  2. Thank you for sharing the heart-felt thoughts. All of us struggling with autoimmune diseases can identify with your struggle and the struggle of others...and the working through of problems is more important a lesson than sailing through something. There is no "normal" way to do something... and the story will be richer through the telling.

  3. Thanks for sharing this Jay. I feel like I learn something new with every new story and perspective I hear. I really appreciate you doing this - I was not diagnosed as a young child but rather as a young adult. I can only imagine how hard it must be to grow up with this illness.

  4. I have "lived" thru uc then crohns disease as a parent. My kid was the one to grow up without the "normal" childhood taken by not one but both of theese awful diseases. Jay you so poigniantly put your words re being diagnosed as a kid. My kid has another connection to a normal life because of Todd and yourself. Your can do attitude will put you back in the ride even if it is the last mile in FL. Todd you are an awesome friend ..ride safe. Thank you.

  5. If I was granted one wish it would be to make it possible for all the scientists in the world to go through only one month of there lives experiencing all the symtoms and embarasements moments of crohn and colitis deseases. I believe this is what we need. I'm sorry, I do not mean to be rude and I wouldn't wish this to my worst ennemy but just one month wouldn't really hurt and would make a huge difference in our labs, in our misery of suffering most of the time in silent.
    Jay what a nice letter, you couldn't have explained better. Brought some tears to my eyes as if you can say lucky enough to get this awful desease in my fourthies and I can only imagine the pains these poor littles kids
    are going through :(((
    God bless your heart for passing this message of HOPE

    P.S Excuse my orthograph as English is not my main language

  6. How is Jay? On the mend day by day, one day at a time. I am following Todd on Spot and cross referencing an atlas map. Yes a good old fashioned paper map. I see Todd is near Truth or Consequences and Elephant Butte (depends on how you pronounce it) I sooo want to go there and have my photo op 15 minutes of shame:)in front of a sign.Got time for a photo in front of one of theese signs? Yeah right. Seriously Todd what a beautiful ride good for you! Thinking of you Jay......