7th June 2018
‘Believe in miracles and cures and healing wells’ – Guest Blog by Deirdre
I was lucky enough to get to Abilene, Kansas this week to catch up with Chris on his third rest day. It was good to see my fella. He looks good and feels good. Yes, he’s pretty tired but his spirits are good. There is no ‘give up’ in my Hubster, none! As I said goodbye to him yesterday morning and watched him cycle off for what was a 104 mile ride day with nearly 5000 ft of climbing, I remembered back to his first 9 mile ride only ten months ago, during which he had to take a break mid-ride to rest! When he signed up to do the ride, he was not a cyclist. However, what he initially lacked in cycling skills and miles in the saddle, he made up for with a huge commitment to train, and great coaching and guidance from the very talented and enthusiastic Julie McKenzie! Yesterday marked the half way point in his big adventure. Since setting out from Manhattan Beach, CA on May 13th Chris has cycled over 1700 miles, passing through California, Arizona, New Mexico, Texas, Oklahoma, Kansas and Missouri. Each day he doesn’t think beyond the ride ahead, and that is probably a good thing, as he still has a long, long way to ride!
For him, the ride has become much, much bigger than a bucket list item. He is riding to be reminded that he still controls his life and most importantly what we chooses to do with his life post his WM diagnosis. He is riding to be reminded that he still has a lot of living ahead of him, regardless of the impact of WM on his life now and in the future. He is riding to be reminded that he will not be defined or constrained by WM, despite the fact that it will try to do both to him! He is riding to be reminded that there is really nothing he cannot do (I already knew that anyway)! Most importantly, he is riding to raise much needed dollars for research into better treatment options and an eventual cure for WM. As a rare/orphan disease, WM receives very little funding because of the small numbers of people who are diagnosed (three in a million). The fantastic news is that at the half way point on the coast to coast ride you have helped Chris raise over $20,000 for research at Mayo Clinic. What is even more astounding is that the $20,000 has come from only 39 donors. All of the money donated on behalf of Chris will be directed to fund a specific research project at Mayo Clinic that is focused on the development of a WM patient-specific vaccine for long-term cure. We picked this particular project after discussions with Chris’s haematologist at Mayo, Dr. Sikander Ailawadhi, given that vaccine technology holds remarkable potential. If you haven’t already donated, you can access the Mayo Clinic giving site via Chris’s blog by clicking on the ‘Donate’ button. No donation is too small (or too large), so please donate whatever you can and spread the word to your friends, family and business colleagues. Every penny we raise together can and will make a difference. I am reminded of something Seamus Heaney once wrote – “Believe that a farther shore is reachable from here. Believe in miracles and cures and healing wells.” He wasn’t writing about a coast to coast cycle ride, nor was he writing about someone living with an incurable cancer. He was writing about hope, which is something we all could use a little bit of in our lives.
A simple thank you really doesn’t adequately capture the extent of Chris’s (and my) gratitude for the support, both in terms of the huge amount of money donated so far but also the many lovely emails and messages that you’ve sent from all across the globe! The generous donations and the very kind words of support and love have motivated Chris each and every single day to get up at 5:30 am, get back on Irma (his bike, in case you haven’t been reading the blog since the early months) and pedal (and sometimes endure) another 70-100 mile ride to the next town. At the start of the ride, he was determined to ride EFI (every foot and inch), and at the half way mark, this remains his goal. Boston is only another 1700 miles away!