(This is the closing chapter of what will be a book chronicling my "adventures" through life while coping with chronic illness...)
Reflecting on a 15-year journey
It was a feeling I never wanted to end…an elusive victory I needed to savor… It was the night of October 3rd, 2010, and I was still basking in the excitement and deep satisfaction of having finally accomplished a hard-fought goal: completing the 100-mile Tour De Poway bike ride early that Sunday morning. I'm sure anyone would view it as an impressive athletic achievement for any person in his 50s carrying a lot of extra weight, but few people had any idea of the incredible journey behind it…
It was still hard to believe the twists and turns along the road since chronic illness began to dominate my life, way back in the summer of ’96… It seemed so simple then - that all I needed was the right doctor, a quick diagnosis and effective treatment - and I would be back on the bike, full strength. I was encouraged when I started seeing an allergy specialist and he defined my issues as mostly allergy-related. After starting on the prescribed therapy, I was confident that I was on my way back to wellness in short order. If someone had told me then what I would face over the next 15 years, I simply wouldn’t have believed them. Like most people, I viewed health issues as usually black-and-white. If something was wrong, your doctor would order the appropriate tests and the results would tell you what needed to be done. I didn't realize that there were so many people who weren't well and didn’t know exactly why. I was completely unaware of the incredible quest so many patients had to endure in search of a diagnosis…
But as the years went on and wellness continued to elude me, I began to understand how naïve much of the world was about chronic conditions. My doctors would concentrate on treating my known issues individually, assuming they were not related. As each new ailment emerged, it was mostly up to me wonder if there was a common thread that tied it all together, that would address my suspicion that something big was still being missed. I know now that my instincts had been correct. Who would have thought that after diagnosis and treatment of hypothyroidism, severe allergies, asthma, sleep apnea, pituitary failure, celiac/gluten-intolerance and even a large tumor in my neck – that there would be anything else medically undetected? When pituitary failure was diagnosed in 2001, I felt relieved, certain that the underlying issue had finally been discovered. But when the condition was reversed in 2008 and I continued to be almost as sick with a now-functioning pituitary gland, my instincts told me there was still a big piece of the puzzle missing. Then in 2009, celiac was diagnosed and it finally started making sense…
All these years, the underlying condition was an autoimmune disorder. It seemed so simple now. I had an errant immune system that attacked different parts of the body, manifesting itself in various forms – attacking the thyroid and pituitary glands, the lungs in the form of asthma, the sinuses in response to pollens and the small intestine in response to gluten. Year after year, I was trying to hit a moving target, unaware that the supposedly healthy foods containing wheat had been fueling the fire of a raging immune system. Without that knowledge, not even the best doctor had a chance…
A key factor in being able to train enough to complete my big ride had been an awareness that my immune system was constantly overreacting to such obvious triggers as pollens, but also stress, sleep issues and pushing my body hard. Perhaps, the really impressive part of this accomplishment was that I had ridden the bike over 1300 miles in the previous 3 months of training leading up to the 100-miler – almost unbelievable since I never knew day-to-day, if I’d wake up too sick or too fatigued to ride. But after a year of being on a gluten-free diet, it was obvious to me that there was far less inflammation in my body and that my immune system had calmed down a great deal. I was convinced that was the reason that after my usual episodes of fatigue or sickness, my body now rebounded much quicker than it had in recent years. And even more important was that I had learned how to stay encouraged when the odds were against me, and how to start the day with renewed excitement about hopping on the bike when the day before I didn’t even feel up to getting off the couch…
As I headed to bed, I took one last fond glance at my bike. Over the years, that bike had been an important symbol in my life. When I was on my bike, everything seemed okay, even when it wasn’t. As long as I could turn the pedals, I felt empowered, hopeful that I still had a chance… Even during those years off the bike, I never stopped believing that someday I would ride again. What a great feeling to know that I had achieved my big goal of doing a 100-mile ride only hours before and that nothing – not even illness – could ever take that victory away - and that no matter what, I would always have the joy of this day in my heart…
I’m grateful and honored that I’ve been able to share my story with you. My hope is that sharing my journey might have helped you through yours. I still have some big dreams yet to be fulfilled and maybe I’ll get the chance to share those adventures with you as well. But for now I leave you with a sincere wish…that you never give up trying to get well…that regardless of your spiritual perspective you come to believe that there is a purpose for all of the pain… and that even when the challenges of chronic illness are overwhelming, you are still able to find a little joy every day. Always remember, that no matter how many times your dreams may have fallen apart, it’s never too late to give it just one more try. For all you know, your long-awaited turnaround is just around the corner…
I’ve learned a lot in the last 15 years that has helped me cope with chronic illness – and not just how to get through the day, but to mentally and emotionally be in a good place, even when my body wasn’t. Perhaps the thing that helped me the most was my faith. It helped me hold on through those lonely and painful times when it seemed that my life was simply a wasted life…that all the future held for me was more of the same…that I should just forget about getting well… I’d like to think I’m a strong man who can handle any adversity, but perhaps my greatest strength has always been my belief that even when I was by myself, I was never truly alone… It made a big difference knowing that so many people were always praying for me. And I was truly blessed to have had so much support and encouragement from my friends and family. Through it all, I’ve come to believe that God does indeed bring people into our lives to help us through the difficult times…but I also believe that now and then He drops off a tool to make the journey a little easier…and for me, that tool was a bicycle…
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