By any measure, I’m an incredibly lucky person. I grew up playing sports, traveled, and went through school relatively pain free. My medical history as a kid did include a nasty fight with spinal meningitis and I spent a considerable amount of time getting my ankles x-rayed, but I know that’s minor compared to what a child with Juvenile Rheumatoid Arthritis endures. Also, thanks to the hard work of my parents, I was always covered under some type of health insurance plan. I never had to choose between eating dinner and taking my medication. Like I said, I’m an incredibly lucky person.
Thanks to this luck, I got to play a lot of sports. Competing in a soccer match or tennis tournament was what I lived for. The thrill of competition was more addictive than any drug could ever be for me. Like most kids, dreaming of hitting a grand slam to win the World Series, winning Wimbledon with my wicked backhand, scoring the winning goal for the U.S.A. in the World Cup, or skiing in the Olympics as a world-class racer were common growing up. I kept practicing, training, and competing for a better tomorrow so these dreams could become reality!
My reality took an incredible hit in June of 2003 when I fell rock climbing. Now, instead of dreaming about racing in the Olympics, it became remembering previous ski adventures at my local resort, Bogus Basin. Winning Wimbledon became riding a bike for longer than a few minutes. Overcoming the day’s pain became the dream of the moment instead of taking on the world or conquering the new great adventure of life.
As I continued to decline, my dreams continued to crumple too. Even the common dream of winning the $100 million lottery took a backseat to getting through that year without having yet another surgery. Losing the ability to dream about big and exciting adventures is another symptom of this painful disease that does not get mentioned by doctors. Our dreams are a great motivator and source of hope for a better tomorrow. Unfortunately chronic pain and arthritis take great pleasure in destroying these for us.
At my lowest point mentally, my chronic pain and arthritis had almost destroyed me. I had temporarily lost the ability to dream about skiing, riding, climbing or having any great adventure to conquer, for that matter. My dreams, which were once tied with a great hope, diminished to almost nothing. Life became getting through work then hitting a fast food joint on the way home to my couch and pain relievers. That’s not life; that’s coping.
In the hopes of developing better coping skills, I went online in search of patients going through similar issues. I was able to find fellow chronic pain patients who also happened to be insanely cool individuals with whom I would later develop close personal friendships. Like me, their pain was attacking dreams: being a triathlete, a runner, climbing Denali, or just having living a life of meaning and purpose. At their lowest point, dreams of grandeur became just getting through the day. The thrill of competition was replaced with depression and just getting by. Again, just coping through life, which is no way to live.
I’m still not sure why or how, frankly, but all of a sudden we all started dreaming big again. We looked forward to the daily struggle of showering, walking down stairs, or getting through a full workday because that meant today was an improvement over yesterday. Once again, running, becoming a successful triathlete, or skiing the steepest mountain was the dream that we were working towards. As the Navy Seals say, “the only easy day was yesterday”. For us as patients, yesterday was surviving hitting rock bottom, which meant the only way we could go was up.
Once I started to climb back out of the pit of chronic pain, I wanted to become an epatient advocate just like the people that I had met online, who now mean so much to me! Thanks to their support, I was dreaming big again, which was refueled the fighting spirit that arthritis had almost taken from me. Along with wanting to conquer great mountains and hills with my skis or shoes, I wanted to use my skills to help advocate and bring awareness to a disease that is commonly misunderstood by the public.
However, through sharing my patient story and that of those who helped me in my time of need, I’ve received a lot of criticism. There seems to be an element in the arthritis community that takes offense because all of us want to conquer great mountains again. Apparently we are not “real” patients because of these dreams and desires. What they don’t understand is that we share our dreams of becoming a world-class triathlete, a fitness competitor, climbing Denali, or skiing with the best again in order to inspire our fellow patients to get excited and dream big for themselves. Our goal and hope is to help patients realize that our life’s dreams don’t have to be based on our disease progression–we can still dream audaciously!
I fully admit that my fellow advocates and I have a huge ability to dream audaciously. Climbing Denali or becoming a world-class triathlete won’t be easy for sure. There is a very good chance too that some of these dreams might not become reality. As an advocate and patient I fully understand this, and am ready to face the consequence if things do go poorly. However, when things go well, it will be a feeling like no other!
I am not going to stop encouraging others or myself from dreaming big again. I’m going to continue to share stories of people willing to tackle incredible adventures despite their disease. You don’t have to want to climb Denali or ski with the best like me. What you should never lose, though, is that ability to dream like you did when you were a kid. Dream audaciously for you, then work like hell towards that dream!