Never Give Up

by Brian Simpson

Living with COPD, Brian's 17 full marathons and one 50k ultramarathon are a testament to his commitment to refuse limits.

Brian

        To me, having strength and being strong is about not giving up. It means getting up in the morning. It’s about doing whatever it is I have to do to stay motivated. It’s about fighting when I want to give up. It’s about going to work when I could give in and go on disability. It’s about proving everyone else wrong. Strength really means doing what everyone else takes for granted: breathing and living.

I have suffered extremely severe chronic asthma most of my life, being prednisone dependent since I was a teenager. If I had chosen to, I wouldn’t have had to work because I qualified for complete and unconditional disability in my early 20’s. Throughout my early to late 20’s I spent 1-2 weeks out of every month in the hospital. I continued this pattern until my early 30’s when I required supplemental oxygen 24/7. I was working clinically as a respiratory therapist while wearing oxygen (imagine having someone come draw your ABG while he was wearing oxygen himself).  Shortly after this point though, I conceded to my disease and accepted complete and unconditional disability.

I remained on disability for approximately 2 years until I felt as if I had no purpose whatsoever. It was very difficult to maintain any level of functionality and sense of self. This is when I began to realize what strength and being strong was really all about. I began a transitional period which was the fight of my life. After 9 months of determination, I returned to work. Initially on a part-time basis, then I was fortunate enough to return full-time. I gradually regained some lung function through exercise and playing a musical instrument.

After returning to work I was given an amazing opportunity: to organize and begin an outpatient pulmonary rehabilitation program. PR has always been a passion of mine. I had been through it as a patient and at that time, there were very few PR programs. In addition to being a respiratory therapist, I have a master’s degree in exercise physiology and both degrees made it much easier for me to begin this program at the facility where I worked. I was truly doing what I loved to do on a full-time basis. Each day, I found myself getting stronger and more dedicated to helping those with chronic lung disease. I gained strength and inspiration from my patients. I began working myself out harder and focusing on my weight loss journey. Having been on very high doses of prednisone most of my life, obesity had become a major issue for me in addition to the lung disease.

In 9 months I had lost a great deal of weight and decided to run my first half-marathon. To this day I am not sure what made me decide on doing that, especially with the knowledge that my FEV-1 was only 25% at the time. I ran that half marathon in 2 hours and 18 minutes (not too bad for bum lungs). After completing that I had a friend suggest I train for and run a full marathon. It was the hardest thing I had ever done (up until that point anyway), and I realized that If I could do that, nothing would be impossible. Over the next 6 years I finished 17 full marathons and one 50k ultramarathon. Most of them weren’t pretty or fast, but I had done them. I learned more about myself in those 6 years than in any other time of my life. 

Shortly after finishing my final two marathons in October 2016, my lung function quickly deteriorated ending with an FEV-1 of 14%. It was at this point that my pulmonologist talked to me and discussed my only option: a double lung transplant. That is hard for many people to understand. Over the years my asthma has led to irreversible airway obstruction and remodeling, and I have progressed to stage IV COPD with bronchiectasis.  At this time, I have begun exploring lung transplantation but I’ve not fully accepted it. I could return to disability or I could continue to work and fight to maintain what functionality I can.

I certainly do look at these last 6 years as the gift of life. I had worked and fought so hard. I finally began living. I was able to hike, travel, kayak and run. I experienced more in those 6 years than in the rest of my life. I certainly never thought I would have to begin fighting again, but I do. I have people tell me all the time that I am “inspirational.” I don’t see it as that, not at all. I just see myself as someone who wants to live and experience life. I have been fortunate enough to let others know that if some crazy guy with stage IV lung disease can run a 4:51:44 marathon – anyone can! I never take anything for granted. I appreciate and am thankful for every day I get to climb another set of stairs, to go to another doctor’s appointment, to work another scheduled shift, and to take another breath.