I Need To Love Cystic Fibrosis – The Disease That’s Killing Me. Every day I woke up was a struggle. Every day was a fight.
My name is Bobby Foster and I live with Cystic Fibrosis (CF)— a genetic disorder that affects the respiratory and digestive systems. CF makes it hard to breathe, hard to digest food, and hard to live. The life expectancy is late 30’s. When I was born in 1994 the life expectancy was less than half of that. Advances in modern medicine have been able to treat the symptoms better, but there is still no cure. Still no way out.
Learning to Fight
I have had to learn how to live with it; to be able to be in this cohabitation with my killer. The difficulty of that has sometimes been enough for me to want to quit this game. But I understand that I have no extra lives. There is no reset button and no cheat codes to fix this glitch. Cystic Fibrosis is just something I have to live with day in and day out. By the time I would go to bed it felt like I had lasted until the 12th round. But, I would not get to rest. My mind would wander knowing that the next day I’d have to wake up and do it all over again. That ritual was one that I wanted to break. I learned over the years that worrying about the future does not cause anything but more worry. I learned that some of us do not have the luxury of wondering what tomorrow will hold in a good light.
Fighting for Life
For some of us being granted another day is a blessing and a curse. Of course I wanted to live, but some days seemed too hard to bear. I had never given consent to being thrown into that ring, but I’d learned to fight nonetheless. What else was there? I didn’t know a life other than waking up in the morning to the sound of a bell signaling me to get into a boxing match. A bell. A loud reminder that the race had begun. A gunshot. I couldn’t lose because second place meant death. I had to be first. I had to get to my pills. I had to get to my workout. I had to get to my doctor’s appointments. I couldn’t be late. I had to manage my symptoms. I had to learn how to live with my symptoms. I had to learn to forgive my symptoms. I had to learn how to be grateful for my symptoms. Because I was tired of fighting. I was tired of running.
Freedom through Forgiveness
But everything in our lives happens for a reason. That mentality I was stuck in— fighting and running – led me to the point where I am at today. I am at a place where I feel freedom from my disorder. It was in those trials that I learned what I needed to get me out of a life sentence.
I’ve learned that the key to living, the key to getting over this suffering, even if it’s momentarily, is gratitude. I’ve learned that you can’t have gratitude until you forgive. I’m not talking about the typical definition of forgiveness. I’m talking about what I saw in an Oprah interview, where she said something along the lines of, ‘forgiveness is when you give up hope that the past could be any different than it is.’ With that view of forgiveness you can look at your present moment differently. Part of my fighting came from judging my current position because of circumstances in my past. Things like how I felt so terrible yesterday that I couldn’t do what needed to get done so today could be a good day bothered me. I notice that when I forgive myself I can see more clearly what’s going on in front of me today instead of carrying that extra baggage of the past. It makes the present day much less of a struggle.
With that forgiveness I can then move onto gratitude. I can be grateful for how my body is functioning in the moment with cystic fibrosis. I can drop the comparison of how it used to work or how I envision it working in the future. I just zoom in and hone into the picture of what is working at the moment. I change my lens from seeing everything failing to seeing everything working. As Gabrielle Bernstein says, “Obstacles are detours in the right direction.” That quote is very important. I used to see my cystic fibrosis as an obstacle that I always had to get over, but now I see it as my body, or the Universe, trying to communicate with me. Yes, because of my chronic illness I need to pay more attention to my body, but it’s a great exercise in showing myself self-care. At times I wish I didn’t have to show myself so much care, but I take that self-care and apply it to other areas of life. It goes into my writing. It goes into my conversations. It goes into my life coaching. The obstacle of cystic fibrosis has detoured me into the direction of empathy.
Winning with Cystic Fibrosis
Yes, some days are still a fight, but I’ve realized that they don’t have to be. It is up to me. I don’t need to fight my CF. One of the ways in which I surrender to that fight is by giving up my expectations of the past and future and focus on the now. I can then embrace what is currently going right and build off of that. Yes, it’s still frustrating and painful, but in the light of forgiveness and gratitude, I can still move forward. I’m no longer stuck in a ring. I am now in a driver’s seat and able to drive myself in any direction I please. My car is infested with a chronic illness and is probably going to need more tune-ups than a healthy car (tire changes, oil changes, medicines, hospital visits) but I’ll still be able to get to my destination if I show it care. If I stop fighting and start embracing I can love. If I can love what’s killing me, I can do anything.