As a kid normalcy typically consists of going to school and playing sports. It consists of homework and tests; games and practice; running around and getting into trouble. It consists of making friends; of growing up and learning. It consists of graduating high school and going to college. Normalcy as an adult consists of work and responsibilities. It consists of settling down, getting married and starting a family. On some level we all strive for some sort of normalcy. We all want to have friends. We all want to be part of a group. A group of people that have shared interests, values and beliefs. On some level we all want to belong.
Moderation. Moderation is defined as the avoidance of excess or extremes. For twenty some-odd years, moderation was not something I understood. If I was going to do something, I was going to give 110%, no questions asked. Whether it was on the soccer field or hitting the pavement for a long run, in the classroom or at the office it was always full speed ahead. I always wanted to be involved. I always wanted to excel. I always wanted to give my best effort. I always wanted to be the best. For twenty some-odd years, there were enough hours in the day for that to happen. There was enough time to do everything I wanted. There was enough time to take care of myself, play college soccer, and attend classes. There was enough time to take care of myself, go to work for 8-9 hours a day, and train for marathons. Then one day that all changed. Something happened.
Deep breathe in. Deep breathe out. Deep breathe in. Deep breathe out. For most it’s an automatic, mindless action. An action that is required in order for us to live. Awake or asleep. Tired or full of energy. Standing up or sitting down. Deep breathe in. Deep breathe out. Deep breathe in. Deep breathe out. For most, it’s something that is not thought of. The action of breathing. The ability of the lungs to powerfully and easily move oxygen in and out of the body. Deep breathe in. Deep breathe out. Deep breathe in. Deep breathe out. For 30,000 people in the United States – children, adults, boys, girls, women and men – breathing is what our life revolves around. It is one of the first things we think about when we wake up. It is one of the last things we think about before we go to sleep. For 30,000 people in the United States those thoughts are driven by the fact that we have Cystic Fibrosis.
One of the most important things about living with a chronic illness is the ability to take things in stride. The ability to not dwell on bad news for too long. Not let it consume you. That while it’s ok to be vulnerable and occasionally feel bad about what’s going on, it’s even more important to bounce back from it. Because bad news will come. There will undoubtedly be hurdles and challenges and complications. There will be things that you can’t predict. There will be things that don’t make sense. Moments that leave you scratching your head searching and searching for an answer. And if you let these moments get the best of you than the disease is stronger than you are. All the hard work and fighting that has been done to date is for nothing. One incident, one event, one mishap should not keep you down and make you question everything. One of the most important things I’ve learned is the ability to take things in stride—figure out what’s happening, digest it, try to figure out a solution and get back on the horse. Negativity breeds negativity. And while it’s ok to feel bad or sorry for you, it’s even more important to get past it and try to get on the right path. The path that leads to success. The path that leads to achieving what you set out to do and living your life.
This past weekend I attended the Booming Celebration – the Boomer Esiason Foundation's yearly gala. I was honored with the Michael Brennan Courage award, an award given annually to an individual living with Cystic Fibrosis who demonstrates courage, strength and hope – hope that one day all people living with CF can achieve the dreams they set for themselves while living long, fulfilling lives. It may have been me on stage last Saturday, but I received that award because of the courage, strength and support of the people in my life – my parents, my brother, my fiance, my friends, my doctors, my soccer coaches throughout the years, my teachers, and now my colleagues. I do things and live the way I live because I want to. Because that’s the attitude and belief that’s been instilled since day 1. Before I received my award, they showed a brief video entitled, “The Portrait of Hope.” And while I may have received the award, the true “Portrait of Hope” is not just me. It’s everyone in my life. Here is the speech (videos to come soon)...
Progress. A movement forward or toward a place. Progression. The process of developing over a period of time or a continuous and connected series of actions or events. Both words, progress and progression, are always associated with the positive. Synonymous with change and evolution, they are consistently used when we are talking about making something better. Whether its medicine, technology, sports, fashion or art we are always looking to make progress. Looking to make things faster, better and smarter. And with progress and progression comes adaptation. How do we as people change as everything around us changes? Do we accept what is happening? Do we push back and try to hold on to what we know?
A few months ago I was in a video about Cystic Fibrosis. A little bit of me running and then an interview – my thoughts on living with CF, how it’s impacted my life, my friends, family and fiancé, how I manage on a daily basis and what I expect the future to bring. At the end of the interview, they asked if I could change anything about my life, what it would be.
I woke up last Sunday morning with a sense of calmness. While I was excited that my favorite day of the year had arrived, I knew the task in front of me. I wasn’t nervous. I wasn’t anxious. I was relaxed and ready to take on the marathon. I knew exactly what I was getting myself into. I knew that my training had been interrupted enough to the point where it wasn’t going to be pretty. All I could think about was a saying that Kevin Rosenberg engrained in my brain as a sophomore in High School, “failing to prepare is preparing to fail.” No, I didn’t think I was going to fail, but I did know that I hadn’t properly prepared. The marathon is a grueling, challenging distance. It’s a distance that requires proper training. Proper preparation. I knew that I wasn’t going to run my fastest. I knew that at some point in the day my legs were going to hurt and I was going to struggle. I knew that there would be pain. I was just hoping that my legs could hold on for as long as they possibly could.
Four weeks ago I was admitted to the hospital. Feeling the effects of all the common symptoms of a CF exacerbation, it was time for a “tune-up.” My lung function was down. My x-ray showed some more marks than normal. My breathing was short and labored. My mucus production had increased. I couldn’t get through a night without waking up in a coughing fit. I was run down. My body needed a break. It needed medicine. It needed rest. It needed a tune-up.
Last Saturday Megan and I ran 18 miles. That’s what our training plan called for. It wasn’t pretty. We had to stop countless times so I could cough and get the thick, colorful focus out of my lungs. We had to take breaks and walk cause I couldn't catch my breath going up hills. We had to adapt our training run because I wasn't at my best. But nonetheless we continued and finished. Four days later I was at Beth Israel Medical Center waiting for a PICC line. The first step in what would be a week long stint as an in-patient and 1-2 more of home IVs. In the CF world, what we call a tune-up.