The Fighters Chronicles - Mark McCormack
My name is Mark McCormack, I am 28 years old. I grew up in a small neighborhood in Boston called Brighton , which is on the west side of the city. I also happen to be the first born of two amazing parents who immigrated to the US from Dublin Ireland. I have been told that as a young child I was always sick with what they believed was asthma. When I was 4 years old I was very sick and my parents were approached about getting me a sweat test to test for cystic fibrosis, due to both my symptoms and the high carrier rate of people from Ireland. They followed direction only to receive the devastating news that I did in fact have the disease. My parents were faced with an extremely difficult decision , to fly back to Ireland and be surrounded with the love and care of family or to stay in Boston where some of the best medical care in the world is available.
They chose to stay. A decision that I will be eternally grateful for. My disease was bad in my early years as a child and I spent a lot of time in and out of the hospital receiving treatment. I got to build friendships with the staff and other children that also had CF. My illness seemed to show no signs of improving and it was decided to give me the opportunity to Make-a-wish. I chose to go to Disney world, as many 8 year olds would. I knew nothing of what the trip actually meant and I had an amazing time. I had a special button on my shirt and didn't have to wait in line, it was great! I came home, and back to life. A life that my parents made sure was as normal as it could be. I played sports. I went to school with all my neighborhood friends. Since my parents had no family in America, the neighborhood surrounded us with love and care. They became family. This still reigns true today. I still have the same best friend I have had since kindergarten, and he visits me every time I am in the hospital.
As I began to grow older I had the painful and confusing sight of watching all the friendships I made with fellow CF fighters fade away. They seemed to be passing away left and right. I couldn't comprehend this harsh reality and as a young boy I developed a hatred for the disease that I had. It is hard for people who don't have this disease to fully understand the life that we have to live with. Those friendships are some of the best I have had the opportunity to have. Every time I return to Boston children's hospital I am filled with memories of all the ruckus we used to cause. From sneaking out of our rooms to go roam the hospital. To filling up gloves as water balloons and dropping them down 10 flights of stairs. Memories I will cherish forever, but have no one to reminisce with.
The anger and fear that began to run through me ended up changing my life forever. I became careless at the age of 13 and didn't want to be sick anymore. I began to drink alcohol, something that my parents always warned me against for the interactions with my medication. I also began to abuse perception pain killers. This devastating subconscious decision to self medicate my pain and fear ended up taking a hold on my life for the next 13 years. With that came complete neglect and abuse of my body. I'm not going to get into any specifics but progression is a huge part of my story and every year things became worse. At 16 years old I fell ill with a severe intestinal issue and had to be rushed into surgery. The surgery went well and I dealt with the sudden flash that I am in fact still sick the same way I had been dealing with it for the last 3 years. Things continued to grow worse with my abuse of alcohol and drugs. At 18 years old I had the same intestinal problem come suddenly again. This time was worse. More time in surgery. Followed by a collapse of my lungs and 3 weeks in the ICU. More fear. More anger. All I wanted was to be normal. I had managed to be accepted to college, even though I saw no point in it because I was told 21 years old was out of my reach. Because of this surgery I was not able to attend the first semester. I dealt with this like I had learned to deal with everything. I did go to college the next semester and was shortly after asked to take a leave of absence. I couldn't bring my self to go to class or learn anything that I would never get the opportunity to use. I used college as one big party. I was convinced that what happened to the people I once knew was right around the corner for me and I acted accordingly. I didn't care about anything aside from partying and having what I though was fun. I numbed my pain, anger and confusion every day until I was 26.
The whole time my health was taking a huge hit. I wasn't taking my medication as I should. I was a poor excuse for a human. I was creating the philosophy that I was convinced was going to happen. Physical and mental addiction became more important than being healthy. Years and years seemed to go by. My family and my doctors were all to become aware. None of them could convince me to stop, or show me that life was worth living. I received countless treatments for my addiction and each time I went right back to it. I moved out of Boston, and I went back to it. Nothing worked. Not because the treatment wasn't enough but because I saw no hope.
My life would eventually fall apart. Family was forced to give up on me. Friends would no longer want anything to do with me. I was hopeless and wanted the end to come. On Christmas Day Of 2014 I woke up to a feeling I never had felt before. I was fed up. I made a decision that day to take one more chance at stopping the terrible cycle I had been stuck in for half of my life. I went into treatment the next day, with the undeserved support of my family.
I was 90 miles away from home and finally clear minded, but I was in the middle of a battle between my brain and my heart. I wanted a better life but didn't know how to do it. I hadn't taken care of my CF in years. The idea of taking handfuls of pills in the morning, evening and every time I ate was a haunting one. With the help of the kind people at the facility I was a patient at I began to develop a routine. Something I have never had since my mother took care of my medication as a teenager.
Some how weeks went by. Then months. Consistently taking care of my health had caused my PFTs to go back up. I gained a huge amount of weight. I felt like a person again. There was some speed bumps along the way, such as a pulmonary embolism surgery and a clean out early on. With the new support system I was to develop in a 12 step fellowship and of course my long time best friend, I made it through that. I became excited for life. My health was taking a turn for the better, both mentally and physically. Then I received a call from my doctor, who had seen me through my worst, that I would be able to receive the newly released CF drug ORAKAMBI. My mother had spent weeks fighting insurance companies
For me to get it. It was a confusing call to get, I now had an opportunity for a full life.
I would continue to take care of my CF to the best of my ability, through graduating the treatment facility I was at to a sober home I lived at for 8 months.
Then I met a woman, who stole my heart from the very moment I saw her. Who is the most loving, caring and selfless person I have ever met. Two months after we met I became sick again, then came another hospital admission. Megan had spent every night with me. She slept on those awkward reclining chairs and never left my side. I had never previously known what it meant to be truly loved until those two weeks. Life was becoming more and desirable every day. We would come to move in together and she keeps me on the ball with all of my medication. She even put up with me being home for 2 weeks last month on a home treatment of iv antibiotics, and took good care of me as well.
There is a vision for a future of which I could of never imagined today. Marriage, a house, being a father figure for her 7 year old son, hopefully having a child of my own. All of these things had been so far out of my reach that I never thought they would happen. I have been completely sober since December 26 of 2014 and I have continued to reach many milestones with my health and life in general. My lung function has continued to go up along with my weight. I have worked in the carpentry field for these 2 years and also am currently in school to receive a license in addiction counseling.
Cystic fibrosis has changed from something I ran from, to something I have ran to. I can not deny that I Managed to beat the odds for a reason. My story may not be the typical CF story. There are parts that I am not proud of, but this is my story. The story of how I chose life.
Hey Mark its eary but besides my dad dien at 18 n my house being burnt dwn 6 months after you told my story word for word. I’m now 30 and my turn around were my 2 beautiful nieces ( one of witch is diagnosed and treated for cf) who only have a part tyme dad but a full tyme uncle. they are my main reason for fighting this illness and everything else where my health is concerned . I want to see them grow as much as possible b4 I go. I want to be there for kyleigh wen she goes in hosp or god forbid has as many surjurys as I have . I want to see that me n my family have raised them right.
Hi Mark, I just wanted to reach out to you and tell you that your story is very relatable. I am now 34 and was diagnosed with CF as an infant. I am currenty doing my rounds in the hospital and your story like many other’s give me hope. I haven’t had a friend with CF since i was a child and would go to CF camp. It would be nice to have someone to talk with who knows what it’s like to feel hopeless at times. I constantly struggle with weight gain and the wanting to be normal. Hope this finds you well.
Thank you Mark for sharing your story. I’m so scared of my son growing up and fighting me on treatment. No mom wants to live without her baby. I’m happy for you and your mama that you turned it all around.