What CF Can and Cannot Take Away From Me

Living with cystic fibrosis is a constant reminder of the things that have been taken from me. I feel like I've made a bargain with the devil, so to speak.

| 4 min read
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Matthew Lail
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There are certain things that cystic fibrosis can take from me, but in trade, there are certain things that I will not give to CF.

CF can have my time. CF will, without a doubt, take my time. It takes it every morning -- when I get up at 5:15 a.m. -- to do treatments before I go to work. It takes my time when I infuse antibiotics and check my blood sugar five times a day. Or to go to the hospital and doctor's appointments. And it will take time away from me when I prepare weekly medications and order prescriptions every month.

CF cannot have my memories. The time that I do have that is not controlled by CF is always put to good use. These moments have translated into the best times of my life. This includes showing horses with my dad every weekend as a child and young adult; seeing the Eiffel Tower, the Roman Colosseum, Westminster Abbey and the Golden Gate Bridge; and making trouble and sharing good times with close friends. Those memories I will keep, and I will not let CF have them.

CF can have my embarrassment. For anyone who has CF or is closely linked to someone who does, it's no secret that CF can sometimes be less than attractive. CF can have my embarrassment when I have a coughing fit that starts before I can cover my mouth. CF can have my embarrassment when I overhear strangers say I sound like I belong in a TB ward. CF can have my embarrassment when I hear people ask, "How long have you had that cold?" And CF can also have my embarrassment when I feel the stares from people who see my antibiotic IV attached to me at the grocery store.

CF cannot have my dignity and my pride. CF cannot have my dignity; the feeling that makes me carry myself in a manner that shows self-respect and confidence for living with such a harsh disease. CF cannot take from me the pride that I feel every day I overcome my obstacles and the pride of the achievements that I have earned both personally and professionally. CF cannot have the dignity that prevents me from complaining about my circumstances, playing the victim or making excuses when I fail. CF cannot have the pride that I feel as I earn my master's degree while working full time.

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Even with an IV in my arm while on a three week course of IV antibiotics, I won the local horse show that I competed in during the first weekend of June 2016.

CF can have my fear and disappointment. As I get older, I've started to transition from an "I'll just wing it" mentality to one that makes me play things on the safe side. I recently sold my first house to downsize and to find something that requires less yard maintenance. CF can have the fear that prevents me from buying a house right now because I am worried about what will happen in 5 to 10 years when I can't work. CF can have my disappointment when certain drugs don't help me as much as I would have hoped, and CF can have my fear about the uncertainty that I face with my health and how I will take care of myself as I get older.

CF cannot have the love and support of my family and friends. CF cannot take the love and support of my family and friends who have helped me deal with the fears that I experience: whether it is through their constant encouragement or kind gestures, like my parents picking up a prescription for me when I am worn out at the end of a workweek. CF can't take away the encouragement of my friends when they show up every year at Great Strides to walk with me. And it can't take the support of my parents, who have instilled in me a work ethic that makes doing treatments a priority.

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I am lucky to have family and friends who come out to my horse shows to show their support.

 

Most important -- CF can't have my hope that one day CF will be just a memory.

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Matthew was diagnosed with CF in 1988 at the age of 3, and later with CF-related diabetes (CFRD) at 14. Matthew works as a grants specialist for the Virginia Department of Health -- a job he is passionate about because of the health care aspect. Matthew earned his M.B.A. from Liberty University. Prior to this, Matthew earned his B.S. in management and organizational development and his A.A.S. in information and communication systems. In his spare time Matthew enjoys traveling and recently visited London, Paris and Rome. In 2014, Matthew went skydiving in Denver and climbed Silver Dollar Mountain.

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