How important is being normal?
25. My normal requires allocating 2 to 3 hours of my day to CF my treatments beginning as early as 4:30 in the morning and finishing as late as 1 a.m.
24. My normal requires carrying a pill bottle with 30 to 40 enzymes to swallow.
23. My normal means receiving funny looks from wearing a mask on airplanes and at my children's doctor's appointments.
22. My normal means fearing germs like they were bullets fired from a gun. Hand sanitizer is my best friend.
21. My normal requires dealing with anxiety when packing multiple bags for as little as a 3-day trip. Traveling is a real workout for someone with cystic fibrosis.
20. My normal means being preoccupied with a doctor's appointment every 90 days for the rest of my life. I also went to a children's clinic until I was 30 years old.
19. My normal means living with suffocating lungs that burn like a four alarm fire.
18. My normal means worrying about power outages because they put a hold on doing my treatments. I now have a battery-powered vest and a generator for safety as well.
17. My normal means learning how to deal with IV and oral antibiotics when I'm sick.
When you look up "normal" in the dictionary, a person with CF is probably never shown.
16. My normal meant explaining to every woman I dated that having children would be a chore, hiding my therapy vest until I had the courage to explain the significance of it and masking pill-taking until I was comfortable enough to reveal my condition.
15. My normal means working every day in the gym and on the treadmill with no guarantees that it will prevent a life-altering infection.
14. My normal is having people refuse to tell me their problems because "they feel guilty complaining to me" because my problems are "much worse." By the way, it's not a competition. Worse or not, I still want to help. Worse is subjective anyway.
13. My normal is picking up the phone and telling someone I'm doing my therapy and hear the "worry" in their voices because they think they just made me sicker by momentarily interrupting my treatments. I actually take breaks to let my dogs out to pee so it's okay.
12. My normal means a coughing fit isn't simply a cold but a frantic call to my pulmonologist and months of taking antibiotics.
11. My normal is having a medicine cabinet that resembles the pharmacy in the back of CVS. I still think they should call me first when they have a backorder situation.
Andy, it's CVS. They need to call in an order.
10. My normal means seeing a therapist and a psychologist because of all the pain and angst cystic fibrosis has caused me. Though I have learned that there's no one or nothing to blame other than me. I'm responsible for my issues because I am the only one who controls how I handle them.
9. My normal means cracking a joke as a self-defense mechanism, using sports as an escape and treating dire statistics as motivation to fight my disease.
8. My normal is reading about studies to see if one would fit me and hoping it could finally be the breakthrough people like me have needed.
7. My normal is knowing I have a disease that has no cure and realizing that my older sister lost her life to it.
6. My normal is NOT walking into a smoky bar and having friends who totally understand and back me.
5. My normal is hearing from people who are sick that they don't want to come anywhere close to me as the "last thing they want to do is get me sick." Trust me. I appreciate it but sometimes it makes me feel like there's something so wrong with me. I mean there is but I guess I don't need the reminder.
4. My normal is telling the person working at the gate I'm flying out of that I need to board with special assistance so I can load the 50 pounds of medication I have with me into the overhead bin. I can't check that stuff. Sometimes it's hard because I go in right after people in wheelchairs. I see people look at me funny as if I'm parking in a handicap space. Little do they know that my handicap is mostly invisible until I put on my mask on the plane.
3. My normal is explaining to the person or persons next to me on a flight that I'm not contagious and just wear the mask for my protection. And because I'm a body double for Bane in the next Batman trilogy.
2. My normal is not being able to hang out with people who have the same disease with me because there's a potential for bacterial cross-contamination. I also can't hang out with people who smoke.
1. And finally, my normal is wearing a vest that has nothing to do with a tuxedo.
I used to feel like cystic fibrosis was making me look abnormal, alienated or just plain ugly. Like I said, I always wondered what it would be like to be normal. Now I see it differently. By being unique, I have an opportunity to make a difference and that's why every day I spread awareness about this disease. If just one person can learn a little bit more about cystic fibrosis and can help the cause, then being different is worth it. After all, if everyone had the same way of doing things, the same interests and the same beliefs, life would be quite boring.
I guess what I'm trying to say is "Embrace your abnormalities. Rather than hiding them, use them for good."
Now if only that were "normal."
Live your dreams and love your life.
Andy
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