The ones worth fighting for are the people who, when you are at your lowest point, remind you of why you are still fighting.
My name is Meghan, I am 28 years old, and I am keeping this webpage of written chapters going because I want to remind everyone with CF that there is always a light in your next step, no matter how far away it may seem at times. That next step can be as grand as pulling your PFTs up by 30% or as simple as being able to drink a hot cup of coffee tomorrow morning without feeling like your going to cough it up due to the temperature change. Any Step Matters. When you feel like it doesn’t, please remember that you are pushing through walls not only for yourself but, in my eyes, more importantly for those who love you.
Recently I had a 25% decrease in lung function, which we are attributing to severe asthma. Not an infection, with the normal course of antibiotics. Severe, asthma, that, won’t, go, away. And unfortunately it has been getting worse since grad school. It’s been one of the many mysteries of CF and we are tackling it piece by piece.
We all have low points but the week of 12/10 was one of the worst. I felt absolutely wrecked. I was barely getting through work, every piece of my body hurt from shaking during coughing and irritating every muscle in my chest. My intestinal tract was, lets just say, very off. I became extremely depressed and finally at the end of the week, we lost two CFers, Leah and Christy, to complications from CF and colon cancer.
Wrap it up on Monday with a poor PFT and that was it. I was done. Thoughts about the future cranked themselves into my head and I let them roll and wind all the way through. I attributed my low scores to deterioration and just thought this was the new norm, and I might as well make the most of my time.
My family and Rob are the reason I came up for air.
I looked at my mom’s face on the drive home from that appointment and knew this was for her. I listened to Rob’s attempts all week to try and desperately figure out what the hell was going on and why we couldn’t fix this. I talked to my Dad, Casey, Anne, and Sam that week and quickly realized this isn’t all about me and my time here—it’s about them.
I need to care for them and love them like they have loved me most of my life. I needed to remember the moments that my mom fought for me to get the meds I needed or get me out of situations where people around us were sick. I needed to remember the moment I suffered from hemotphysis and Rob was there cleaning up the mess in the carpet. I needed to remember the time my Dad drove me to a half marathon in Philly so I could accomplish a goal I so desperately wanted to do to show CF that I was greater than it would ever be. I needed to remember the times when Casey would sit and listen to me complain about every symptom and appreciate how hard it was for her to hear everything I do not really show her. I needed to appreciate the times when my two youngest siblings would ask my mom how I’m feeling without asking me (sorry I found out;).
All the sacrifices my friends and my new family (Rob’s family) made are never forgotten. The co-workers who came to CF events, even though some were In their own pain, making it difficult to walk. The PT school friends who would hand me food or tools after washing their hands first. The grade school and college friends who check in to make sure I am doing okay. Rob’s family who always checks to make sure every part of their house is 100% clean before I step in the door. Everyone, I am fighting for, and I cannot thank them enough for helping me see that light in the next step.
As the saying goes, HOLD those you love closest to you, and never forget to appreciate them. Whether it’s saying thank you or I love you. It goes a longer way than you’d ever imagine.
Wishing All of you a Merry Christmas, Happy Holidays, and a healthy and joyous New Year.
Love Always
Breathing and Beating,
Meghan
