Day two of yoga may have been more challenging for me than day one. My bloating is still just as bad and added to it a sinus and tension headache. Downward dog and any forward folds were making me sick to my stomach as it made my headache worse. I pushed through. Thank god today’s pose was Childs Pose (Balasana) because I spent a lot of time there. Even laying forward in Childs Pose was painful to my sinuses though. The fluid feels like it moves around my face and pools forward, so I couldn’t hold poses very long. I chose gratitude as my intention word today to remember all I’m thankful for. All I’m grateful my body can do now that it couldn’t before. I kept reciting it in my head, trying to stay patient with myself. I’m my biggest critic. I reached out to Avril feeling a bit defeated and she had some amazing words to make me feel better about myself and my practice. She told me to be proud I even got my mat out. I am proud, this isn’t easy for me.
My writing prompt for today is to think of a moment from my childhood that was impacted by my disease. While so much of my childhood was impacted by my disease I can think of one time specifically.
I was a young teenager hospitalized yet again from a Cystic Fibrosis exacerbation.
A CF exacerbation is basically pneumonia, our lungs fill with sticky mucus and we can’t cough it out so it gets infected. We call these times spent in the hospital “a clean out” we go in for 10-14 days to get IV antibiotics and extra airway clearance to try to cough out what’s in our lungs. We do tons of nebulizers and get chest PT to help clear it. During chest PT you lay in several different positions while they clap on your back and sides trying to loosen the mucus. We also use a vest, that inflates and shakes you when you wear it for the same reason.
So I was in the hospital for nearly two months during that admission, we did everything we could to make me feel better and get better but nothing was working. There are tests called PFTS (pulmonary function tests) that our doctors use to determine how sick we are and if we’re getting better. There are many factors used to determine wellness, but PFTs are a big part of that determination and mine weren't getting better.
My mom was there with me and I can remember the room I was in. I was in the very first private room on the floor, I had rearranged my room so my bed was near the wall and I was laying in it “sleeping”. I didn’t want to talk to my doctor, I was frustrated with the whole situation. I was tired of being the teen who was in and out of school. Who had to do so much to stay even remotely healthy. I wanted to be normal.
The doctor came in and saw me sleeping so him and my mother talked. They talked for quite some time about me not getting better and what the options were. He told my mom he thought it was time I went home because I wasn’t going to get any better. That my lung functions had declined more and this would be my new normal. I had my back to them as tears pooled in my eyes. The two people I trusted more than anyone, the two I trusted to fix me decided I couldn’t be fixed. I felt broken, sad, and angry. Mostly angry, it was an emotion I turned to a lot in my younger life, it was easier than sadness and even though it was projected on to others, it was better than seeing them cry because I was upset.
“There’s nothing more we can do,” my doctor said to my mother and I heard her crying too.
This was a powerful statement to me, I became determined to prove everyone wrong. I went home and I actually did get better. My will was strong even though my body was weak. It was the first moment I was basically told that was it, in my life. It was the first, but it wouldn’t be the last.
Myself or my family has been told at least a half dozen times I wouldn’t make it, maybe I wouldn’t make it through the night or I wouldn’t make it much longer. However, I always used that as motivation instead of a devastation. I pushed harder instead of giving up. Our bodies and our minds are a powerful thing, you can keep fighting, you can keep going. You just have to want it bad enough.