It is truly amazing how quickly our minds can forget the day-to-day struggles, the exacerbations, hospitalizations, and the extreme mental toll that cystic fibrosis can have. When I say “forget,” it is not that I do not remember each hardship I have had because of cystic fibrosis, it is that I felt I had to be so hyper-focused on my current day that I did not have time to think about the trauma I had already experienced. The luxury of having time to reflect on my hardships was not something that crossed my mind because I did not have many moments to rest and process them.
However, I clearly remember one time that I was on a medical table, waiting to receive yet another PICC line for a two-to-three-week stint of IV antibiotics. I had been coughing up blood for a while and oral antibiotics and therapies were simply not enough to get rid of the infection so that the inflammation in my lungs could calm down.
Up until this point, my typical experience receiving a PICC line had been mostly routine. A solid poke in the arm was followed up by the tiniest of white tubes sliding into my arm, up through my shoulder, and finding its resting place near my heart. However, today was not my day. Fast forward to at least a half dozen or more attempts, and I became increasingly more anxious. I was under a non-breathable sheet with only my arm exposed during the procedure, and I could tell the technician tasked with this routine operation was flustered and inexperienced. It became physically painful, but as the hour ticked on, I genuinely started worrying that something bad would happen. Luckily, after close to an hour and a half, a senior medical tech came to check on us and took over. I was rattled and drenched in nervous sweat. I was so thankful to get out of that room.
All too often, I felt the same feelings as I did when I was in that room, regardless of whether I was with my medical team, family, or by myself. I was once admitted into the hospital and diagnosed with viral and bacterial pneumonia, and — to top it off — tested positive for the infamous swine flu. In most of my hospitalizations, I was at least able to have guests come and go and check in on me. However, during this stay, anyone that came into my room had to be in full protective gear and the number of guests was kept very limited. For 21 days I was in the same hospital room — bound by four walls -- and the only set of windows faced an air conditioning unit on the roof. To say this took a mental toll on me would be an understatement. Early on it took close to 10 days of IV antibiotics and rigorous chest therapies to turn the corner and start feeling better. I remember the uncertainty of whether I would recover some — or any — of the lung function I had lost from the infections. Additionally, I was battling the fear that it might lead to further complications that I had not faced before.
What is remarkable about these moments is that I still remember them so vividly. These two memories do not nearly capture the daily struggles or grind of my young life, but it has been more than 10 years and I still can remember these impactful moments.
The younger version of myself battled the infection and dealt with the rigorous therapy and medication side effects with every ounce of energy and stubbornness. I was not thinking about the past or the future. I was completely focused on winning that day — surviving and clinging on to hope.
At the end of the day, so much of the strength and courage I displayed was because I had no other choice. In the greatest moments of my struggle, all I could focus on was the present. My past was a tumultuous roller coaster, and the future was so uncertain. I just knew that I wanted to see that future, no matter how uncertain it may have seemed.
Interested in sharing your story? The CF Community Blog wants to hear from you.