By Jen Weber
The other day I was lamenting how life was taking another detour due to a CF complication – that time I was being admitted unexpectedly, which meant cancelling fun weekend concert plans. I think it is so easy to get stuck focusing on what CF can take away from us. That is a legitimate gripe, to be certain; but in my experience, that frustration doesn’t do much good if not channeled purposefully. I had to then remind myself, living with CF has certainly given me a great toolbox of skills that actually serve me quite well.
For one thing, I am a master juggler. Like almost anyone I know with CF, you figure out early on in life how to multi-task while doing nebulizers and coordinating home IV schedules – not to mention the creativity involved sometimes in doing those IV’s in the most unusual of places! I think time management and organization was a skill I knew before I knew how to write in a day planner (or Outlook calendars even existed!). Sorting pills, managing prescription refills, scheduling and remembering doctor appointments – by high school that was all my normal routine. (And now that I’m post-lung transplant, I have more appointments and meds than ever!). And, while I am certainly not happy CF may have been the lesson plan used to teach me these skills, I’m glad I learned them early in life. Probably the strongest skill I developed was how to be an advocate; whether speaking as a volunteer for the CF Foundation, or to healthcare providers about my needs, or to an insurance company wrestling claims and EOB’s. Learning how to speak up has been a great asset – especially considering my chosen career, a lawyer. And now, whether managing a complex project at work or helping coordinate a local pitch-in for a local monthly social, it’s great to know I can manage the task in front of me with this complex set of skills.
For me, contributing fully in my job and community, being a supportive friend, and engaged family member are central personal commitments. Within those various roles, when there are ways that my CF diagnosis can bring awareness to the disease and its associated issues, I try to do so. Exemplifying the traits CF has helped me develop, as I go about my day in those capacities, is one way I can do that. In doing so, I believe that initial frustration that crops up from time to time in focusing on what CF takes away from me is replaced by the empowerment in what I am able to do in spite of it.