"I’m a mom of twin boys, an Occupational Therapist that supports people with chronic/progressive neurological conditions, an artist and I volunteer with Cystic Fibrosis Canada in a leadership role as the chair of the Adult CF Advisory Committee.
The older I get, the more compelled I feel to share my story. Not only because I feel Cystic Fibrosis deserves more awareness, but because we all experience struggles and setbacks in our lives. Perhaps by being open about our vulnerabilities, we can all relate to one another a little better and further perpetuate kindness, compassion, and empathy towards each other. I’m a proud empath and I strongly believe in the power of choosing kindness, choosing compassion and choosing to understand that there is more to everybody's story than is outwardly visible.
Because of my Cystic Fibrosis (and bonus insulin-dependent diabetes and connective tissue disease) I have some fairly complex health needs and an onerous daily medical routine that takes up a bit over 2 hours per day, just to try to slow down the rate of lung function decline and keep my chronic lung infections at bay to prevent the next hospitalization. I’m insanely grateful for science and outstanding medical care, which I’ve been lucky enough to have benefitted from (and beyond-grateful to have recently been able to access ground-breaking, life-changing, identity-shifting medications… although it’s wild to think I now cost over $1,000 in medications per day to keep alive and functional…).
Beyond the expensive and lengthy medical routine, the chronic coughing, the dozens of pills per day, the insulin needles, the grossly visible permanent IV access, the necessarily-shorter-accommodated-work-days, there's the other less-quantifiable costs too. There’s worry over the impact of my disease on my ever-growing boys and the questions they are starting to ask, particularly in the midst of a respiratory pandemic where they’ve become acutely aware that germs they bring home from school can, in fact, make me sick and could trigger a hospital stay. There's the constant over-analyzing of symptoms and questioning whether a couple of harder days might mean needing to call in for stronger meds. There's worrying about when the next hospital stay will be and what that impact will be to my family and for the sustainability of my career. There's the load that comes with acknowledging you have limitations, but also making sure to still do the things that are meaningful, even if it means deliberately overdoing it from time to time. There's balancing that fine line of staying grounded in the sometimes-hard realities that come with this disease, but keeping it hopeful, yet also not being toxically positive (because that is not helpful either). There's the constant heaviness that goes along with being friends with others in the CF community, having it hit far too close to home when friends lose lung function, need to get listed for transplant, lose careers, need to give up hopes of having their own family, or die way way way too young. This disease can be bullshit and it somehow has a way of weaving resilience, kindness, and fierce strength throughout the people it impacts, which makes the losses even more palpable and unfair.
Despite the struggles, CF has also had a positive influence on my life. Above all, I have been given the gift of perspective. As I learn to gracefully accept the challenges thrown at me, I have a greater appreciation for the good days and the good moments within the harder days. I recognize how fortunate I am for incredible friends and family that have stepped up to support me without my asking. I am constantly in awe of how much love flows around me. I have a truly beautiful life and am incredibly grateful for it." - Megan Parker