Learning to Live with Grief

Grief seems to go hand in hand with CF. It is impossible for sorrow not to rear its ugly head when battling a lifelong chronic illness... “chronic” stands for long-term suffering, and the definition of grief is “long-suffering” which can only mean it is inevitable, right?

The Many Masks of Despair

Living with CF allows grief to appear wearing many masks. It is a mournful masquerade. Losing loved ones and close friends to the same illness we battle every day brings fears, worries, and a monumental amount of guilt. It has taken a strong hold since we have been given access to CF modulators. Watching the journeys of others who have not been able to gain access to such drugs is a very dark and difficult road. Survivors' guilt doesn't just apply to catastrophic events but it has sewn its foundations deep into the CF community. The devil on our shoulder whispering why me and not them? Many of us are left feeling unworthy of such drugs when we have dear friends and loved ones who didn't get a second chance at life.

The other cloudy plot grief likes to narrate is how much CF can take away from us… time, people, life experiences, career choices, fertility, fitness, health and much more. Grief reminds us that often cf dictates many of the “big life decisions”. It's that monster lurking in the corner on those sick days, the hand counting down the clock. Yet, grief I have realised is actually just a great love with nowhere to go.

A Love For Life

A love for living. A love for our family and friends. A love for all the things we aspire to be. A love for all the places we hope to visit. A love for all the things we wish to accomplish.

Among all angst in the most difficult times, I have found grief is a great teacher and if we can go beyond the anguish, we can be rewarded with great insight and strength. I learned a long time ago we could be foes or we could be friends. And that, I think, is the key. The ying to the yang. The good and the bad. The darkness and the light. There aren't any rainbows without a few storms. Without grief, without pain and suffering, where would we draw our infallible strength and determination from?

The Force Behind The Fear

There can be something profound about living with grief and that is it really helps to define what truly matters. It sets fire to our hearts where the desire for a life worth living fans the flames. It guides us along our journey with great defiance. Just as grief is a great opportunist, we strive not to let opportunities pass us by. We grab life with both hands and keep running in between those sick days.

I haven't met one CF person who doesn’t emit utter force and endurance, yet I also haven't met one CF person who isn't consumed by a war within themselves where grief lies in wait at every hurdle. Through it all, we look grief straight in the eye, carrying on with it lurking down by our side.