Grandpa's Lungs | Part 1 - Screaming into the void
I have never screamed so much as during the 2 years this story took place.
In my head. In my car as soon as I dropped the kids off at daycare. In my pillow. In the shower. In the void.
Always in the void. Because if there is something to understand from the experience of the families of someone with a degenerative disease, it is that.
The deep, vertiginous impotence of a call for help that does not find an echo. Despair in small bites.
And although at the destiny lotto, we won the million at the very last moment, I still feel the duty to share our experience.
For all those who are still waiting for their own miracle, for their loved ones... and for those who were not lucky
In 2017, following a great emotional shock, my father's health began to deteriorate.
Fatigue, pain, constant coughing, shortness of breath, impatience… so many red flags that gave us a glimpse of the tough fight that had already begun without our knowledge.
The diagnosis took a long time to come, we remained in doubt for several months. Another bronchitis? No. Depression ? No. A lung infection? No. My God, a cancer? No.
All this time we tried to spare the children. What's the point of dragging them with us into the wringer if I have no answer to give them?
But eventually the stress of feeling the ill-hidden anxiety of the adults around, of seeing their loving, involved grandfather gradually closing in on himself, became greater than that of knowing at least some of the truth.
" What's wrong with Grandpa's lungs, mum?"
" I do not know, my love. They are sick. We're lucky the doctors are taking care of it. In the meantime, Grandpa needs some rest. He's a bit sad not to be able to play with you as much as before you know... do you want us to draw him a picture?"
Harsh words wrapped in sweetness. The best we can do.
And then suddenly, the enemy revealed itself: " Pulmonary Fibrosis ". There is no cure for this disease. We try to slow it down… if possible.
I could explain to you in medical terms what this horror is, what it looks like when you are in the front row to observe it. But that wouldn't do justice to reality. The truth ?
I saw my father drown.
In slow motion. Eye to eye. Looking for his air, cursing life and this body that betrayed him, that abandoned him.
Privileged witness to his gradual death.
There would be so many things to tell...
How everything has always been at its worst.
How the disease progressed at breakneck speed. Without any respite.
How I developed this obsessive need to be available at all times, on the line, glued to my cell phone day and night to be there, if ever...
How everyday life has become heavy.
How anguish and pain exhaust and wear out.
How lonely we feel, even surrounded by millions of tons of love.
How we subtly organized lots of "last times", with our hearts in pieces. Because hope, sometimes, has limits.
How the transplant, our "worst case scenario", suddenly became the only solution.
But I will rather jump directly to the day when the light came into this story. Without even being recognized at first, accustomed as we were to always preparing for the worst...
One morning in August, my father entered the hospital for a "routine" follow-up, but his medical team was not available. They were in the operating room. Someone on the transplant waiting list had gotten the much-desired call.
Since he was already there, he was shown the respiratory therapist. She didn't let him go. His condition had deteriorated too much. Even all the paraphernalia, machinery, oxygen therapy and tubing in the world no longer allowed him to stay at home.
It was there, at that moment, that his fate was sealed.
In a second, he had just gone from the "regular" waiting list to the emergency list. If lungs of the right size and blood type became available, they would be his.
It was the small chain of seemingly insignificant events that changed everything. Luck had tipped over to our side without anyone knowing it yet.
But the countdown was also more accurate.
Without a transplant, my father had only 3 months to live.
This is where I let you breathe a little. In my next post, I will tell you the rest of our story…