"O Death," someone would pray,
"Can you wait to call me another day?"
Let's not fool ourselves. This isn't about illness or transplant or recuperation. It isn't about a "viable treatment strategy for end-stage lung disease." This is about cheating death, plain and simple.
We tend to avoid using that term, "death". As if we're afraid, as humans, that by invoking its name, it will come all the faster. We swerve away from listing it in our minds as among the possible consequences of getting a transplant, or not getting one in time. The docs are not so averse. They are blunt and up front about that possibility. They have to be; because it happens. From time to time.
Let me be blunt. Whenever I used the phrase in writing or conversation, "I don't have much time left," I wasn't kidding. As my PFTs plummeted and my CO2 levels climbed, I could feel death closing in. I had a bad scare one day in rehab about seven weeks ago when in the midst of CO2 induced tunnel-vision, I mistook Piper Beatty's figure as the Grim Reaper himself. I am not one to believe in the supernatural - but my heart skipped a beat.
Death also haunts us even once lungs come. Death is waiting in the operating room, in PACU, in ICU. It is to the surgeons credit that only 1% die on the operating table these days and fewer than 5% before leaving the hospital. Death waits for us even then, coming in the form of bacteria, viruses, fungii, parasites, rejection, or cancer. These target the immunosuppressed.
But the possibility of death is never far away. I have one grandmotherly friend in ICU sixty days now and has been shocked back to life a number of times. And another New York-to-Durham CFer, pre-tx, had a heart attack during routine PFTs....he never came back. And even though well into recovery, my friends in the hospital experience setbacks that still carry the risk of death, however slight. They are discouraged and they are scared. Typically, whatever problem it was eases and nobody thinks of death anymore, only recovery and life.
If you ever, at any point, thought, "Oh, of course Cris will get lungs!" then be reminded that there was never a guarantee and that the situation was not good. My lung volume was dwindling weekly. My CO2 retention was rising geometrically. I was one more clinic appointment away from being put on bipap. I was not taking it for granted that I'd live to see New Year's, though I like to believe I could have hung on for several months longer. I was worried. But always, always I had faith in Duke.
O Death please consider my age
Please don't take me at this stage!
Why do I write about this now, six weeks post-transplant? Should I not be celebrating every small gain, every longer stride, each and every sequential breath? Oh, I do!
But the fact remains that in the last four days, I've come across four notices of the passing of CFers. None of them I knew personally, all younger than me. Cystic Fibrosis still kills and it kills kids. I don't think any of these four even had obtained their 30th year! And I watch the behaviours of other young cystics - somewhat self-destructive behaviours - and I'm terrified for them. They've fought against this disease for so long, they've forgotten that death is a real possibility. All it'll take is the right massive chest infection or bowel blockage.
As due diligence toward a future project, I'm delving into the mass of CF-focused narrative literature. There's a certain foundational reading series that is "required" of the knowledgeable CFer and I've been lax on reading anything but the Cliff's Notes versions. Alex, The Life of a Child; Sick Girl Speaks; The Power of Two; Sixtyfive Roses...among others. I have noticed that for each book that talks of triumphing over CF, there is a book written by the survivors - and in these books death wins.
Of course, Death comes for us all. It's a given. But being 42 years old, and highly privileged to know even older CFers such as Jerry Cahill, Lynda Jensen, and Janine Ullyette, I want to strike out against Death with the battle cry that we should ALL live to enjoy achy joints and greying hair!
All of this makes me angry. And all I can do, right now, is channel that anger back into my efforts in rehab. I walk laps faster and faster, push through the pain. And when in my headphones "O Death" from O Brother, Where Art Thou? comes on, I intersperse my own lyric, whispering: "I beat death. I am beating death. I beat death. I am beating death..."
It is five o'clock in the morning on the 43rd day after my surgeons and I beat back death. As the snow falls, I am reminded that every coming dawn is another victory over death; that though for the rest of my life, I will be in a pitched battle against death, for each day I grow stronger, I push death just a little farther away.
O Death O Death
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
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