Home
News and Info
Looking Glass
Caregiver Stories
Stories
Poetry
Contributors
Resources
Contact
to donate to Breathing Room
Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
cfmessageboard.com to connect with members of the CF
community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
|
|
My Three Teachers Continued
Mark was the most recent of my teachers. Mark died in his mid 40's, and he had never been the sort of person to let other people make decisions for him. Mark had his own strategy for fighting CF, and in many ways it involved what physicians thought were terrible tactics: Mark smoked, Mark drank, Mark was never very compliant with medications, and Mark tended to come in the hospital to get courses of IV antibiotics only so that he would feel good enough for a wild, week-long trip to Atlantic City.
Mark had been experiencing increasing difficulty breathing; none of the traditional treatments gave him any sustained relief. He had long ago decided not to go on a transplant list and he was clear about not wanting to go to the ICU at the end of his life. His physician, familiar with the use of BiPAP in patients on the transplant list, offered him the choice of this new therapy and Mark reluctantly agreed.
Although the BiPAP therapy did "work", that is, his blood gas numbers improved and his breathing was eased, Mark was deeply upset by the transformation of his life by the machine. He had expected that his death would be marked by gradual debility as the efficacy of our treatments slowly declined. Instead, he could now survive only if he stayed tethered to the BiPAP machine, and his death became, as he put it, "up to him." He explained, "This machine has turned my death from CF into a suicide," because he must now choose to be on the machine and live, or remove it and die.
What bothered Mark was having a choice, and yet it is exactly the possibility of choice that is so important in the high technology world of the hospital. Mark had found a kind of solace in inevitability, a lack of choice which formed the background of his character and his life. For him, knowing that he would die was not a source of suffering; he had framed himself as a survivor with CF, and reveled in that success, even as he drank and smoked and generally ignored the advice of the CF clinic. In his eyes, he had beaten CF (and medicine) at its own game by surviving as long as he had, and he reveled in the fact that he was living to tell the tale. But now with the institution of BiPAP the tale had a different ending, an ending of forced choice: live on a machine or die. No longer could he thumb his nose at the disease and dare it to kill him. Now when he died, he would have to decide to die today. He was haunted by the choice and cursed the doctors and the machine. Mark was found dead at home by his visiting nurse, the machine disconnected but still at the bedside.
|
|
|
