Barb, what’s it like to be dying?
A friend—a journalist—asked me this a while back. In another life, I too was in the news business so I am not bothered by blunt Q&As. Quite refreshing. Cards on the table.
‘I’ll tell you when I know’, I told my friend.
I was, and I am, dying. I’m Stage 4 and there is no Stage 5. But, and this is a big but, I have embraced oxygen therapy which can bestow many more years of life.
Couple O2 with good diet, exercise, rest, and avoiding infections, and I believe I can make Stage 4 a long one.
In documenting my search for a good life with Copd, this blog has already explored mindfulness, news blackouts, exercise, singing, the power of positive thinking, self-acceptance, euthanasia, forgiveness, assertiveness and gratitude.
OK, life with Copd is complicated. So can we ever get divorced, this lung disease and me?
Both my GP and chest doctor have supported my decision to decline a lung transplant. (They would have equally supported a decision to go ahead).
So, why would I not accept the gift of life? For some it’s a no-brainer.
After due diligence, I concluded that a lung transplant was not a magic bullet.
Only half those who get new lungs are alive five years on.
The surgery and recuperation are onerous, requiring one to pack up and go to the city for maybe the best part of a year. We have cats, chickens, a garden. My partner works part-time. How would we manage? And I might die on the operating table, or six months or a year later. We are weighing my very life: my 21 grams, as Hollywood would have us believe.
After a thorough (and tiring) work-up, one must live in a state of readiness for ‘the call’. Correct weight is maintained. Bags are packed. You know your second chance will begin with another’s death. You make peace with that. They let you write an anonymous letter to the donor’s family. Your fate will align with another human being in a very mystical way. These are the kinds of feverish metaphysical musings that arise in the wee small hours when one is contemplating organ transplant.
Are you compatible? You and the dead person. If not—rejection. It all comes down to rejection. Like in a relationship.
The new lungs come with a trunkful of medications to suppress your own immune system and to deal with the myriad problems that arise from having no immune system.
While lung transplant is a success for many satisfied customers, I have personally known others who are worse off after surgery. They are still in wheelchairs and on oxygen. Some say even with a successful transplant, you swap one disease for another. And then one day, your lungs falter and you meet your disease all over again . . .
In the end, it’s a philosophical, perhaps a spiritual decision. My close circle all expressed relief with our decision – yet they had seemed so supportive when I had wanted surgery. I realized they loved me enough to give me the dignity to freely choose.
Any lingering doubt was banished when I fell off my bicycle and broke my hip, my bones softened by Copd meds. I was treated royally by the local hospital but it showed me that I did not want another even more major medical adventure, or misadventure in the near future.
As Kenny Rogers sang, ‘You gotta know when to hold ’em, know when to fold ’em’, so I gambled on keeping the old lungs. I gambled on staying home and enjoying the peace and beauty of where I live in a seaside village with steep coastal cliffs at my front door. There are acres of eucalypts that make the air piquant. Wildflowers of blue, purple, yellow, orange and red spring from the pristine heathland. Soft grey kangaroos flit by at dusk and overhead are my favourite birds, the Jurassic yellow-tailed black cockatoos—their spectral call announcing the rain is coming. In winter, you can pick out sprawling Scorpio and the Southern Cross in a clear, twinkly sky. Stars at night, birdsong in the morning. I would miss them if transplanted to the city for surgery and rehab.
Do I ever wonder ‘what if’? Sometimes, when it is very hard going; when I am in the thrall of a raging four-week infection that is impervious to hardcore antibiotics, and as my fitness and optimism drain away, I wonder if I did the right thing. It is in those moments I know all about dying.
To live close to nature, as I do, is to draw inspiration from it. So I see birds and mammals live and die without complaint; without respite. The old spotted ringtail possum falls suddenly to the ground after a lifetime of leaping from tree to tree. They have no self-pity, the animals. The day of their deaths is like any other. They seem to give it up easily in the end; to retreat and then let go, their spirits tumbling out of frail bodies, as I have seen happen many times.
When my mind and body are less feverish, I can tell my friend I still can’t answer her question, but I like the way animals approach the whole business of dying, by just getting on with living.
♠ ♣ ♥ ♦
Kenny Rogers – The Gambler