Tonight in the house of MPD, what really goes on? What
pain, what eruptions lurk in these proliferations? One friend has written me that he is in hell and I think hell must be very large
I need to work tonight, so I sat down at the computer, checked my e-mails and visited our Facebook page.
To come into our Facebook Forum is, at first, confusing. The gaiety and life, more like a ballroom than a waiting room. Life goes on, greetings and exchanges of photos, birthdays and babies, life roars its greeting on opening our Facebook page. Jeremy’s childhood photo, a grinning happy host. Stories and questions.
There’s compassion, sympathy, advice, tall tales, outright myths flying all around the room. It’s like a warm family gathering, hard to resist and hard to take too much of.
And under it all another life, clasped tightly together two lives, each asserting, proclaiming its needs, rolling round together metastasized into one another. Another subterranean life. Some of us have had difficult procedures this past week, painful and uncertain and are recovering, drugged. Some are in clinical trial, some in the middle of stem cell transplant, some just struck dumb.
I was enormously cheered to read about Jocelyn’s shaving cut and Barbara’s prompt 5 blade Venus Embrace by Gillette response! So healthy. My Gillete Mach3 has lasted almost a year, I think. .
What I’ve found is there is a soft side to proliferating blood disease, diffuse and subtle along with a harsh and blinding side. These past days I have been in a fugue state, neither awake nor asleep but often rammed solid on my back, in bed, legs leaden, eyes heavy. This is the familiar soft side paralysis. It’s tough on the animals. I am unsteady, drop and break things – a favorite cup and rare lamp today – forget what it is I planned to do next. I stop eating, mostly, This time just about completely. Food seems to be a mistake my throat refuses to accept. This is a bad place to be as the deadline for the October issue nears. It passes.
But there is a far worse place, a place of pain that can’t be ignored, a serial deep cramping of blood, bone and muscle and organs from which there is no escape. We each have our catalog of pain, our strategies to slip its bonds, but its release is the punch line of a long joke, the sudden clarity that MPNs are real, cannibals boiling up kettles in our bones.
For many of us, for most of us for some period of time, our MPN is a distraction, an occasional talking point, a background shadow, a phlebotomy or a few too many CBCs, a baby aspirin. It is rare, I think for the snake to lie coiled, unmoving, forever. But so long as it’s not slithering around and raising its agate eyed head in hunger, let’s party on.
During this tough slog, I’ve been working primarily on Joyce’s story for the Magazine. There could not, I think, be a better testament to the double life we lead with these diseases. I didn’t cry for Joyce until the end, until I felt our common struggles, until I read her last posts.
Be well, be happy,