Life is Funny

So Melanoma Man has gotten three job offers in 3 different second or third world countries in the last three months. It's not that he is looking for a job, not that he has sent resumes out, not that he could even go.  I remember how much he sparkled when he was working, how engaged he was in his work, how excited he would get about electricity and gas, energy generation and distribution. I wish I could give that back to him now. Even MM with all his optimism knows he wouldn't be able to walk from the curb to the ticket counter at he airport without respiratory distress and stopping to rest to catch his breath several times, that he wouldn't have access to the zillion dollar drugs and doctors that are sustaining his life now. I remember our first visit in 2011 to Dr. C/ pulmonologist extraordinaire. We talked about options, Alpha 1 replacement therapy and lung transplantation. As it turned out his lung function numbers at the time weren't quite bad enough. Dr. C thought based on his trajectory that Melanoma Man's numbers wouldn't be bad enough until he aged out for the transplant list at 64. Even so, Dr. C told us he would go to bat for MM, as all his other health measures were so good at the time. He thought he had a good chance of talking the transplant people into getting a lung or a pair of lungs for MM when the time came. "But," he warned us," it will put you in the poorhouse." Dr. C has always been a realist about money. He told us the full retail price of the Zemaira before MM started it. He told us we would likely pay a large sum of money each year for Zemaira, much less than retail, but still daunting. That it would not be unreasonable if Melanoma Man decided not to do the Zemaira due to cost. We did it anyway, but were grateful that Dr. C is a realist. The arrival of the Metastatic Melanoma made all of the transplant speculation irrelevant. Truth is the primary melanoma in 1998 might have disqualified him anyway. I liked to think the melanoma was ancient history, a non-issue. I decided to think that even though he had 8 additional primary melanomas in the interim. It was totally illogical of me. Much as I didn't think about a lung transplant, I secretly did think about it. I thought about all the things he could do with the boys with a set of functional lungs. The lung transplant was going to be our back door. And so it is that I am lying here in bed crying because the back door is closed and we can't go to Bosnia, knowing all the while how ridiculous I am. Goodnight.

Can I do it?

At work this week, we are talking about words. About choosing our words carefully, about hurt and pain and compassion. It reminds me of this: Inside Compassion: Edge States, Contemplative Interventions, Neuroscience.  We don't often talk about the collateral damage of the work we do. I liken it to a fire. The clients I work with are on fire and I must get very close, very close to them in order to put out the fire. In doing so I am burned and charred and crusty. Sometimes it is more comfortable to just leave that crust on to protect ourselves from the fire in the next room. I have to keep picking and peeling the crusts off so that I may get up in the morning and do it again. 

And there is great love there at work. I think of our two front desk receptionists, C and D and all the love they dole out all day long. They are on the front lines, watching it all, hearing it all, offering encouragement. Two weeks ago C scooted her chair into the hall and whispered to me: "There's a guy with a knife in the lobby, what's the number for security?" She called, I called. Thankfully the guy with the knife decided to put his knife away, get up and walk around the hospital for a bit while we waited the TWELVE minutes for security to arrive.

I am steeling myself for next week when I will try to talk a teenager into wanting to do what it takes to  live and try to teach a homeless woman how to be a mother. I will try to fill myself with kind words and helpfulness so that I will have something more to offer than the charred crusts left on me from last week.

I will fill my weekend with reading, cooking, cleaning, laundry, basketball, ping pong, monopoly, drawing, pretty patterned paper, and church, hoping to be refueled for the week ahead. Hoping to be kinder than I am.