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In my daily routine I usually drive across a set of railroad tracks. Every day just before I do I wonder if today is the day I will get hit by a train. I am not trying to die or wishing for my own death, it's just hard to want to keep living.
I'm sure it's alarming to read that, especially in our sound-the-alarm culture. I've talked a lot about it with my counselor. There is a huge difference between "being suicidal" and just not really wanting to be alive. My counselor tells me that it's pretty common after an out of order death. (I'm safe.)
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The one thing I've been able to do for the last six months is sleep. Trouble sleeping is one of those things that everyone assumes is part of grief. It is extremely common. In some stroke of ironic dumb luck, I seem to have been the exception to that. I've been able to sleep even if sometimes it comes with unsettling dreams. Well, grief is a monster that leaves no part of your life untouched, so as of the last couple of days I've been having trouble getting much sleep. I'm hoping it's temporary. Usually every month I become agitated the week leading up to the 19th. Anticipation grief. Then after the 19th I have a couple of good days. Here's hoping.
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I've been reading Harry Potter. I've never read any of the books before last month. It's not really my genre. But a friend bought me the whole series last summer. So last month I picked up the first book and started reading. It is oddly cathartic to read. I think it's because it's really just a story about pain and suffering and the humanity of living with that. Or at least that's my lens right now. I'd probably see the same thing if I read Jane Austen.
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We had dinner with Eli's immunologist in North Carolina last week. He is an incredible doctor and an even better human being. He's been a pediatric immunologist for over three decades. He has seen a lot of suffering, and has had well more than his share of patients die. He treated kids who had HIV before there was much treatment for HIV. He fought for all those kids and he watched them all die. And I wonder what that must have felt like? But then he also saw treatments start to work. And he saw his patients live. And I wonder what THAT must have felt like for him.
At one point this summer he and I were standing in the entryway of Eli's PICU room, discussing viral loads. I don't remember if Eli's adenovirus levels were going up or down at the time, but I remember asking this doctor if he had ever had a transplant patient with adenovirus survive. He looked directly at me and after the slightest of hesitations said plainly, "No." I wouldn't have guessed that would've been his answer. He always acted like Eli had a chance. He really did believe Eli had a chance. It wasn't just that he was confident in his abilities as a doctor. He does not give up. He seems to always have a shred of hope that if you keep at it and you try to look at the puzzle differently, eventually you'll get it. It's a remarkable quality in any person, much less a doctor who has seen so much suffering.
At dinner he toasted to Eli.
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