I'm in a Joni Mitchell kind of mood today. Well, for several days. First came Thanksgiving. Astounding. At one point, I realized nobody was listening to me, so I said out loud "I wonder how long I can keep on talking before anybody realizes I'm talking to myself," and nobody did. My brother got me all 3 seasons of Arrested Development for Chanukah. Um, no. If you knew me at or, or thought of what I might want, you could never make a blunder like that.
The rest of the week-end was quiet, but too short. I slept a lot, but that means I lost a lot of time. I'm so exhausted -- Friday Tired, like my book title -- that a three day week-end just isn't enough.
Then came yesterday. I won a disability appeal I've been working on for months. It was a very, very stressful appeal because I've gotten to know and care about the patient, and I really thought there was a chance we'd lose. But we won. Haven't heard from the patient, but her husband's first reaction was to thank the doctors -- oops -- and me, of course. No, there is no of course. He was very gracious later, but the celebration that should have happened didn't.
And then I got a letter from my insurance company. They're no longer covering one of the two meds that keeps my gastroparesis in check. If I lose this med, I start vomiting, there may be no way to keep fluids in me, and without food or fluid, you die. That's when they will ask me to accept a feeding tube and I will decline. I know too much and have seen too much to put myself through that.
I called a lawyer I know who works for my insurance company and he's looking into it. I called the guy I hired to replace me at the Attorney General's office. He'll weigh in if we don't have an answer by this afternoon. I found a lot of Canadian websites where this drug is somewhat less expensive, but not cheap enough to afford on an ongoing basis. So here it is, this week's crisis. And I did nothing but sit here minding my own business, paying $800 a month for my health insurance, and doing my best to help other people solve their health-related problems.
Still, I can't get Joni Mitchell out of my head. Quoting:
It's comin' on Christmas.
They're cuttin' down trees.
They're putting up raindeer
And singin' songs of joy and peace.
I wish I had a river I could skate away on.
That's where I'm at. I "wish I had a river I could skate away on." I don't want to die -- I just want to hide. I want me and Emily and my house. I don't want to talk to anybody. I don't have anything left to give. I just want to skate away and not be noticed. Not die -- just escape to a place where the pain stops, and never stop to look back. Jennifer
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I'm astounded also. The same thing happens to me at Christmas or when my mom and brother are with me. Complete silence when I speak, like when the other team makes a TD then they resume talking like I never said anything. I can't believe someone does that to you. Same on the gifts but usually clothes too small and fruity flavored shower gel and I wonder why they ever ask what I want :-). I love *love* Christmas but not anymore. I'm rather be taken into it kicking and screaming because I know how it will be. A few years ago my brother beat me up because I ate 'greasy food I knew would make me sick'. He told my mom I must not be that sick because I didn't puke. He didn't act like himself and nobody in my family does since this has happened. Either it's because I'm a financial burden and they don't want to deal with it or somehow their true feelings come out once they can get away with it?
ReplyDeleteI'm not familiar with Joni Mitchell :-). But I'd like to escape too at least for awhile--from everyone.
TMI--I wonder how many people deal with it (thought I was the only one with this type of problem) but never talk about it.
Better and better,
RR
It was so familiar and sadly relieving to hear you talk about running away. I'm a fighter, or maybe a compassionate embrace-r with a fighting spirit, and I can't even believe I have a disease now (Transverse Myelitis caused by autoimmune) that is so overwhelming for me that I share your reaction.
ReplyDeleteI believe it's that mind-body connection of physical, mental, and emotional exhaustion and pain, that even when we place ourselves relative to people who are in much worse places than us, the feeling to run away--maybe to that place we were before the pain, maybe to a new place where pain does not exist, or maybe just to a place of nothingness; a chance to be invisible to ourselves to the changed reactions from friends/framily/strangers to the disease and its effects, to passively hide from the distress and even the gifts that come from being sick.
But I have to say, it's people like you, who advocate for and help people like us that make that urge less frequent and powerful. So, thank you for your candor and for your work.
And besides, most of us are too sick or too weak to really run anyway...or get anywhere worthy of hiding before someone could catch us:).
Best,
n