Thursday, Oct. 14, 2004 | 10:58 a.m.



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Still More Coolness

How's This for Unfair?

Jeff's mother has multiple sclerosis and has been fighting it ever since I've known her, about 16 or 17 years. When I first met her, she could walk with the help of crutches, but that didn't really last long. She was in and out of the wheelchair for two or three years, and then the wheelchair became permanent, despite her efforts to stay out.

About six years ago, she started having episodes of confusion and this culminated in her being admitted to a care facility. She had to sell her small mobile home, give away her cat and sell all her possessions, giving the money to the state, who would then foot the bill for her care. She was left with some knick knacks and her pictures. Oh yes, and her tv and computer. Not much. She receives $75 dollars each month to pay her phone bill, buy her toiletries and anything else she might want. $75 isn't much.

The neurological issues have become more and more prominent. The confusion sometimes seems like Alzheimer's -- she forgets even who she is, let alone what's going on around her. This has worsened considerably in the past year, exacerbated by mysterious infections. It seemed like anytime a bug came through or she got a scratch, an infection ensued. It was confusing, because for the longest time, one of the side effects of MS was that she was rarely sick. She said it was because her immune system was in such overdrive, attacking not only invasive cells, but her own nervous system.

She's been in the hospital again for about a week. They called on Saturday to ask permission to give her a blood transfusion -- never a good sign. Yesterday they called to ask permission for a lumbar puncture (or "spinal tap"), but when Jeff started to ask why (after he had already given permission), the nurse pretty much cut him off. When he got off the phone, I asked what was going on. He didn't know. I told him to call them back -- if they are going to ask permission to do a procedure, then they can damned well tell us why. We know better than to let them get away with that shit. We learned that from Jasmine -- and her doctors never even tried. They always explained everything.

So he called back and asked for the doctor to call. This morning, the doctor did. It seems that one of Jackie's meds was suppressing her immune system, which is why she was getting every infection that sniffed in her direction. She has meningitis. Her confusion is so advanced that she won't eat.

And if all that wasn't unfair enough, Jackie recently signed a DNR document that stated she did not want any form of artificial feeding going on if she couldn't approve it. And the doctor really doesn't seem to think she's going to beat this infection, which means she will essentially starve to death. Guess who gets to watch?

I am speechless with sorrow for my husband. Speechless. And he is in shock. He just left to do a job interview because he said he "had to do something." I looked into his eyes and just wanted to kick someone for putting him through this. But who? Who? No one to blame, just life -- and death -- happening in its natural way around us. I just want to yell, to scream about how un-fucking-acceptable this is. We have had enough this year. And yet... the wheel turns. Can we maintain peace through this? Can Jeff? Gods, I hope so. If you have a moment to pray for us, we would appreciate it.

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Recent Entries ...
Go Here - Tuesday, Aug. 29, 2006
Short, But Sad Good-bye - Sunday, Oct. 16, 2005
Jasmine's Story ... Our Story - Friday, Sept. 30, 2005
Ache - Thursday, Sept. 29, 2005
Twists & Turns - Tuesday, Sept. 27, 2005

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