Yeah, I’ve been pretty MIA around here . . . and it could keep happening, I’m not making any promises. Life is so crazy isn’t it? I suspect everyone’s is. We are getting back into the groove of school and bedtimes and routines. I’m not too good with all that – surprise, surprise! I do make an attempt, but I’m easily distracted by bright shiny objects . . .
Okay, where was I? Yeah, there’s a lot going on. My sister is slowly passing from this world. It’s been difficult to handle. She has MS and it has been methodically shutting her body down. The last couple of years have just been a steady downhill ride for her. Today she lives in the rest home. She has a feeding tube. She can’t walk, can’t use the bathroom on her own, can’t move any part of her body except she can slightly squeeze her left hand just a bit. She can’t talk or swallow even a sip of water. She looks at me and I don’t know if she knows who I am all the time. Sometimes she’s there, and sometimes she’s somewhere else.
I’m in and out of the grief stages all the time. Sometimes I’m in denial. Some part of me is like, “oh, she going to get better.” It seems the right thing to think, people get better, right? It seems unfathomable that she won’t get better. But, you can’t think that when you see her. Sometimes I’m really pissed off. I’m pissed that the MS association is all, “This disease can’t kill you, blah, blah, blah . . .” oh really? Well then can you explain what the hell is going on with my sister, because she’s 40 years old and most 40 year olds do not live in the rest home and wear diapers and can’t even so much as cry out like a baby and tell you when they are hungry or in pain or ANYTHING. So explain that to me cheerful MS Association. It’s not their fault, I know, but I’m just pissed that no one seems to tell you that MS causes some people to suffer dementia – I mean there are lesions on their brains. Some people with MS will not “manage” their disease. Some kids with parents who have MS will not always have a parent. Not everyone with MS gets off with just being in a wheel chair. I guess that’s all I’m saying and I wish more people understood that.
The grief is overwhelming and unbelievable. It never seems to end. The person that I knew as my sister is gone. I don’t know where she went. I guess the MS monster ate her up. I miss her all the time. It’s hard to lose her because she is part of me – almost like a twin, a mirror of myself. My touchstone and depository of memories of my childhood. She’s the only one who knows some of the things that I know. She shared the experiences that I’ve had – she knows what they smelled like, and what color they wore and she could laugh at the inside jokes that no one else gets. She was my co-conspirator, my confidant, my rival, my friend.
Sure, I know she’s a caterpillar in a cocoon – I know soon she will be a butterfly – and for that I’m grateful. I don’t want her to suffer any longer. I’m ready to let her go for that reason, but I can’t say it’s easy. I can’t say I’m selfless about it. I can’t say I’m not sad, angry, sick, oh, everything about it.
I hope all is well in your world – hug somebody today.