Wednesday, March 26, 2008

How to Remain Friends With Someone Who Has a Terminal Illness

At my support group Monday our facilitator provided a little insight, which was sad for me to hear, but I had to hear it to make sense of something I have not been able to make sense out of for a long time. You see, at this time last year I was seeing a lot of people. Other bunny moms, friends from the neighborhood, and friends from before, and even a bunch of people from the ALS community. So I posed this question Monday night. I said "in the first two years of ALS, I had so many friends who stopped by. We went to lunch, had tea together here, or even just went out for a walk, or just hung out here. I got emails from everybody. So many people cared, and now I hear from nobody. What happened??"

Well Toby, our facilitator said "many times, people don't want to keep up a friendship with someone they know they are only going to lose" It opened my eyes. I have gotten those "I'm sorry I haven't been around but life is so crazy" emails. Now I get nothing. From anybody. Whole entire weekends go by when I see nobody except my aide. If it weren't for my Jewish Family Services volunteer Judy, I would never get out of the apartment except for medical appointments. I9 can appreciate people being busy, but everybody?? And when I did speak to people, they mentioned going to the theater, out to dinner, parties etc. But suddenly for most of my friends and family, I don't even know what is going on in their lives. This left me with a lot of questions-- What did I do to drive everyone away? Am I that tough to look at? Are they really so so busy? I bought it for a while and waited for their crazy lives to calm down, waited for them to come around again. It never happened. All summer I barely went outside. Fall was worse, winter unbearable.

So, what Toby said, is making sense. I hung on the promises : "We'll go to the city/a museum/a movie/the beach/the park....etc." There were even people who said they were coming, and never showed. I got cards, emails, comments on my blog. They loved me, thought of me, prayed for me. So now I know the truth; they never intended to see me. I'm going to die anyway. Except I'm still here. In the meantime, other people died, people who weren't supposed to die, who weren't terminally ill, or they moved away, or got married, or had babies. So here I sit with the sad knowledge that these people are gone. Their lives are never going to "calm down", the visits won't happen, the outings won't happen. Okay, okay so I have to move on. But where?? I try to break up the monotony by playing computer games, savoring what outings I do have with Judy, the connections I make at ALS functions [where I lose people to death too]

Where do I go? What do I do? How can I meet new people? How do I go places and do things when sometimes a grumpy aide is my only companion, an aide who is into hiphop, Lifetime movies, and has her own life?? There are so many hours one can spend online, so many hours of computer games I can play. Just so many DVDs I can watch. And the little things I could use help with, use a friend's input with -- pictures I want to hang on my walls, organizing I want to do. Just to have someone to drink tea and eat cookies with, sit in the park with, etc. I am also stuck by my own inertia-- it's depression. And yet I feel lucky to still be here, even if there is still a part of me that waits now that the warm weather is here, for that friend's life to "calm down". I just don't know how to get myself to feel that I am doing something worthwhile. Toby said I shouldn't take it personally, that it's not me. But it IS me.

Anyway, I found this on a site for cancer patients. Some of it applies to me, but some doesn't [for instance, I am not going thru chemo treatments. But the message is universal

It's called "Remaining Friends With Someone Who Has a Terminal Illness" and gives tips to the person who says "what do I do/say?" If you still don't want to remain friends with me, fine. But the article might help if you have another friend or family member who has a serious illness.

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