One of the hardest things for me to deal with when it comes to this disease is the passage of time. In a very strange way, because I got sick at age 21, I'm somehow stuck at that age, in that time. Time, for me, has stood still. My life stopped at age 21. No more work, no more college, no going to family weddings and parties, no nothing. It's like someone boxed me, just plain wrapped me up in a diseased bow and boxed me in a closet or attic. And then I'll see that life for other people has gone on, totally without me. It's so very strange.
Friends and family have gotten married at weddings I've never attended, had kids I've never met, moved, bought new homes I've never seen. They've gone on vacations and had parties I've never been to. Even smaller things, they've gone shopping for things I've never seen, been to sales I couldn't go to. And it's such a very strange feeling. It's like having been away or offworld for years and then you come back briefly, only to discover that everything and everyone has changed, except for you. I'm no longer a part of their world. And they don't seem very interested in having me be a part of it. Since nothing has changed much for me, I don't really have much to contribute to conversations. And they often seem annoyed by my ghost like presence. I'm an apparition that occasionally haunts their lives. A long ago distant memory, an annoyance. Something that doesn't really make sense in their world, since they get to live. I just don't fit.
I feel like I live in this strange Twilight Zone world where sometimes I get a glimpse of things that have passed, but nothing I've been a part of. I'm missing so much life. So many things. Life simply goes on without me in it.
Friends and family have gotten married at weddings I've never attended, had kids I've never met, moved, bought new homes I've never seen. They've gone on vacations and had parties I've never been to. Even smaller things, they've gone shopping for things I've never seen, been to sales I couldn't go to. And it's such a very strange feeling. It's like having been away or offworld for years and then you come back briefly, only to discover that everything and everyone has changed, except for you. I'm no longer a part of their world. And they don't seem very interested in having me be a part of it. Since nothing has changed much for me, I don't really have much to contribute to conversations. And they often seem annoyed by my ghost like presence. I'm an apparition that occasionally haunts their lives. A long ago distant memory, an annoyance. Something that doesn't really make sense in their world, since they get to live. I just don't fit.
I feel like I live in this strange Twilight Zone world where sometimes I get a glimpse of things that have passed, but nothing I've been a part of. I'm missing so much life. So many things. Life simply goes on without me in it.