Life Goes On Without Me

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.


I know that feeling well, and you've expressed it beautifully.

That may be one of the things I like about this forum, connecting with other denizens of the Twilight Zone. It's like we live in this slowed down time, so that when only a few hours have passed for us, when we catch a glimpse of that other world, another year has elapsed there. But the twist is that we still age at the same rate they do.
We do age physically, but those of us who got sick younger, we seem to age a bit slower. We don't have that sun damage, or wear and tear. When you are stuck in the house year after year, it just makes you very pale.

Mentally, I'm a very strange paradox. Part of me stopped aging at 21, and another part of me aged a hundred years. It's an interesting duality.
Beautifully written, Carrigon. There are many dimensions to what is lost with this illness and you've captured the most elusive. Thanks for expressing it so well.
Thank you for describing my feelings so beautiful. We live in this parallel universum and while the cars pass my window I fantasize the life of the people in it. The real world is becoming more and more virtual to me.
It's true that I don't seem to age appropriately. Don't drink, don't smoke, don't party till we fall. Like you, my life is on hold. Every year I think, my life will begin when I'm healthy again. I forget that I'm alive at this moment.

I want to spin it on a positive. I got sick when I was 18 and have been as ill as you have been over the years. I vascilate back into feeling well from time to time, or I should say better. I always feel the same and like I wish I had an expiration date. Life does go on, but you have touched others lives. When I think of you, I always think of someone who is intelligent. You have a voice and do matter. You have a definite even though life moves on, I still feel your presence. You are more than just a body and skin.
"They" may not be interested in what you have to say, but I am.
I love the way you think and articulate so much in so little space.
You inspire me.
I'm glad you're here.
One of the challenges for me is comparing myself to "normal" people as little as possible. Life "out there" is so different, but even at our sickest, we do have lives and value. Our culture is so obsessed with what we do, how productive we are, how much we consume. As life has slowed down and shrunk, it is still life worth living. (I have said more times than I can count, "I can't do this another day", so I'm really talking to myself here, and hope maybe someone else is encouraged.) When I am able to read, I like to read biographies of people who have suffered much. Far from being depressing, those stories make me realize that beauty, joy, faith, and kindness are not commodities available only in prosperity and health. I am humbled and blessed by the lives lived fully in prisons of all kinds. I, too, feel like I don't fit, like I'm an alien, but I've found that when other people have hurts, disappointments, or griefs, I can in some small way reach out to them in compassion, knowing what it's like to lose something precious. You do matter!
this is exactly how i feel. i do not feel the same as everyone else. we will make our own path.
tonight I said I felt like the woman in great expectations...the one who gets trapped when she is jilted and the scene in the film has everything as it was on that reading your post really resonated

its been a truly horrible day (I told my sister I felt that she supported others but had not been there for me and that I was unhappy about it).....what was I thinking (of course I was in a wired/tired...totally out of it)

just had her explode on me which is what happens everytime I try to talk about my needs

I am just learning how to be in the world a needy person and I am obviously am not doing it right because I get some very strange, unhelpful and hurtful responses.....I think its the F word and people don't get it....but it could just be me

Rang a few people who were able to listen to me blab (adrenaline still not run out) and seem to have some sense of self left beyond the illness

My illness started late 20s.............. 18 months after the end of LTR and even though i kept going and trying....never really got it together to build the life I would have liked....

That said I'm more fortunate than some and hope that I will be able to count my blessings tomorrow
Its the next day and I feel blessed. I am not Miss Haversham in Great Expectations and I count the blesssing that at least brought the internet a long with the DD so that we are not alone. In fact we have a world that is moving on in its own way. Today I am grateful I managed to travel in my early pre-illness years so that I do have the memories. And when I watch TV and I see what some people are doing I think to myself that I am well out of at least some of it.

Your post reminded me that I need to find new people and let go of the old (at least the ones who don't get it). It takes far too much out of me. Maybe I will get enough energy to have some new people to relate to, people prepared to learn about the illness which is actually what my sister does not want to do. It will be a small world but a world of my own.
As Sandgroper wrote 'It will be a small world but a world of my own.' My world is sometimes very beautiful and rich, essentialised into a small cup of being. While my friends have grown through external and reactive events, I have had to grow through isolation - both physical and existential. It's quite frankly, depressing. But I wonder if I would have experienced so much joy in simple things if I had never been unwell?

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