High Hopes

This time of year can be hard for me. It’s when the reminders of the life I thought I would have come back to the surface, and tug at the thread that I’ve gotten better at tucking back in.

It’s hard to say where the beginning of the destruction of that life actually fell. Was it the day I lost my job? The day I finally got diagnosed? The day of my first major flare? The day I realized it wasn’t going to go away? Those were all a progression, a slide into irrevocable, ugly change. I didn’t recognize at the time how dramatically this disease was going to fuck everything up.

But the reminders of the onset of illness aren’t the hardest part.

The hardest part is being reminded of the hope that came before it.

Looking back now, I’m startled by how much time has passed. It’s been seven years since that awful summer that ended life as I knew it, and the future as I planned it. I’m nearing the end of my 30s. I have no idea what the future holds, but I do know the one thing I really want seems less attainable every day, and I have no idea how to make the next 30 or so years feel worthwhile without it. I don’t know how that can ever be a future I want.

I feel like the last seven years have been a way station that I’ve been trapped in, waiting to have a real life again. And a real life feels unattainable to me now. I can’t work a full week without needing to sleep at least most of one day to recover. I am barely able to stay on top of everything I need to do. I get through the day to day with distractions – work, Netflix, cuddling with my pets. And sleep. Whenever I can.

It’s just surviving, though.

I don’t know if I’ll ever be able to thrive again.

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