What my disease really took

I’m going to be 34 this year, in just a few short months.

Life right now is different than how I imagined it ten years ago.

Life is different than how I ever imagined it.

I don’t think anyone sits and wonders what their life would really be like if they were ever diagnosed with a debilitating disease. Sure, we make idle remarks about how hard it would be, but no one ever truly believes that it would happen to them, or a loved one.

But then it does and the world turns upside down and everything you knew or wanted fades away to a memory. It sits in a dusty picture frame on a forgotten shelf in the back of your mind along with all the other things you’ll never accomplish.

I used to entertain a lovely dream about meeting someone. Or maybe I already knew them. But in this dream time had stopped and we had realised our perfectness together, and so that all was right in the world. They thought I was the most beautiful creature, just as I thought they were as well. We would sit together in silence, holding hands, and smiling in the knowledge of how lucky we were that we had found the meaning of life.

Then when I got sick my dream started to change. Now it was that this person didn’t care that I was ill, and just loved me all the same. When they looked at me all the pain and suffering would melt away, and I would no longer be a girl who was sick. I would just be a girl. A girl who a boy fell in love with.

I don’t let myself think about that dream anymore, not even the newer one. I look in the mirror and see the face that everyone else sees, the face that he wouldn’t want to see. 45 pounds of steroid weight around my belly, legs, bottom, and face. A pain that never goes away, even when treated with a smile. An air of sadness that I can’t hide no matter how optimistic I act. Tight and shiny purple knuckles, legs covered in black and purple varicose veins, a body that rebels against itself at every turn. It’s not what anyone looks for in a mate, I know. I don’t let myself entertain the dream anymore.

Instead I keep my days full. I keep a tidy house, I cook and bake for friends who want it, I play with my cats and feel comforted by their never waning love and devotion. I feel happy for my friends who have found the life I yearn for but can’t have. I congratulate the news of new life, of new families, of love that was meant to last for someone else.

But I don’t let myself think about what I’ve lost. The part of my disease that no one realises is the worst. The loss that is never talked about because it hurts to wonder about something I can’t have.  The someone I will never have. What my disease really took. The one hope I’m not allowed to dream about. The life I lost when I got sick.

If you would like to help me stay on my feet and live happily and not homeless, please visit my campaign and make a donation to my fund. Thank you.

Christine Lilley’s Life Fund

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on August 22, 2015, in The Journey and tagged , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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