I wrote today, in a novel that I'm writing, the things I wish they would have told me when I left the doctor's office nearly a month ago.
What they didn't tell me is that life would never be the same again. That it would be like having no skin, to watch out for lemons and salty foods and sharp edges
In the first few days, few weeks, now, I realized very quickly there was nothing out there. There was resources on grieving when you've lost your parent, your sibling, your child, your dog, but there was nothing out there specifically for what to do when your world has been turned upside down. There was nothing about, "You will now feel this and this, you are not crazy. You will grieve, and it will hurt, you are still not crazy. You will throw things and cry and scream, and you are still not crazy." You get the idea....
They never told me I would become a wild thing, my nest gone, my sanctuary taken away. They never told me I would be the marker of when seasons passed, when it was another week that had gone by, another day, because I would be the only one who cared so much. They never told me grief would be so isolating and lonely.
Ever since day 1, I knew I wanted to write everything out, what I was feeling, what life was like... I never knew why, I just knew I wanted to capture it all on my blog, in novels, everywhere. Just in this past month, I have realized there is a great amount of silence surrounding grief in regards to a medical diagnosis. There is nothing out there, no sites with people who say, "I've been there too, this isn't all in your head, you can get through this."
I made a decision that I wanted to help break that silence.
If I could go back and tell that undiagnosed girl one thing, it would be to hold on to this moment. Being undiagnosed is hard and it hurts like crazy, but there is that blind hope, the possibility, the potential. If only i had known then...
I think one of the hardest things - besides the actual loss - is that voice inside my head, the one that reminds me I wanted this, I shouldn't be grieving or upset. I think I've said these words over and over in this past month, in emails, written them in my journal, whispered them aloud. "I'm just doing my best." I am just doing my best, and that has to be enough.
My goal is that I'll be able to raise awareness for the pain and grief that comes with being diagnosed. I know I can't be the only one.
As I was writing one night, the words began pouring out of me, and I began to write about this dream, this idea of a project so that newly diagnosed patients could know they're not alone. As I began writing, I began calling this idea my unicorn project.
In Private Practice, Amelia called her baby her unicorn baby, because when she was little she believed unicorns were great and magical and would help lots of people. (Her baby was going to die and she decided to donate his organs, FYI) But I knew that's what I wanted this project to be, something that would be great and help a lot of people, something good that could come out of all this grief I'm experiencing.
Newly diagnosed patients, patients who have been diagnosed forever, anyone out there with a chronic illness, you are not alone.
I wish they sent you home from the doctor's office with a candle. "For some light in your darkness," They would say, "You're not alone."