#ihopeblaisecallsme

My friend Jen is a firecracker. She has taught me a lot about a lot of things, proclaiming she swears too much. She writes these incredibly honest essays that make me reflect back on my own life, and want to be more honest. She has a way of making me unafraid.
I've never met Jen, but if you asked me for a list of the most influential people in my life, she would definitely be on there. And on my bucket list is to go practice yoga with Jen.
Jen's nephew Blaise has Prader Willi Syndrome and Autism. Blaise has taken to calling people. And while he doesn't mean anything bad by these calls, there have been people who have gotten upset.
Jen's sister started something that can only be described as a movement called I hope Blaise calls me. It's a group of people showing their support for Blaise, but also people who want to spread the message of acceptance.
I've spoken out about my feelings before on the idea of acceptance. I've gotten loud and proud about my own health situation.
I'm learning my voice can make a difference.
So right now I'm speaking out about something I believe in.
I believe in the message of acceptance, and I believe in making a difference.
I believe that when people come together, great things can happen.
If you want to get involved with the #ihopeblaisecallsme movement, check out their facebook page

The Invisible Moments

My life is measured by the invisible moments.
I live life with an invisible illness. I live my life in the middle of the invisible loss that comes with them.
I am continually amazed at the silence surrounding invisible illnesses. There's constant awareness in the news for things like cancer (Anybody else see all that pink this month?) and yet, while 96% of people with an illness have an invisible one, the awareness for all types of invisible illnesses is small.
Why did I not know about this before the sacred was taken from my life? I want to ask. Why is there such silence surrounding invisible illnesses.
I have a theory. It has something to do with being invisible. It has something to do with a quote I read once:

People anoint bodies in hospital beds with words like “fighter” and “miracle” and “goddess” because of the cultural urge to wrap up formative life events with neat little bows. But in doing so, they silently demote everyone else who dies. Or who screams for an epidural, or who falls apart at the incubator of a one-pound child.

We do not exist or fail to exist — or birth and "fail" to birth — because some are stamped with a rubber imprint of GOOD or STRONG or WORTHY and some are not.

 

I think the same thing goes for invisible illnesses. We wrap up people in hospital beds with words like fighter and miracle. People with cancer (Just using this as an example) when they go into remission, or even when they don't, they are anointed with the words "Strong" and "Fighter" even "Survivor." They beat the odds, they survived this horrible, awful thing. I'm not saying it's not horrible and awful, because it is. I've lost loved ones to cancer, I know what it can do.
But what about the ones for whom there is no cure? Are they somehow less worthy, less of a fighter, possess less strength?
We're so vocal about diseases like cancer and the people who survive them, and the people who don't. But, I think, in doing this, we do silently demote the ones who won't have a cure, who fall apart at the huge struggle before them in living with an invisible illness.
We do not fail to survive, or fail to fight, just because some are stamped with the sign of "Survivor" and "in remission," and some are not.

My life is measured by the invisible moments. I live my life by these invisible moments. When the diagnosis of an invisible illness comes, it seems there is an urge by society to wrap up this loss and stick it up in the closet, on the top shelf, where it, too, becomes invisible.
I live my life in the invisible moments. I want to be a voice and help make those invisible moments a little more visible.

You are no less of a fighter, or a survivor, with no cure, with no remission, with no awareness. Your fight is not invisble, and neither is your loss.

The Unicorn Project

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."