A few days ago, I posted that I was going to start being more open online about my illness. Today, someone sent me an article from npr that - when I read - I broke down and just started crying. One if the lead researchers at Stanford has an adult son who is affected by this illness, which is fueling his passion for answers They believe they are making headway (details in the article at the end), but the answers may be more than a decade away.
The article comes on the tails of this documentary Unrest (trailer above) and the momentum Jen Brea (the director and star of the documentary) is driving for this illness. She is an absolute bad ass by the way.
I’ve been in contact with Jen, and she seems excited to speak to me. I hope to have some resources directly from her to share with you all soon.
My best friend (who also happens to be someone I lived with for 4 years) sent me this video a day or two ago. It made him cry because he finally feels like there is hope and like I am not alone anymore. That’s how big of a deal this all is.
I’m having a pretty tough time right now physically. I’ve mentioned to some of you that it’s getting pretty bad, and I plan to make a more robust post with details about my experiences and resources (especially those that Jen gives me), but I wanted to share this video and the article because I am so excited. I feel hopeful for the first time in a long time. I am actually going to try to get into this program at standford where they are doing this testing. I understand there is a very long waiting list, but a decade is probably longer. And I’ve already lost a lot of my 20s to this. I might sound whiny, but I am so ready for this part of my life to be over. And I’m willing to do a lot to try to make it happen.
You can help. By watching this trailer and then the documentary, you add to the “awareness numbers.” The more awareness, the more pressure for funding (as we are seeing this year) and funding=research=help. BONUS: help=less 💩 emojis from me.
You and your brother are heirs to the throne, but because of unrest in the kingdom and several attempts on your lives you are being sent to live with a relative that neither of you knew you had. You certainly didn’t expect them to be the captain of a pirate ship.
ALONE WITH A DREAM OR TWO… EXHAUSTED MIND IN UNREST… NO LOVE GIVEN IN A LONG TIME… A JOURNEY WITH NO END… NIGHT TRAIN’S RESTLESS POUNDING IN MY BRAIN… ESCAPE TONIGHT, ANOTHER ADVENTURE LIES ON MY WAY… ANOTHER JOURNEY WITH NO END… CONDITION UNEVEN LIKE THE FROSTBITE’S GRIM COLD GRIP OUTSIDE….
Rise Dark Lord Satan … the Earth is in transition … the dark consumes the world … changes occur on the realms beyond the mortal sphere … the very elements of our world rage … countries divide in conflict … rebellion lies in the hearts of the oppressed … fear in the hearts of the tyrannical … you can feel the unrest in the world … feel the tension on the dark night air … the rapture is upon us … the Dark Ones walk the Earth … and the time of our Brethren draws near … .
I want to sink my teeth in and feel as flesh is torn. I want to intake the taste of blood and wreak havoc. I want to dig deep into the earth and feel my body crack and crumble. I want to know the body of another. I want to feel the sting of winter winds against my bare skin. I want to know what it’s like to have your heart racing with endless emotion. I want to crush and destroy. I want to caress and protect. I want there to be an unending sea of emotion that continues to wash over the world and it’s people as we ride along. I want to be alone and yet not. I wish to look into their eyes and know them deeply. I need that feeling once more to return to me. I want that fire. I want nature to one with me again. I want to steal it all away and give it all to the one. It is chaos within me. Boundless emotion tied into inexhaustible energy. One way in and one way out. To be tamed or to be conquered. To find peace or incite war. I want to know. I want to see. I want to hear. So give it all to me. Let me thrive in another. Let me behold and become part of you. Let the fires reign and the tempest turn. Let the rains cascade and the earth move. It is never to end. It is limitless. And let it be. Until death do us part. And forever more.