Friday, November 17, 2017
Nothing. I got ill at eleven and life turned upside down inside of myself. I got ill again at nineteen and everything felt like it was collapsing. I got my tonsils out at Children's Hospital at 19 and I remember the warm blankets, waking up and vomiting ice cream and pain lots of pain. After about 2 weeks of no talking, one of those little flip boards that you could write on with that little red plastic pen and pull up and what you wrote disappeared...after pounding "screaming" words into that after 2 weeks of chicken broth something magical happened I began to remember what it felt like to live in a healthy body. Not from a month prior or two or three but way way back from pre eleven mono. And then somewhere into my 32nd year it all started coming down again and this time I can't get back.
What do I know for sure, about treatments nothing. I question my decisions my doctors my referrals myself every single day. Because here is the thing; no one knows. I head back to Phoenix in a few days filled with trepidation and a bit of how much longer can I do this. People see me, I pull it together for an hour they don't see the collapse when I get home. My mom making me scrambled eggs, me shaking in bed, only two hours later to break out into sweats. The next day my legs feel like they slept in cement, my head too tired to turn, my body too tired to eat. So I go again - I leave my life to try and re gain my life.
There is a wave of momentum with this illness; at least in the film, in awareness, in people's stories...hopefully it will translate to studies and treatments. The most promising for me is looking at the cellular dysfunction. This is how it feels and also explains the light switch effect I will call it, going from feeling like my old self for this momentary time and then as quickly collapsing to a body unrecognizable. I will say with all the attention I have empathy for those with the big illnesses...the big C for starters, where it seems there is no getting away from it. All the ribbons and walks and pink - see that I would find a bit claustraphobic - or a forced joining in a club I didn't want to be a part of, hell I didn't like Girl Scouts...many find comfort in the solidarity and that I get but your illness splashed on TV, stories that mimic yours but yet aren't you...I don't know sometimes that too seems to be just too much pressure.
The film I felt pressure, like why couldn't I do this illness and some amazing project. How did this person get healthier - what should I be doing differently. What am I doing wrong? I shudder that we lost an advocate on the heels of this new found hope. Because hope and awareness without cures or relief can feel for me at least like a whole lot of pressure. I don't know what Lara felt, I didn't know her but I saw myself in her. She created a fundraiser for the Open Medicine Foundation in honor of her birthday, just weeks before she took her own life. She was my age. She was a mother and a wife, a daughter and a friend. She went to two Unrest premiere's traveling and meeting Jen. She sparkled in her photos, she looked like so many see me, alive. I don't know what pushed her in that moment, but it scared me. I know how it feels when everyone is chasing different cures and some get better some get worse the demands on your family and friends the life that you worked so hard to gain slip year by year slowly become defined by these tiny little moments of success that most can't even see. I don't know Lara but I know she did her best...in my gut in my heart I know she did her absolute best.
So I will fly West - continue what I have been doing...trusting I am making the best choices that I have learned from inhabiting this vessel for the past 45 years and maybe just maybe that switch will stay on. That's all I really can know. Isn't that the greatest lesson to recognize what we do not know...I don't know what is going to get me better or what may make me worse. I just know that I have a choice - a choice to keep trying. A choice to honor the life before this took me down and find a way to be joyful and proud of the after.
I know to recognize moments of perfection and hold them close when so many other moments feel cruel. Yesterday Sophie was sitting and crying under her breathe. She normally doesn't like to be petted when she's a bit confused at night. But for some reason last night I went over to her and put my forehead to hers to tell her best I could we're okay. You and I this night time Unrest, we are okay. She let me put my head to hers and kissed me above my cheek and her little sandpaper tongue swiped my eyelashes...and time stood still and I thought this moment I am caring for you as you have cared for me - I know that is something beautiful that I know for sure.
In memory of Lara Henderson