2014
February.
I have tickets to see a test taping of The Tonight Show with Jimmy Fallon. Dad and Mike can’t get work off, and Mom gets sick. So I go to see it alone.
I’ve been to New York probably a dozen times, but never alone. It’s cold, there’s snow on the ground, and POTS is kicking my ass. I know that I can do whatever I want–this is New York after all, but I stay at Rockefeller Center because I don’t want to run around the city and rush.
I almost pass out waiting in line for the taping, I almost leave several times, but I’m glad I stay because the taping is wonderful.
Afterwards I go to Junior’s and get a grilled cheese and a slice of cheesecake and am glad to be back in my bed that evening.
March.
I’m taking a graphic design class at NOVA. I’m supposed to mount and press my latest project. I’m using the industrial paper cutter and suddenly my finger feels something sharp. There’s blood everywhere.
I’m the first student in the school’s history to slice their finger open on the paper cutter. I’m not sure how I did it. My professor brings it up every class for the rest of the semester.
The constant attention alone makes me nearly drop out.
But I pass.
June.
I’m not at rock bottom, but I’m close.
My psychiatrist says he wants me to have electroconvulsive therapy, better known as electroshock therapy.
This is sick. This is disgusting. I want to report my doctor for medical malpractice–he’s the crazy one if he thinks going Sylvia Plath and One Flew Over the Cuckoo’s Nest is a good idea.
We call my therapist. She calms me down. She sends me articles about ECT–some favorable, some against. She and my mom make me promise “no Googling” because we all know what happens when I go down the internet search rabbit hole. My therapist provides me with more articles and I read them so many times I nearly memorize them.
June 6.
Two days after being told I need to restart my brain with electricity, I start an internship with Dysautonomia International.
It’s a standard internship: make copies, stuff folders, file papers, price out merch on different websites. I go to grocery stores with the other intern Jennie to ask for donations to the conference’s hospitality suite. It’s scary and vulnerable to go to dozens of stores, pitch our cause, and ask for free stuff, but it teaches me to lobby my organization. These skills come in handy later on.
July.
DysConf Year 2.
I spend the entire weekend on my feet. I’m handing out schedules and telling doctors where to go and keeping parents out of the Continuing Medical Education Physician Only sessions and copying papers, again, and again, and again, and selling merch, and setting up for dinners, and any time someone needs something, I raise my hand and say I’ll help.
Because I love it.
Lauren calls me “Kick Ass Intern” and while I feel exhausted and like I might collapse, I haven’t felt this fulfilled since I was in high school doing newspaper.
We have Lobby Day on The Hill and it’s the hottest day of the summer and I’m in the Virginia Group. Dr. Chemali, who isn’t even my doctor, runs around Congressional Office Buildings looking for a place for me to sit because I’m the only POTS patient in the group and everyone looks at me like I’m going to faint. We sit in a stairwell and the moms who are there to lobby on behalf of their children tend to me–caregivers without anyone to care for–and I know I’m in the right organization.
Shortly after DysConf is over, Lauren and Ellen invite me to join the Patient Advisory Board.
I say yes.
August.
After research, after discussions with my therapist and parents, after hours of journaling and thought and prayer and meditation, I decide I want to go forward with ECT.
I talk through the decision with my therapist–I tell her how optimistic ECT makes me, and I paint the future I believe it’ll give me. She starts crying tears of joy. I have never seen her cry before.
We start making arrangements. I begin my consultations with Fairfax Hospital and have to list every single medication I’ve ever taken. It’s easier to list the medications I haven’t taken.
I have an appointment with my cardiologist who manages my POTS. We tell him our plan.
He freaks out and says no, no, no, and no. He will not sign off on this. My autonomic nervous system is not stable enough for this treatment. He will not allow it. We have to find something else. He will work with my psychiatrist to try to figure something out, but it will not be ECT. Not now.
Back to square one, because yesterday was the last day to register for fall classes at NOVA.
Fall.
I keep busy.
I see The Daily Show with my mom and cousins. I make graphics for Dysautonomia International. I go to a BJ Novak book signing on my birthday. I go to a wedding with my brother and our friends. Erin comes to visit. I visit Tori at JMU and make very questionable decisions but enjoy the freedom of being 22. I see The Colbert Report for the final time. Erin visits again.
I’m passing time.
And every day I think about how badly I wish I could have ECT. I think about the promise it held.
My therapist keeps me focused on what’s next.
I’m so proud and happy and grateful and smiling to be your mumma. Love you forever, my babygirl. ❤️
Every. Damn. Word. I love you ?
WoW is right cousin! You have such a way with words and tell your story well love!
I love you so much! I also love and cherish your mother. I am fond of your dad too I do not know your brother since he was pre-school . However he comes from good stock so I know he is terrific as well. I needed uplifting and reading your entries was a blessing to me.
I appreciate the honesty you share with the reader. My wish is you continue to write of your challenges and success. I strongly feel this is your mission in this life. On the other side you will meet strangers who will share the blessings your courage helped them through their trials. I love you. I love your mother. Sandi Cook