Decade in review



Some sister missionaries from church stop by my house to say hello. I invite them in to talk. They ask how I’m doing, and if I’m interested in coming back to church. I end up agreeing to meet with them to talk about my struggles with church and my desire to reconcile them.

We start meeting weekly. I open up my heart to them. They listen. Patiently. We laugh together a lot. Sister Owen has to go home because her ankle is broken and needs surgery. Sister Bristow and Sister Calvert continue ministering to me. They’re lovely, and patient, and don’t expect a cookie cutter Mormon out of me. They tell me The Church needs me, my spirit, and my opinions.

No one from church has ever told me that before.


I tell Mom that I want to visit Erin, and that I want to drive up there. This is my first solo road trip–driving used to terrify me. Now it excites me. Mom gives me the go ahead, as long as I take backroads.

Erin and I have set routines together–we watch trashy television and go to Wawa and Target. This visit I get to meet Erin’s new corgi, Wembley. We go to the King of Prussia shopping mall. POTS is overwhelming me and we take lots of breaks, and Erin is always patient with me.

We go to a bar and watch the Winter Olympics on the different television screens and eat appetizers and I’m so happy and so content, I can’t think of anything better.


I see a job posting for a new Custom Ink store in Leesburg where I live. I’ve always been interested in Custom Ink ever since my friend Ashley started working there in Charlottesville. I apply immediately.

A week later I have a job.


I travel to Nashville by myself for DysConf. This is the first time DysConf isn’t in the DC area and it feels completely different at first. But once my conference family starts showing up, like Elyse and Amanda, it’s back to normal.

Amanda is running the study this year–I’m her first or second patient in the study, and I’m declared the patient who complained the most. Good. Cognitive function tests are hard.

I go downtown a couple of times with Lauren and the Dysautonomia International crew to see sights and get dinner. I sit across from someone who orders hot chicken and that’s the closest I ever need to be to that dish.


I start attending a church congregation comprised solely of young adults aged 18-30. My parents jokingly call it “the meat market” as most people go there looking to find someone to marry–my parents met each other at a young adults congregations.

I don’t find anyone to marry. But I find some friends who think I’m nice and laugh at my jokes and invite me to game nights.


Pizza Party goes to Hampton again for one last hurrah before Sara moves to Seattle. I have been heartbroken every day since she took the job at Amazon, but I only want what’s best for her.

The weekend is a testament to perfect timing. The minute we get all of our things out of the car, it starts raining. After our first full day at the beach, I look up at the sky, tell everyone it’s time to leave, and when we get packed up in the car, it starts storming. It keeps happening. It’s weird.

Saying goodbye to Sara is horrible. I’m numb when I go home, but cry over the next few days. She’s on the other side of the country. This sucks.


Awareness Month is big.

I run the online auction for Dysautonomia International again. I arrange for Leesburg to declare October Dysautonomia Awareness Month. Jenna and I help Lauren run the Dysautonomia International booth at the American Association of Neuromuscular & Electrodiagnostic Medicine conference at National Harbor. We light up National Harbor’s ferris wheel turquoise… except there’s a torrential downpour on the day we planned to do a group photo.


Nate, Leah, and Will are back from China and are in Williamsburg for the holidays. I drive down and join Leah’s family for a visit to Busch Gardens’ Christmastown. On the way there, I make an impulse stop in Richmond. My heart is racing the entire time I take the familiar exit. I have three goals:

  1. Walk through the compass (the central part of campus).
  2. Look at my old dorm.
  3. Buy a VCU shirt. I never owned or wore any VCU items as a student–I’m going to change that today.

The campus began undergoing renovations while I was a student. My dorm was torn down and has been replaced with a high rise. The library is completely different. The buildings are taller and newer and stronger–

And so am I.

4 Replies to “Decade in review”

  1. 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

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