2019

January.

I start my new position at work. I was promoted a week before Christmas. I have a longer commute but more responsibility, better pay, and benefits. Having health care changes everything.

Not only do I help people design custom shirts, I print them same day.

It’s a complex process, but I’m good at it.

March 21.

Mike, Jose, and I go to Seattle for Sara’s birthday. I make us matching shirts with Sara’s cat, Freddie Mercury, on them, and we’re wearing them when Sara picks us up at the airport. She laughs so hard and our group is whole again when we’re back in her car.

I fall in love with Seattle immediately. The view from Sara’s apartment is unreal. Her friends are great. 

We find the most amazing food at Pike Place Market, I fall in love with the beach Sara brings us to, we shop for new furniture for Sara’s apartment, and we watch the most outrageous documentary. I fall asleep watching television with my family every night–they understand me on a level most people don’t.

I want to stay forever.

March.

My friend Krista shares a makeover and photoshoot giveaway her friends Audrey and Tina are doing for women in need of pampering.

I’m afraid of admitting it, but I’ve always wanted a makeover. I’m afraid of admitting so many things, like the fact that I want to be beautiful, because I’m not That Girl. I’m the girl who doesn’t give a damn about looks. I’m the girl who’s above it all. I’m the girl who makes the snide, cynical comments because that’s safer and less vulnerable.

I nominate myself and they pick me. Audrey does my hair and makeup, Tina takes spectacular photos, and the end result is incredible but makes me uncomfortable because is that really me? She’s beautiful! I’m beautiful!

But at the same time, I’m still sad because the girl in those photos is fat, I’m still fat, and no matter how much makeup Audrey puts on me and no matter what poses Tina puts me in, I’m still fat–

And what does that say about me? Am I still worthy of love and time and space as a fat person?

I’m still learning to accept myself. It’ll be a while. But this experience has propelled me forward.

June.

Tori has a going away party. She’s moving to Colorado. It’s weird–she’s been the one I can rely on in this state since we were 16. I know this is good for her. I know this is what’s best for her. But I’m so terribly sad.

Summer.

I stay with Erin twice in Philadelphia. Once to see Jenny Owen Youngs, once for the Race to Beat POTS. Erin is slowly becoming a part of the dysautonomia community as I weave her into all of my events.

Emily invites us to a pool party the night before The Race to Beat POTS and it’s so fun and I love Emily so much–I don’t know exactly how or when she became one of my very best friends but I’m so glad she did because she is one of the best people I know.

July.

Amy, the first friend I made in my church congregation, posts that she’s looking for a new roommate. I know I want to move in with her instantly.

I spend the whole day crunching numbers and building budgets and it looks nearly impossible but I make it work and within a week I’ve agreed to move in with her the last week of September.

It’s amazing, because I’m fulfilling the promise I made to myself months earlier, that I’d move out of my parents’ house by the end of 2020. I’m a year ahead of schedule.

July.

It’s DysConf time. Mom and I arrive late. I’m helping teens sign in for POTS Pals when Natasha says “Congratulations, Shannon!”

I’m being honored with the Amelia Moore SPARKLE Award for Compassionate Advocacy.

Shira was the first person to receive this award in 2016 when we met. I knew I wanted the same recognition immediately–not for the attention or the pride, but because I wanted to be worthy of it.

And today, the community of people who have built me up over the last half decade believe I am. They believe I have put in the work, that I have advocated for this community, that I am worth being seen.

August.

I come back from DysConf. I’m exhausted.

I’m at work and my manager asks me to call her. She tells me my store is closing, but no worries, I still have a job, she’s moving me to headquarters to be on the inbound phone sales team.

I know she had to pull strings to make it happen–and I appreciate her so much. Within a week, my store is closed, everything is boxed up, and one chapter of my life is done. And I’m excited for my new position.

August.

My new team at work is hardcore.

It’s a brand new team. Almost everyone started in February of this year, and already we’re the top sales team in the company.

It’s intimidating. But they’re welcoming, they’re funny, they’re helpful, and this is going to be great.

September.

I move in on a Sunday. Mike, Jose, Sara, and Erin pay for a team of movers who relocate my boxes and bags full of belongings in just two hours. I spend the day unpacking and sorting and grocery shopping and getting extra things at Target–I treat myself to a fancy new toothbrush I’ve always wanted–happy birthday to me!–and I feel so grown up.

My mom and dad come to my apartment that evening with flowers and goodies for me. My mom brings me her teddy bear that she’s had forever–a teddy bear I have been trying to steal from her since I was a baby. She tells me that she wants me to borrow it until I’m settled in.

I’m determined to return the bear to her some day. But not before I’m ready.

December.

A story comes out about my church. Allegedly, The Church maintains an investment fund that is untouched, it only grows and gains interest, worth over $100 billion.

My heart shatters. My church taught me to be generous with my time and resources, to be transparent and honest in my dealings with fellow men, and not to hoard riches.

The Church and my friends who are members tell me all of the reasons why it’s OK, why it’s not a big deal, that The Church is just preparing for the future so they can always provide for those in need.

But I can’t justify it. I am unsettled, I’m uncomfortable, I’m not OK. This amount of money is unconscionable to me when people choose between food and bills on a daily basis, when medical coverage is not a universal right, when the earth is literally on fire.

It breaks my heart, because there is nothing I want more than to be a part of this Church. My ancestors built this Church. They sold everything they had to travel across oceans and plains to build up temples and churches for this faith. This Church belongs to me. It’s deep within my blood.

But I don’t think I believe in The Church, and I don’t think The Church believes in me.

Closing scene:

Sara is in town for the holidays, so Pizza Party will be together. We’re continuing our tradition of eating ribs and watching Year In Review videos–we’ll be watching the Best Fails of the Decade.