A few days ago, the guy who I’ve been talking to shared with me that he would be playing at an open mic night in Auburn, a college town a couple hours away from where I live. My first reaction was joy. Of course I wanted to see him play. An outdoor show. I had nothing else going on Saturday to take up spoons. He could drive me there and back. I told him I would ask my parents. I was excited.
And then the anxiety set in because ‘oh yeah, we’re living in a global pandemic, and I’m really quite sick’, so…I ghosted him. For two days.
Then this morning–the morning of the show–I woke up feeling good. The kind of good that I hate to waste. So after five missed calls and seven unanswered texts, I decided to be super cute and text this guy like I hadn’t dropped off the face of the planet two days earlier in the middle of making plans. Like a good sport, he responded without being mad, and he answered all of the questions I threw at him about the gig.
We were going to leave at 2:30, head to Auburn, the music would start at 6, the competition part would last until 7:30, and then the winner would play until 11. If he didn’t win, we could leave before then. The event would be outside at a cigar bar. He could get me in even though I’m not yet 21 because he knows the people in charge. We would tell people to keep their distance if they got too close. He kept telling me all the ways that it would be okay, but I kept holding off on giving him a firm decision. Everything was going to be totally fine. I kept telling myself that as I started to get ready–still not saying yes or no.
I finished getting cute. Like real cute.

But my anxiety was getting steadily worse.
“If I had to pee, I would have to go inside and use a bar bathroom. In the bar bathroom, I would get the Coronavirus. Once I got the Coronavirus, I would definitely die.”
“When the sun goes down, I’ll start to get chilly. Even if I bring a sweater it might not be enough to keep me from getting a real shiver like I sometimes do. If I get that shiver, I’ll probably have a convulsive seizure. He doesn’t know how to deal with that.”
“What if Judas doesn’t wanna be out anymore and gets real angry? Again with the bar bathroom. I am not throwing up or having violent diarrhea in a bar bathroom. I am also not unbuttoning my jeans while I’m out in public with a boy I like. Oh God. What if it’s a doubled over at a 90 degree angle kind of pain night?”
“What if this is the night that I go into adrenal failure and need my emergency injection and I’m two hours away from my parents and my hospital and my medical team?”
And then my Blood Pressure dropped to 73/48.

Obviously, I can’t go with a boy to a bar two hours away. It was silly for me to think that I could. I sent him a text that said: “i can’t. it’s a bar bathroom if i have to pee. you’d have to leave if i needed to go to the hospital. i’m sorry. i’m really sorry. i’m too sick for this kind of fun adventure. i PROMISE that i will be at the next one you do in bham.”
His response? “Ok. I had no expectations.”
Let me tell you. That stung. But the hurt came when a few minutes later he followed up with, “I just don’t get why you tried to come if you were going to just change your mind.”
Y’all, I am a twenty year old girl. I have been single for a little over a year. It is the beautiful summer time. It is so easy for my mind to get carried away with fantasies of getting dressed up and going out with the boy I like to hear him play at a bar’s open mic night. That is a normal thing for someone my age to enjoy doing without a second thought. ‘Oh that sounds like fun, let’s do it!’
That’s not my life, though. Even if I had decided to go tonight, it would have taken thought and planning. I would have had to decide if I wanted to take my wheelchair–on a first date. I would have had to pack a bag for my Service Dog and made sure he didn’t overheat, have an accident, or cause a scene because he’s never been to a live music show. I would have had to make sure I had all of my dinnertime meds and a snack to take them with, plus any extra meds I might need in an emergency. I would have needed to take my sweater even though it’s 94 degrees today because I can’t regulate my body tempurature. I would have had to call my friend in Auburn to make sure she would be okay being on standby to come get me if my body crapped out and couldn’t handle being at the event the whole time. I’m sure I’m forgetting things as I’m typing this and also that this list is getting boring, but you get the point.
I am so sorry that I let my friend down by not being able to go with him to his show. But I’m also a little sorry for me. And that’s okay. I’m not ashamed of being sorry for me. Because it’s sad. It’s hard. I’m sorry that I missed out on a fun night. I’m sorry that I didn’t make new friends with his friends. I’m sorry that I’m not in the crowd clapping for him. I’m sorry that I got cute for no reason. I’m sorry that I’m not gonna get kissed tonight. I’m sorry that I keep letting people down when they want to make plans with me, and I’m sorry that I carry so much guilt for that when really I have no control over it.
I’m sorry, Mark.
But, Emma, darling, I am so fucking sorry.
Oh Emma. I am so sorry. You have so accurately described my life also, but the difference is I am 69 years old and didn’t become sick until I was in my 50’s and have already had the opportunity to do all the things you are not able to do. I hope that your friend will play here and that you will be able to go hear him. But most of all I hope that he will understand your limitations and accept them as part of you and still want to get to know you. Having friends is hard when you can’t ever make definite plans because you don’t know what the day will bring. But there are friends out there who have the ability to love you – all of you – even Judas. My wish for you is that you will find more friends, young men and women, who can love you for the wonderful woman you are. Hugs and peace.
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Oh, and by the way, you did look super cute!!!
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