Today’s Update to The Disabled Foodie: Guest Post by Amy Oestreicher
Just like I don’t let my disability hold me back from enjoying food and restaurants, my guest blogger, Amy Oestreicher, writes about how she does not let her disability hold her back from enjoying theater.
An Open Letter to the Usher at the Theatre Who Asked Me if “I Was the Sick Girl”
First of all, for being an usher tonight. I’ve always had admiration for what you do, and for the whole world of the Great White Way. Tonight, I was really excited to see one of my favorite musicals being revived on Broadway. I used to live for this stuff, and after being estranged from the theatre scene for a while, I still do love it. However, it’s been hard to get back to that world to after a few “medical detours.” Physically and emotionally.
I came to the theatre with an equal mix of nerves and dread. In my old life, I would have just hustled right to my seat 20 minutes before show time, devouring every last page of my Playbill, maybe running down to the orchestra to see if I could sneak a look at the musicians, and eagerly hurried back to my seat with elated anticipation as the first booming sounds of the orchestra flooded the building with astounding resonance.
But tonight, like every night I go to see theatre now, I felt like I was intruding on a world I didn’t feel quite as at home in. I tentatively walked towards the ticket stand, with equal parts adrenaline and anxiety, as I anticipated explaining my unique medical situation to the house manager, taking in their stupefied look, and keeping my composure as I tried to answer their baffled questions as calmly as I could.
I get it, though – I would be confused too. It sounds weird that because of all of my surgeries, I can’t sit down. I have two bags on my body – an ostomy bag taped to my side, and a large bag in the middle of my stomach – where my bellybutton should be, over an open wound that hasn’t healed for five years. It makes life a bit more effort, but it’s worth it, because I love living. But, the bags prevent me from sitting comfortably. I don’t mind if I don’t have a great view – I can just stay in the back, where I won’t disturb anyone for the many times I’ll be in and out of the bathroom throughout the show. No, I don’t get tired standing, and yes, I’m used to it, and double-yes, I know it’s weird. It’s not a preference, it’s a necessity. And I know it feels ridiculous that I can’t wait until the end of a song to use a bathroom – I hate it too, and I certainly don’t want to be a distraction.
And the food – I get it. Nine bottled drinks in my backpack may seem excessive for a two-hour show. As do the six blocks of cheese stuffed in the side-pockets. But no, I can’t wait until the end of the show. I only absorb 20% of what I eat, so it means I have to always be eating something. And because I malabsorb so much, it means for that 80% leftover, I’ll need the bathroom – a lot. I don’t have a stomach and it takes a lot of work and constant calories to keep up my weight – which I’m still trying to gain more of.
I get it, I do. It’s a lot of weird accommodations I’m asking for. Not your usual “I need wheelchair access” or “I can’t handle loud noises” or something like that. And I know I’m asking you for a lot of favors, and then you have to get a manager of the house to approve, or a supervisor, and I really feel bad that you have to do all that for me, in addition to the hundreds of people that are still waiting to be seated, staring at this skinny little girl trying to manage a backpack twice her size. I try to be as chameleon-like as possible – just tell me where to stand, and I’ll fade into the background, really. Whatever I can get out of the show, I will, although I’ll probably miss half of it in the bathroom. I know in some ways, it’s easier to stay at home, but I really am looking for quality of life here, and I don’t want to spend the rest of my life saying, “Well, maybe I should just be thankful I’m alive.” I’m living, but theatre is what makes me feel alive. And I really want to see this show – I’m actually an actress, although you may never guess that from all of my requests right now.
Tonight was a bit complicated, I know. This theatre was super-strict about any food or liquid in the building, and I’m sorry, but my body doesn’t make exceptions, even if a theatre has completely legit reasons and great intentions. So, there was a little back-and-forth between my needs and the “powers that be” of the theatre, and the staff member was very understanding and was really trying her best to work things out. Maybe it’s difficult to understand how rigidly I have to stick to my constant eating, standing and bathroom access. So, I went downstairs to the general ladies’ bathroom, and just hung out there while the show started. I didn’t know what else to do, and I felt like I was causing more commotion than I wanted. So, I just waited there trying to hear what was going on in the show through the speakers.
I’m not upset about how hard it was for that usher to make these accommodations.
I get that it’s hard to appreciate exactly how extreme my crazy situation is. My stomach exploded, but that’s another story – actually, I wrote a musical about it. See? I’m not just a sick girl with a disability, I do theatre too! I belong here!
There is only one thing that made me upset. It’s how I met you. You asked me a question when trying to work things out, which I really do appreciate. You came down, saw me in the bathroom, and before even introducing yourself, said, “Are you the sick girl?”
I hate that word. I really do. I immediately snapped back (and I’m sorry if that came across the wrong way, but it struck a nerve), “No, I’m not the sick girl. I have medical circumstances.”
You didn’t seem to be bothered by the difference in phrasing, and went on with your well-intentioned attempt to make my necessary accommodations. Eventually, it worked out, and thank you for helping me find a nice place to stand in the back and eat my cheese, while enjoying the show.
But I really hope you heard me when I said “I’m not the sick girl.”
What I really wanted to tell you is yes, I have crazy medical circumstances. And I hate them. I absolutely hate them and sometimes I want to scream like hell how unfair it is, that I can’t even sit in a cozy velvet theatre seat, relax, and just enjoy the show. And more than that – I used to be just like those actors you’re seeing up there now. I used to be SO in this world! Auditioning in New York, with an agent and everything. I knew all the latest composers, what the Broadway trends were, the most overdone audition songs to avoid at the time…that was me! I’m not just this skinny thing that should be in bed at a hospital, barricaded from the outside world. I have those moments sometimes, in and out of hospitals, but I’m strong, I’m vital, and I’m an actress, whether I also happen to be a patient or not.
I want to tell you that I still do what I love, but in a different form, and hopefully inspiring people. I may not be up there with my Equity card, but I’m sharing my story through the magic of theatre – my addiction since the time I could remember. And maybe one day, I will audition again.
I know right now I look thin as a rail, I’m hunched over, embarrassed, insecure and trying not to feel ashamed that I can’t behave like everyone else and not make a scene wherever I go. But, for five years, I’ve been “making scenes” touring theatres, even some just a few streets down, singing, dancing and laughing about all of this medical nonsense.
So you can call me whatever you want – weird, high-maintenance, difficult – although I really do appreciate all of the accommodations you are willing to make.
But please, do not call me sick. I have medical circumstances. Circumstances that I cope with through the power of theatre. Circumstances that I won’t let determine the course of my life.
After the show was over, I went back into my life – with those same medical circumstances, as I frantically searched for a bathroom on the way back to my place. Whatever it was, I was going back to my life. A life that is so much larger than sitting or standing.
So, the next time you meet someone that needs special accommodations, please, don’t call them the “sick girl.” Hundreds of people mill in and out of a theatre every day. What if we judged all of them with the first label that comes to our minds? What if we judged all the actors on stage with the costumes they wore?
Theatre is about opening up our preconceived notions. I hope I was able to do that for you. Even though all I said was, “I’m not the sick girl.” Maybe one day, you’ll see my show, and meet the person behind the patient.
And I really did enjoy the show, by the way. So thank you. I had a great view.
Wishing you the best,
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress, and playwright, currently starring in her one-woman musical Gutless & Grateful. To fight mental health stigma, she created the #LoveMyDetour Campaign, and is currently touring theatres nationwide, along with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre for college campuses and international conferences. Her original, full-length drama, Imprints, premiered at the NYC Producer’s Club in May 2016, exploring how trauma affects the family as well as the individual. “Detourism” is also the subject of her TEDx and upcoming book, My Beautiful Detour, available December 2017. As Eastern Regional Recipient of Convatec’s Great Comebacks Award, she’s contributed to over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, among others.
Subscribe to her newsletter at www.amyoes.com for updates and excerpts from her upcoming book, My Beautiful Detour, available December 2017. Get a free creativity e-book at amyoes.com/create and a free guide to getting a TEDx Talk at amyoes.com/discover.