Posted on January 4, 2016 at 8:26 am

A couple of months ago, I got an email saying that a high school principal had told one of his students that they couldn’t do “13” for their Spring Musical because one of the lead characters in the show was a terminally ill child. I wrote the following piece and sent it to that student in the hopes that it would help sway the principal from a position that honestly made no sense to me. I haven’t heard back as to whether I was successful, but the article made me think a lot about Archie and the show, and I wanted to share it here.

Aaron Simon Gross as Archie in the Broadway production of "13"

Aaron Simon Gross as Archie in the Broadway production of “13”

While I was in rehearsals for the original production of “13” in Los Angeles, back in 2006, I asked my USC students if any of them knew anyone with Duchenne Muscular Dystrophy (DMD), the unnamed disease which plagues Archie, one of the leading characters. I was introduced by email to Jonathan Murphy, who was then a 23-year-old creative writing major at USC, who by that time could travel only in a wheelchair after a spinal fusion operation in his teens. I wrote to J.T., which is what he called himself:

This fall, the Mark Taper Forum is producing a musical called “13” for which I am the composer and lyricist. The whole cast is thirteen-year-old kids, thirteen of them, in fact. One of the main characters of the show is named Archie, and he’s a 13-year-old boy with DMD. He’s not the lead, but a lot of the show revolves around him.

I chose to create a character with Duchenne’s for a variety of reasons when I started working on the show, not the least of which was its severity and its inexorable progress. Part of the point is that while everyone else on stage is wasting a lot of time dealing with teenager-specific problems that seem incredibly important at that moment but won’t ten minutes later, Archie has very real problems and no time to waste. He is, in every sense, a reality check.

I worry, having written that paragraph, that you’ll be offended by it, that you’ll rightly say DMD is not anyone’s symbol of anything, it is just what it is, and using a very real syndrome to dramatize a fairly negligible piece of drama trivializes what you spend every day working through. That’s a fair point, and I don’t know how to respond to it, but suffice to say if you don’t feel comfortable with what I’m about to ask, I completely understand that. I’m genuinely nervous enough just writing this letter that you’ll somehow feel exploited, and I hope that’s not the case. I want, more than anything, to be able to understand a portion of what you are living and dealing with, and to be able to communicate that to an audience, with respect and with honesty, in a way that you feel is fair.

So here’s why I’m writing: based on my experience with the workshop of the show last January, the majority of the kids involved in the show and the majority of the adults involved behind the scenes have no firsthand experience with DMD, they have no relationships with DMD sufferers, and they have only the most distant understanding of how it works or what it does outside of perhaps a couple of viewings of the Jerry Lewis telethon. I’ll confess that in fact I am just as ignorant as they are about it. Therefore, I come to you with a proposal. I’d like to commission you to write an essay that I can share with the creative staff of the show, the cast, and perhaps even the audience, about your experience as a teenager living with DMD.

The next day, J.T. wrote me back:

Creative writing is my current major and something I aspire to do as a career. For a while, I have been wanting to do something creative with Duchenne. I’ve been avoiding it because I did not want to begin my writing as “the guy in the wheelchair” writing about being in a wheelchair. I think this essay for “13” is the perfect opportunity to include such a major part of my life in creative work.

…With regard to your concerns, I do not feel exploited at all. I do thank you for your candor and sincerity in expressing your feelings on those very real issues. In fact, I wanted to send this e-mail before I began working on the piece just so you knew I was on board, and your concerns could then be eased. I do agree that DMD is not particularly a symbol of anything. I feel like the real symbol is in each individual person’s attitude toward the challenge and all that comes with it. Personally, I am extremely positive and consider myself an optimist. I certainly hope that that will be apparent and come through the work. I also feel like I’m simply a regular person who happens to deal with circumstances that are visually obvious to everyone (whereas other people deal with more internal affairs). I find DMD to be unremarkable (if that makes any sense), and as such I think it is fair game for drama. I welcome the opportunity to approach DMD creatively!

And thus began a four-month process of both of us doing something we hadn’t done before: him writing about the very thing that most defined him to the world at large; and me editing someone else’s prose. It was a delicate dance, but it also unlocked something wonderful in J.T., and he loved knowing that the piece would be seen and read. He also took a certain amount of pride in the influence he would have on the development of Archie’s character.

When the piece was done, we arranged to have it printed in the program at the Taper so that the whole audience could read it. And on January 7, 2007, J.T. and his family were my guests for the opening night performance of “13.” Ten days later, he wrote to me:

I thoroughly enjoyed everything about opening day… from the placement of my piece to the show itself to the treatment I received from everyone at CTG… I feel like I was given the royal treatment. I couldn’t believe that Mr. Mike Ritchie was thanking me for my small role in the production, but that’s the way the entire day went… I could not have hoped for a warmer reception.
I’m sorry that I did not contact you sooner. I actually ran into a little health issue about a week ago. Unfortunately, I’ve had to deal with prognosis & treatment of a spontaneously collapsed lung. It really is not as serious as it sounds… as I have a ton of energy and am feeling quite healthy. In the end, my breathing will actually be better for this ordeal. I am in the process of taking regular x-rays and simply trying to let the body heal itself. That is why I have not conveyed my thoughts on the performance. But now I’m feeling well enough to do so… so look out!

I thought that Archie was handled superbly, and I honestly do not have a single complaint. I thought Tyler Mann was phenomenal. I said before that, artistically speaking, I don’t have a problem with taking artistic leaps as long as the character qualities remain similar. I thought this was done perfectly in terms of Archie. Although I’ve never dealt with crutches myself, I still understood exactly the physical and mental hardships of using them. I still understood the idea of fearing that the crutches were the only thing Archie’s friends saw. I LOVED the line about the skinny arms. And I thought his fears about his respirator were done exactly right. Even though no one ever saw him using it, and perhaps no one even knew, I can tell you firsthand that things like that are in the back of your mind at 13. I really liked the scene in which Archie fell and the tension of Evan helping him… that is a perfect example of the character qualities remaining true. At the end, I thought the friends fighting over the right to push him was really cool. Most importantly, I enjoyed how Archie was his own character who responded to his situation in his own individual way, as we all respond differently to what we face. And of course he made it out of his 13th year a little better than I did!

In my opinion, everything was amazing. That is one fantastic group of kids… and, despite my very limited theater experience, I think you have a hit. I’ll be seeing the show again on the 27th, and I can’t wait. This experience is a great one, and I’ll be looking forward to hearing from you. Thanks again!

I never wanted to write Archie as a saint or a victim; I wanted to write a 13-year-old boy, which means that some of the time Archie is a frightened kid and sometimes he’s a little brat who manipulates everyone. It meant the world to me that J.T. understood and enjoyed and endorsed the way we brought a teenager with DMD to the stage.

In all the years that “13” has been done by schools across the country (and in fact, all over the world), I’ve gotten a couple of complaints about the show – usually about the word “dumb-ass” or the concept of “tonguing”, and once or twice about the (fairly mild) anti-Semitic Jew-baiting that Evan endures at Brett’s hands – but the only time I’ve had real complaints about Archie was on Broadway, where our producer first asked for us to amp up the comedy (resulting in a series of very funny and borderline tasteless jokes about Archie’s infirmity) and then, after the audience responded negatively to that, he tried to get us to soften everything about Archie’s illness just in case anyone got offended. The final version on Broadway was an unsteady compromise, but the version now being licensed is much closer to what the authors and I originally intended, and I’m very proud of Archie and think that J.T. would approve.

I can’t say I really understand why a school would have a problem performing “13” simply because there’s a terminally ill child in the story. What would the objection be? In a world of The Hunger Games and The Giver and The Maze Runner, portraying a boy with a real-world illness shouldn’t be all that controversial. Maybe the objection is that Archie gets laughs? I don’t think we make fun of Archie for being handicapped or sick; I think he as a character makes light of his own troubles as a coping mechanism. But “13” isn’t a show about Muscular Dystrophy, any more than it’s about Bar Mitzvahs or Indiana – it’s a show about the travails of growing up and discovering who you are and who your “tribe” really is. It’s not that it’s “just a musical, don’t take it seriously,” I’d be the last person to espouse that philosophy; it’s more that Archie’s just a teenager, and he’s acting like teenagers do – we have to respect his humanity by allowing him to be whoever he is, even if occasionally whoever he is is an asshole.

At any rate, I certainly know that kids love “13” – they embrace it in all of its sloppy ridiculousness because they know the show respects the life they’re trying to lead, and I get endless fan mail from teenagers all over the world telling me how much they love the show and identify with the characters in it. I am honored that I was able to help create something that tweens and teens respond to with such enthusiasm and passion.

Back to J.T. After the opening of “13”, he decided to start writing a blog (you can see it here), and for the next couple of years, he documented his life and his thoughts with optimism and his usual gentle amazement at the world. If you read the blog sequentially, you can hear the clock running out on him and watch how bravely he takes that on. His last journal entry was in November 2009; we stayed in touch on Facebook for a while after that, but I got an email from his brother on Thanksgiving 2011 that Jonathan had finally lost the fight that had taken up his entire adolescence and adulthood. He was 27 years old. It wasn’t a surprise, but it was hard. To the best of my knowledge, after all was said and done, the piece he wrote for “13” was his only published work.

I’ll include it here, and I hope that when schools do “13”, they’ll print it in their program as well, with proper credit to the author, J.T. Murphy:

by J.T. Murphy
When I was 13, everyone always wanted to push me around. I loved it, I still do. Does that sound strange? There was definitely some danger involved, but it was a good way to get from place to place, especially being in a wheelchair.

Even though it was frustrating that I couldn’t get everywhere I wanted by myself, it was a good feeling when all my friends were arguing over the right to push me. Of course, there were also the kids who didn’t just push me, but took the opportunity to scare the living daylights out of me.

Sometimes, it was just funny. They’d swing me too fast around a corner or slide too tight past a brick wall. I would totally freak out in the moment, but we’d laugh about it the next day. Other times, there wasn’t any laughing. There was that time Cris pushed me over a bump on the playground the wrong way. I fell out and broke my kneecap. Problems like that were just regular kid problems. A broken bone was a rite of passage that everyone went through. I was tough enough to get through it. Thinking about it now, broken bones were no match for me.

I don’t know if anyone else thought I was tough, this fat kid in a wheelchair, but I was. I’ve always needed a certain toughness to help me separate myself from the world of illness, of disease, and disability. The best doctors and the best nurses keep your mind off that world. A great nurse shows you that care beats pain. (Especially a beautiful nurse named Heidi. But I digress.) Good doctors place your focus on what will get you out of their sight instead of what brought you to them in the first place. But then as now, it’s not up to them when it comes down to it; being normal is really up to me and how I see things. At 13, I saw myself as normal despite the fact that my steroid therapy made me fat. I saw myself as normal despite the wheelchair. I was just a happy kid. Of course, it helped that I didn’t have to face any trouble beyond muscle weakness. Respiratory complications were just a figment of the future. They were something for those good doctors to worry about.

When I was 13, things were really mixed up. I went to a small Catholic elementary school where my Mom was the principal. Every class was like having 36 brothers and sisters. We could be such a family, so caring and nice. But those same generous kids could turn around the next day and be anything from hard and cold to downright vicious. Then, in a week, we would all be friends again. As many adult problems as I had already been through, I wasn’t as physically mature as the other boys. My voice was still high. As normal as I felt, I was still the guy in the wheelchair and the fat kid. The school uniform called for a bright yellow knit shirt. It wasn’t exactly what I’d call slimming. The girls did what they could with the uniform, but the greatest days were when we had to dress up. Jessica’s flowery skirt was the best. She was really cute and I’ll never forget trying not to get caught checking her out. She had to know what she was doing.

I gave Jessica flowers for her birthday. They found their way into the trash by the end of the day. And there was Lauren. She would tease me and literally run around me in circles. Sandra told me I should be “best nothing” in the yearbook. But I talked to Roseanne a lot, especially after school, when her ride was always late, and I had to wait for my Mom. Even those mean girls and I became great friends, especially when we got close to graduating.
My friends could be so smart, but I don’t think they ever realized all the concerns I went through on a regular basis. I think they just assumed I lived my entire life in the wheelchair with that yellow shirt permanently attached. I almost felt like the rest of my life outside of school was like a big secret. As a group, we 13-year-olds thought we had so many secrets. We knew all the worst language and loved bad words. The boys thought we knew everything about girls, the girls thought they wrote the book on romance, and our parents thought we were all so innocent.

I loved touch football, it was a game that most of the boys played. My team played offense going downhill, so it was pretty easy for me to go out for a pass. Then, on defense, I could roll backwards and guard my man. I had great hands and some obvious advantages on the playground, but I’d get tired easily and then the other team would take advantage. That usually got me frustrated and we would start arguing. I was usually the one who escalated the fight at exactly the wrong time. For example, there was that time I cussed in front of Fr. Mike. I couldn’t see him, and even my fiercest enemy would have been trying to shut me up. The problem: I have Irish blood and, at that time, nothing could have stopped me.

When I was 13, I had some interesting friends. Msgr. Connolly from my parish was a close friend ever since my pilgrimage to Lourdes at the age of 3. When people get sick, a lot of them are intimidated by priests. It’s as if the collar or the blessings are signs of death instead of prayers for well-being. Not a lot of kids were good friends with priests. Of course, there weren’t that many kids who ever really needed a blessing, either. I liked them.

Dr. Prickett was another great friend of mine. He had been my orthopedic guy for a long time. He stuck with me even when I was working with this alternative medicine woman. She had this big celebrity practice involving electrodes and mild electric currents. She told me that I would be walking in my eighth grade graduation. My friends happily rejoiced when I told them. They were confused and questioning when I was still using the wheelchair just a few weeks before the ceremony. I guess adults making promises they can’t keep is something teenagers just begin to find out.

Dr. Prickett welcomed me back from wacky medicine so I could go with a traditional therapy: spinal fusion. It was major surgery, and once eighth grade was over, I would have a battle on my hands. I knew going in that I would win. But, I also knew that I would need every ounce of friendship and will power to do it. Dr. Prickett did an expert incision for my surgery, so now I have a scar running the length of my back, from my neck to my tailbone. If you must have a scar, you would be lucky to have one this beautiful.

When I was 13, there was a lot I didn’t know. I didn’t know why I was forced to deal with such a tough life. I didn’t know that the way I chose to deal with such a life was called optimism. I just knew that my life involved some extra stuff, and I could either stay home and cry about it or go out and do the best I could with what I had. Now, ten years removed from that essential time in my life, I realize just how important that perspective is. I can laugh at my first experiences with girls, I can appreciate the meaning of a scar, and I know how necessary good friends are. And I can understand how a wheelchair can be both crucial in developing my attitudes and yet totally meaningless in defining who I am as a person.