I went to a party this weekend, a year-end/25th anniversary party for one of the theatres I work with. At one point a toast was made to those of our theatre friends who made their exit bows too early, so to speak. Included among them was my friend Robin. I intended to talk about her some time back, but hesitated. It felt a little presumptuous. Is it my place to tell her story (or what I know of it)? We weren't "best" friends, by any means. We didn't talk every day, or even every month. We saw each other mostly when we worked on shows together. We were the kind of friends, though, who, when we saw each other, no matter how long it had been, fell right back into conversation as though we had just left off a moment before. At any rate, she was one of the coolest people I've ever known, so I'm just going to plunge in, presumptuous or not, and tell you a little bit about her.
Robin had spinal muscular atrophy, a particularly devastating form of muscular dystrophy. People with this disease rarely live beyond their teens. One of her brothers had it, as well, and died in his late teens. (But Robin lived to be 37! Amazing.) As the muscles progressively weaken, the spine curves, compromising the lungs. The neck muscles weaken to the point they can barely hold up the head, making suffocation a real danger. When you did a show with her, you'd be told, "if her head falls forward, please prop it back up!" Robin herself compensated for the weakness by keeping her hair long enough to give a little tug in the other direction if she felt it going.
I met Robin doing theatre at a local center for people with physical limitations, where they did "mainstreaming"--mixing able-bodied actors with actors in wheelchairs, deaf actors, etc. She was a terrific actress. It didn't take long before you stopped even seeing the wheelchair and twisted body, and saw only the character she was ably portraying. We did a few shows together through the years.
The first show I did at the Center was a musical, and we took the show on the road, doing several performances around Oklahoma, and then flying to Seattle to perform at the National Conference for Theatre and Disability. I was the only "able" person in the cast, though we often joked that my disabilities were only buried a little deeper. Hee. Let me tell you, if you want a lesson in just how important the passage of the ADA was, try going cross-country with people in wheelchairs. Eye opening, to say the least. No wheelchair-bound person could be blamed for getting frustrated, or angry, or wallowing in self-pity, but as far as I could see, Robin never did. She had the best outlook on life of anyone I've ever known. She was fond of saying, "Hey, I was supposed to die 10 (15, 20) years ago--it's all good." Everyone should have a friend like Robin. It was absolutely impossible to feel sorry for yourself in her presence. Well, you could do it, but you'd feel like an ass in the process! While in Seattle, she was determined to drink in as much of the place as she could. Each morning she'd set out by herself, in her little motorized wheelchair, and go find adventure. No fear--what was there to fear? She was supposed to be dead 10 (15, 20) years ago! Occasionally she'd light up a cigarette, and if you looked at her disapprovingly (Come on, you can barely breathe already!) she'd say, "Hey, I've already outlived my life expectancy by years!"
She went to school. She worked, whenever she could find a job she could physically do, and an employer willing to take a chance. She traveled. She dated. Some good guys, some not so good (like all of us), but she ended up with a great one, a friend of mine, too, who made her last few years wonderful. She told me once her years with him had been so fabulous, there was nothing left on her to-do list; she'd done everything she always wanted to do. How many of us are so lucky?
I was fortunate enough to work with her in what would turn out to be her last show, "The Heiress." Actually, the show wouldn't have happened without me (she modestly says). We had an actor drop out of a major role just before rehearsals were to start, and we couldn't find a replacement. Gary, the director (also a good friend of ours) and I searched high and low. We called every suitably-aged actor in town. They all said no. Everyone was ready to give up. The producers, the director, even Robin and Jason (her real-life husband, who was playing her romantic interest in the play). But I was obsessed--for some reason, I just couldn't give up. And it wasn't selfish--I wanted to play my part, of course, but even more, I wanted Robin to play HER role. It just seemed absolutely essential that the show go on. I begged for more time. The producers said okay, but they would cancel the show on Friday if we hadn't found someone. On Thursday, an actor who had previously said no called to say his schedule had freed up, and he wanted to do the show. He happens to be a minister--do you think I doubted for a second that a higher power had something to do with that rescheduling?
So, the show went on, and it was a huge success. Robin was amazing--she received standing ovations 5 of the 6 performances. My friend the director was standing backstage with a look of amazement on his face--"We're slaying them with the fuckin' Heiress!?" he kept saying. I am SO glad she got to experience that, since as it turned out, it would be her final show (in this world, at least).
During the run of the show, my friend and ex-boyfriend George had a stroke. (I've told you that part before.) When Robin called me a couple of weeks later to tell me that George had died, I noticed she sounded sick. "Oh, it's just a cold," she said. For someone with her lung problems, a cold was NEVER just a cold. Sure enough, it turned to pneumonia, as it had so many times before, but this time she just couldn't turn that corner, as she had so many times before. The doctors offered to do a tracheostomy, which might have bought her a little time, but at the expense of her mobility, and the ability to speak. She declined. They made her as comfortable as possible, and she died soon after. After I got the news, I remembered a conversation she and I had when George was lingering, post-stroke...about how he would hate to linger like that, how WE would hate to linger like that in a similar situation, and I was sure she never hesitated to make that choice. What was there to fear, after all...she'd outlived her life expectancy by 20 years, found her true love, and done everything she'd ever wanted to do. On to the next adventure!
Her funeral was heart-wrenching, nonetheless. I sang, our friend Gary did the eulogy (so beautifully that I told him to go ahead and start working on mine!), and off her spirit flew, I'm convinced, to a place where twisted bodies and compromised lungs have no power. I like to picture her and George, co-starring nightly in whatever play's on the bill. I hope we all do another show together, someday, somewhere.
Whenever I'm feeling overly whiny and sorry for myself, I try to think of Robin, kick myself in the ass, and tell myself to get on with it. Everyone should be so lucky--to have had a friend like that.