In the last few weeks both Elizabeth Edwards and Tony Snow’s cancer became the focus of much public discussion and debate.
And, all I could think of when Elizabeth Edwards said that she and her husband were not going to allow “cancer any control over us, ” my reaction was, shall we say atypical.
“Christ. Now, as a survivor, or worse yet if a reccurence shows up for me the well ones in my life, *both* on the left and right will say:
‘Come on! Elizabeth Edwards/Tony Snow handled high profile high energy tasks while coping with cancer and You Can Too!'”
Just another impossibly high bar to set that I can fail at.
Thanks a freakin bunch.
And besides that, good looking charismatic ambitious intelligent John Edwards is *pissing me off!* [and I really wish he hadn’t.]
Believe it or not, after watching that interview my primary vote is changing and not in a good way for the Edwards clan.
If you have someone you truly love,respect and support that has cancer…
The personal bond *has* to mean more than any personal ambition *including the Presidency.*”
Senator Edwards, you are not stupid. You are not without compassion.
Of *course* she would *never* stand between you and what you want.
She loves you enough not to do that…She loves you so much she’s willing to stand up to the impossibly invasive scrutiny of the campaign and then possibly the Vice Presidency or even the White House.
You dolt. *Be* smart enough to redirect your work and hers to good causes, even great ones, that you and she can work at *and enjoy each other’s time with the blessing of relative privacy.*
She’ll never be publicly ‘selfish’ enough to ask you to stop.
Be *perceptive* enough to understand that your kids and your wife might need you more out of the public spotlight than in it…and take the step back *yourself!*
It will probably come as a surprise to no one that when the only impairment I dealt with was cerebral palsy, I had a thing for the stage.
We had a Drama Teacher in high school that acted like a sweet old thing…But, the idea that people with disabilities are people hadn’t quite hit the suburbs of her brain yet in 1979. A friend of mine was student directing “Flowers for Algernon,” (or was it the same title as the movie ‘Charly?’) and he cast me in a fun little character part.
She praised him. by saying “Why [Student Director in High School] it was so *nice* of you to cast her because she’ll never be able to do any ‘real acting.’”
Said student director wasn’t even that close of a friend, but he was so appalled by what the high school drama teacher/director said that he violated the silence of fourth period study hall in the library [Shhhh!] to tell me.
Which means, when I got to college, I had a bit of a thing to prove.
Spring, 1981, tryout for something…I don’t remember what.
Able, male, mellow, laid back acting teacher: “You have some sort of a disability, don’t you?”
“No, Tom, actually I walk around like this for my health.”
I should have caught that shift in his expression from mellow to thoughtful…but I missed it, because I was feeling irritated.
And I didn’t get the part.
Fast forward to Fall 1981. I was minding my own business just after choir rehearsal when Well Known Theater Major appeared out of nowhere. I was certainly no one he’d usually bestow attention on, so I was a bit puzzled as to what he’d want with me.
“Um, Hi Mark.”
“Hi! Tom wanted me to tell you that he really wants you to read this play.”
He shows me the name of the thing…a rather chilling title “Blood Wedding.” I’m still puzzled.
“He *really* *really* wants you to read this script. There’s a copy in the library. Tryouts are tomorrow.”
He left and I felt as though someone had opened a door and shown me something forbidden…a key to “Why the popular people always got the parts,” Ah. It was all arranged beforehand…a few words in the ears of the Chosen Few, and there it went…
But what did he want *me* for?
After I read the play, I didn’t care which part he *wanted* me for.
I knew the part *I* wanted.
An old bitter Mother, who can see the doom before a romance begins, and is angry and controlling when things do, in fact, fall apart.
Of, course I wouldn’t get it. I’d get some token bit part that they’d hand the Disabled Person, and we’d all Feel Good.
But the audition? That would be mine, no matter what happened. For those five minutes I’d knock them off their feet with talent that was *independent and separate from my impairment.*
So I geared myself up for the audition.
We all went in the next night and auditioned for the director, The Great Stone face. Incredible people went up there and gave nuanced or over the top or inbetween stuff. His face never moved a muscle. He said to them all…”Thank You.”
It was my turn. Me and the ingénue. An old angry woman facing the young bride who’s infidelity had brought about her son’s death.
Then he said, “Nice.”
Shortly thereafter auditions ended, and we were told to check the callback list the next day.
Oddly, everyone’s name was on it.
The next night, he said. “You’re all in the show. [Enthusiastic cheering.] I’m just not sure where I want to put who.”
So, we all did different parts than the day before. I was often used as the Neighbor, an aged sympathetic ear for the rest of them. At least *that* wasn’t unfamiliar.
The roughly two months of rehearsals were draining and difficult, and I’m not ashamed to admit, made more so by my impairment. I had to grow out my usually short hair, which resulted in a lot of unruly junk on the top of my head. The Well Known Theater Major agreed to do my makeup, because other than the base, my cerebral palsy made the specific effects necessary for aging impossible to apply to my own face. (The Well Known Theater Major isn’t living anymore. I miss him. I wish I could thank him again in person.)
A black dress. Pinned up gray hair. A mantilla. I learned to cross myself, and cross downstage. To pick up cues and bobby pins.
(A side note: I was first introduced to Monty Python by my castmates during this time, so the Lumberjack Song often filled the Green Room prior to rehearsals.)
But this was about more than just playing a part. In the middle of the second week the director stopped me and said:
“Your tone and emotion and attitude are just perfect, but you’re doing something I’ve noticed you doing in real life too, when it’s you and a stranger…”
“You aren’t meeting the eyes of the other actor in the scene. Raise your chin up and make the eye contact straightforward every time. You won’t be completely “in” the scene unless you do that.”
I took that to heart, and used it. I was amazed and even ashamed. It seemed as though all my positive “mental” setup, my certainty that I was a cool person worth interacting with was being countered by stubborn body language left over from a past when I hung my head for getting caught in a lie, or failing my mother’s expectation, or deciding a hung head was better than some destructive rage and attack, that I felt like doing whenever my father got liquored up and started yelling.
It was and is a huge physical effort to do that. And I don’t know why. But in my work, I have to do it. I do it especially for the walk in customers, strangers who get the shock of my weight and my impairment and have to trust me anyway. It is a physical effort to make the eye contact and put forth the Business Charisma Face my father did so well when sober.
And, I wouldn’t have known I needed to do that without the director. So I owe him. More than I thought I did.
I was beginning to be chunky then, and three days before ‘showtime’ I sat down on a stool and it broke beneath me.
“Are you going to *do that in my show?”* Director yelled.
“Not if you get that *dammed chair fixed!*” I yelled back.
Ooops. As silence fell I realized I’d violated Rule Number Two
Nobody yells at the director. Ever.
Completely differently, he asked “How much sleep have you been getting?”
“Not much,” I admitted, and [oh the shame] began crying from fatigue.
But I showed up…for all the shows….as the Old Mother, the de facto lead.
I’d gotten the part I wanted…so I was the last to bow at the end…
All those able people. And then, me…
Standing on the edge of that stage and catching that applause, not the “oh, that’s nice they cast a disabled woman,” applause. But the real stuff, powerful enough to nearly knock me over…
Because I had done…real acting.
The next day, my orbit seemed full of amazed people…who couldn’t believe what I’d done. “You have *talent,* they’d say as if I’d created something impossible, as if an impaired person couldn’t possibly act, and act well.
Even better, I headed to the music building around noon for scheduled concert choir practice. and received a standing ovation from my peers in performance. That was the last proof I needed. That was a special kind of validation, because a lot of those folk were Theater majors as well as singers.
But keeping up with the able in the show, bringing the performance, doing it right, was exhausting physically and emotionally in a way I don’t think I have the capability to explain to my able castmates then, or able people now…
At the end of the last performance I did hustle back stage and sit on the top step of one of those curvy staircase and cried again from tiredness…and there was WellKnownTheaterMajor with uncharacteristic genuineness…”I’ts okay. You’re all right. You did it! You actually did it!”
Other impairments now mean that public performance is out….but it doesn’t matter that much. First, because I *did* it… I wish I could explain this to anybody impaired or not…that the coolness of the fact that you *did* something is in no way diminished by the fact that you cannot do it anymore…
And *second, * because there were other people, here in Denver, 1300 miles away, that around the same time, began Phamaly, a troop of combined able and impaired actors giving public performances in the Performing Arts Center here that has been going strong for decades now.
“Never be able to do any ‘real acting?’”
* an earlier version of this appeared in “Life Is Full” Webzine.
committments outside of work would wonder….
Why on earth am I so tired?
I have no children or spouse.
(At Present) No church affiliation, community groups,
No more costly or time consuming hobbies, other than blogging and films, and my particularly quirky taste in television vewing.
But by Fridays…
So I need these two days to recharge.
I did handle bill paying and grocery shopping this afternoon so I’ve not been completely useless.
I’m just tired….
Whether I’ve “done enough” to be tired or not.
I like Friday nights.
Because I get to come home, with an entire weekend ahead of me where…
No outside “productivity” standards to meet.
I can play the same music 30 times and no one cares.
I can lose myself in my latest addiction, the political gabfest shows (PBS,NPR) and no one says boo.
I can dress comfortably
I can go barefoot (helps in maneuvering manual chair without wrist usage)
I’m allowed to watch crappy television that I don’t dare admit I like in public
I can stay up late. (I still get a charge out of that, as if I was in high school.)
I get things done, but they’re on my timetable and *thats* fine.
I can expand my food choices a bit, because I am safe at home.
I can peruse the free movies offered by my cable service and choose one that suits my taste and complete it before the roomate comes home.
I like having a space where the rules are mine.
There are a bunch of lousy things about managing your life yourself with few family or friends physically nearby…
But running your own show in your own place *at your own pace,* without complaint or much criticism… That is a good thing.