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This is a list of stories that have been created by participants in the
Actual Lives Austin.
Click on a story title in this list to go directly to a story. Each story is followed
by a link to the top of the list.
These are a few of the million names of God.
In the early morning hours of the 11th day of November, 1989, my buddies and I were partying without a single thought of the frailty of these mortal lives that we are all participating in.
At approximately 3:30 a.m., we entered the intersection of 6th and Lamar through a flashing yellow light, only to be broad-sided by a speeding car with no consideration of a flashing red, westbound on 6th.
Things started making sense again about the 20th of January, 1990.
Now, going on thirteen years post head injury, I understand that our lives are tottering like dew drops on the petal of a lotus blossom.
I like cars
I like trucks
I like to bike all by myself
I like to swim
I like the birds
I like to give some people help
I like to talk on the phone
to my friends all night
I like to smoke
even though people say it ain't right
I listen to rap music
'cause I like the beat
I like to skip school
and go down to the creek
I wanna naked lady
tattoed on my arm
I'll flex it on stage when I perform
I want a better job
with better pay
and not so many rules
but times are hard today
A fast car
A three-story house
where me and my bitches could just hang out
I call my dad a cracker
'cause he's white
I call my brother nigger
when we fight
I don't love anybody
Who could that be?
But I have to forgive them
'cause they're part of me
Don't tell me how to wear my hair
Don't tell me when to smoke
Or where
Don't ask me for money,
I don't know what you want
Just leave me alone
'Cause I'm trying to get the monies
tryin' to get the honies
trying to make something
of myself
Seven years ago I was diagnosed. I probably had already had MS at that point for about three years. When people see me, they don't see a disabled woman. Most of the time they think that whatever is wrong is simply temporary.
People respond the most to my walker, four large wheels, bike brakes and a seat, which brings strangers up asking all sorts of questions because their wife, husband, mother, etc. needs something "just like that." Never a word about me! I am sure they are just being polite or politically correct. They don't really see me, they see the walker. This is really just fine with me because whatever I used that day to motivate myself out of the house is obviously working.
My disability, I feel, is a cruel trick of fate. But it, like most everything else, can be dealt with on a day to day basis.
I have an "invisible" disability in a world where people my age are, in many instances, invisible anyway. And I don't see the disabilities in this group, except where it affects theatre and the stage. Things like loose cables, discarded tape rolls or misplaced scripts can cause major problems for humans and wheel chairs. I think about these things. This instinct is born from working with dancers for many years. They are apt to trip over the tape marking the center line as they walk to the dressing room.
It's my job to think about what everybody needs in order to make the show work. Everybody needs something, whether they're disabled or not. As I have been with Actual Lives over these past years, no matter what your disability, I have seen you doing much the same thing.
I've been focused on simplifying my life lately. The biggest part of this has involved cleaning out my closet so to speak. You know, closets are like an archaeological dig: you can really see what's important to someone by the things they hold on to. I once had so much stuff, it just was not practical. I can't even carry a box now, so I had to learn to let go of things. I'm finally down to the stuff that's really hard to part with. You know, like toys from when I was a kid, notes from junior high, and … shoes.
I'm often heard complaining about the fact that women dis-empower and disable themselves for fashion. Wearing skin tight dresses they can't breathe, eat, sit down or walk in. Maybe I'm jealous, because in my closet there's a few of those. Although, I don't wear them anymore. But the worst culprits are shoes! Women can be seen everywhere wearing shoes they can barely stand or walk in, much less run if they needed to.
But, I must confess … I have a dirty little secret. Shoes are my obsession. When I was a little girl and I got a new pair of shoes, I would demand to sleep in them. As I got older, I started doing some traveling and finding a pair of shoes in every major city I visited was a high priority. I can't wear any of those shoes now, but parting with them is hell. It's having to admit yet again in some physical way that my body betrayed me. Thankfully, most of them have found homes with friends, so I still get to see them out now and again. But these go-go boots, I've had for about 10 years. They are so beautiful and I'm keeping these babies.
Last night, I sat outside for a while. It was a nice clear night. I saw two shooting stars. There was a star twinkling. It made me think about how far away the stars are. Between that star and me, there are all kinds of things floating in space. Seems like a million miles between us. I was struck by the vastness of space.
There is so much to it all.
Every night the stars are there.
Every morning the sun shines.
Every autumn the leaves fall.
Every spring flowers bloom.
I don't know what "It" is. If it's a he, or a she, or what.
I don't know why babies get hit by cars.
I don't know about the bread and the wine.
I don't know about wearing robes, shaving my head, or bowing, kneeling, counting on beads.
I know there is something.
Just because you're disabled, it doesn't mean that you're any more, or less, spiritual than anyone else or that you even ARE spiritual. I don't believe my disability is my cross to bear. I'm not sure God has something "special" planned for me because of it. I don't want to be heroic, I'm no angel. I'm not holier than, or less than, anyone else. I just Am.
I'm learning what I can't change and what I can change. I'm learning to ask you for help when I need it. Forty years of fucked up thinking doesn't change overnight.
There's not that much difference between people with disability and other folks when it comes to sex. Nobody gets enough. It's not that we never have sex, it's just that, for some of us, it's been a really long time.
If you're in a wheelchair, people think you can't dance. If I can't dance, what can I possibly do in bed? They don't get it. Especially the medical people. They really don't get it.
Several years ago, I attended a class at the local independent living center. The subject was SEX. I don't remember much about the class, except that the point of the class was to let us know that there are ways to deal with our physical disability when it comes to sex. This was something that all of us, me and the rest of the "consumers" already knew.
There was a video tape showing disabled people having sex and the different positions they used. Basically, it was crip fuck film.
There were hand outs and overheads. You know, what presentation would be complete without them? One of them, I still have it, was called "Choices: A Sexual Guide for the Physically Disabled."
There was a section on pee and poop, but we won't go into that. There were amazing descriptions of body parts.
Like a woman's "small cylindrical erectile structure," you know, as opposed to that large cylindrical erectile structure.
Or "Labia Minora and Labia Majora." That sounds like some kind of constellation. "You'll find these in the night sky right next to the Testicle Cluster."
And speaking of testicles … what about "ovoid bodies, each having within them the sperm-producing tubules." A pretty fancy way to talk about balls. They defined the penis, see, here it is, as "roughly triangular in shape when erect." Triangular? Is there something wrong with me?
It says, "Men with spinal cord injuries can often get reflex erections by having their genitals manually stimulated." And that's different from every other man in the world?
Here's a great tip: "You are encouraged to discuss your catheter with your partner to prevent surprises or embarrassment." Pee and poop again.
Here's another one. "Wait one hour after meals before engaging in sexual activity." Are we talking about swimming here?
Then we went on to the Nervous System. This is how they explained it. "In men, there are specific parts of the spinal cord that help control erection, ejaculation, and seminal emission. The sacral segments S2, S3, S4 contain an erection and emission center. The lumbar segments L1, L2, L3 contain an ejaculation center." I can hear it now. "Welcome to the erection and seminal emissions center. We appreciate your patronage. If you'll follow the L1 signs, you'll soon reach the ejaculation center."
They used the Masters and Johnson Human Sexual Response Cycle.
They describe the four stages of human sexual response: excitement, plateau, orgasm and resolution. Let's see, I think that corresponds to (retrieves vibrator from wheelchair bag) excitement (waves it), plateau (turns it briefly), orgasm (turns it on again, waves it around) and resolution (turns it off, and puts it away).
The reason all of this is funny is that clinical information isn't what we need, especially when it comes to sex. What those "white coats" don't know about sex would surprise you. But we know. We know all kinds of things that they don't know. We know the real reason they invented those LaBac reclining wheelchairs
Terri - Like the rest of able-bodied America, beginning in January. I began a fitness regime to get healthy. Tuesday, Thursday, and Saturday is swinging day. Nothing clears a swimming pool at the fitness center like a crippled girl trying to get in the water. Monday, Wednesday, and Friday is slated for aerobics. I do this of course in my office with the door closed and window blinds down. I don't want anyone to see me, all uncoordinated, trying to do aerobics. I'm afraid someone might see me flailing around and think I'm joking or maybe even on fire. Of course having those cute firemen come visit is never a bad thing. The video I watch is called Sit Tight. I thought I could just sit and watch it while the pounds just melted away. Oh no! It's not that simple when Richard Simmons is involved. He has these moves like "tie your bow tie" and "comb your hair." It's hard enough for me in the morning to just get up and dressed to start my day. Now I repeat the same old stuff again in the middle of the afternoon. What really gets my blood pressure going are his stupid motivational phrases like "You're so special", "You can do it", and "Love yourself."
David (as Richard) - Good morning everyone lets see those shinny happy
faces. Big smiles now.
Starburst starburst starburst.
Wash your hair.
Grab a towel. (Reach Reach Reach for your dreams)
Dry your hair (You can do it yes you can)
Throw the towel.
Comb your hair.
(Don't wanna make mama mad!)
Pick up your towel (Reach Reach)
Hang up your towel (way up high)
Put on your shirt (Left arm, Keep on going, you can do it, Right arm)
Oh no forgot deodorant (reach under)
Put on your pants
Pull up your pants (Just do what you can)
Tie your bow tie
Put on your shoes.
That was fabulous. Great job everyone. Keep sweatin' and always remember
keep loving yourself because you are someone special.
I remember my grandma always telling me to accept who I was. I would go to her house and cruise around. We'd talk. I'd tell her I'm becoming a teacher and she'd say, "I'm the student." I'd give her a test and sign something to her. "What's that?" I'd ask. She'd say, " I dunno, you write it."
I'd grade her, just like in school. Eighty or seventy. For years we did that.
My grandma knows two signs: "Grandmother" and "I love you." She's 94 now and only knows those two signs. But we always communicated.
She had roses all over the yard. I loved looking at them. I would look for roses for the table and gesture vase and point to yard so she'd know. Then I'd come in and we communicated through gesturing and we did fine. I'll never forget it.
Do you remember that song, "I'd Rather Be a Hammer Than a Nail"? I used to sing, "I'd rather be a para than a quad." Someone once said, "Every quad wishes he was a para, every para wants to be an AB, and every AB wants to be Jane Fonda." I suppose we would all like to be someone or something else.
It is not uncommon for those of us in the disability community to look at someone else with a disability and say, "I'm glad I don't have his disability." Somehow, without an extensive medical education, we can glance at somebody and assess their abilities and possibly their commensurate quality of life. We must be geniuses.
I have known two worlds, one as someone with a disability and one as an able bodied individual. I sometimes compare myself to other people with disabilities but usually I compare myself to "AB's." I would rather be who I am than to be an ignorant AB. I would rather be almost anyone else rather than Bill Clinton! It is fairly easy to make an AB hierarchy. At the top end you have Mr. Universe, at the bottom you have Hillary Clinton. Developing a hierarchy for disabilities is much more difficult. Having multiple disabilities would be at the bottom of the hierarchy, while some mild disability would be at top. But which specific disabilities fit where is hard to say.
I suppose if I were blind I wouldn't judge people by their looks and I could really freak people out reaching for Braille markings at the drive-up bank teller. Being a wheelchair user I always have the best seat in the house. If I were deaf I would never have to listen to Democrats. Hmmmm, being deaf may actually be advantageous. That has to be at the top of the list.
When I was in my late twenties, I was sitting around at a party with some friends of mine that I had gone to school with since first grade, getting really wasted, just talking shit about our lives. The subject of sex came up. The girls started embarrassing the guys with all their little secrets. All us guys were hearing shit that we really didn't want to know about our male friends. When all of a sudden, one of the girls, Becky I believe it was, looked over at me and said, "What is it that happened to you?"
"What?" I said.
"I never knew," she said.
I said, "I've known you for almost twenty years and you never asked me?"
"No."
So I went into my spina bifida definition, the short version because we were all fucked up. She said, "Can you fuck?"
I said, "Can I fuck who?"
She said, "Anyone."
I said, "Yes."
She said, "How?"
I said, like a smart ass, "Quite well, thank you very much."
She said, "No, for real. I know you're good with your mouth, girls have been bragging about that for years."
I said, "Oh, really? Who?" trying to change the subject, but no, she wanted me talk about gimp sex. So I told her that it was not all the different than sex with an AB. In some cases, it's better because gimps tend to like more foreplay than those guys who rush things to a quick ending. I told her that one of the only differences is that sometimes the spontaneity is not there, due to certain physical limitations. Unless you are one of those people who don't like to be clean when they have sex. "Which I am not," I said. I must always prepare for sex, like a date. So jumping some girl's bones in a car at the lake or going in the back yard at a party are just not my thing. At home, after a nice playful shower, then that's my kind of sex. I told her if she wanted to know more details, she'd have to come home with me.
As it turns out, my friends that day had wondered those same things about me, too. I guess you really never know your friends, huh. Oh and by the way, Becky did want more details about my sex life!
One day when my sister Kelli (the middle sister), who is four years older than me, and I were younger, we were playing in the backyard and my sister wanted to get me in a tree. First she tried to put me on her back and climb the tree, but I couldn't hold on tight enough. Then she got a pool bucket, one that holds chlorine, and rope. She somehow got me inside the bucket, climbed up the tree, and started pulling me up the tree. Unfortunately, I was two inches from the ground when she lost her balance and fell from the tree. No one was hurt during this event!
From time to time, I am asked the question, "If you could have one body function to be 'normal,' what would it be?" Of course not having Cerebral Palsy at all would be my first choice, but that wasn't the question, was it? My speech is always my answer. Being speech impaired is my greatest challenge. People assume that since I can't speak "right," I must be deaf and mentally disabled. I have had people talk very loud to me. If I wasn't deaf before, after they yell at me I will be.
The loud talking doesn't bother me as much as being treated as if I were mentally retarded and that I couldn't possibly make decisions on my own. Listen to this conversation I had once with a telemarketer:
Telemarketer: Hi, can I speak to Kate?
Kate: Yes, this is she.
Telemarketer: Where is your mother?
Kate: In Houston, Why? I'm an adult!
Telemarketer: (Doesn't get Kate's sarcasm.) Oh OK, I'm calling about a sweepstakes you entered into recently. You are not obligated to buy any of the magazines that we offered to stay eligible for the sweepstakes.
Kate: OK, well what types of magazines do you have?
Telemarketer: All types! Sports, gardening, homemaking, computer. What are your interests?
Kate: Well, actually what are the computer magazines you have to offer?
Telemarketer: We have Mac World, PC World, Mac Addition…
Kate: Oh OK, how about PC World.
Telemarketer: OK great. That's PC World. I am going to transfer you to my supervisor so he can verify your address.
Kate: OK, great!
Telemarketer: Thank you. I'll transfer you now … hold the line.
Supervisor: Hello. I am going to verify your information. What is your full name?
Kate: Kathryn Ann May.
Supervisor: I can't understand you..
Kate: Kathryn Ann May
Supervisor: I can't understand you.
Kate: Hold on, let me get someone to help me.
Ree: Yes, hello. She said her name was "Kathryn Ann May."
Supervisor: I have to talk to her.
Kate: Oh, I'm still here. My name full is Kathryn Ann May.
Supervisor: I'm sorry I can't understand you and I have to talk to you directly.
Ree: This is my wife, she has a speech impairment. I'm going to help her talk to you.
Supervisor: No, I have to talk to her directly or I can't sell the magazines to her. Sorry, I'll have to hang up.
Kate and Ree: Can I speak to your supervisor?
Click! The supervisor rudely hangs up.
Kate: What does it say on the ID caller? I'm calling that asshole's supervisor.
Ree: It's an out of area number!
Having a speech impairment is quite frustrating because you can't even hide your disability over the phone. If a person is blind, just in a wheelchair, or uses a walker or crutches, the telephone in a sense is an equalizer. No one can see you and you sound like everyone else! Wouldn't it be great if everyone used email?
I am not by all means embarrassed by my speech. It serves me well when people just listen to me!
Following many of my surgeries as a child, I was referred for physical and occupational therapy. The physical therapy was definitely needed. The occupational therapy was questionable. The purpose of the OT was to increase my independence with self care. Dressing, bathing, etc. Up to that time, I had depended on my mom for some things but I was independent in many areas.
The biggest concern was being able to help myself in the bathroom with pulling my pants down. Well, the first OT appointment was scheduled. The therapist came into the room and rather than having a conversation with me about what has typically worked and not worked, she spent half an hour demonstrating the use of VELCRO UNDERPANTS.
It was the most obnoxious contraption I'd ever seen. My mom and I listened politely (she was new at this and we didn't want to hurt her feelings) and then proceeded to laugh so hard on our way to the car that we nearly peed in our pants.
Life is a real roller coaster and being brain injured can be an exciting adventure.
Can you imagine going from having a severe brain injury to graduating from the University of Texas with 2.0 GPA in Psychology?
Can you imagine starting out in a wheelchair and learning how to walk and then eventually challenging Earl Campbell, one of the NFL's greatest fullbacks, to a foot race? His response was, "I don't want to lose!"
Can you imagine not being able to speak a word loud enough and clear enough to be heard and then being able to be a guest speaker at college undergraduate and graduate classes? In one graduate class, a girl told me, "You're one of the main reasons I stayed in Speech Pathology. You spoke to my freshman class a few years ago and I remembered you. I was impressed."
But there is a down side to these adventures.
I am alone.
I've been alone with God.
I've been categorized as different.
I had to retire from UT after working there for 17 years because of my inability to repeat numbers, and because of my emotional highs and lows.
Now I make $1000 less a month than when I worked.
But, on the other hand again, now I paint.
I paint alone, too. I paint pictures with God and He paints pictures with me. I've sold paintings all over the United States. The governor's committee on hiring the handicapped bought one and made this big poster out of it and sent it all over Texas. Another one was chosen by the ADA torch run and sent to major cities in the state. One was bought by Bank One for "Follow the Dream," a promotion for different people who have overcome their difference through art.
I painted a guitar-playing chili pepper once and made that design into a T-shirt. The money from selling that shirt was supposed to fund my first world tour.
Oh, well.
Life's a roller coaster, brain damaged or not. And I'm on it.
Mesko center stage. On his left and slightly behind the wheelchair is Ceci, dressed as a nurse, on right is Andy.
A few months ago, I was admitted to the hospital for a fever. My temperature
was all over the place: I had a urinary tract infection. I had a tube in
my neck because nobody could get a vein in my arm to draw blood. Right in
my jugular. I felt like a pin cushion. I didn't move for 7 days, for fear
of pulling that thing out of my neck. And they didn't move me either.
Just a few days after I came home, I discovered that I had a big problem.
And I learned a new word, "decubitus," (Ceci shows her first sign,
"Decubitus Ulcer") which, in my parlance, means "pain in
the ass," (Andy shows "pain in the ass" sign) or literally,
"bed sore." The other word I learned that week was "adduction,"
(Ceci shows "Ad . duction" sign.) which means that it's really
hard to open my knees. (Andy shows the "Legs don't spread" sign).
Man that is vocabulary I could have done without!
(Ceci and Andy turn their backs on the audience)
The sore got so bad that rehab wasn't enough and I had to have surgery on it. I woke up in a sand bed - sand and air circulating around me - I couldn't move on it, but it was the first time in months that I could lay flat and be comfortable. After the hospital, back to the rehab place. I remember those rehab hospital meals. (laugh)
"What's up, Doc?" (said in a Bugs Bunny voice)
They must have thought I was Bugs Bunny or something, because EVERY meal
tray came up with Carrots on it! (Ceci and Andy pull large carrots from
their pockets, and hold them up, arms bent at elbows) I've Never liked carrots.
(Ceci and Andy turn toward each other, and then face the audience, still
standing behind Mesko)
Note to the wise: Don't get MS. (ceci's sign) If you do, don't go to the hospital unless you absolutely have to! And if you go to the hospital, better get someone to watch your back - and cover your ass.(Andy holds up his "Cover your ass" sign)
Step right up, folks! Welcome to my proverbial rain cloud. Now showing, for one night only, my soul exposed for everyone to see! You know you want me, yes, you know you want to look at me. And, hey, I'm cuter than the bearded lady. You won't see Anybody more fabulous than me! Step in here, right now, leave your two bucks at the door (hits the coffee can with her stick) and get ready for the Night of Your Life!
I don't want your pity.
I don't need your money.
Here's what you're gonna get when you get next to me:
(fade music hear)
I'm a big freak, I'm the one you always wanted, but you haven't been able
to admit it. I know you're looking, you got that stare, you can't keep those
eyes off of me.
You like what you see? Well it comes with a price.
I've got arther all over my body, my blood runs slow. See these tight muscles? (strokes her arm) - imagine them wrapped around you. They take control of everything I do. You think these electric eyes are just for you? You like how hot I am here?(slides hand down thigh) Well, let me tell you, I have these short circuits in my brain. I walk so fast my body can't keep up. Sometimes the switch just won't turn off. You think you want to go to bed with me? There are nights I can't sleep because the pain is too great. Some mornings I can't get my pants on. Sometimes I forget how to swallow.
Know what? I'm always gonna be different. You better get used to it.
Ready for the eyes to be on you? You better be, because if you're with me,
they'll be staring at you ,too. You're gonna be the rock star, papparrazi
and all. If you stick with me.
So, Step Right Up. You think you can handle me? Then Step Right Up!!
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When you're disabled, you need attendant care, just to do the stuff that everyone else does by themselves. I've had lots of attendants. They've paraded through my house for years. And, oh, the stories!
Like the woman who after working for me for three days came in and announced, "I am leavin' with your TV."
I screamed, "Hey,you can't do that!" and reached for the phone. She proceeded to slug me so hard I ended up across the couch. I was so shocked that all I could do was watch.
She said, "Watch me, you little crippled bitch." She walked out with the new Toshiba.
Or the pot smoker whose claim to fame was the most perfectly rolled joint in the world.
There was the savvy, sharp, New Yorker who came in with neatly combed, long, light brown tresses. Within a month, she dyed it dark black and painted her nails black. I asked her, "What's up with the hair?"
She said, "Oh, I'm a practicing witch. I am sure I told you that in the interview."
I came home to find she had constructed an alter on the fireplace and was burning some wild ass smellin' stuff. She was actually a decent attendant, so I told her, "Look, no evil spells and don't sacrifice the cat and you gotta deal."
Or the ADD, OCD, shop-a-holic, Christian who ziplocked, labeled, categorized, organized, and sanitized my life all in the name of Jesus.
Not to leave out the Bipolar alcoholic, anorexic who slept on the couch for two weeks because her boyfriend beat her up because she was fat.
There was a Mormon guy who insisted that my marriage should be sealed in the temple so we would see each other in heaven.
And a recovering alcoholic agnostic, social work student who announced after only a few hours of working she was also a recovering shop lifter, turned shop-a-holic. She asked us, "Do you think if I actually pay for purchases, it's still an addiction?"
One actually said to me during an interview, "Well, I've never worked with an invalid before, but I have worked in a bank. Do you think I can get $9.00 an hour?"
The best was the standup comedian who kept me laughing so hard all the time I spent a fortune on depends.
Followed, of course, by the one who used my depends to dust with!
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Actual Lives Austin artists create amazing performances based on original autobiographical works. Please take some time to experience their stories.
