I have a couple of new reader requests. One is about DEATH! which I will write about but I need to set aside some time for it.
This much cheerier one from Roxanne is about guide dogs and I'm digging it out of the archives of my old blog. The weird thing about my life now is that I had this weird year in 2004 where everything changed. My mom died (in late 2003 actually), I lost my job, I moved, I got pregnant, and my dog died.
So everyone pre 2004 totally associated me as a guide dog user and it was a huge part of my identity. Now, lots of people that I deal with day to day did not know me as a guide dog user. I'm just this mom of twins.
I now have tentative plans to get a second guide dog when the kids are about three and a half in the summer of 2008. This will require a month of training away from my home and kids. I hope she doesn't mind me blabbing this, but the fabulous Shannon has courageously volunteered to come out and help with the childcare during that time, in which we will both start our master plan to get my guys and her daughter and future child matchmade together so that we can all have a fantabulous wedding which will probably take place in Vancouver, B.
C. Because they rock in Vancouver, B.C.
Anyway, where was I? Oh, guide dogs.
O.K. I wrote this about three years ago, so it may seem a little out of context, but you'll get the basic gist of it, I think.
Plus I added pictures now, which are also completely out of context. I was a lot more anonymous on the old blog, using pseudonyms for everything, whereas now I just don't care anymore. Mara was MGQ, which stood for Mara Gene Quagmeier.
Nik was Sven.
It was ten years ago today that I went off to guide dog school in Smithtown, New York at .
Two days later, on June 9th, I met MGQ. If you are wondering why even my dog goes by initials on this site, it is because I have a general policy of not telling the public my dog's name. Why?
Because you try rushing to a final or a meeting with a guide dog while everyone is yelling, Hi! Spot! Here Spot!
Hey Spot! Your straight shot to class ends up being a zig zag between friendly distant acquaintances. (It takes approximately 8.
7 seconds for an entire campus/workplace/public building to know your dog's name after you've told just one person. This is tested scientific fact.) So why three initials?
Because my dog has developed a first, middle and last name. Her first name was given to her by her sponsor, the folks that put up at least 5 of the 20 grand to get us both trained. My understanding is that her name was the name of the grandmother of the woman who founded Cinnabon, who was her sponsor.
My friend MRY coined her middle name G. It has come in handy when I really need her to know I'm serious about something. Siddown, I might say at a bus stop when it really doesn't matter that she's up loafing around.
M-G! siTTT dowNN! I'll whisper in a job interview.
The middle name and the hard consonants at the end of each word lets her know that I'm not in the mood for crap.
Me, a friend, and Mara at the Lincoln Memorial during an NFB Congressional Lobby trip.
Mara does Washington.
She has been in the House Chamber as well as many Congressional offices including that of the Senate Majority Leader.
The Q, which is rarely used, and the whole MGQ has such a funny cadence to it, is is reserved for times when she is off leash outdoors and fixated on a pile of goose poop or some other natural element of disgust and she refuses to come.
M! G! Q!
RIGHT! NOW! will usually break her from her lovetrance with whatever crap she's found to roll around in.
The Q came from a six-year-old student of mine, who drew a picture of her and wrote M___Q___ on the top of the page. Q is a character from the children's show Eureka's Castle. Cool show by the way, in that I-have-to-sit-here-with-these-kids-and-watch-Nickelodeon-so-at-least-its-not-Teletubbies kind of way.
Mara's graduation from college. I did the papers, but she did sit through her share of boring lectures.
So the guide dog school doesn't teach you these tricks. And what the guide dog school did teach me, I have mostly either incorporated into my subconsience or totally forgotten. I hated almost every second of guide dog school.
I dread returning. Its not that I don't appreciate what they've done for me, but as they say, some birds shouldn't be locked up in a cage. And being locked up in a cage is pretty much what guide dog school felt like.
It was only for a month. And they had such total control over everything you did and every second of your time that I about went insane. But it wasn't all bad.
I did get MGQ out of it, so it was worth it. I remember it all as if it were yesterday..
.
I, like the general public, expected guide dogs to be perfectly behaved, somber animals.
I had been at the school for two days and had yet to see a dog. On this day I was sitting in someone else's dorm room, waiting for my instructor to bring me my dog. They had put each of the ten students in a separate room and were bringing the dogs into each student one by one.
I didn't know if I would be first or last, so I just sat there waiting.
Finally, the door opened and a big yellow dog came bounding into the room.
My instructor barely even came in, he just told me to get to know her for a while and he'd be back to get me later. There was a stack of clean white towels folding on this girl's bed. M ran around, grabbed a towel and started shaking her head with it in her mouth and bounding around the room with it.
Oh, shit! I thought. She's crazy!
She's not trained! I won't get to keep her! What do I do?
What do I do? What do I do? Every once in a while she would come over and shove her head on my lap and shake her tail so hard that her whole back half was going back and forth.
She was one damned happy dog. They hadn't given us any instruction yet on how to work with the dogs. But I was so worried the instructor would come back and be mad that she had towels in her mouth.
I told her, Sit! And instantly, she sat and spit out the towel. I thought that was so cool.
When my instructor came back, I proudly told him that she had listened to me and he said, You aren't allowed to give her commands when you don't know how to do it yet! (This is what guide dog school was like. EVERYTHING was a drawn out procedure that we needed minute, detailed, instruction on.
Yeah, I already know that I'm not good with authority, Leslie.)
With D and I at the end of the Oregon Trail. Mara has traveled from the beginning of Lewis and Clark's explorations to the end with D and I.
My instructor said that I was going to walk with my dog down the hallway to the living room and sit in a chair. Easy enough, I thought, that's only about ten meters away.
It took me 20 minutes to walk those ten meters. With my dog on leash, he made me stop at every doorway, go back and repeat any steps we didn't do perfectly, any time my dog even looked sideways we had to start over.
When I got to my chair, I sat there and heard every other student go through the same painstaking process. I thought. I will never leave this chair again.
After a few days of indoor leash work, they started taking us out to the town and later into New York City. I remember the first time I walked down the sidewalk with M in harness.
You can feel a lot more of what your dog is going to do in harness than just with the leash. You can feel every head turn and shoulder movement. Compared to a white cane, its like going from typewriter to computer.
There were so many procedures we were supposed to be doing. Which foot to put your weight on, which foot to step with after stopping.
Which direction to turn when making a U-turn. How to go through a revolving door, how to push a shopping cart with the dog, how to carry luggage, how to walk on a double-edge subway platform. There was a procedure for everything.
Some you lose the second you leave the school, some you lose months later, and some you keep and don't even realize you kept them.
Mara and I were asked to be in a modeling shoot for a photography studio. There were in harness pics too, but I can't find them.
They would put obstacles in our way on purpose. They would even drive cars around and try to run over us.
You never knew when you were crossing a street and you would hear a car screeching around the corner to a stop and then an instructor would yell at you out of the window. I knew that I would be friends for life with classmate, Sven when they put a big trashcan in the middle of the sidewalk. The dog was supposed to stop at the obstacle and you were supposed to say, Find the Way!
and then your dog would calculate if it was better to go around away from the street (the default) or towards the street. When Sven's dog stopped at the trash can, Sven reached out to see what the obstacle was. When his hand landed on an empty trash can, Sven picked it up and just threw it into the people's yard and kept right on walking.
I was behind him, getting a play-by-play from my instructor who was all moaning and groaning in annoyance with him. The instructor had a strong Boston accent. Awww, man!
He just thwew that twash can wight on those people's poach! I was laughing my ass off.
I later came to blows with the school's training staff when I went off on my own to a Japanese Garden that was built on campus, donated specifically for blind students. It had specific flora with distinct textures and smells and the trails were tactile marked. The problem was, students could only leave the residence hall with a staff person, but there was never a staff person available to take you anywhere.
I was always buggy in the residence hall, and here is this garden especially made for blind people just two easy blocks away that blind people can't even use without supervision. While I was there, it was only being used for fund raising events. So one night, I left M safe in my room, and went out via cane.
I told the staff person on call to babysit us that night that I was going...
and ran out the door before she could say anything. I literally ran to this garden, cane tapping like mad. I was only there a few minutes when two staff came chasing after me.
I had broken out! We had a fight..
.and eventually I won. After agreeing to allow a staff person to show me around, I gained the right for myself and my fellow students to go there by ourselves.
Sven, me, and another student Luc, hung out there a lot together in the evenings to get away from everything and reclaim just a little piece of our independence. I still feel good about that, and hope many other blind students got to get away for a little bit on their own and go to that forbidden garden that was supposed to be made for them.
My guide dog graduating class.
I am the one with severe hair issues at the right end. Nik is in the middle with the jeans and cap.
So finally we graduated from guide dog school and M's puppy walkers (the people who raised her the first year) came to a little reception and gave me lots of little gifts. Then, I nervously took her on the plane and took her home. I remember she shook on the plane.
After going on the plane with me now probably over 100 times, that was the only time she ever shook. When I got home, I realized how much of what they teach you didn't apply to my life. I lived in an apartment where there were no sidewalks.
The only way out was to meander through a series of small parking lots. By cane I could do this by following the speed bumps and estimating angles. But M was uncomfortable without a sidewalk or roadside to follow.
Then, I would walk to school and to my job by taking a series of shortcuts that meant I had to walk across open fields. M was never taught to guide through an open space. But it would add a mile or so to my already two mile walk to class to not take shortcuts, so I had to teach her to guide across open spaces.
But she learned quickly, and I spent a great deal of time teaching her new routes and naming them new words. I would teach her how to get to my classes using left/right but then when we got there, I would name the class. Then I could just tell her, Let's go to Assessment!
Yup, Assessment was in my dog's vocabulary. Although to her it meant a building, not processes of evaluation. Once I wrote down all the words she knew, and it was over 80.
(She now also knows about 20 words in sign language. Convenient for when you don't want to interrupt someone by giving your dog commands.)
My dog barfed for the first three months that I had her. I don't know why. Nerves?
Change in water or climate? I don't know. But name a public place in Lincoln, Nebraska and my dog has probably barfed there.
The capital building, the movie theatre on 17th and R street, Claire's boutique in Gateway Mall, Target on 48th and O, The Post and Nickel, the Zoo Bar Downtown, several classrooms at the University of Nebraska, McPhee Elementary School, Bob Devany Sports Center, and a random StarTran bus or two. It eased up after a while, but man is it an experience to have to go tell the manager that you are very sorry, but your guide dog just hurled in isle nine.
At the Broadmoore Hotel in Colorado during one of our Craig Hospital trips.
She did stop barfing, but she does have one weird problem that never went away. Whenever she is in a place that either has a lot of incense, indian or asian smells, she shits.
I don't know what it is. But take my dog into Gifts from Afar and she has a little fit where she starts foaming at the mouth and turning in circles and the poop just drops right out of her. I don't know if it is an allergic reaction or what, but my days of shopping in cute little ethnic stored ended when I got M.
The only other time she ever had an accident in public was one time in the Chicago O'hare airport. She had been on the plane an exceptionally long time due to delays, and we were running to catch my connection through that long tunnel with the epileptic disco fever lights on the ceiling, and she just stopped mid run and took a crap. And God forgive me, but I had been stuck in airports and on planes for too long in a two day period; I just kept running.
Sorry, O'hare janitor, that shit you had to clean up in 1999 was my fault.
Once I served on a speaker's bureau and got roped in to being on a panel to talk about disabilities and sexuality for a college human sexuality class.
It was me, a person with mental retardation, a para and a quad. I didn't have much to say because, hey turn the lights out next time if you want to know what it's like to have sex when you're blind. Not too much difference?
So I talked a little about dating. The pretty good looking para guy's message was basically paras don't get laid. Which was funny because the not so attractive high level quad was doing his dissertation on sexuality among wheelchair users and had actually made a videotape of him getting laid.
(All for research, don'tcha know.) So he played excerpts of his tape for the class. I couldn't see the tape, but I could hear it, and you heard the usual, er, moans of pleasure.
So my dog, who had been peacefully resting underneath my chair, suddenly jumps up, looks straight at the video, and starts howling at the screen. Everyone is trying to be so sensitive and mature while watching this quadriplegic, who is right in front of them, have sex on TV, and my dog is whining and howling at him. I told her to be quiet and I started to say, I'm sorry, but then I just burst out laughing, and then everyone else did, too.
Living in D's hospital room for days on end at Craig Hospital.
But my dog has earned a few mistakes.
She has potentially saved my life on numerous occasions. I can still cross streets by using traffic patterns, but my main problem in crossing streets is the right-turn-on-red car that speeds by without looking for pedestrians. There have been several times when M has literally pushed me out of the way of one of these cars.
Then, she literally did save my life when we were both hit by a hit and run driver. We were walking down the sidewalk and were waiting to cross a driveway of a Walmart. We stopped, a car pulled up to exit the driveway and stopped, and then we went forward.
I can't see into people's cars, so I can't see what they are looking at. Many times, cars stop for me and wait, even if they could have gone, or would have had I been sighted. That is what I thought this car was doing.
But it was really just looking the other way, trying to find a space in the oncoming traffic of a busy street so it could cross over into the far lane. When I was right in front of the car, it quickly pulled forward, hitting M first and then me. M went right under the car, and I fell into the busy street, with my head landing underneath the front bumper.
I was disoriented but knew I had to move and get out of the street. Laying down under a car in a busy street with cars screeching around you is not a fun place to be. I didn't have M's harness, anymore.
M almost instantly butted her shoulder into me and pushed us both out from under the car, then I grabbed her collar and jumped up and she pulled me almost instantly to the sidewalk. Her fast orientation, which was way faster than my senses would have oriented me to what I needed to do, got me out of that street and probably saved me from getting hit by one of the oncoming cars. The car was courteous enough to stop long enough for my dog and I to get out from under it, then it sped off, never to be found.
I had bloody knees and elbows, a bruise on my head, and achy muscles for two days afterward, but was not seriously hurt. M had a scraped elbow as well, but seemed fine.
Her spot in one of my classrooms I taught in.
She laid on that same blanket in all my workplaces for over ten years.
M does a lot of little things for me that are hard to explain and were not taught at guide dog school.
She extends me senses and gives me information about the environment around me. Because I am also deaf, I don't always hear when a person is walking behind me or starts talking to me on the bus. I don't always know if something is happening down the street like a traffic accident or something.
I don't always know if the person walking right up to me is someone I know or a stranger. I can read M's reactions to the world around her and that gives me information. She can't always tell me who or what is going on around me, but she tells me that something is and which direction, whether it is an ok thing, a strange thing, or a dangerous thing, and then I can investigate further if I need to.
She lets me know who is a stranger and who is a friend from far away, just based on her reaction. (Another reason blind people don't let everybody pet their dog is so the dog's friends and the owner's friends are one and the same. If I let her, M would be best buds with every smelly homeless guy on the train.
She has an affection for smelly people that I don't share with her).
Pals with our Kansas bunny, Pheobe.
People say with great reverence, A guide dog is not a pet. You have such a special relationship. Well, yeah and no.
I don't like it when people get all sappy-romantic about my guide dog and act like its this magical, mystical thing that only Angels in Heaven can create. A relationship with a guide dog is different from that of a pet dog for many practical reasons. First of all, dogs are just living things that are less intelligent than humans, but still have a degree of intelligence.
Most people don't have eight hours a day for two years to educate their dog into reaching its full potential. My dog had that intensive education. So my dog has a Ph.
D. to most dogs who have never went to preschool. There is going to be a difference, but it isn't that my dog is magical or special.
She's just educated. Going along with that, my dog gets to experience everything people do, whereas most dogs are limited to their houses and parks. My dog knows the routine in a restaurant, the grocery store, the airport because she has done it a thousand times.
She has a context to work with that other dogs don't have. So, if you took two equally intelligent people and gave one a Harvard education and let him travel the world and gave the other one no education ( or three weeks of preschool) and he had to stay in his house and yard his whole life, there is going to be a big difference in their ability to understand and adapt to the world around them. M is a purebred lab and had good breeding and all that, but she just has experiences that most dogs don't have.
That is why she acts different, she is not any more mystical or special or magical than any dog. Also, she gets to stay around me 24 hours a day. The longest M and I have been apart has been 5 days, when I was in the hospital.
We are apart a few hours here and there, but in ten years, that is it. Most people don't even spend that much time with their own children in ten years. When you are with someone 24 hours a day, (she even stays in the bathroom when I take a shower), you build an incredible ability to communicate without words.
You know that person's routines, how they are going to act, what their moods are. So M and I know each other and can communicate extremely well without much effort, not even many words really anymore.
Being on the beach was her most favorite thing on earth.
Its not that it bothers me so much that people romanticize my dog, it mostly just bores me. And sometimes there is this implication that my dog completely takes care of me and that blind people can do nothing without a dog to help them.
After ten years of EVERYBODY in the universe talking to me about my dog, I'm mostly just bored with the topic of dog altogether. Literally, now it all sounds like dog, dog. Dog, dog, dog.
And I push play on my prerecorded responses. This is a rare thing for me to write so much about my dog. But, she has been a good dog, she has been lugged all over the country with me without complaint.
She has endured endlessly long days of sitting quietly under my desk, hot cement under her feet at the bus stop, five mile impromptu hikes when we've missed the bus, she has missed out on being a slobbery, dirty old dog in my need to have her clean and well mannered, she has put up with rock concerts, smoky bars, and taunting behaviorally challenged children, evil right-turn-on-red drivers, and my occasional mess-up of going out with her for twelve hours straight without finding any opportunity for her to drink water save me letting her drink out of the public bathroom sink. She's a good dog, and has served her ten years well.
Where I spread her ashes.
I still miss her.
This is super long and unedited, but if you want to read about my sexlife, this is probably your only chance.
...and if you don't want to read about my sex life, skip it.
I just wrote a long series replies to a long series of emails, and I'm just going to post it.
The email is from someone I know and it was a part of a several larger dialogs, so I'm condensing (ha!) and cutting a pasting.
It says in part:
I know this is none of my business, but I'm confused. You can tell me to go jump in the river, but I'm just going to ask.Well, first of all, I never said I had sex with all those other guys. Can I just get that in right off the bat before it makes me crazy?Are you and D a couple that are romantically linked? You say you've been together for 12 years but then you talk about dating others during that time. I'm just going to
ask this, and again, you can ignore me.You talk about your lack of sex life, then you talk about you and D as a couple, then you talk about dating? Do you and D have it set up so you can date other people because he can't have sex? Are you friends with him and having sex with all those other guys?
Would you two be married if he weren't disabled?I'm uninformed, so I'm asking to educate myself. I'm not trying to judge you.
Something doesn't jive right for me with your blog.
And Demi Moore?Really? Was he friends with Bruce or Ashton? What did he say about her?
I know I'm being defensive here, but I did not, in fact, have sex with every guy I ever dated, even some of the ones that were more longer term relationships. Okay? Okay.
Sigh. Now I feel better.
Second, yes. Demi Moore. But neither Bruce or Ashton.
This was in-between. I think the guy's name was Ollie something. Someone who reads more People Magazine than I do can probably figure out who it was.
D.R. was heavily involved in a martial arts organization that this guy was also involved with, same for Chuck Norris.
And get ready to laugh: all he said about her was that she wasn't that big of deal and I was better looking than her. Translation: Lisa, please accept this colossal bullshit lie of a compliment so you will forgive me for sipping cocktails in beautiful mountain resorts with drop-dead gorgeous actresses and rich people rather than spending my week saving you from the ghetto bus you have to ride to your ghetto job.
Okay, moving on now. Many other bloggers have written about this issue you raise about confusion with aspects of their stories. Autobiographical writing is extremely tricky.
You want to tell the truth, but in the end, it is only your truth through your perception of reality. You want to do it in a way that doesn't hurt others and invade their privacy, but that is a land mine that as hard as you try not to, you will eventually inadvertently trip at some point. You also have a limited amount of space and time to write (and limited audience in that people will only read so much) so you round corners and edit to make things fit nicely into the topic at hand.
I've been told many times that my posts are too long and go off on too many tangents. I know this is true. But I keep trying to make sure all the loose ends are cleaned up and it is impossible to do.
You end up writing not your life story, but little pieces of a huge jigsaw puzzle. Then you round off the rough edges of the pieces to make it fit nicely into the current topic at hand.
Then eventually someone comes along and says, this puzzle piece doesn't fit with the one you wrote six months ago. And they'd be right. This happens in real life, too.
For example, several years ago I went with D to look at a house that his parents were interested in buying. His mom introduced me to the real estate agent as D's wife. I let it go.
When was I going to see this real estate agent again? I was just a peripheral part of what was going on, the buying of someone else's house, so my marital status was irrelevant. Then, a year later, my parents used the same real estate agent to buy a house.
I met him again and he asked me about my husband. Your HUSBAND! my mom exclaimed.
I politely said that D and I were not married but just lived together. My mother said something to the effect that we were just friends and roommates. Both the mothers come from a generation where there needs to be an explanation for a man and a woman living together.
They both took two different tactics to smooth out their own perception of reality. I let it go again. Another year passes.
I meet this same real estate agent on the street in my neighborhood I'm now living in with my dad. I am visibly pregnant. We small talk and I end up telling him that I am living in my father's house.
With D? Well, no. He says nothing more about it and we both go on our way.
So, who knows what he thinks, right? At what point am I supposed to sit down with the real estate agent and sort it all out for him, you know? Your life circumstances are framed by other's own perceptions of them.
It is easy when you fit the mold. Like if I was married to D and we lived in a house and had children. But since I don't, and I can't explain everything to everyone every time, I know that we are going to cause confusion.
That is part of the reason that I have a blog. So at least somewhere I have a forum to tell people what is really going on.
At least autobiographical writing in a blog is done in real time with a forum for other people to comment. There have been a few occasions when I have written something and real life people with comment or email me and say, That isn't the way I saw what happened that day. or That was not what I meant by what I said.
This is a good thing, because then you can modify your blog to make it more accurate. I have done this at times. But it is still tricky.
Your confusion about D's and my relationship probably comes partly from me and my rounding of the corners of entries so that they don't exactly fit with other entries to the close observer. But it also comes from what I assume is your perceptions of reality that are different from my reality.
You assume that D and I can't have sex or can't have a relationship, or have a compromised relationship that in some way needs to be supplemented by my dating other men. You are not the only one to assume this. I have fielded questions for several years from people (strangers, friends, family, even professionals in the rehabilitation field) about D's and my sex life.
People think they can come right up to me and assume things out loud about us all the time.
Interestingly, I have asked D if people make these kind of comments and assumptions around him and he says that no one has really ever asked him about his sex life except for his mom, who has been known to paper clip articles and even advertisements for sexual function gadgets and medications for him.
(For which he says has scarred him for life and cringes in horror whenever she does stuff like this. I just think its hilarious. If I have to field the sex topic from the public, at the very least he should have to have to deal with his mom.
)
So then this is hard because on the one hand, I don't have a strong desire to go on and on about my sex life on my blog. But on the other hand, I think disability and sexuality should be discussed.
I think it is stupid that it is taboo, I think that disabled people are thought to be asexual beings and that isn't right. I think there is a lot of misinformation regarding the physical functioning and specifics of how or whether disabled people can have sex. But then, do I want to put my life out there as the poster child of disability sex?
Not so much. But obviously I blabbed about it just incoherently enough to confuse you, and I do appreciate that you just came right out and asked, so I'm going to try and answer your questions a bit here.
First of all, a bit of disability sex 101. I'm going to share this as long as we understand that I am writing not specifically about me and D but about people with spinal cord injuries in general. This is what I've learned from books, hospital staff, other partners of people with spinal cord injuries that I've talked to, personal experience, and whatever else.
Here is a funny story to start us off:
When I was in college, before I met D, I was asked to be on a panel for a human sexuality class. It was me, a guy who was shot in Desert Storm and was a paraplegic, another women with a disability that completely escapes me now, and a high quadriplegic middle-aged man.
I don't know why I was even asked to be there. Blind sex is no different than sighted sex, you know? So mostly I just talked about dating.
The para, who was pretty newly injured, said point blank, When you are in a wheelchair, face it guys, you just Don't. Get. Laid.
He said it sucked but that's the way it was. I took it as word.
Then not 15 minutes later, the quad takes his turn to talk. He was much more disabled looking and actually much less good looking than the para. He happened to be doing his doctorate research on SCI and sex.
So he actually has a VIDEO of himself having sex with someone that he shows. The TV was behind me and I couldn't see it anyway. To tell you the truth, I didn't even look.
But I could tell that this quad guy had just rocked the world of the newly paraplegic guy. He was next to me and his mouth was just gaping open. And then, if this weren't all funny enough, my guide dog-- who had been resting quietly under my chair--all the sudden got up and started barking and growling at the video.
It was hilarious. I actually think my guide dog kind of broke the mood of embarrassment we all felt and lightened everyone up. But, anyway, that was the first time I ever considered the possibility of guys in wheelchairs being able to have sex.
So, guys with spinal cord injuries can have sex. Depending on their level of injury and severity of injury, they can either have just plain regular functioning like anyone else sometimes.
Or they can have erections but not ejaculate, or they can have trouble with erections, yet ejaculate, or they can do both yet they have a very low or no sperm count. Wheelchair does not equal no sexual functioning in spinal cord injured men. However, they can have a myriad of different levels of functioning.
Also, many men have success with things like medications for erectile dysfunction. I am not going to tell you what D's functioning is specifically, but I will say that we did go the infertility treatment route because he had very low sperm count.
From the woman's perspective, (I'm considering what other women have told me or I have read about in addition to my own experiences) it's not as big of deal as you think. It's not that different. You work around things and really, there is not that much you really have to work around.
In addition, there is the possibility of certain advantages, in that hey, it can--ahem, be all about you--you know? That's not such a bad thing. I know I'm going to come off sounding slutty here, but you know where I've only ever seen a problem?
It's when a woman has only ever been with a man with a spinal cord injury and she wonders what it would be like with others. I understand the romance in saving yourself for just one person, and I respect people's decision to remain virgins until marriage, but sometimes I just think there is a lot of advantage to having a bit of experience and seeing what's out there. You get to see what the differences are and see what you really want.
You get to decide for yourself what is a big deal to you and what isn't. Because, although some men are shall we say, naturally talented, the vast majority of men can be trained in. If you really love 'em and are willing to provide on the job training then there is really no make or break thing about sex.
I'd like to tell these young girls that who are dating a guy with an SCI and are curious about others. It's not that big of difference. Really.
And as far as my bitching about my lack of sex life...
well, in the past two years, I've been pg, had a huge healing cesarean scar, or had two little rugrats around. D has been hospitalized for months on end. On top of that we live in different locations and lack childcare.
You do the math. Our circumstances are far beyond a little old spinal cord injury. Most of the time it is not a big deal to me in the least.
But, yeah. Sometimes I go for long stretches where I miss it. Many times it has more to do with missing his presence and affection than the actual act of sex.
People don't see disabled people portrayed in sexual ways anywhere in the media so they can't (or don't want to) imagine that it exists. I think of myself and my perception of gay (male) sex over time.
I don't remember ever having a problem with lesbian sex. But when I was younger, I thought male sex was disgusting to think about. Well, lesbian sex is all over the media because of the patriarchal obsession with watching sexual acts without having to watch other men perform it, so lesbian or female-female sex is more accepted and everywhere.
Just look at any Girls G*N* W*LD commercial. Male sex has not been portrayed much. Now that I've known some gay men personally and have seen more men kissing and stuff on TV, it is much more acceptable to me now.
I'm desensitized to it, or sensitized to it, whatever the case may be. It seems much more natural and healthy to me now. If disabled people were portrayed in more sexual ways, people would also come to see it as natural and healthy.
Switching gears now, finally I'll give you a quick and dirty chronology of D's and my relationship. This will be full of rounded edges, by the way.
In 1994, I met D and his brother, Q. Q was interested in me.
I liked Q. But Q was a former marine and at the time I had a Marine-phobia, due to the fact that I pretty much associated people in the Marine corps as being people who would rape me. (I wrote a lot about this on my other blog, and it was so long ago I don't really feel the need to talk about it much anymore.
But this was a date rape situation that happened to me in '89. But besides that, what is it with all these marines ? It's not like I was totally out in left field here.
)
Because of my Marine-phobia, I drafted D into being Q's and my constant chaperone. This is illogical on many levels, as Q had never done anything to deserve my fear, and on the outset, D had never done anything to earn my trust, either.
I just felt like wheelchair = safe. Like just because he couldn't overpower me meant that he could save me from someone who could? Anyway.
...
Then I found that I really liked hanging out with the both of them much more than I liked hanging out with any one or the other. So then I tried to figure out how I could frankenstein them into one morphed together perfect boyfriend. Q was fun and outgoing and kind of adventurous.
D was quiet and reflective and mature and intelligent. I wanted all of it. But that didn't work for very long, and I needed to make a choice.
I highly suspected that Q would be over his infatuation with me in about six and a half more weeks time, if even that long. That's just the way Q worked. And I was getting to understand more about D and his disability.
So I chose D. It took D a little longer to choose me back, but he did. By fall of 95, we were dating.
We dated for two years exclusively until 97, when we both moved here. He moved to school two hours away, and I moved to the city to work.
We decided to stay friends but give each other the freedom to see other people and see what would become of our new life. During this time, I dated D.H.
and J.R. and had a brief sequel with N.
O. D heard about all of these guys. We talked nearly everyday.
Which was a problem. But made me realize that D would probably end up being my true family.
I realized this slowly, over time. D had came up and stayed with me one night when he had to come to the doctor or something while J.R.
was living in my apartment. J.R.
said he was fine with it. D couldn't get into my bathroom himself at this place, and could only sleep on my bed. So I asked J what he wanted to do.
He could sleep with D, I could sleep with D, or he and I could sleep out on the living room floor, but he would have to tell me when D needed to get up and go to the bathroom. J chose to have me sleep with D. So I did .
With the door open. The next morning, D and I were talking and J was sulking in the corner. Later, I asked if he had a problem with the sleeping arrangements.
He said it wasn't that, it was that he was watching D and I finish each other's sentences, know each other's thoughts, and live on each other's vibe like J and I had never been able to do. He said that he (J) was the wrong guy for me.
I protested, but D.H. and N.
O. said the same thing. Except without the sulking.
I eventually started thinking that maybe they were right. I kept coming back to D. In late 2001, we moved in together and I have not dated anyone else since.
D and I have never gone more than about 3 days without speaking in 12 years. We have never gone longer than about 6 weeks without seeing each other and those were from out of town hospital stays.
Our relationship is not perfect and it has been a lot of work. But most of the time it works. The wheelchair aspect of it is not a big deal, but the health stuff has been challenging to get through.
We are committed to being a family and raising our children together.
Would we be married if we were not disabled?
Impossible to say. It's like asking if you would be with your husband if you were born in Africa to AIDS infected parents. You'd be a completely different person.
We do not marry specifically so that D can keep his military health insurance that he receives because his father is a retired marine and he is considered a disabled Dependant. If we married, he would no longer be considered a dependent. The loss of that insurance would be financially devastating and would be unrecoverable.
So there we are. A better question to ask would be if whether there were decent health coverage in this country would we be married? Possibly, though I'm not kidding when I say I like being single.
I don't think we need the government to give us a piece of paper that tells us we are a government approved family. We already know we are a family.
Remember how I said my left wrist hurt?
Well, now it is all swollen and shooting pains and I can't hardly put any weight on it. I'm assuming a sprain and doing the RICE bit. (Rest, Ice, Compression, Elevation).
I'm hoping it gets better in a few days so I don't have to go to the doctor, but it has been three days and it has stayed really swollen. So, I haven't wanted to type much. Or think much, since I've been popping the Advil as well.
So I've been spending my time doing other stuff. I opened a box of sentimental crap that I had packed away that hasn't been opened in over three years. It just has pictures and cards and memorabilia from the past 18 years of my life.
Someday I should organize it into scrapbooks or something. Anyway, I found the obligatory bunch of mix-tapes given to me by old boyfriends. Boyfriends gave me a lot of songs.
I think it was partly because I couldn't see and they didn't know what else to give me. And also because I've dated a lot of guys who I think are not necessarily good with words so they let a big 80's power ballad do their talking for them. Isn't that why power ballads were written?
So guys could get laid?
This post is for you who are bored out of your mind, or procrastinating a great deal and desire a total time suck of my YouTuberGeekery. Here are some of the highlights of songs I've been given from circa 1988 to 2001 or so.
Many on tape. I haven't even had a tape player for years, but D gave me an old one for the kids' room, so I finally played some of these old songs. I'm going to identify the old BFs by first and middle initial, but I'm disguising a few details.
And by the way, D knows all these old boyfriend stories and vice versa and we don't get hung up on talking about people we used to date like some other couples. So don't get all uncomfy about him or any of these other guys reading this, because they all pretty much know each other anyway. And they are part of who you are today.
Them and their bad 80's songs. For the record, I do realize my weird dating M.O.
of being a highly skilled breaker-upper, but with a chronic case of serial monogamitis. I have these deep, intense but somewhat short relationships, extremely amicable break-ups and, many times, lifetime friendships, but unlike most of you all, they've all resulted in no ring on my finger. Now I realize that I just kept going back to D, so I'm okay right here for the long haul I guess, and there are a lot of things I like about not being married anyway.
Makes for easier tax returns. Anyway, It is fun to go back and remember all these old songs that were oh so very important at the time.
OK, so K.
L., an all around good guy that I still am in contact with, gave me this hair band classic. You gotta remember here that I lived in the Midwest.
In the Midwest, guys didn't go for Depeche Mode or Erasure or any pansy ass music like that, it had to all be metal. And for the females, metal gave us the power ballad. Here is I Remember You by Skid Row, whose lead singer Sebastian Bach was MUCH too pretty to ever be bad ass, no matter how hard he tried.
Look for yourself. His face was just too beautiful for metal.
For a brief few weeks one summer I dated K.
C. I don't even remember his middle name so that is his real first name and his nick name initials. This was the summer I saw Robin Hood four fucking times in the theatre because that was the movie every guy wanted to take you to.
I went the first time with my mom. Then my neighbor guy (who dated my friend, not me, but we hung out together occasionally) begged me to go see it with him. Then this guy I only dated once (don't remember his name) took me to it after I assured him in the line at the theatre that I had not seen it before.
Oh, geez, now I even remember going to it with the above K.L. and his friend E.
S.--so that is five times! Five times I sat through this godamned movie!
Curses! (It is the price you pay for not having your own transportation, in this case, IIRC). Then K.
C. took me to see it after he was all gung ho about it and I assured him that I would be fine going to see it an, ahem, second time. By this time I was humming the soundtrack in my sleep, so K.
C. bought me the soundtrack. He didn't give me this song specifically as a meaningful song for me, but he put it on a mix tape and I always associate this song with the summer of Robin Hood and K.
C. (Everything I Do/Bryan Adams)
I met N.O.
and fell completely head over heals for him for a month in New York and then he left to go overseas and I left to go back to the boring Midwest and we lost track of each other for eight years. I had looked for him off and on and he said he even came to Nebraska once to see if he could find me, but I was in Kansas at that time. Suddenly, without even trying, I found him out of the blue through a work contact.
And I found out from him that he put his parents address (so I would always be able to find him) in a Jimi Hendrix CD he gave me 8 years before. I never looked inside the liner notes for eight years, and then I found it! We now talk all the time, although we still live in different countries.
He introduced me to Jimi Hendrix, and specifically the song, Little Wing. (I can't find a good copy of this, but this is the best audio I could find.)
Here is a song from Q.B.
He gave me this song in not a romantic way (obviously, it has the word placenta in it, so how romantic could it be?), but he would record songs that he liked for me and write out the lyrics and stuff. He was really into this song and thought it was cool when I signed it.
I always think of him when I hear it. But when I became pregnant right after my mom died, it came into my head again. All about the circle of life and such.
(Lightning Crashes/Live)
D.H. I had no business dating D.
H. There were early signs, like when he took me to a hockey game and got drunk and started yelling, I want to drive the Zamboni! to the zamboni driver.
I think it was temporary insanity on my part. Yet, he was a lot of great fun when he wasn't drinking. We don't really see each other anymore, but we left on amicable terms.
Here's one that we joked and laughed about as being our song. (My Favorite Mistake/Sheryl Crow with Eric Clapton)
Next would have to be J.R.
He and I followed each other around the country for a while. Most of my memories of him surround saying goodbye in airports. It got too hard and we broke up because of geography.
That and the fact that he was crazy. I'm not being cruel there, I think he would admit this himself. His brand of crazy stemmed from being too overcompulsively self-aware, so he was self-aware enough to admit his own level of insanity.
Then, for a while we had what I called the QTA. The Quarterly Torrid Affair, where we would meet up for a weekend but with the understanding that that's all it was. That slowly died off, though when QTAs started being canceled.
I'd have a surgery, he'd have a business trip. Then there was his trip to Aspen where he hung out with Demi Moore (not in a together way, she was dating one of his friends), and then he ditched me on Thanksgiving to go to China with Chuck Norris (Again, not in the together way, business trip.) And that was that.
I can't compete with Demi and Chuck and Aspen and China. D always said he was too good looking for me anyway--it's true, he was out of my league..
.that and the fact that he was crazy. He sent me Tori Amos' little earthquakes because he thought I would identify with several songs on it, which probably pretty much indicates that he thought I was just as fucked up in the head as I thought he was.
Mostly, I identified with China because he gave it to me right after the China thing. We occasionally email each other and send Xmas cards, but he's doing his own big world thing now. Here, watch Tori slither and writhe on wet rocks:
D.
D. and I have shared and traded several songs over the years. Here is one of my favorites that he gave me.
I especially like this version of I Shall Believe because the beautiful voice of Pat Benatar is on harmony. Remember back when we had cool women singers like Pat Benatar and Debbie Harry and Stevie Nicks? I think Pat Benatar can probably fart out a note better than Britney Spears can sing it.
Anyway, this is a nice song that D gave me during a hard time.
Okay, that is the boyfriend litany. Stay tuned for old high school pictures of me or home movies or something else equally boring where I don't have to think and type.
Does anyone know how long a sprain takes to heal?
Okay, so here is my CV, anecdotal style.
I'm gonna start from the very, very beginning. Not to be annoying, but just because some of those old high school jobs are funny. I may disguise specific details and the dates are approximate, because well, we've all learned from Dooce now, haven't we?
- I went to an in home day care provider from the time I was six weeks old till I was around 10. This daycare provider is now in her 80's and is a member of my family.
(I have referred to her as my fake grandmother before.) I mention this because when I was seven years old, I started having duties to take care of the younger children there. This is when I really started to think that I was good with kids and that maybe I wanted to be a teacher or something.
When I was 11, my fake grandmother's husband died and she started to take in a LOT more children. I would go over sometimes to help out.
- I started doing paid work for my mother's employer, a mutual fund company. This is funny. My job was to put an updated supplemental sticker in mutual fund prospectuses (prospecti?
). I got paid a penny a prospectus.
- I had done a bit of neighborhood babysitting, but this summer I worked for one particular family everyday, full-time.
- I worked at my mother's mutual fund company.
This time I was actually in the building doing microfilming, sorting, paper shredding, any easy paper moving job.
- Same as above, but only a few days a week.
- I started working at Taco Bell part time as mainly a taco shell fryer. To this day, this ranks as absolutely the worst job in the history of every job I've ever had.
It was hot, disgusting, physically demanding, fast-paced, and dangerous. I still have scars on my hands where I flipped a burning hot taco rack onto my hand accidentally. I hated every minute of it.
I worked here until just before I graduated high school in 1988.
I wore sleep shades as blindfolds for 8 hours every day. I took classes in Orientation and Mobility, Cooking, Sewing, Wood shop, Computer Technology, and we had Seminar where we were brainwashed into reciting verbatim National Federation of the Blind philosophy each day.
- Small, private liberal arts college hired me to Braille the campus.
I had to take one of those Braille label making guns and go around and Braille label every. god-damned. room.
It was boring and the gun never worked right and I did not finish the entire college by the time I left.
- I spent the summer working for my then-boyfriend's mother.
I stayed at her house and took care of her nine-year old daughter for room and board. She had NO MONEY. I mean, she would give me ten dollars to feed us for the week.
I learned how to stretch food and live on white day-old bread and lettuce sandwiches. I admired her though. She was recently divorced and took a job far away to try to get herself back on her feet.
So we were alone a lot. This was WAAAY out in the country in the middle of the Nebraska Sandhills. It is a different life out there.
I learned how to always have extra food for whomever might drop in. I learned about the winter wheat crops. I learned about 4-H calves and FFA.
I really look back fondly at this summer. Despite the financial challenges, It was a lovely time. I'm so glad I did that.
- In the fall, for financial reasons, I transfered to Big, In-State University. I had a double major in Elementary and Special Education.
- I had a practicum in my first elementary school. A third grade class where I was supposed to aid a boy with cognitive disabilities.
As part of getting to do the practicum, I had to take a series of courses at a Community Action Center dealing with race relations. This is where a bunch of savvy black women kindly laughed at my lilly white self and attempted to straighten my ass out. (I'm still working on it!
)
- At some point in the 89-90 school year, I volunteered to provide childcare at a meeting for the ARC. The ARC is an advocacy group for persons with cognitive disabilities.
While there, I offered private childcare services to anyone who needed to occasionally get out of the house. I left my number. By the next day, I had 37 messages for people wanting childcare from me.
I knew I had found a need and I was on to something. I registered with a funding agent and became a certified respite care worker and had more work babysitting kids with disabilities than I could take on for the next four years.
- I took on one family specifically on an everyday basis. I took care of the amazing Tom every weekday morning from 6:30 till 10:30 for the next two years. Tom was a premature twin (his twin died at birth) with very significant disabilities.
He used oxygen and had an NG tube due to some severe lung and eating difficulties. I totally fell in love with this kid. He was such a blast in his own quirky ways.
Naim reminds me a little bit of him. Blond, funny faces, so particular and adamant about things.
- My practicum this year was in a self contained 4-6 grade classroom with nine students labeled Severely emotionally disturbed Duh Duh Duh Dummmm!!!
They weren't that bad. They were fun.
So, although I know much of the ASL vocabulary (it is very similar or the same as SEE) I do not know ASL grammar and structure very well at all. I can get by signing to an ASL user, but it is a struggle.
In particular, I did adult literacy in Braille for the blind kids who had gone through public school never having been taught Braille and now as adults they couldn't read or spell the word CAT. There were a lot of them. I mainly worked with two very intelligent students who had always worked with books on tape all their lives but could not write or spell because they were never taught reading and writing in school.
I just had to start from the beginning and teach them to read.
- More of the same.
Working with Susan and her blind clients, babysitting kids with disabilities, and doing practici. I'm having trouble remembering all the practici I did. There was one 20 hour/week one every semester.
I worked in a lot of regular ed and special ed classrooms, resource rooms, etc.
- I student taught in the fall of '93.
I worked in an LD pull-out resource center and then in a general ed kindergarten.
- The fall I student taught, I had severe financial problems because student teaching was so full-time and I couldn't get in all the previous work I had done.
Student teaching is one of the only college interships where you have to pay them, they don't pay you. I ended up working at a bar on weekends with one of the mothers from my student teaching school for several weeks to get some cash. That is pretty much all I want to say about that.
- I graduated in December of 93 with a Bachelor of Science in Education. (You may have noticed that it took me five and a half years to get this done.
Sigh.) I was dual-certified to teach elementary education and special education: mild and moderate .
- In the spring, I was a grocery store clerk while I applied for teaching jobs and got nowhere. I mean nowhere. I graduated with a 3.
5 GPA and was awarded an outstanding student teacher award. I never had a bad practicum evaluation. My friends that were less qualified were getting jobs left and right, but I was getting treated rudely and shown the door.
- I applied for grad school and was accepted and offered an in-state tuition and work study financial aid package at Big State University the Next Boring Midwest State Over. My major was special education: Severe, multi-handicapped and deafblind.
I picked this major, these kids, because I knew from my previous work in Nebraska as a respite care worker that these were the kids that nobody wanted to touch with a ten foot pole. I knew there was a need and hoped that this need would circumvent any problems people had with my own disability. I also knew that these kids were fun to work with and were not worthless, throw away kids.
I had grown very attached to many of them. These were kids who were usually wheelchair users with sensory impairments, with cognitive impairments, with behavioral issues all at the same time. These were my kids, and still are.
- My work-study job at the special ed department was as a receptionist. I answered the phones and did work for all the professors.
Not very glamorous, but I was in the heart of the place. I knew every professor and what was going on everywhere. This was really a fun job.
- I also got picked up as a Graduate Research Assistant in the department soon after starting as one of the receptionists. My first job was working on a personnel prep grant that recruited Native Americans to become sped teachers.
This was fun because we worked with a lot of people on the reservations in remote areas by giving them computers, modems and Internet access. This was where I learned simple HTML and got on the web and built web pages. Where I got hooked to the net on Usenet and such.
- My practicum this year was at a really fun elementary school where I planned and implemented IEPs for two specific students with severe disabilities. Both students were foster children to a mother with about 15 foster kids.
I would work with this mom nearly every semester at KU. It seemed like I always had at least one of her kids.
- We lost our personnel prep grant and I lost my main job. Luckily, just a few weeks later I was picked up on a grant that provided training to teachers in positive behavioral supports and functional assessment for students with severe behavior problems. I really learned a lot at this job.
I was responsible for assembling all the training materials (huge notebooks full of stuff) and attending and assisting trainings. Great way to learn stuff is by having to type out all of your boss professor's notes and citations and sit there at the copier while you copy article after chapter of book learnin' material.
- I think my practicum this year was the Montessori school where my job was to help them integrate disabled students into their program.
- Also this year I did a lot of volunteer work for the National Federation of the Blind and went on some trips to DC where we lobbied congress and also went to some conventions and stuff.
- Oh Duh!
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