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Ayesha
(posted by Ayesha (ayesha) on Monday, September 28th, 2009 at 2:43 am)
All of my musical theatre fan friends will appreciate these :-D

Broadway's Favorite Characters: Where Are They Now?
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Ayesha
(posted by Ayesha (ayesha) on Tuesday, November 6th, 2007 at 5:35 pm)
Mostly Chewy and Elphaba, but one lovely one of Fiyero too.






More here.
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Ayesha
(posted by Ayesha (ayesha) on Sunday, November 4th, 2007 at 3:16 pm)
Finally something that comes together more or less as planned...our Halloween decorations turned out amazingly well! Despite some loser who stole a few items we'd put out a couple of nights before, the display was a success. The trick-or-treaters loved our house and I must say I'm proud of my design work, especially since this was the first time I'd ever put together a project like this. I will also be forever grateful to my sweetie, who, upon seeing me in tears after the items were stolen, braved Party City the day before Halloween and brought back a ton of even more amazing props. She rocks!

We had a 6 ft. animatronic skeleton pirate singing songs, an evil animated talking doll, talking skulls, a tombstone with hands trying to claw their way out, a hanged skeleton in a lei and grass skirt, and much, much more.

Now for the pictures...







Many more here.
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Ayesha
(posted by Ayesha (ayesha) on Friday, January 5th, 2007 at 6:18 pm)
I made a New Year's Resolution to journal at least once a week, so I'm trying to start out on the right foot (wheel?) by taking up this bit of controversy in the news: The Ashley Treatment.

Ashley is a 9-year-old girl with severe disabilities. She has the mind of an infant and cannot walk, talk, or feed herself. Her parents made the decision to keep her in a child's body forever by using hormones and surgical procedures. They insist that it was done to protect her quality of life, not for their own convenience as some have alleged. However, I believe that the truth is more complex, and in some ways, more disturbing, than either of those excuses.

The media has been emphasizing the stunting of her physical size, which I consider to be the most justifiable portion of what was done to Ashley. Having gained about 50 pounds over the past two years, I can attest to the fact that weight makes life with a disability more difficult. It is harder for me to care for myself, and harder for me to get back in shape and regain the abilities I have lost. Moving my body is tiring and at times, painful. I am more prone to various health problems since my weight gain, and can see how that would be magnified exponentially in a completely immobile person. It is also more difficult for others to assist me - and as a person with full mental abilities, I feel bad about that.

It does seem that reducing Ashley's adult height/weight offers benefits for her, that it may keep her healthier and more comfortable. As such, simply limiting her size may not be unethical - if doing so has no negative health consequences. However, they seem to be inducing a condition known as primary amenorrhea, which leads to osteoporosis and other serious health problems. Due to her immobility, Ashley would already be at high risk for osteoporosis, so she is in real danger now. In time, her bones may become so fragile that just moving her could lead to fractures. She would then be extremely limited and unable to participate in the activities for which they kept her small, as well as suffering pain whenever a fracture occurred. Still, their reasoning behind this portion of the treatment seems more solid than the rest.

However, based on what I have read, I believe that the primary goal of her parents was not to keep her small, but to keep her physically a child in all respects. You see, Ashley's parents didn't just use estrogen to halt her bone growth, they also had her undergo a hysterectomy and removal of her breast bud tissue, which means she will never develop breasts. They completely desexualized their daughter and transformed her into an eternal child. They have justifications for this that supposedly benefit Ashley, but they fall apart quickly when one examines the non-surgical alternatives.

They believe that having a period would have been uncomfortable and difficult for Ashley, which makes sense, but they could have put her on Depo-Provera or continuous birth control pills. Neither of those are perfect, and carry some risks, but they are an alternative to removing body parts. The breast bud removal was supposedly done because large breasts run in the family, and her breasts would have been generally uncomfortable and "in the way" of her wheelchair chest strap. Also, breast cancer runs in the family. I find these reasons ludicrous - they could have strapped her into the wheelchair some other way, and done breast reduction surgery IF and only if she had discomfort from her breasts. And regarding breast cancer, well, I guess my parents should have done the same to me given the fate of my mother, grandmother, AND great-grandmother. Few people are as high-risk as I am, but I have chosen to keep my breasts, and be monitored carefully. They could easily have made the same choice for Ashley.

Ashley's parents also seem to have an extreme fear that their daughter will be sexually abused, and get pregnant. It is true that an alarming percentage of disabled people, especially mentally disabled and/or institutionalized women, are the victims of abuse, so their fears are not unfounded. However, their "solution" to this problem is an ineffective one. They believe that not having breasts will make her a less appealing target, but they forget that a pedophile would actually be more attracted to her as a result of their choices. They also fail to recognize that rape is about power, not sex. A severely mentally disabled woman is a helpless victim, whom an abuser will be attracted to because he or she can feel power over her. Whether that woman has breasts makes no difference at all.

To remove a woman's sexual organs because she might be sexually assaulted is the worst possible form of "blaming the victim." The solution is not to render severely disabled people sterile and sexless, it is to stop the abuse. Hiring quality, well-paid caregivers, placing cameras in group homes and institutions, accountability on the part of management, and severe sentences for offenders are just a few ideas that would make a difference. No child or woman should be mutilated because of what someone else MIGHT do.

No, keeping Ashley small, liftable, and bedsore-free is not what this is about. Ashley's parents seem to have a distorted perception of her reality - they refer to her as a "pillow angel", as if she were a pet or a doll. They actually say that they are disturbed by the idea of a "child's mind" having an adult body. They want their daughter to remain forever a child, and in doing so, they are denying her reality. Ashley is a 9-year-old child right now, but one day she will be an adult. A severely, profoundly brain-damaged adult, yes, but still an adult. Society doesn't like to see people with disabilities as adults. We're not as cute, or pity-inducing, and there's that pesky idea that we might have rights - even the most severely impaired of us, the ones who can't express what they want and need. In those cases, someone else has to decide what is in their best interest, but that person should be someone who sees them as a whole, adult human being. It should not be the parent who copes with their grief by seeing their daughter as a cute little pillow angel.

Doing these surgeries forever deprived Ashley of any form of sexuality or womanhood. It is true that she could never have consented to sex or pregnancy, but she might have engaged in self-stimulation. She would not have had an understanding of this beyond that it felt good, but it was still taken from her. She will never have the feeling of being in a woman's body, of having soft breasts and curves and an instinct to love and care. These things are primal; they do not require intelligence or awareness to experience on a basic level. Again, this is something many people would rather not think about. I have read many forum postings from parents who are upset about their mentally disabled teen or adult's "inappropriate" sexual behavior. But most of the time, what they are disturbed by is that their son or daughter HAS sexuality, not just that it is being expressed in a public or problematic setting. In this case, the parents seem completely unable to deal with the idea of their daughter being a woman one day. And thanks to the medical establishment, they've now created an illusion to support their delusion.

I know that being the parent of a disabled child can be hell at times. It certainly was for my parents, and I'm highly intelligent and have much more physical ability than Ashley. However, there are resources out there to help. Ashley's parents claim that they cannot find good caregivers for her and that was part of the reason for their decision to keep her small so they can care for her longer. I require an assistant to help me every day, and yes, it is HARD to find and keep a good person. God knows I've had some lazy ones, some jerks and even one who stole and forged my checks. But I've also had some wonderful assistants, including my current weekday person. It can be done, if you screen prospective employees well, treat the person with respect, and pay them a decent wage. Ashley's parents are professionals; while that doesn't make them rich, it should mean that they can supplement state-funded caregiver wages by a few bucks an hour. And even if they HAVE tried every possible caregiver option and service, the solution then is to campaign for more services, NOT has drastic procedures done on your child.

In fact, if anything good comes out of this story getting so much press, I hope it is that the general public learns about the struggles disabled people and our families face. Despite my criticism of Ashley's parents, I do feel compassion for them. They must have felt like they were in a desperate situation to do something like this, although they claim their decision was an "easy" one. The problem is that they decided to change their daughter, when what they really needed to do was demand that the system change, for their daughter and all the other sons and daughters. We need universal health care in this country. We need funding for in-home care so that people with disabilities can live in their homes and with their families instead of in institutions where they are isolated and vulnerable to abuse. We need laws guaranteeing the right of bodily integrity and freedom from unneccessary surgery to ALL people with disabilities, including the profoundly impaired. Then, I hope, parents of children with disabilities will feel free to let their children be who they are, not change them based on fears for their future.
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Ayesha
(posted by Ayesha (ayesha) on Sunday, December 10th, 2006 at 4:39 am)
We caught the last half or so of TransGeneration last night on Logo. What an incredible documentary. What I especially loved was that it really took you into the hearts and minds of the young trans people being filmed. I've seen other docus about transgendered people, but this was by far the best. Despite only following 4 individuals, they captured a lot of racial and cultural diversity, and even disability issues as one of the MTFs is hard of hearing. It didn't shy away from the difficult emotions, and by the end I really felt I knew them.

Afterwards I was compelled to Google all of their names to see what they're doing now, and they all seem to be happy and successful, except for TJ who is hanging in there but stuck in Cyprus for the next 2 years. If he were straight/a bio-guy, he could just marry his fiancee and all that residency/immigration shit would go away. Some sexist asshole can go over to Russia and pick up a mail-order bride to abuse and get her a green card, no problem, but a brilliant, educated person like TJ is trapped in transphobia hell for two years because a bunch of bullshit Christians want to tell the rest of us how to live. I really hope he can find a way out of that mess sooner. I actually friended his LJ as he has posted some wonderful political and social commentary.

I'm probably one of not too many people who can say this, perhaps more nowadays - the first LGBT person I ever knew well was transgendered. When I was around 13, I got involved with animal-assisted therapy at the local hospital in my hometown, Bloomington, IN. THE local AAT person was Sean. He had a paying job taking his two cats and dog to the hospital. The cats would ride perched in his backpack - they could have jumped out at any time, but they didn't. He was a role model for me and looking back, I think he is a big part of what inspired me to be a therapist specializing in AAT. It is also because of his tragic death that I have a few precious words from my mother to hold on to, words that mean I am not haunted by wondering if she would have accepted me being a lesbian.

We hadn't seen Sean in a while; I can't remember if that AAT group was no longer happening or what, when we got the news through our veterinarian that he was dead. He had died in his home and it took a few days before he was found. His animals were starving to death, but thankfully, they survived. Our vet adopted his cats herself and found a great home for the dog. At first they thought it might have been suicide, but he never would have put his animals in that situation, and later it was determined that it was natural causes of some sort. My mother told my grandfather's home health caregiver about Sean's death, and it turned out that she knew him. She was the one who told my mom that he "used to be a woman", and my mom in turn told me. I was shocked...as a kid I thought of sex changes as something you read about in the Enquirer or saw on Sally Jesse Raphael. I had no idea that someone I cared about, a kind, normal person, could be transsexual. I was very confused and found it hard to believe. I asked my mother if she'd known before, and she said no, but she had thought that he was gay. She then said that it was sad that he had died alone, and apparently he had even been rejected by a lot of the gay community in town because they were prejudiced against transgendered people. I said that I didn't understand why someone would want to change their sex, and she replied, "I can't imagine how awful it would be to feel that you were born with the wrong body."

Those words changed my life, in so many ways. Her accepting, non-judgmental attitude taught me to honor other people's experiences of themselves, as well as my own experience of myself. I am very comfortable as a woman and would not want to be anything else; I still do not know, and can never know, what it feels like to have a body that does not reflect one's gender identity. But I do know how it feels to have a body that disappoints me, that fails me, that is damaged for life through no fault of my own. I also remember how it felt to be a teenager who for some reason just wasn't interested in boys and had a crush on her female science teacher. I wondered if that meant I was a lesbian, but the only lesbian I knew was the school vice principal, who was very butch and a total bitch whom everyone hated. I wasn't like her, so I couldn't be gay, right? So I never told my mom, although I think she must have had an idea. As an adult, I wanted to tell her, but I was afraid, and I didn't want to add to her stress when she was already battling cancer. When she got better, then it would be time.

I never got the chance to tell her. I spent the first few months with so many regrets - that I hadn't spent that last summer with her, that I'd listened to my dad and not flown there when things went wrong, that I never got the chance to say goodbye. I still regret those things, and probably always will, but what I miss most now is that my mom and I never got to know each other as adults. I want to hear all of her stories again, about her travels to Europe and to Egypt, through my adult ears. I want to talk with her honestly about how she felt when I was diagnosed, during the lawsuit, and during those endless hours of physical therapy. I've asked my dad as an adult, but i only asked her once, when I was 18 and they first revealed it, why the fuck they waited so long to tell me the truth. But most of all, I miss that she never got to meet Kristi, to see how much we love each other, hell even to see that I've still got some of the same issues she used to yell at me about and they DO interfere with my life and relationship just as she said they would. I wish I could see her pick up Elphaba's front paws and do a silly dance with her. I wish I could hear her say that she loves and accepts me for who I am.

Instead, all I have is that memory to hold on to, and the truth about the kind of person my mother was - intelligent, open-minded, and a passionate advocate for equality. Even knowing that, that conversation still holds a special place in my heart. And I have Sean to thank for it. Sean, wherever you are, please know that your suffering, the injustice you faced and your tragic death was not in vain. You helped at least one person come to terms with her sexual orientation, and I (and my multitude of mutts) are going to follow your example and try to help many, many more lost and hurting people through the wonders of animal-assisted therapy. I'm going to order your book now. Maybe it'll have a picture to remember you by, with your kitties riding in your backpack. RIP.

And RIP, Mom. I miss you so much, especially this time of year. Sometimes it hurts when you come to me in my dreams because then I wake up and you're not there. But right now, I just want to see you. I love you.
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Ayesha
(posted by Ayesha (ayesha) on Saturday, September 9th, 2006 at 1:11 pm)
Way to go lady! You kick ass!

Woman in wheelchair on way to gun practice shoots mugger

POSTED: 1:59 p.m. EDT, September 9, 2006

NEW YORK (AP) -- Margaret Johnson might have looked like an easy target.

But when a mugger tried to grab a chain off her neck Friday, the 56-year-old Johnson, while riding in her wheelchair, pulled out her licensed .357 pistol and shot him, police said.

Johnson said she was in Manhattan's Harlem neighborhood on her way to a shooting range when the man, identified by police as 45-year-old Deron Johnson, came up from behind and went for the chain.

"There's not much to it," she said in a brief interview. "Somebody tried to mug me, and I shot him."

Deron Johnson was taken to Harlem Hospital with a single bullet wound in the elbow, police said. He faces a robbery charge, said Lt. John Grimpel, a police spokesman.

Margaret Johnson, who lives in Harlem, has a permit for the weapon and does not face charges, Grimpel said. She also was taken to the hospital with minor injuries and later released.

http://www.cnn.com/2006/US/09/09/wheelchair.shooter.ap/index.html
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Ayesha
(posted by Ayesha (ayesha) on Saturday, November 12th, 2005 at 12:37 pm)
"Show Yourself" - Jefferson Starship

When I was small I used to stand
with my hand on my heart
and I would sing to you
you were my son and my lover
my father and my brother
I believed in you
it was so easy then
It was so easy then
but where are you now
it seems like you can't hear me anymore
maybe you're just getting too old
But do you remember
201 years ago
when you were young
how strong you had become
promising every one your sweet gift of freedom,
now you know exactly who I am
I seem to tell you all the time
now tell me some kind of truth about yourself
your life should be as open as mine
there are children dying for you
that doesn't sound like freedom to me
you keep lyin' about why they're dyin'
when they should be concieved in liberty
Show yourself
show yourself to me
you're the one that told me
remember
you told me I was born to be free
open all your doors I want to see
all your doors and your keys
I want to see I want to hear you
all 88 keys yeah
oh give it to me
show yourself
show yourself to me
I want to see the stars and the stripes
that can make those things scream
Show yourself
show yourself to me
expose yourself I wanna see your face
come on give it to me
show yourself
show yourself to me
are you RCA
are you Standard Oil
are you A.T.&T. I wanna see
give it to me if you got one
I wanna see come on and show yourself
who runs this? who runs this country?
show me
show yourself
give it to me
show yourself to me
I want to know I wanna see
give it to me show yourself
show yourself to me
I want you know I wanna see
give it to me show yourself
show yourself to me
who runs it? who runs it around?
show me show me show your face to me
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Ayesha
(posted by Ayesha (ayesha) on Monday, November 7th, 2005 at 6:48 pm)
Kristi and I had a great time visiting San Diego this weekend. We used the RV for the first time, which was rough going at first and hard on Kristi with her fibromyalgia. We arrived at the campground very late and only got 3 hours of sleep before we had to get up to be at the class where we were on a panel about disability and sexuality. The panel went great - I think we opened a lot of people's minds to seeing people with disabilities as being sexual beings just like everyone else. After the panel, we hung out with Angela at the college and at her apartment, then went out to dinner with her and her girlfriend, Beth. On Friday we got some desperately needed sleep, then went to Angela's, and on Saturday we spent the whole day at Sea World! The best part was petting the dolphins - the area was very crowded, so Angela went to get some assistance from a staff member. That person turned out to be one of the dolphin trainers who let us go into a special area where we got to pet them and give them hand signals to do their tricks! It was fascinating to see the same type of training that I do with dogs applied to dolphins (actually, it started with them.) I really must read "Lads Before the Wind"; I've had it for ages and have just forgotten about it/been too busy. Dolphins are such amazing creatures; you can look into their eyes and see their souls radiating out just as you can with a person who is filled with life and joy. I fully believe that they are every bit as intelligent as we are; it is simply that their living environment and therefore their way of thinking and being is very different from our own. I would really love to spend more time interacting with them; I'm going to post to one of my service dog lists about it at some point as I'm sure someone on there knows people at Sea World.

Here's a picture of me with the very sweet Dottie the dolphin:



Isn't she beautiful? Not the most wondrous pic of me, but oh well.

We returned home to find that the guys have nearly finished our new floor, which looks great. So glad to be rid of that carpet!

San Diego is a wonderful place - much more open space, and friendly people. I wish there weren't so many service dog programs in the area already; we'd really love living there, and we'd still be within easy visiting distance of our L.A. friends. There is affordable acreage within an hour of the city, too! *sigh*
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Ayesha
(posted by Ayesha (ayesha) on Monday, October 24th, 2005 at 8:39 pm)
You were one of my heroes.

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Ayesha
(posted by Ayesha (ayesha) on Thursday, September 1st, 2005 at 2:45 pm)
Condi the traitor to not only her own race, but all Americans goes shoe shopping.

Disgusting. Thousands are dead, tens of thousands more are starving and suffering and the government is being incredibly slow to act. Could it be because many of the National Guard's amphibious vehicles are in Iraq (because we really need amphibious vehicles in the desert)? Could it be because Bush is too busy vacationing at his "ranch" and now celebrating with Big Oil as they gouge regular Americans at the gas pump? Or could it be beause NONE OF THIS WOULD BE HAPPENING had Bush not cut funding to the project that would have reinforced the levees that broke, largely preventing this tragedy?

It disgusts me. It utterly disgusts me. And while I'm a pacifist by nature, if I were one of those people in the Superdome watching my loved one die from lack of medical care, or one of those people waiting on my roof for rescuers that might never come, well let's just say that the house I'd be looting would be the big white one in DC where the liar, idiot, and murderer lives.
Mood » enraged
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Ayesha
(posted by Ayesha (ayesha) on Friday, July 22nd, 2005 at 6:46 pm)
Posted this on a forum, thought it was worth adding to my journal as well.



Should gay people try to present ourselves to the world as "just like everyone else?" It's a complicated issue.

The difficulty in society (and American culture in particular) is that we reject what is different. Society assumes that one cannot be different and yet still be an equal, valuable human being. So instead of fighting to be different AND accepted, minority groups (and this is not limited to gays) often try to portray ourselves as being "just like" the mainstream. However, that strategy is not always effective, and it doesn't work for some members of the group who simply can't blend into current societal norms. A very butch lesbian, for example, cannot "pass" as straight, but my partner and I are almost never recognized immediately as a couple because we don't fit the prevailing cultural image of lesbians. We're not trying to be closeted, we're simply more "acceptable" because of how we look. So if we as a community try to portray ourselves as "mainstream", we inevitably end up leaving some people out. And that is not fair or justifiable IMO.

On the other hand, part of the problem with categorizing people by sexual orientation is that the needs and interests of the people within the group are really quite different. For example, my partner and I have a lot more in common culturally with the young married hetero couple down the street than we do with the single leather daddy in West Hollywood. We're thinking about a house and kids; he's thinking about assless chaps and the weekend S&M party. As a liberal, live-and-let-live type of person, I support his right to have those interests, but it really doesn't reflect who I am and it does bother me that people like that are still prominently featured at Pride parades etc., thus promoting negative stereotypes of gay people. It becomes an issue of behavior instead of orientation and civil rights - giving the fundies ammunition. I was born gay, I want to marry my partner and behave in public as any married couple would - holding hands, kissing lightly on the lips, etc. I'm by no means a prude, but there's a line somewhere and right now some people are drawing it in a place that harms others by association.

LGBT people are the "in" subject on TV right now - I watch all the crime shows like Law & Order and practically every other episode is gay-related. Then there are shows like The L Word and Queer as Folk. Are we stereotyped? Yes, but no more than anyone else on TV, I would say. You don't see fat ugly gay people - but you don't see fat ugly straight people either. We're portrayed as mainstream, by TV's fucked up standards that is. Overall I think that is a positive thing - it shows that we've moving towards equality, although we still have a long way to go.
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Ayesha
(posted by Ayesha (ayesha) on Friday, July 15th, 2005 at 1:22 am)
new Goldfrapp video

*drool*
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Ayesha
(posted by Ayesha (ayesha) on Thursday, June 16th, 2005 at 11:29 pm)
If one were to, say, write something on a white Hummer using a Sharpie, how difficult would that be to remove?

No reason for asking of course, other than curiosity. ;-)
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Ayesha
(posted by Ayesha (ayesha) on Wednesday, May 25th, 2005 at 12:11 pm)
This article infuriated me so much, I just want to start screaming at the idiot who wrote it. This poor teenage girl is depressed and cutting because she STILL BELIEVES in love, in family, but her own family is rejecting her. Her sexual orientation is not a choice, but instead of getting love and support, her parents are telling their right-wing crazy friends to humiliate her in newspaper columns to advance their bigoted agenda. What kind of family values is that?!

The column has an e-mail address to contact the author. I think she should hear from a lot of us.

Text of article and site linkCollapse )
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Ayesha
(posted by Ayesha (ayesha) on Wednesday, May 25th, 2005 at 3:43 am)
I've been avoiding journaling for the past week, and I decided that rather than posting yet another pointless quiz or silly picture, I'd just let things sit for a bit.

My stepmom had her surgery last Monday. The cancer was more extensive than they'd thought, and they removed her ovaries and uterus (as expected) but also cancer from her liver, diaphragm, and colon. She has a temporary colostomy which will remain until after she finishes chemotherapy, at which point they'll re-attach things and check to see how she looks. So obviously, that wasn't good news, but the surgeon thinks he successfully removed all the cancer, so she has a decent chance of recovery. She's always been in good health, doesn't smoke or drink, eats a very balanced diet, and is big into nutrition and herbs, so if anyone can beat this, she can. Then again, my mom was the same way and it didn't help her much. :(

Dad called me the night of her surgery...I could tell he wasn't doing well, so I took the call alone since I knew he wouldn't feel comfortable with Kristi listening in. He opened up emotionally quite a bit (for him) about how he felt life was hopeless, why couldn't it just give him a break, all of the same feelings he had shared with Marilyn that night I wrote about previously, only now on top of it all was the cancer and it was worse than expected. He said he'd had such a hard time after my mom died, and it took him years but he had finally found someone again, and now he's afraid he'll lose her too. If he loses her, he'll be nearly sixty and alone and he said he didn't know..."y'know what I mean?" He always says that when he doesn't want to actually say what he's feeling, because he's afraid, and sometimes I can help him to get past it and say the words, but then I felt I should not push. But what I think he meant was that he would want to die. I could never imagine him being suicidal before, and yet he is, passively, with his drinking and closing off his feelings so they eat away at him and destroy him from within. The world outside is doing a pretty damn good job fucking him over, too.

He said he didn't know if I understood how much he loves Marilyn, and I said I do understand, I love her too, and she's the next best thing to Mom still being here. I had managed to snap into therapist mode for a bit, but I started crying at that point, and he said he didn't mean to call and upset me, and seemed to feel very guilty about it. That is not typical of my dad, but it is typical of someone who is depressed. I insisted it was OK, and talked to him for a bit longer until his mood leveled out and then he thanked me and we said our I love yous and goodnights. It was an amazing conversation...I just wish he could open up like that without there having to be such awful circumstances.

In other news, Kristi got a diagnosis from her rheumatologist...he says she has fibromyalgia. This wasn't entirely unexpected, except that she is so much worse off than all the other fibro folks we know. It's mostly because she has severe fatigue on top of the pain - the fatigue is what really debilitates her. The doc told her to double her Effexor dose to 300 mg, plus he prescribed Elavil to take at night to help her sleep - apparently it helps to regulate the sleep disorder that usually accompanies fibromyalgia. But, there are multiple issues with this. For the past 3 nights (since she upped her Effexor) she's been having what I can only describe as "body jolts". Her body tends to "jump" slightly as she's falling asleep, but now it happening so strongly that it is waking her up in the middle of the night numerous times. The jolts are so intense that it is terrifying to her, and she's even wondering if she could be having seizures. I don't *think* she is, and I'm 99.9% sure at least one of our dogs would be reacting if she were. But who knows? So she is returning to her usual dose, and waiting to start the Elavil, which we're also worried about because I've read online about fibro people who took it and got much worse fatigue-wise, plus it has an adverse reaction with her inhaler - racing heartbeat. She has enough trouble with that and anxiety as it is! Meanwhile, the doc who prescribed all this has just gone on vacation. And the only person who's done a damn thing that has actually helped her is her Chinese Medicine doctor, who isn't sure she agrees with the diagnosis and has a lot of other concerns that aren't being adequately addressed by the other doctors. Oh, and Kristi ran out of the one Western med that HAS been helping, Provigil, but she got a refill today so hopefully she'll have a bit more energy tomorrow. This is all so frustrating.

I have a lot more to say about our RV and upcoming trip, but it's extremely late so I'll have to continue tomorrow.
Mood » tired
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Ayesha
(posted by Ayesha (ayesha) on Tuesday, May 3rd, 2005 at 6:02 am)
I'm too afraid to go to bed, afraid of the tears and the hopelessness that overtakes me the moment I lie down. The only way I can sleep anymore is to be so exhausted that I can't think anymore, to be in that zombielike state where I can't cry, can't feel anything. Then I sleep for a few hours until I have to wake up, and spend most of the day in a haze. What else is there to do, but wait?

"Don't worry, things will get better." People say that all the time, not realizing that it's the biggest lie ever told. Depression aside, it's simply factually incorrect. Things don't get better. Eventually, everyone we love dies, or we die first; either way, it's inevitable, and thus things will never stay better. Unless what happens after death is better - but none of us has any way of knowing that for sure. Even the best possible scenario, dying in your sleep at age 100 after spending the day with your family, rarely happens; it's all tubes and machines and families having to decide in a bare room far from everything their loved one called home.

And so, I understand why Marilyn hesitates, why my dad is having to convince her to even have the surgery and why she'd rather just spend her last days doing the things she loves. But they don't have to be her last days. She can fight this, and she can beat it, for at least a few years and hopefully much longer. She has to - if not for herself, than for her kids. A is already lost, and I fear there would be no hope of him finding himself if he were to lose his mother as well as his dad. R is on the edge...she watched her father die, tried in vain to save his life, and her grief is already eating away at her from the inside. There are nights she's terrified to be alone...who will hold her if her mother is gone too? Who will hold my dad on those nights when the emotions break through and he is able to cry for the enormous amount of pain and sorrow in his life? Life is hell, and there are no guarantees of anything, but she has to try, if not for herself than for those she loves.

I'm holding Kristi's baby blanket here on my lap. It's comforting, and brings back memories of a time when I didn't know how much misery life would hold. But they are ghosts of memories that never were for me, for the little girl whose first moments of life were spent dying, and hearing her mother scream as she was being ripped out of the womb by the doctor who turned the warmest, safest place she'd ever know into a death trap. I wonder if people who didn't have their illusions shattered from the start, people who had childhoods that were not filled with trauma, find life harder to take when it inevitably turns to shit. Or is it worse for those of us who've never had it good, because we feel cheated out of what was supposed to be? Well, there is no "supposed to be." There's the very few, really-fucking-lucky, and then there's the rest of us. We're the majority - but the big secret, the big lie, is the idea that we're not. And this lie has to keep being perpetuated, because it is what allows us to say that "things will get better" and delude ourselves into believing it.

Anne Frank said in her diary, "I still believe, in spite of everything, that people are truly good at heart." I wonder if she would have still felt that way if someone had asked her about it when she was dying in the concentration camp. Yet somehow, I think she would have, for the same reasons why despite everything, I keep going. There is SOME purpose to life, some hope, even if it is of catching a few brief moments of joy. I wish I understood it, but I know it's there, and it's not a delusion. And knowing that is the only thing that will get me through these days ahead, however many there may be before what comes after.
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Ayesha
»why?
(posted by Ayesha (ayesha) on Sunday, May 1st, 2005 at 7:40 am)
I got terrible news on Fri...my stepmother was diagnosed with ovarian cancer, stage 3. She has tennis ball sized tumors on both ovaries and a spot on her liver. She'll be having surgery soon and they'll know more then, but I'm terrified. And my dad is a mess...not that he is expressing it outwardly to me, but when I talk to him he's either brusque and tries to keep the conversation short, or drunk. I don't know how he is going to survive this after all he has been through. When Kristi and I were there visiting in Jan, Marilyn told us about how one night he broke down crying, asking why can't he just get a break in life? He meets a wonderful woman whom he marries...and then their daughter is born disabled. She ends up being successful in life...but then his wife gets cancer. Three times. The third time, she doesn't make it. Four years later, he is able to move on, and meets another wonderful woman...but two of her kids have serious psychological problems. Still, they're very happy together...and then his mother dies. She is elderly, but it's still a terrible loss. And now only two months later, the nightmare is repeating itself. Cancer.

It's not fair...my dad is a good person who did nothing to deserve this. He's such a regular guy who has had to go through such awful circumstances. Job has nothing on him.

Sometimes I wonder what is the point of living? I do it, because I'm more afraid of dying than being alive, but being a decent human being, or helping others doesn't seem to count for much. Life just fucks you over anyway. I suppose that's why the one thing that I *do* know is that I don't want to just be one of those people who does what society expects - people, well, people like my dad. He worked for the same company his whole adult life, and although I'm sure he wishes I'd do the same, I owe it to him not to, because he did it for me. He sacrificed his own happiness for his family, working at a job that did nothing to make the world a better place...unless his doing so meant that I have a different option than he did. And so I live in terror of dying, but I am also determined to spend the time I have doing something important, something that will benefit others and survive even after I am gone. That's why I'm always in a hurry, why I push towards my goals and so often feel like things aren't progressing fast enough, or like I'm just treading water. I don't know how long I'll have, but if I'm anything like my mom, or her mom, or her mom, it'll be about 55 years. My mother used to say that too, and told me when I was a teenager that she didn't think she'd live to be old. I of course replied "Mom, don't say that, you'll live a long time," but I think she sensed what would happen and that is one reason why she pushed me so hard to walk and to be independent. I can feel her fear now, and that is why I can forgive all the hurt it caused. It was all from love...I knew that then, but now I see that it springs from the feelings I call death terrors, the fear of oblivion and losing one's very SELF, staring into a bottomless pit...and wanting to know that those you love are safe, and that your life mattered, before facing that unknown.

Oh Mom, if you can hear me now, please, please help. Please help my dad and Marilyn. I know that you are here, I know that you are there, in the house...Mom...
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Ayesha
(posted by Ayesha (ayesha) on Monday, April 4th, 2005 at 8:04 am)
Although it is never a pleasant experience to have an assignment from a past quarter hanging over one's head, in a way I am glad I am able to write this now, after going home for the first time in five years. My girlfriend Kristi and I made the trip on fairly short notice; my grandmother had been hospitalized since early December and her health was taking a turn for the worse. I had not seen her in five years since I have a flying phobia, but I really wanted to be there, so we drove across the country to Indiana, where my father lives, and then on to Pennsylvania.

When I saw my grandmother, it became very clear that she was not doing well. She was extremely weak and not really able to eat, but she was hanging on knowing that we were coming. I think seeing me and my Dad, stepmom Marilyn, and Kristi brought her some peace. After we left, every day she would ask my grandfather what day it was. She was hanging on for their 60th wedding anniversary, and she made it. She passed away Feb. 7, after we had already started driving back to CA, so we did not return for the funeral, but I got to see her and say goodbye, which was what mattered most.

While we were visiting my family, my father gave me some papers relating to my birth and the malpractice lawsuit that they filed, including my mother's deposition - which was a detailed, emotional account of my birth. As I read it, I could see her as she looked then, thin and tan, with long blonde hair and worried eyes. I could hear the fear in her voice as she described how the doctor arrived late, leaving her waiting too long for her C-section, how the nurse was brusque and uncaring, and finally how the saddle block failed and she felt everything as I was pulled from her womb. The doctor anesthetized her against her will; despite the pain, she was begging to see me and trying to push the mask away. Her next memory was of waking up in a haze, and when they brought me to see her, my head was covered with a towel. Months later, when I was diagnosed with cerebral palsy and she obtained my medical records, she found out I had been cyanotic (blue and not breathing) at birth, and that is probably why they hid my face from her.

It was surreal to read about my birth; I felt as if I were reading a novel or watching a film, and "Karin" or "the baby" was a character on a screen, not ME. It also allowed me to see the events through the eyes of the protagonist - my mother - and suddenly everything made so much more sense. I became her; I saw her dreams for her little girl, then how they were shattered and replaced by grief as she watched me struggling to even hold my head up. She talked about how I hardly moved at all, how she would put me on my specially adapted tricycle and push me around, encouraging me to pedal, but I was too weak to do so. That was not how I remembered it at all - but I realized that my memories must be from later, when I gained more strength. As with all stories, the narrative of my life changes based on whose perspective one takes.

My mother was afraid for me, and that is why she did all of the things she did. All of the physical therapy, the screaming at me because I didn't want to do some physical task, or was running late due to exhaustion - all of that hell I went through was because she loved me. I knew this before, of course; she had said so many times. But the vulnerability she felt, the sheer terror, was not something I could grasp until I read about my birth. My mother died just after I finished my BA, before we had much time to start talking as two adults, and thus I was left alone with all of this, trying to piece together a resolution from the memories. But through her words, she was alive again, and I could relate to her as I am now. I am just five years younger than she was at the time I was born, and in a similar place - partnered and hoping to start a family in five years or so. I have hopes and dreams for my future children, too, and what she went through fills me with a terror I never could have imagined before reaching this stage of my life.

And that is why, when I feel emotionally ready, I will begin a second project - decorating my other plastic brace. As I choose the images and words, I will do so, as best as I can, through her eyes. I will present her side of the story, the side of a woman who loved her daughter so much that she devoted the best years - what would turn out to be nearly all the remaining years of - her life, to helping that daughter. I will show her primal terror that her little girl would never experience the wonderful things she had - going to college, treveling, falling in love. And I will show her frustration and confusion when her daughter fought the physical therapy, despite being fiercely independent, bright, and ambitious. I will place this brace beside the one I made, and perhaps in the space between them, there will be the truth.
Mood » drained
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Ayesha
(posted by Ayesha (ayesha) on Friday, March 4th, 2005 at 2:52 am)
You scored as Les Miserables. You've had such a hard life, and yet you still have the strength to sing all about it! Remember, we are each part of the same human family, and that whatever our outward differences may be, our longings for individual liberty and peace are the same.

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Les Miserables

75%

Wicked

71%

Grease

58%

Avenue Q

50%

Cats

50%

Hairspray

46%

What MUSICAL are you???
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Mood » sleepy
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Ayesha
(posted by Ayesha (ayesha) on Wednesday, February 23rd, 2005 at 11:25 am)
I'm with Sinead.

Pope: Gay marriage is 'evil'
Mood » pissed off
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