Montag, 30. Juni 2008

Seizures and Memories: Elizabeth

Yesterday, my nap ended as I woke to my arms in spasms. I called for help. Linda and Cheryl came. I knew the memories that I had, the smells, sights and presence of 1987 pouring over me like a waterfall let loose. Memories so overwhelming and powerful that they washed even the comments Cheryl had said hours earlier, that I had been college, that I had been married, until they were shadows I could barely see.

Where I lived, what I smelled, and heard and felt was the fear of living in LA, of a world were people were kept in Beirut for years, and no one ever told me why, and the Soviet Union was looming, always looking for some way to advance the revolution. I was an obedient child. I didn't get in trouble much. I wanted a treat, a new health food, the Frojurt (Frozen Yogurts) up on Lake Street, Pasadena. I wanted to go shop at Trader Joes, or go to Macy’s. I knew the terror of five to seven helicopters coming in a silent V formation dropping a sheet of Malathion, whether you were inside or out, leaving cars pitted and pets dead behind them. I knew how to get to level four of Qbert and level 5 at Frogger, but I always messed up the last “home” in the top right corner because the logs moved very fast and I jumped my frog too early.

But I wasn’t there now, I knew that, I was here, and here was where I belonged, though I couldn’t really remember much beyond that. I was an adult now, but I remembered that I had spent hours talking to “adults” as a teen, calling Linda “ma’am” and minding my manners. I did not question ‘adults’ asking me questions because they were adults and I wasn’t. Being a teen was about people calling you in and asking you questions about your future, about what you where doing, what you were reading. I had told them about Typing Class and how I had done all the extra credit assignments and was getting an A, and what books and authors I was reading. I remembered them trying to say this was my place, which was so funny. I was a teen, how can a teen have a “place”? And all this stuff, a whole collection of things, a teen can't have that, not what was beyond what can be stuffed under the bed or in drawers or the closet (for room inspection to determine if I could go out this weekend)? When they told me that it belonged to the lady there, Linda, that made more sense. Adults could be messy if they wanted to, they had places, apartments. I waited for more questions, and wanted to know when my parents were coming to pick me up. I talked about how I got yelled at when I spent too much time on my Atari computer.

Only now, I had napped and was awake. And could see and remember one world but I knew I was in another. My arm started to shake on it’s own. “What is happening?” I asked.

Cheryl said, “The heat, maybe the dehydration, it’s causing another seizure.”

Another seizure, more pain; my arm was twitching and flopping as individual muscles in my arms seized or acted as nerves fired. I was having a prolonged neural storm. The heat was a trigger, but my nerves were firing independently. During the seizure, they had removed objects from around me, in order to stop me from hurting myself.

I was exhausted, not tired as I as just woken but like I been placed in a centrifuge. We talked a little, enough to confirm, I knew I was in Canada. But 1987 was still there, and my head hurt. Linda wanted to touch me, to rub me, comforting herself that I was back, or some part of me was back. “Fire” I told her, every time I was touched it was like fire lighting up in my brain.

Then the fire hurt more, my brain hurt more, and my right arm locked, my face started to writhe. I pointed with my arm to a book on Superstitions. They opened it for me, I pointed to snakes and my face. And they understood as my face was changing, writhing, contorting on its own. Cheryl said something like, "Independant face contortions." I pointed to my belly, and Cheryl placed her hand there. She said later it was taut but like a skin over a bowl of snakes and the muscles were not acting like muscles, acting together but each having the nerves and firing independently to twitch, to flop, or writhe between two other rigid muscles. I passed out.

When I awoke, I begged the two of them, to stop this, a seizure every few minutes. Please, stop this, this helpless violation as the control of my body was given over to an invisible and sadistic puppet master; leaving me to wake with the consequences. I drank 3/4th of a litre of Gatorade and some caffine. Anything that might work. I waited in case the nerve in my stomach decided to projectile vomited.

“What is that smell of burning?” I asked.

Cheryl said, “There is no smell.” She looked pointedly at Linda before asking, “What do you smell?”

“Well, it is more like a taste now, a burning.”

Cheryl said, “People often report that before a seizure.”

“No…” I begged her, with my eyes, with my mouth, she was sitting right there. She couldn’t let this happen to me again, not just after I had done everything, not just minutes after the last one. Please…please… me?

And then the Grand Mal hit.

When I woke up I couldn’t use my right side but I could use my left hand. I was signing questions, doing ASL better than they had seen me do it before. In 1987 I was an ASL interpreter: and what I knew in 1987, I knew that afternoon.

My body was cooled and I started to recover but things, from the big to little were gone.

I looked back on the day with humiliation and violation. Not by any person, but by my brain. As an adult, who would want to reveal every thought, every intonation, every immature black and white thinking of being a teen? And yet, I was that, for hours, because that is who I was; from the fear, the terror and listening to sounds, as sounds could save your life in LA. I spouted my juvenile brainwashing, and bubbled my teenage reading tastes all discussed with an openness that precluded the ability to chose what I wanted people to know about me. Because I wasn’t me, I was the me of 1987. And I had been taught to obey. And as open as I am on this blog, I would have preferred to chose, to make context than just have my spouse and my friend/adopted sister see WHAT I was; without defenses.

That was followed by having my body, seizure after seizure again and again. I couldn’t even stop my right arm from flopping around between them, just cover it with a blanket. No, it wasn’t sexual but it was a violation, a removal of control of my body and my mind. No one’s fault, but the feelings of shame and humiliation remain. I feel them, I remember; of looking to Cheryl in desperation and pleading that she STOP this, please. If she loved me, then just stop it...somehow.

With the heat wave, and the lack of sleep reserves, along with being active and talking; all of which seem to be triggers, I had two more seizures this/Sunday morning (though I can’t remember them, because I had a couple more this afternoon). Clonic/Tonic, petite Mal, Grand Mal, heat stroke, Neural storm: I have seizures in my sleep when it gets warm. I lose time, I lose memory. Did I have another stoke this weekend? I don’t know, I know I had a stroke earlier but I can’t remember when it was. I will be glad when this heat stroke is over and I can talk to someone without risking a seizure.

I’m watching an anime, it won’t be in the US for many months if not a couple years. It is called Ef: A Tale a Memory and involves two female twins, one who goes to school and another (pinked haired) called Chihiro, who does not, she stays alone. She goes to an abandoned train station and reads. There she meets a boy named Renji. When he says he’ll see her tomorrow, and she see him tomorrow, she starts crying. After day and day of spending time together Chihiro tells Renji that because of a car accident she lost an eye but also her memory doesn’t last longer than a day. She talks of the “me” of today, and the “me” of yesterday. She talks of reading her writing, her diary to know how to interact, to know what people expect of her.

To hear someone, even a fictional character saying things that I have written, have felt. That it would be better if I was removed from society so that I would bother people less. It is such a personal and bittersweet pain that brings me to tears.

I cannot watch much of this series at a time, maybe 10 or 15 minutes. Chichiro has a dream, that she can write a story while being “me”, a single person, with THAT current memory. But there is struggle, and pain because those around her, don’t always understand. One day it is pouring rain so hard that Renji decides that no one, not even Chichiro would go to the station in the rain and he stays inside. The next day she isn’t there, she is sick. Her guardian comes and tells Renji that she came and stayed until midnight because it said in her diary: “Renji said, ‘I’ll see you tomorrow’ Renji is my friend”

She spends her morning reading her dairy, and the afternoon remembering and repeating to herslef what she wants to remember in the morning, what things are important, that she was in an accident, for example. And when she wants to self harm, she only has to rip out pages from her diary to make cuts deeper than knife wounds to her mind, her stability. This is a short two minute AMV about the series, which is titled Stand in the Rain. The title means, that when you cry, Stand in the Rain. We cannot stop the pain; the emotional or the physical. But we can choose not to be stopped by it, to cover our tears by standing in the rain. Or we could be stopped, but that won’t stop the pain, or the tears.

I likely won’t stop begging when the seizures come, or stop feeling the fear in my gut, knowing that my body is not my own again. But I either face and admit I have the fears, the shame, the feelings of violation, or I hide away.

Sonntag, 29. Juni 2008

A Message from the Heathen and the Doctor

Hi everyone, it’s The Heathen here, err… I mean Linda.

Earlier today, Elizabeth looked around the study dazed. We (Cheryl and I) had asked her if she recognized the books in the bookcases lining the walls. “I’m not allowed to read fiction.” she replied in a hesitant tone. I told her I had just read Peter Pan. ‘That’s a tool of Satan,” she said. She looked at me closer. “Are you one of ‘US’?” “No” I replied. “Then you’re a Heathen!” Beth stated, in the black and white tones of a brainwashed teenager.

Confused? You aren’t the only confused one today. Beth had a bad seizure earlier this afternoon while I was grocery shopping. Apparently she was in mid-sentence talking to Cheryl when all of a sudden she passed out. When she woke up she was back in 1987, living in California and going to high school.

Cheryl was a doctor because she asked her medical questions and had a stethoscope and stuff. When I arrived on the scene she did not recognize who I was. As she was talking about her religious private school, when she wanted to know who I was, I said I was her guidance counsellor. She wasn’t so sure about that, as heathen’s wouldn’t be allowed to work at her school. But then she remembered heathens were occasionally employed.

Beth looked carefully at me and said “but you’re old?” (Definitely a teenage point of view. )

She was very concerned for me and wanted to save me from being killed and tortured during the end of the world. Only 'the Chosen' would be saved. While this was fascinating, it was also sobering to hear her talk about the way things were when she was 17. We both grew up in the same conservative church/cult, but listening to her recount things, twenty years after they happened, made me realize how far she and I have come.

At one point Cheryl told Beth that she was married and when she want to know to who, Cheryl said that she was married to me. Beth giggled and told Cheryl she was silly. ‘Girls can’t marry girls!’

Cheryl was treated with suspicion because in our church, people didn’t go to see doctors. And you didn’t take any medication. (Elizabeth: “If you truly Believe you WILL be healed.”)

Beth’s memory was stuck firmly in 1987 for over 4 hours. She wanted us to call her parents to pick her up and take her home (to California!). I did eventually call them, let them know what was happening and asked if they could come over for a few minutes. When Beth saw them she became very upset because they were imposters – they didn’t look or act like her parents. “My father would be wearing a suit,” Elizabeth declared.

I had asked her parents if they could help her by saying it would be better for her to stay with me and Cheryl rather than go back with them. Cheryl could help her more because she was a doctor. How else could we explain why she needed to stay here at home in a place she didn’t recognize.

“Those aren’t my parents,” she told the doctor (Cheryl), as I escorted her them out. “My parents don’t ask me what I want to do, they COMMAND.”

We were eventually able to get Beth to use the bathroom in preparation for lying down. In the bathroom she found my straight romance and read the back cover. She was shocked and appalled that I had this book in my house. Coming out, she said to the doctor (who Elizabeth had been told was, likeher, of ‘US’, 'the Chosen'), “There was a man and a woman having a relationship and they weren’t EVEN married!”

This made me crack up so I had to turn away as Elizabeth turned and whispered to the doctor, “How can you still be friends...?” (Elizabeth had been told that while Cheryl was ‘US’ and I was not, we were still friends. This was humorous, but also heart-wrenching.

It was sometime between the bathroom and the nap that Beth thought we were sent to deprogram her, or had kidnapped her for ransom, and were drugging her and keeping her against her will (because she had no memory of yesterday or the day before). We decided this was not the time to offer her a valium and muscle relaxant. Didn’t want to fuel the ‘drugging’ idea.

When she did wake 1.5 hours later we were relieved to find she was starting to put things together and no longer 17 years old. But all the 'new information' was making her head hurt, and more seizures followed. We have decided to leave the connecting of memory dots to another day and instead show her some of the old familiar. We went for a drive to one of the local parks and stopped at Beacon Drive Inn, a favourite haunt of ours, for ice cream sundaes.

It was an exhausting day for everyone, physically and emotionally. Personally, it made me face the possibility that there may come a time when Beth won’t recognize me and may never recognize me again. How will I cope then and how will I help Beth to adjust to whatever state she is in, and her relationship with me? I’m just thankful I didn’t have to tackle that problem today alone. Here’s hoping a long rest overnight will keept the the memory button reset for a long time to come.

All being well, you’ll be back to your regular programming tomorrow night.

Samstag, 28. Juni 2008

An evening at Getsuei Okiya

Where do you go when you want to drink some really good green tea? A Japanese tea house of course! Geishas are masters when it comes to preparing tea, as well as singing and giving performances. Yesterday evening, together with my friend Uzi, we decided to visit Getsuei Okiya to see geishas performing traditional dances and playing instruments. We dressed up in kimonos and geta sandals, and went to Antiquity Township East where the tea house is located.



The atmosphere of the place is indeed very Japanese. Upon arrival we were greeted by blossoming apple trees and the tranquil mood of the area. One of the geishas invited us inside, to the room decorated with tatami mats, paper lanterns and incense sticks. We took a sit at one of the tables and watched geishas prepare for the performance.


(Yes, I took that picture to show the beautiful back of our kimonos :))

I tasted a California roll and then decided to drink tea, while Uzi enjoyed her hosomaki.


As more guests arrived, the show started and we spent the evening listening to music, watching the performance, talking and enjoying ourselves.



There's one thing I missed though - there should have been a third geisha, reading haiku or some Japanese stories. It would complete the evening perfectly. Also, the number of local lights in there could solve the energy crisis, but I guess that's a result of 'old client to Windlight transition'. Nevertheless it was a nice experience. And we took some pictures in the garden after the performance finished.




Freitag, 27. Juni 2008

A woman approaches me with a little light DNR, and traumatized squirrels

“Didn’t I see you on the Coho Ferry on Saturday Evening?” this woman asks me as I am wheeling up the hill. I thought it one of the most bizarre openings because it was the chirpy, “see you” like, “Didn’t we meet up and pass conversation on the weather” – so, did we run into each other?

I said, “If there was someone lying down with blue lips hooked up to a bottle of oxygen and an EMT working on me, then yes, that was probably me.”

“I thought I recognized you!” said what seemed to be this slightly dense woman in her 50’s. Well since I was sort of carried out ala funeral march I think EVERYONE on the ship might of recognized me. She blathered on, “So what morning crossing do you take….I like to take the early ones..”

I am sort of stunned because, did she imagine I sort of just did a jaunt each weekend with a medical team? Anyway, I can’t remember how, it came up but she had seen me before, I had flipped out of a chair and she had “stayed with me” while offering no help whatsoever and blathering on then, and it took two blocks of “I REALLY AM okay! …….you can GO NOW!” to get rid of her. I mentioned that was the night I met my night worker.

Well this got her going about a case in Winnipeg, and what did I think about that and isn’t it a travesty the way the family continues to force the medical system.

I told her I was not familiar with the case.

She said that here was this person on machines and the family simply ‘wouldn’t let go! And it is just DISGUSTING (word she used) and using up so much money and the doctors are actually quitting because they won’t work on this person anymore because it is such a waste!'

Well, as a person who is off and on machines and likely is going to be on machines in the future the fact that someone being on a machine needing to be unplugged in order to save money fascinated (terrified) me. So I asked for more details, like who is on the machine.

“Oh it’s some 90 year old man, that the whole point, it’s such a waste.”

Now, since virtually ALL of my relatives live until 103-108, including my current Great uncle and Great aunt, my grandmother (the one not killed off), and my great, great aunt finally passed, saying someone was 90 to me is saying, “Gosh they only have 15 years left to live!” I used to joke about this with my grandfather when he was 75ish, about how now that he only had 30 years to live, he needed to take things seriously. It annoys me when people talk about people who are older than a certain age as if killing them or having them die is GOOD because….well, they’re OLD! (there seems no other logic to this). And I have to wonder if people whose families die out in their 60-65 would feel if I started saying, “Oh my God, there is a person in the hospital who is kept alive on machines, and they are FIFTY years old! What a WASTE of money, because my goodness, it isn’t like they aren’t already FIFTY!” Because that is 15 years before their family statistically dies. That sounds a little cruel and callused doesn’t it? But then I have noticed that people are able to SAY cruel and callus things about what should be done to the disabled when you are talking to them from a wheelchair.

So I asked, “Is he brain dead?”

And the woman was, “Oh, what? Oh yes, brain dead I think, that’s the whole part that is so wasteful and his family won’t let him go!”

Gee lady, could you have brought up the BRAIN dead part early instead of as treating it as an irrelevant add-on? I actually got a bit heated because here in Canada, while in the States they may be talking about what can and can’t be done with DNR’s, but in BC since doctors don’t get sued, can’t get held liable (not in my province), DNR is a little more PROACTIVELY administered.

I said, “Yes, a lot of people need to be VERY careful with their DNR, because in this province and town, pretty much the number one way elderly people die is from their DNR, which once they can’t feed themselves, is used to starve them to death.”

The woman piped up, “You don’t have to tell me honey, I was in the medical field, and they don’t starve, they just deny the IV to cause death by dehydration!”

Okay, now AS a person who is frequently paralyzed and is facing a future where a machine may breath for me as well as a machine may feed me, and I am trying to draft a DNR, talking to this woman who is still on and on about the cost and how it is so much quicker to kill by dehydration (like six days) than starvation……..

Welcome to British Columbia Health (remember the motto: The BEST place to live on earth…….until we kill you).

When my Grandmother was in a facility, her doctor care was done entirely over the phone. She would complain of needing pills, the doctor would prescribe them after the family made a phone call. She was not visited, nor were most if any of the several hundred seniors in that home. There are many doctors who make a living phoning in tests or prescriptions. In fact my grandmother was diagnosed with lymphoma, and given a prognosis of how long she would live…..all over the phone, without the doctor examining her at all (or seeing her). She got her regular blood transfusions for a few years and it was during one of these time, much like I posted on here that I am not sure if the future is worth living (she said that sometimes too). Only when she said it, they pushed a DNR in front of her and she was told to sign here. That was faxed to the doctor who stopped her transfusions (did not again come to assess her state of mind) he told the family when she would die again, all over the phone.

Only, a bit like me and the cat which came back, she didn’t die. She had a grand old time having her third (or was it fifth) party where she invited all her friends because she was dying. And weeks passed, and she was still chatting away…not DEAD. Only the “family” had already booked her funeral, and the memorial service, and her cremation. Except…she just wouldn’t DIE. (Are you getting an idea of why I don’t want parts of my family tending to my care even IF they wanted to).

So one particular relation, when the others were on vacation, called in to the doctor that she was in terrible pain and got her put on a morphine drip. Again, all over the phone. And like all people put on a morphine drip she slipped into a coma and STILL wouldn’t die (but don’t worry, she was killed, literally less than an hour before she needed to be dead or everyone would lose the deposits and the funeral and cremation and memorial would not be able to occur on time – how incredibly thoughtless of her!). And she was also pronounced dead, I believe, over the phone (my relations won’t really talk to me on this part).

So that is BC medicine. And you can see why I am kind of concerned that Linda is the person who will get to keep the vultures at bay because if I choose that road: just because I am on a machine, or on many machines and I can’t talk, or am partially paralyzed doesn’t mean I WANT to be dehydrated to death, or put in a morphine coma (though that sounds more interesting). And if Triumph isn’t blowing smoke up my…um, there, then they say they can’t get me a computer I operate with my eye and I might still be blogging from cyborg land (machined up and ready to go). Assuming I escape this harpy of death who finds, “Didn’t I see you at the coffee shop! You had a latte!” and “Didn’t I see you getting continuous medical assistance on the boat I was on!” both cheerful and chipper ways to start conversations on the waste of people who are using the medical health system, to someone in a wheelchair….who she saw on oxygen.

On the plus side, um, I went to feed the squirrels. Instead I got to see an 11 year old boy approach the squirrel, run at it, run around the tree chasing it and then collect pine cones and try to knock it unconscious so it would fall out of the tree. He was one of MANY children playing capture the flag through the park.

Not a lot of squirrels approached me today. They seemed kind of jittery. Odd that.


Typing one handed sucks. So I guess no long blog today about gender.

Actually today sucks. I wish I could explain to you the kind of cruelty that would make a care worker watch you pass out because it is interesting. Or refuse to help you transfer, or assist physically in any way because “She only helps those who help themselves.” The more fatigued I become, the more I realize what a cruelty this woman possesses, to hold up her own expectation of what a “good cripple” should be and deny care or even life assistance to those who do not meet it on that particular day.

My life, compared to some I can think of, is pretty okay, I mean, I can’t see out of my right eye but we have all gotten used to that by now haven’t we? Going partially blind is boring on this blog, hardly worth mentioning to be honest. I need something exciting and NEW.

I realized today that deep down, half of me does not believe that I am dying and half of me knows I am. While I was showering, I could not shampoo my hair. I mentioned how it is falling and the same soul of compassion said, ‘Yup, it sure is!” as she shampooed me. And I realized as I looked in the mirror, trying to use what hair I had to cover my scalp, that if I really gave a damn, or believed I might come back; or if I wasn’t so sick that I couldn’t summon the emotions that I should really give a damn, I would be calling a doctor. Because this isn’t cancer, and I don’t get it all back if things go right and this is just a "side effect". This isn’t just part of cost of “Surviving” but rather part of the process of dying. If I had known how much I would miss my hair, I guess I would have done a bit more things with it: I’d like to do a braid. How seriously pathetic is that, to be upset, to be crying because I don’t have enough hair, even four inches past my shoulders to do a french braid.

Linda told me, after she found me unable to move for an hour and had to try and wrestle me into a wheelchair, that she now realized that I am like SICK sick. She has been at work a lot and I guess since she is only home to help me go to badminton (2 weeks since I went) or other sports (1 week), she doesn’t see the progression. I wonder if I am the only one who does?

It turns out that dying is a lot more fatiguing that I thought it would be. And a lot more upsetting, a lot more little things falling out of your control. Today, for some time, I lost everything but the use of my thumb. So I guess that means my forefinger is going; losing axons or however it is my nerves die. My hand turned blue and I passed out. It wasn’t the first time. I had been talking to Linda. When I woke I couldn’t sit up. She said, “We’ll get the oxygen on you.” And traced the oxygen line all the way around the desk, up the chair and up my chest, pulled my head up and it was there, going into my nose. Passed out on oxygen: my new trick. So soon, I may not be able to talk much at all, if talking makes me pass on while on oxygen. Or increase the flow or both.

I’m not supposed to talk about the “D” word, because everyone is getting used to me being ill, being disabled. Not dying. Except I am not particularly impaired; I am FUBAR (fucked up beyond all recognition!). I guess that is what stuck in my head so much with the EMT on the ferry, the Coho. Once he heard my diagnosis, actually even before then, just once he saw me laying down and the lips and then found out why, he didn’t ask any questions. He didn’t fill out the section of the form about what meds I was on, because, what was the point? This wasn’t going to be a learning exercise or a review in marking clients who are high risk. I was ‘a matter of time’ and if he could hand me off to the next in line, then what did it matter what medications I was on because it wasn’t a medication reaction or an allergic reaction that was causing this.

Every day, I watch my hands, my arms, my fingernails to see…are they growing again, is it getting pink, did all that pain push it back for 4 days? And when the hand turns purple, as it does. What then? I am on oxygen, so what then? Go out at midnight for boxing practice? Hope things are better tomorrow? And if they aren’t? Then what, just something else out of my control, some new indicator of “it” getting closer?

I don’t get out enough. Someone today asked me if I qualified for playing Murderball (known as Wheelchair Rugby). The question was so surreal to my circumstances that I didn’t really know how to respond. I told them that technically I suppose I did qualify, the difficulty is that players who have stamina of only 2 minutes at a time tend to not have the highest priority on the team. The same goes with players who leave in ambulances, or arrive with their own “Crew” to revive them. That tends to freak players out. Because murderball players are SCI’s, who lead a nice stable lives and go to training and weight lifting and like the rest of the population, find those who go into seizures or have sudden brain damage between sentences to be a little creepy if not down right freaky. And like the rest of society, usually come up with a rule to make sure they don’t have to be around them, much less responsible for them.

Do I want people to be responsible for me? I guess I do, I want to keep being revived until all the fun is squeezed out. I am worried that it is going to be God’s little joke. Because my dying will either occur in the bed or in the head. And I worry that once I can’t do stupid and suicidal things anymore, that I won’t be able to die; won’t stop breathing, will go the long slow road. Is there anyone that wants to go that way? I found out that the waiting list to find out if I stop breathing during the nighttime in Victoria is now….a year. I think there might be a lot faster way, which involves either a care worker trying to wake me up or Linda away on a trip and two days of a heat wave.

I get angry, for no reason, or rather for very little reasons. Get very angry because I can’t lift my arm over my head today and thus can’t blow dry the hair it took three hours to have shampooed in the shower. People move my wheelchair away from my chair for their convenience, so they can put down a drink. It leaves me trapped. Linda does it, everyone does it. They don’t mean to do it, it isn’t INTENTIONAL. How often can you be cruel before it is intentional? I don’t know. I guess that is what I mean by angry. When do caregivers, and nurses and people in the ER and my own partner GET that moving the wheelchair away takes away my ability to make choices, infantilizes me? Well not after a year. Maybe this is some form of grief, at lost things, or hey, maybe I am just an angry person.

This really isn’t turning into a bright shining post is it? The funny just isn’t here. I will get to the post on gender though I wonder why when it took me six hours to write the first one and it seems a lot of people don’t really know what to say. Which makes me think I must have done a pretty crap job on it.

Also, in case anyone didn’t get the message; I do things which are suicidal and/or excruciating painful because I have to. Or because I also have a tendency to be suicidal. These are not “how-to” manuals. I am not plucky, I do not have ‘spirit’, I am dying and if suffering horrible pain for days is the only way I know how to STOP or SLOW dying, then that is what I do. And I do it for as long as I can stand it, because the alternative is more terrifying. I took a risk this week because I felt like I was already dead. Not because I think doing stupid and suicidal things is a good and reasonable way for people with chronic disabilities to live. It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.

If I really wanted simply to die in peace, I would stop blogging. But the truth is I am too scared shitless to do that, even on really crap days like today.

The veins in my arms seem to be free bleeding into the bend of my elbow creating bruises. Does that count as an interesting enough trick for today.

Mittwoch, 25. Juni 2008

Girly Boys: boys who have gendered girl interests and boys on girl's teams.

Yesterday Linda had lunch with a female friend of ours. She has twin boys and there are three and a half now, I think moving towards four. And one of the boys is much like one of Linda’s nephews: if it has wheels it is good, trucks, trains, things that have wheels, things that can be raced or smash against each other or fight each other. The other boy like dolls, has dolls and likes make-up and just got his fingernails (and toenails?) painted with his mom. To his credit the father was surprised but said nothing (and probably not THAT surprised).(one of these is a girl, one is a boy....does it matter?)

Linda and I talked about it today because, I guess a lot of women our age who we know have kids and a certain percentage of the boys specifically chose items which are marketed gendered for girls. Now there are a lot of names for these boys: “sensitive” is the ones relatives often use, effeminate, feminized (willingly), feminine, sissy, nancy-boys, etc. The one I am going to use because in North America child magazines they talk about “girly girls” (ultra barbie, ultra pink, etc) and Tomboys. So, I mean no offense but for the context of talking with Linda and this post we will call these boys: girly boys (as in boys who like specifically gendered ‘girly’ things). In fact, this aspect is so common that in the UK the Guardian did a series about the percentage of boys (a decent percentage) who like to come home at young ages (like 3-6) and “dress up” usually in princess dresses. Some have sisters, some don’t, some grow up gay, some grow up transgendered or transition as transsexual, but most grow up straight.

So, we were musing about a boy we know whose mother seems both equally accepting and clueless. He is about 10-11 now, when asked what he wanted for his birthday he said, “A pink dress”, and he has a doll baby he pushes about in a pram. So, we have a pretty hard core girly boy and we asked the woman, “If XXXX is gay, would that bother you?” And she was, “Oh he’s nothing like that, he just wanted the pink dress because it was an anime character.” (I’m thinking, “Like Sailor Moon maybe!”) And our feeling is that quite honestly, it is no big deal. Or rather I sort of wanted a safe space for these kids, because kids should be kids and torturing a pet and a boy being girly shouldn't be treated with the same horror (one shouldn't be treated with horror at all is my thinking). So what we discussed because I am always trying to get people into sports is whether Linda thought that maybe having this 11 year old, if interested, join the girls soccer team or volleyball team would be emotionally appropriate? Because I know a boy who liked giving tea parties at 5 and now is into planes. But I also know that an 11 year old who wants pink dresses and paints his nails and is put on a boys soccer team is going to become a long blood smear along the grass. I know that girls soccer is serious (and you want violence, try field hockey!) but there are essential differences between girls sports and guys sports. For example, in watching the under 15 volleyball tournament for the mid-Vancouver Island, the guys are all serious and when someone messes up, they coach glowers at them, and yells about “killing” the other team. On the girls teams (equally serious), almost universally, whether the point is won or lost, there is a group hug. When a player messes up, they are not shouted at or yelled at but the OTHER players all come and give them a group hug and encourage them.

Now I am sure that there ARE coaches that tell the girls to “kill” the other players (hopefully not at 11 or 13), but the way that females play sports is different than the way guys play sports. Often a male “team” sport is actually many individuals trying to prove they are the best (just watch the many, many basketball and football documentaries to see this). While female teams are about, usually and especially at an early age, the team, making sure everyone on the team is okay (not that there isn’t tension and feeling). But for example, I know of one female varsity college team which when a sub was going to replace a regular and a big meet was coming up the team meet and talked for THREE HOURS until “Everyone felt okay about it.” (They went on to win). Which is different than the guys: “You’re up, you’re out, now suck it up!”

So, Linda thought that putting a girly boy who was 8 or 9 or 11 in a girls soccer team would probably be a good idea. Because for one, there would be some chances for friendships (common interests?) and that the style of coaching would be different.

I did a LOT of research today to look at different articles on boys joining female teams and basically it comes down to this. In North America it has been a generation since females have been able to join boys teams and I know plenty of girls who have done that. For example, if I was AB, I would probably join the drop in basketball although I haven’t seen a single female there in over a year and a half (Being the only female AND in a wheelchair…that would be pushing it, at least this month). So people are used to that. And generally the articles are how the girls are plucky or scrappy or talented and can beat like 1/3 of the boys on the team. But the general implication is that men are superior and when a REALLY talented female comes along, she might be able to keep up so SOME of the guys. However when boys try to join girls teams, that is a whole other story. This Canadian story from 2006 for example manages to hit most of the stereotypes. First is that it is such an uphill struggle to get women into sports and every male would take away spots; the head of the Manitoba organzation says in this self contradicting statement: "Everything that our organization has done … is based gender-equal. And if we all of a sudden get an influx of males participating, it could affect female participation and that would be a travesty."

The other idea, which has a quote is that women’s sports are ‘easier’ and thus males who can’t make the “real” team would still want to take court time on the women’s team. This is what I call the “betrayal story” because on the one hand, it is a threat given to women’s teams who accept males (like the volleyball coach who refers to Kyle Ray on the girls team and the threat of men on girls’ teams: “they’re just physically more advanced than women are.”). This is the whole, “if guys decided to take over the women’s sport they could.” Threat. But to Kyle himself, the article emphasizes that “At five-foot-eight and 140 pounds, Ray is not physically imposing and wasn’t the team’s tallest player or its hardest hitter.” Ergo, not a REAL guy. Presented as a traitor to males in general in not accepting his place as down at the bottom of the “more advanced” gender. “However, complaints and negative cheering became a regular occurrence throughout the season. During a game against one rival school, Ray was booed every time he touched the ball” And the coach specifically put him as setter to make sure he wouldn’t make a jump or kill shot (thus causing more hatred). But the girls on the team were for Kyle, “They all supported Kyle and never, ever questioned his motives. That was true of their parents too. The girls even signed a petition to make sure Kyle was allowed an opportunity to try out.”

In fact, the harder I looked, the more stories I found about sports being opened for females (and believe me I am FOR female sports, it is just if you look at my previous posts on this blog, I was more female sports but not on male terms – where non-traditional female sport athletes overcompensate off the field, and a majority of female athletes have eating disorders) but almost nothing about males. For example, a story from THIS year, 2008, tells how 13 year old Bobby Thorn was denied the cheerleading team despite having trophies in gymnastics and cheerleading. The reason from the female coach according to the other parents was ‘she didn't want a boy on her team.’ She is also the schools guidance counselor.

From a decade ago, here were the two boys who are on the girls field hockey team, benched for every game at the schools decision. Though they were both dressed in uniform, polo shirt and pleated skirt. ‘"It just seemed like fun," says Julian, who last year watched practices while waiting for his bus home.’.... “Some of Julian's and Andrew's biggest supporters are their female teammates. "If there's no boys team, then they should be allowed to join the girls," says the team's goalkeeper Maeve Miller. "I thought we were supposed to believe in gender equity."” Yet the school district has decided that if the boys play it might deter female from trying out.

A 2005 story from seattle is about a 15 year old boy who competes with the girl’s synchronized swim team. He is in this photo. “He first tried it seven years ago, following his sister, Layla, to practice. Since he joined the Aquamaids in 2003, his younger sisters, Summer, 8, and Ani, 6, have followed his lead. Smith said he likes everything about the sport: the intense workouts, the team camaraderie, the intricate routines.” To me, this seems like a good fit; he likes being there, he likes working together. What is the problem? The problem and constant mocking and taunts is GUYS don’t synchronize swim, and they don’t do it on girl’s teams.

Again, this seemed like such a case of where the principles, the “big decisions” were crushing individuals. It seems odd that the very laws that women fought so hard to move toward equality in sports (and believe me in money and sponsorship and coverage there isn’t anywhere near equality), are actually making life difficult for guys wanting to play field hockey or volleyball or cheerlead. Actually, not a good day for cheerleading, which for years has been trying to present itself as a professional sport.

Except that last year in upstate New York when the public New York High School Association determined that cheerleading support shouldn’t have gender bias, meaning cheerleaders cheer for GIRLS and guys teams, the 30 cheerleaders at Whitney Point High School dropped to eight. “''It feels funny when we do it,'' said Amanda Cummings, 15, the cheerleading co-captain, who forgot the name of a female basketball player mid-cheer last month.” The nationwide complaints regarding unequal support last year was 64, up from 28 complaints for the last four years combined. “''It sends the wrong message that girls are second-class athletes and don't deserve the school spirit, that they're just little girls playing silly games and the real athletes are the boys,'' said Ms. Pudish, an accountant

"Katelin Maxson, 17, a senior who is the cheerleading captain, said that while she does not mind cheering for the girls, it has doubled her workload: She has continued the tradition here of decorating the lockers of the basketball players on game days and bringing them treats.

''We joined sports to have fun, but they're basically taking the fun away and giving us more work,'' she said. ''The interest is down so much, and it's going to keep dropping, until there's no cheerleading anymore.''"

The problem isn’t just sports, as I found out, tomorrow I will try to cover some of what I found from “The Gender Police” – where parents tell of using flashlights to expose that their boy is wearing the Barbie hand-me-down nighties and how they pull him from it to push him into the GI Joe pajamas he SHOULD be wearing.

Or if you want a taste, look here at this topic “Boys wearing girly colored diapers?” : “no, I would not put my boy in a girly color/print diaper unless it was an absolute last resort and then would feel funny about it.”; “Its weird I guess, I wouldn't think twice about putting a blue diaper on a girl, but I would cringe if I saw a pink diaper on a boy.” And this eyebrow raising one, “I don't think that I would put a boy in a girly diaper (unless of course it was a last resort) but I wouldn't think twice about putting a girl in a boyish diaper. Maybe it is because I don't have a problem "stealing" clothes from my husband but I wouldn't really be comfortable if he did the same to me?” It does seem that a lot of decisions about what genders are allowed to do come from "feel funny" or other "gut" insticts (almost like social brainwashing!)

Sigh. So no resolution except that girly boys unless they live in Berkley are going to live a hell life and it seems that is if they are able to escape the “gender police” who start at infancy? I tend to have a “no one should have a crap life” and “sports should be about having a good time” and to me, it seems that there are some guys, maybe girly boys, who would benefit or enjoy being on girls teams. And beside the “gut” saying that an 8 or 9 year old boy on a girls team (or even an 11 or 13 year old) is WRONG, what is the problem? Because instead, jamming a girly boy on a boys team to "toughen him up", well I smell traumatic incident, don't you? And then someone spends the rest of their life instead of having good memories saying, “I never was good at sports.”

I know that opinions will differ (and feel free to give them, just try NOT to be anonymous). It just seems that if these boys, regardless of the fact that studies show girls get talked to more, praised more, are treated different, less rough, if despite all of that these boys, who aren’t planning or conniving, just being themselves, which in this case is painted nails, dolls, probably horses and princess dresses, then, why is there no place for them to go? At least in terms of sports?

Mittwoch, 18. Juni 2008

Oh hai, I has shadows!

[UPDATE: July 27, 2009] Please note the dynamic shadows are now included in the official Release Candidate viewer. To enable them, make sure you have atmospheric shaders on, then go to Advanced menu Debug Settings, make sure RenderDeferred is set to False, set RenderUseFBO to True, and then set RenderDeferred to True.

Dynamic shadows in Second Life! Woohoo! :) When Torley posted his movies showing the experimental shadows feature, I instantly wanted to test them out as well. The feature is for NVIDIA GeForce 8 series graphics card (or better) and is not yet available as an official viewer, but it's not too hard to find the patch - either one to compile yourself, or compiled by one of Second Life residents.

I absolutely love this feature. It adds to the atmosphere so much! I decided to go on a little vacation on Bahia island and recorded some footage to share with you:

Isn't it sweet?

Sonntag, 15. Juni 2008

Trademarks, oh my!

This is a post I've been wanting to write ever since Linden Lab announced their new trademark policy but somehow I took on my other activities and the topic has been waiting till now. The end of 90-days period to adjust to the new guidelines is approaching (23rd June) so I think it's a good time to post some after-comments and a good moment to share what I think about Linden Lab's move.

The restrictions are out for quite a while now and there's been a lot of talking on the SL blogosphere about them, mostly negative. I remember in the beginning, when I saw the official blog post, I thought it was a good move. I was happy that Linden Lab decided to protect their trademarks and I considered the inSL™ logo useful. Then I kept reading people's posts complaining about the new trademark policy and got myself into thinking the same way they did. It was very easy to fall for that, it was like reverse groupthink and it took me a bit of time to realize that and get back to my own opinion.

Probably one of the most silly remarks was the one stating that Second Life tagline Your World. Your imagination.™ is not true anymore and that SL world isn't ours any longer. Well, when I say my country it doesn't mean I actually own it, does it? It's a place where I live, which I'm part of, I decide about what surrounds me to some extent, I meet people, I have family and friends, it's where I work, etc. I influence it. But it's managed by the government. So yes, the SL world is ours, it's where avatars meet, interact, have fun, create and learn, but the assets belong to Linden Lab. They created this world from the scratch, so don't expect they'll just give it to you. It's their right to decide about company's future and I'm sure their decisions are discussed thoroughly before being announced, not just thrown in the wind because someone said it would be fun or interesting to see what happens.

Another silly reaction (but I must say a bit funny) was people adding ® or to every mention of any of Linden Lab's trademarks or registered names, or renaming them to phrases like virtual world, you know where or something similar, on the whole blog, in every entry they ever posted there (some of these were ironic, I know). I haven't had much legal education except some obligatory classes I took in high school, but the first thing they taught me (or maybe just the one I remember the most cause it's really useful) is lex retro non agit (law isn't retroactive), which means that blog entries dated before the creation of Second Life Brand Center don't have to be corrected. On the other hand, if all those trademarks and logos were registered earlier (and I think some of them were), people shouldn't have been violating usage rules in the first place, even if they didn't know about them. Ignorantia legis neminem excusat (ignorance of the law does not excuse) is another rule I was taught. But I don't think Linden Lab would chase bloggers for leaving past entries as they were. And finally, befofe the creation of the Brand Center, Linden Lab stated that fan sites (and I think that includes SL blogs) should put the following note in a visible place (you can see it on my blog's sidebar):
Second Life® and Linden Lab® are trademarks or registered trademarks of Linden Research, Inc. All rights reserved. No infringement is intended.
If you had placed this text on your blog and you're outside the United States, you're OK, according to Proper Reference to Linden Lab's Brand Names in Text article:
Outside the United States, do not use trademark notice symbols like ® and ™, but do use the statement of trademark notice provided in Paragraph 2 below.
And the Paragraph 2 says:
In the United States and elsewhere, always use a legible and reasonably prominent trademark attribution notice in the following format: "__________ and __________ are trademarks of Linden Research, Inc."
As to residents located in the United States, it's not as complicated as it may seem. LauraP Linden said in her blog post:
The first or most prominent reference should be followed with the correct trademark symbol (® or ™) and an appropriate noun to indicate what you’re talking about (...) Now just to be clear – we’re only talking about the first or most prominent use. We’ve seen some blog posts using ® after every mention of "Second Life." After the initial reference to the trademark at issue, there’s no need to use the symbol again.
So basically, you need to place ® once, in a visible manner, and then you can continue as you used to. I'm based in Europe, so I don't really have to do that, but I might add ® to Second Life words in my blog's header, and I won't be using ® when I mention Second Life in my blog entries, unless Linden Lab employee will contact me and say that I should. Which I'm pretty sure won't happen.

Finally, there were people who said that new trademark policy will make them type more and waste their time. Seriously... Typing ® or ™ is not even one second, and as I said earlier, in most cases you won't even have to type this in every blog entry. And if that's not enough, look, Linden Lab does the same on their website. It's just law and it's there for a reason. I agree law can be silly sometimes, interpreted in as many ways, as many lawyers there are - so even if there's something people don't get, I think Linden Lab will explain (which they proved posting the explanation twice already). Linden Lab cares about their community, and the step they took is in fact to protect both - the company and the community. They're making sure their company's reputation is not at risk, and making sure their community won't be scammed, for example by sites pretending to be their affiliates. But community will always complain. There will always be someone who doesn't like changes, especially if the changes require them to adjust.

While I understand annoyance of those residents who had to change their blog address or name of SL group, I think we really had enough names like SL This And That. The changes encouraged people's creativity to come up with something unique. Take Second Life Ballet for example. Yup, it must have been hard to think of a new name, and probably it took a significant amount of work to prompt all the fans to switch groups and update web address, but isn't Ballet Pixelle so much more creative and individual? This type of name is much better than the boring Second Life Something and I think it is much better to actually identify with for people involved with the project.

All in all protecting your brand is a very important aspect in business and it's a good thing Linden Lab took care of that. What's nice is that they provided the clarification twice to demanding community, even though they didn't really have to. It's your responsibility to comply with law, and no company is obliged to provide you with instructions and detailed how-to. Isn't that a sign they care? I agree sometimes LL is in the wrong - probably everyone was at least once. They do make mistakes, and they do take actions I don't agree with. But in this particular matter, I think they're doing the right thing. Even if it was a difficult move, it was a needed one. The longer they waited with this, the more difficult it would be.

As I said earlier, I'm not a lawyer and this is just my point of view as a resident of Second Life. If you know I'm wrong somewhere in this post because you're a lawyer and understand law better than I do, feel free to let me know in the comments, but please also explain why. Also, the point of this post is not to stand against residents who disagree with Linden Lab's move, but rather to show the other side of this issue, so people can read and have their own opinion.

Samstag, 7. Juni 2008

New release: Fishing Hub and accessories

I released new fun items at Magic Nook!

* Magic Nook * Fishing Hub

Fishing hub is exactly what the name suggests - it allows your visitors to catch fish at your port/docks. The hub dispenses free fishing rods with instructions to anyone who touches the sign. The rods will only work with Magic Nook fishing hubs, so people have to stay on your land to fish, within 20 meters from the hub.

There are 5 types of fish in the hub (blue, green, red, pink and orange), each one in 3 sizes (small, medium and big). All in all people can catch 15 different fish. Each time someone catches a fish, the hub will announce it to others. People can keep all the fish they catch. The fish come with "holding as a trophy" animation, so people can take pictures with their trophies.

The hub keeps stats, which are available for the owner after he/she touches the sign: how many fishing rods were dispensed, how many fish were caught and how many fish of each size were caught.

* Magic Nook * Fishing Hub Accessories

The package consists of various items to create some atmosphere at your docks. They are meant to be used with Magic Nook fishing hubs, but feel free to use them as decorative elements for your place even if you don't own the hub. All items are copiable.

In the package:
  • Two types of fishing stools (with male and female poses), in 7 colours
  • Fishing rods created for display purposes (no scripts inside), in 7 colours
  • Swimming fish - all sizes, in all colours, each one swimming clockwise (R) and anti-clockwise (L) (a total of 30 types of copiable swimming fish)
* Magic Nook * Personal Fishing Rod

This fishing rod will ONLY work with Fishing Hubs brought to you by Magic Nook. It works exactly the same as the free rods from the hub, except that you can customize colours in this one. It is copiable, so you can create various colour sets for different outfits.

You can set colour for almost every prim in the rod in a few clicks (through the blue dialog menu).

Additionaly in this package you recieve a rod with customizable colours but no fishing script inside (NS), to display at your place as a decorative item.
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