Saturday, September 29, 2007

The lesbians go to the sex shop: vibrators ahoy!

Looking for a bonding and cheerful event for us this weekend Linda called ahead and found that a local adult toy and sex aid shop was wheelchair accessible on “one floor.” So off we go! Turns out, “one floor” actually meant the 20 feet around the entrance before the stairs into the sunken shop. Well, so much for subtle browsing. The girl there (let’s call her Ana) was pretty cool so within about 15 minutes we had enough sex toys opened up on the counter to drive the two guys shopping there to the complete other end of the building. We were looking for something functional, a toy that could handle solo and partner work and made by a decent company. The problem was the boxes most vibrators were in made it very hard to take the toy seriously. We looked at about five different butterfly vibes only it was hard to focus on the vibrators because the boxes and names were SO trashy.

While I liked the high intensity vibration of the clit stimulator butterfly antenna, did I really want to buy a product called “The Hustler” (pictured) or worse, look like one of the big breasted, I-am-totally-a-porn-star women who was spread (literally) across every other butterfly vibe front cover. Was any pleasure worth the bizarre and perhaps male-fantasy induced look on her face (and long dewy lashes)? I asked Ana there if these particular boxes included a booklet for starting your internet porn business. I don’t know about you, but I don’t shave every single body hair, put on full face and body make-up then get my hair blow dried to country music size just to use my vibrator. She totally agreed on the, um, depiction of women chosen to sell the product (hey company, aren’t you selling this to WOMEN? Where are the natural women using said product?) and talked about some chin strap dildo they had gotten in with a ludicrous name like “Master Penetrator” and how it had to use a styrofoam head for the picture because they couldn’t some big hair/big make-up blondie to manage to make look sexy.

Anyway, we looked at the Rabbits, which we sort of wanted since ours limped its way into a weird humming and grinding sound death. But there were so many we soon realized we really wanted to do some research first. The guys in the store had some stuff in their hands and made a move toward the counter. I asked Ana if she wanted to help them but seeing two counter tops full of sex toys and batteries everywhere and off they scampered again. Of course Linda and I were giving each other looks because with the Canadian Dollar AT PAR with the US, we didn’t want to buy a product for $80 that we could get for $30 online; but we did want to get SOMETHING until our imaginary, soon to be made, internet order arrived. Linda it turns out was trying to find something that was good for me, while I was trying to push her toward things I thought she would like. Meanwhile Ana had brought up the Feeldoe, which is the “Dildo made by women for women” (and has a bullet vibrator inside). My first thought was the “women” must be pretty darn expert with big sex toys because the length was SEVERAL inches longer than the average rabbit. And quite honestly, the phrase “Massive Skary!” was going through my head with it sitting, eye level to wheelchair girl, as it hogged up most the counter space. When Ana explained it was the first/only strapless dildo for lesbians, then things made better sense (extra length for using it in different positions). Reviews say that once you have the bulb in place, you can walk around the house swinging your penis so lots of gender bender fun (as with the ridges, one of the ways to masturbate once it is inserted is to actually just play/stoke the “penis” end for your G-spot stimulation). It is supposed to be great for training your Kegel muscles and you can wear it “packing” under jeans for that trip to the lesbian bar. While I appreciated that Ana was showing us lesbian designed toys, Linda and I did an eye look which said; “look it up later online.” Ana said this shop was gay and lesbian friendly which others weren't in town. Which was pretty cool since I can't think most stores get a lot couples, woman and woman in wheelchair, coming in saying "Show us all your vibrators!" and being as friendly and inexhaustively cheerful (and non-pressure selling) as Ana was.

Ana had gotten to the “fun looking” section which is actually a German Company called Fun Factory. This is not to be confused with an actual TOY company for children in the US with the same name. Fun Factory (Germany) make high end silicone products that look friendly and fun to “add” to partner play. They are fun shapes and colours including smiley face bugs and caterpillars. I was initially leery of having a sex toy which looked like I stole it from a children’s “Our Outdoor Friends” activity set. Then Ana showed us the vibrator settings. There was “mmmmmm.....good”, “More......”, and “Ohhhhhhhhh......!!” And then, when you push the button again, it starts to pulsate: literally vibrating and pulsating waves. Now I understood why the florescent animals were smiling (Fun Factory als make a Rabbit type vibrator that is a mermaid – nifty!).

I am not going to say which Fun Factory product we now own but we were glad we went in to talk to Ana. And now we are going to buy everything else on-line. I was going to talk about the rest of the day/week (physiotherapy, degenerating body parts, a indoor climbing instructor recommendations, and racing wheelchairs) but I think we will stick with this good and happy place. Side note: I did get to see the book “The Japanese Art of Seductive Bondage” – sadly it was more about actual tying up people than historical Japanese bondage arts. So to finish, here is this Groove Coverage video She, which is filmed to a 70’s style lesbian and bisexual camp-out (check out that hair and those clothes!). Yes, there is full on woman to woman kissing (and actually a lot more if you watch what happens in the background). At some point the bisexual women go find a man to play with but it is basically raw sexual girl power (and drinking) by the lake, along with a row of women doing standing up pissing that you really have to see (would your life be complete without this image....I think not!). Happy day!

Wednesday, September 26, 2007

Total random stuff, including timing male orgasms

Thank you everyone for the comments to make me feel not alone at the hospital. It worked. Okay quick summary of the last few days: pain, drugs, sleeping, more pain, fear, talking sex with a straight woman, pain, difficulty breathing, crying, more pain, drugs for sleeping, finding strange bruises on my arms.

So boring old human condition stuff and nothing particularly blog worthy. I am a month into having no GP, and two weeks after the government paid home care company announced it was quitting. So whether anyone will show up for a shift is a bit of a lotto. The managers stated that I shouldn’t be getting information on other patients or on the company itself yet they call up my number and ask to speak to the person caring for me. Then they try to browbeat the person into taking another shift for another client later in the day. I supposed to wheel myself out of hearing distance of my own phone? The care givers are already sending out applications to other agencies, so I expect it will get worse as time goes on. The company already said they “don’t have the technology” to let me know who is coming by email. That’s reassuring, so 1980's. So we asked for a schedule by fax. Nothing yet. I guess I will continue down the technology tree until I ask for my schedule scrawled with a bit of charcoal on a napkin?

On the bright side…, I had a dream where I was being hunted by guys with guns. No, I do have good news. First, I got my order of goth clothes including an autumn hoodie in purple and black lace by Lip Service decorated with little winged skulls. I will try and get a pic of me in it to post tomorrow (Assuming it isn’t raining AGAIN!). I got some goth tops and earrings of different animals in skeletons, like kittens. Nothing is as nice as NEW CLOTHES.

Second, I am recovering enough to do the Breast Cancer 5K this Sunday. I have waited all summer to do this 5K. Earlier, when I was stronger there were 5K’s and 7K’s I thought I could do but they were non wheelchair accessible (sections over gravel trails). Then I got weaker. Then my right shoulder and arm was all messed up for a month. But now I am back on target to do this 5K; pretty much the last of the season. And let’s face it, it way more interesting to do the Breast Cancer fundraiser than, for example, the Intestinal Parasite 5K.

Much of this last week has been very up and down both physically and emotionally and I have decided that if there is any chance of me surviving the winter without ending up in the big blue funk then I need a plan, or a lot of plans. So I am going to be trying to come up with a list of lots of different goals to try and do so that the day to day doldrums, pain, disappointment and getting dumped upon from a great height don’t consume me. I have come up with one so far: learn an wheelchair possible circus art (high wire wheelchairing? Wheelchair Trapeze?). If you have any ideas, let me know – I’m pretty open right now to suggestion. I also have a strong desire to occupy the health minister’s office as a protest to not having disability rights. The fact I haven’t been arrested for protesting in a city full of apathy makes me a bit ashamed of myself. Someone who moved here from Europe told me: Canadians act very nice and polite, but often, they aren’t very nice at all. I thought that was pretty accurate. Linda calls it the $1000 rule – because government agencies have to have their budgets match within $1000, so all decisions are made based on “will this risk us to go overbudget?” instead of “Does this person need help?” Or individuals worry “Will I be held responsible for this?” I don’t know why many Canadians hate taking personal responsibility but they do, at least on this coast.

In total trivia; a straight woman has told me that men orgasm very quickly – “1 minute, 2 minutes, 5 minutes.” It seems hard to believe this is what guys can spend days and months working toward: 2 minutes to orgasm. Is this the average? I am sure there are porn stars that take 42 hours, but I am looking for an insight into straight sex (or gay male sex), so if you have been keeping or collecting data, please post!

Sunday, September 23, 2007

Watching Bones and going to the Hospital

Linda and I have been watching Bones Season 2 together as she keeps me calm(ish) this weekend (jittery about going to hospital). We enjoy Bones because she is our hero with a slight case of Aspersers. Not only does she miss all social and cultural references, she has difficulty understanding social cues based on facial expression (and is traditionally bad at getting and making jokes). In one episode in Season 2 she is in the Interview Room with Booth, and Booth and the Suspect realize at the same time that the suspect has unwittingly implicated another person. They both fall silent. Bones jumps up and is going from one person to another staring in their faces saying, “Something happened; you communicated something to each other, you know something. What happened, you have to tell me what that was.” Also of course, she is desperate to participate in the social activities from which she has distanced herself and been excluded from traditionally.

It is just not often that someone who has such a condition is not only played sensitively, as the lead and put with a great counter character (the big boy-scout Booth), which gives them sexual and interactive tension. There is a scene where Booth is trying to explain to Bones why people talk to their dead loved ones at the graveside. Bones says slowly as if to a small but potentially dangerous child; “But they can’t hear them…..they’re dead.” (Which is almost identical to a conversation Linda and I had early on in our relationship).

Anyway, I am in the hospital now, so I will be absent a few days. I do not like hospitals, by the way, they are full of hospital smells and hospital noises and they have MANY pointy objects (I got another blood test done on Thursday, hooray!). I usually start telling the anesthesiologist all sorts of really embarrassing secrets for the 45 seconds I am totally high before I pass out. Or sometimes I just beg them not to kill me while I sleep. All I know is that usually everyone but me is laughing.

See ya in a bit.

Saturday, September 22, 2007

The book meme: from victorian lit to gay cowboys

I got tagged by Goldfish for the Booky Meme, and since I love books, I will definitely want to do this one.

Total number of books owned

This has gone down since I no longer keep extra ones stored in different countries. I am pretty sure is under 3000 now. I hope? Obviously this isn’t just the books that I have read but also books that I bought just IN CASE I am snow bound for 2 months, the books for that academic paper I was going to write but forgot, and the books I did read, and never wrote that paper on (There was a great literary paper I was going to do on Edwardian Crime Fiction where the ‘criminal’ always turns out to be the person who drops their H’s when they speak: Dorothy Sayers’ writing was prominent as one novel determined who the killer is by how the different characters play cricket). And of course the books I ‘should’ own, along with the books that it would simply be a shame not to own.

Last Book Bought

The last book I bought was a manga called Call Me Princess; it is an old school romantic shojo manga that would be read by 13 year old girls. I got it because it I had a used book credit and it was the only decent manga there. I did look at many other sections and was tempted to the by the book Spontaneous Healing so that I might hit the vast number of people who recommend this book to me. I assume they think that while saying, “If you really believe in Jesus, you will be healed” might offend me; telling me to read a book that says that if my cancer/CFS/Lymes/other illnesses aren’t cured is it because I am not ‘optimistic’ or ‘centered’ enough isn’t insulting.

“Oh, you look very ill, have you read Spontaneous Healing?”


Last Book Read

The last book I read was Meg Rosoff’s How I Live Now, a young adult novel about a 15 year old anorexic American named Daisy stuck while visiting relatives in the UK country side. She is at a farm without adults during the onset of an under-detailed war and occupation. Through the four children it shows the different ways people cope in war and traumatic situations as while Daisy’s anorexia changes because she needs to take care of a younger child, one of the older boys becomes an obsessive self-harmer. What I like about the book is it never actually uses the words (anorexia or self harm) but it is reflected in all the statements, like when Daisy falls in love: “....I was starving, starving, starving for Edmond. And what a coincidence, that was the feeling I loved best in the world.” And who would think to talk about self harming behaviors in the backdrop of a vague war setting in the UK?

Five Book that Mean a Lot to Me

The Diving-Bell & the Butterfly by Jean-Dominique Bauby

I always considered this one of the great works of writing. This is true memoirs of a man with ALIS (Locked in Syndrome); a man who went from editor of one of the most popular magazines in France to a completely paralyzed state. He was only able to move one eyelid, and thus dictated the book, one letter at a time. I considered him the equivilant of Borges on the human conditions; as where Borges makes metaphors, Bauby illustrates the feelings of one man in real but for most unimaginable conditions.

Now I consider Bauby to be my goal marker, “If Bauby can get it across in just three pages, then I can write about it.” He challenges me to write well about subjects which are simply never written about. Here is one of his short essays:

My Lucky Day

This morning, with the first light barely bathing Room 119, evil spirits descend on my world. For half an hour the alarm on the machine that regulates my feeding tube has been beeping out into the void. I cannot imagine anything so inane or nerve wracking as this piercing beep beep pecking away at my brain. To make matters worse, my sweat has unglued the tape that keeps my right eyelid closed, and the stuck-together lashes are tickling my pupil unbearably. To crown it all, the end of urinary catheter has become detached and I am drenched. Awaiting rescue, I hum an old song by Henri Salvador: ‘Don’t you fret, baby, it’ll be all right.’ And here comes the nurse. Automatically she turns on the TV. A commercial, with a personal computer spelling out the question: ‘Were you born lucky?’

The Little Prince by Antoine De Saint-Exupery

Back when I was into making lists, there was a list of books I would read every year (the suggestion for the list came from Borges). The Little Prince was on the list. I cannot remember the number of copies I have given away of this book; I have the first edition in both French and English, along with a multitude of paperback copies. It certainly teaches a person a lot about bureaucracy, love, selfishness, selflessness and appearances and is still under 100 pages. I find that each year, I have become a different character, sometimes the prince, sometimes the downed pilot, the fox, the lamplighter, even the vain, proud, naïve yet fragile and lonely rose. The book The Little Prince is very much like a sheep in a box (read the book to figure that one out); it is everything you might need or want it to be.

The Book about Books: The Anatomy of Bibliomania by Holbrook Jackson

I recommend anything Holbrook Jackson has written because this is a man who really loves books. And this is his magnum opus: a book which must have taken years if not decades of mind boggling research. It is a book dedicated to the love and lovers of books all done in sections and subtopics that appear so unbelievable that you might find a book like this in heaven. If you want to read about people historically who have eaten books, it’s in here, along with those who like to touch books, who get locked in cupboards with books, debates on old books versus new books, long ones versus short ones. On where one should read a book, and where one should find it. Chapters entitled: Do Bibliomaniacs Read Their books? And How Books have made and Changed Character. If you love books, then find this book, because you are probably in it.

The Collected Ghost Stories of Mrs. J.H. Riddell

Considered as good a writer as J. S. LeFanu, over time J. H. Riddell has been largely forgotten though collectors pay hundreds to thousands for copies of her books (I know, I have about 20). She is a writer extraordinaire overlooked because she was female. She was one of the first professional female writers who supported not only her own family but also her in-laws on her writing (which was more popular than her male contemporaries but paid 1/4th the rate).

Though written in the Victoria period, the work is easily read today and invokes not just a period but an atmosphere (which is where ghost stories do their best work). She is not life changing but reading her gives me that tingle of pleasure one gets when you realize you are reading something that is perhaps the best of it’s type, and that what you experience is something you may never get to experience again. Her writing is a rare vintage port or fine crisp champagne by the riverside.

Queer Pulp by Susan Stryker

This is downright fun, covering all the pulps from the golden age of paperbacks as they delved into the world of lesbians, gays, bisexuals and transsexuals (with a bit of incest and polygamy thrown in). Full of covers and titles like Lavender Love Rumble (a woman in love with a lesbian stripper), Hot Pants Homo, Gay Gay a Go-Go and The Constant Urge. Not only a great book to leave lying around the next time your relatives from the bible belt states come a visiting, it actually describes each book, and the context of the period. For example, over a dozen actual lesbians wrote almost 100 novels between 1950 and 1965 and this book can help you find the real titles from the titillation ones. This has everything from the fictional transsexual spin-offs from Christine Jorgensen’s appearance to gay love cowboy books (doesn’t everyone need to own at least one?).

Seriously, could you really not want to read a book called “The Odd Kind: Unveils the sleek and expensive world of lesbians who model fashions in public and perform age old rituals in private!” Wait, tell me more about these age old rituals? I can’t find them in the Lesbian Sex Guide!

I tag Cooper (cause he’s a writer), Kathz (cause she reads odd and old books), Zephyr (because I can’t WAIT to see what she posts), Daniel (I think you did this a while ago, but do it again, it's good for you,, and Artistic Soul (a.k.a...well, we all have our secrets). I recommend anyone else I haven’t tagged to please take part – never enough readers, never enough books!

Wednesday, September 19, 2007

Feeling 'Normal' for an afternoon.

I am sure there is some politically correct reason why a person with disability should not use the world “normal”; actually probably about 10 reasons. But, yesterday, I was in a group where I felt ‘normal’ and it was great.

I went to a support group for a neurological condition. Because of confidentiality, I can’t write about the actual events but I can explain what I felt. I had gone to this Neurological Organization because I seemed to have a lot of similar symptoms that their diagnosis did. I explained that I was still far from a definite diagnosis and that what I had was something neurological and they invited me to the support meeting.

If you are gay or lesbian, you may remember the rush of the first couple times you were “out” and met and talked to gays and lesbians. There was that rush of feeling because you realized that all the things which made you feel different from other people and the things people questioned you about yourself, and the things you could never seem to explain adequately here, around other gays and lesbians were just....normal. At a gay/lesbian dinner no one goes; “Are you SURE you are attracted to women? Maybe you just haven’t met the right guy.” Because, of course you are attracted to the same sex, who wouldn’t want to be? And instead of being the person who was different looking in, you were now in a group that was showing you what was possible: “Want children, no problem. I have two from AI, myself.”; “We went on a lesbian/gay cruise; it was great; k.d. lang performed as entertainment.”

Well yesterday, for a couple of hours, I was in a room where everything medical that makes normal people uncomfortable about me was totally normal. Even the fact that it wasn’t a meeting room with big armchairs but a big space for different types of wheelchairs; it was a room where nothing I could do medically would be considered odd, or unusual, or threatening. I took some medication during the meeting; no one even took a second glance. When people talked about a particular symptom or experience, I would look up and just from the look on my face and the meeting of our eyes, we knew we had the same symptom. Where in the rest of my days I try to explain what is going on or what I am feeling, we jumped right over that to “What did you do for it?” They told ME I was tired (which I was), they said they could see the signs. I found out that the reason I could have the same attack/prolonged medical problems as someone else and not be admitted to hospital was because they had a label; a diagnosis and I did not (suck!). But the encouragment was the meeting saying to me in various ways, 'you're one of us.'

I think sometimes, whether it is your anime obsession, your sci-fi obsession, your knitting obsession, your scrap-booking obsession; whatever it is that strongly defines an aspect of who you are and how you view the world (For example, if most of your quotes during the day; “Never give up, never surrender”, come from Science Fiction Films, maybe you should go to a Sci-Con convention?) it is nice to be around people who simply “get it.” Where you never have to spend all your time translating what you mean and can move right into the dirty jokes (do knitters have dirty jokes, I hope they do).

Anyway, they voted unanimously that I could come back so until I get a firm, final and definite diagnosis, there is a place I can go.

In other unrelated news, I now have an electric hospital bed for my ‘can’t get out of bed’ and ‘I am choking on my own saliva’ days. My first response was, “Which of these buttons does the back massage?” And since one of the guys who put in the bed also worked for Search and Rescue, we traded nasty rescue stories (I am now convinced that no one should ever, ever go outside, at least not in the ‘real’ outback – after a few stories which include the phrase “shards of bone” you get convinced pretty quick). Anyway, back to bed, I have to see if I can raise my back and feet up enough to squish me like happens in the slapstick films. It is good to see I still have that scientific enquiring mind.

Monday, September 17, 2007

Going back on death row: hoping I have MS

It seems like illness is a bit like prison. At first I thought “I can do this, how different are things going to be?” Then, after a few months getting a quick trip to the ‘green mile’ ala Death Row; it is very different sitting knowing that people who are where you are only go in one direction (“toward the light” as they say.) But then, suddenly, through a few different opinions and the condition stabilizing, I was taken off Death Row, put back in General Population where I amused myself earning cigs and yard cred by translating latin and other doctor speak to the inmates.

Seriously, it is a very different feeling to think “gee, maybe I’m disabled but this could go on for quite a while” than being marked with Death. One has problems like I had recently, “I don’t have enough contact with people”, “I don’t have a job.” – you know, long term problems. While the other has this ‘staring down the shotgun barrel’ problems like “Do I ever want to see Paris again?” or “Should we have a kid RIGHT NOW, so they ‘might’ remember me a little once they have grown up?”

And I had forgotten pretty much what it was like to be on Death Row, until last night. I am trying to find a new GP, and this one wanted to get some sort of history of me from one of my specialist. I remembered that I had a recent letter from a specialist who had a “forward a copy to the patient” policy. When Linda was photocopying the letter she said, “Did you read this part at the bottom where he says he thinks you have blah-blah syndrome, or another of the la-de-da type diseases?” I hadn’t. I went on Google. I typed in the Syndrome, which has about six different names because it is pretty darn rare. The first symptom was the arrival of heart problems including positional hypotention, dizziness, blackouts, heat insensitivity, loss of balance, headaches, severe weakness, intermittent vision problems, slurred and impared speech, lack of sweating, difficulties breathing, irregular heartbeats, and diarrhea. It was the first possible syndrome which included the heart problems and the hypotention as primary symptoms (instead of “may happen in 1 in 1000 cases of this disease”). Indeed, though I wasn’t the typical age or other grouping, it still seemed like a very good fit.

My hope went up. All right, finally a specialist who knows what they are doing! Especially since the anesthesiologist at the hospital let slip that the heart problems were neurological issues. I scrolled down to find treatment. No treatment. “Syndrome ends in death X to X years after first symptom.” Shit!

Then it went on to describe the death, in detail. It’s not a particularly good way to die; certainly not how I want to die. Even the “some patient” deaths weren’t particularly cheery, since there were only two: the best was an inability to breathe and choking to death.

Of course, now I am starting to read back on the blog, and Linda is telling me that my heart beat and passing out where occurring in November 2006. If the majority of patients die after X amount of years after first symptom, does that mean I have already used one of those years up?

Oh, the monkey was on my back last night big time. It was hard to go to sleep as I was thinking, “hey, this is the first person to actually name the type of disease” – and thinking that as this syndrome, like all others right now is a disease of exclusion, can I really afford to wait another year for a confirmation, if I only have a limited time for getting on with anything I might plan on doing?

There is something about that black and white doctor speak which just flips switches. Two days ago, I was talking what happens when they fix the thyroid; getting a job, buying a condo over the next 10-15 years. Today, I am HOPING I have aggressive secondary MS because while there isn’t remission and your life sucks; people live fairly long, like 15-20 years. Because right now, rolling around in an electric wheelchair for 20 years sound pretty okay.

It’s like the guard showed up and said, “You’re back on Death Row.” And I’m going, “I think you’ve got the name wrong; and there are a lot of Elizabeth McClung. Are you looking for Elizabeth McLung? She’s on cell block D?”

I know in a week or two it will sink in and I’ll readjust, until the next bit of news floats down. I try to cheer myself up by reminding myself that in this town, I could get hit by a car any day (since they don’t slow down for wheelchairs). I decided to “live life to the fullest” this morning which meant by 2:30 pm I was on the floor sucking oxygen, and pretty much stayed there until 8:00 pm. Oh yeah, that fatigue crap. I told one woman that I was freaking out about the news and she said: “I’m sure you will be going to a better place.”

Wow, okay, now even the people I talk to want me to drop dead pretty fast. Geez, how bad do I look when people start telling me I am “going to a better place?” Does that mean I am going to Seattle? Australia? Is there some clinic they know about? No, I think they mean the heavenly beyond where I am supposed to get a lobotomy so that playing a harp endlessly is thought of as BETTER than my life now. Now do you see why I am clinging to life so desperately?

Friday, September 14, 2007

A mistress, non-phone sex and saying the "H" word

Well, I was gone blogwise a few days and it turned out that I had a more intimate engagement than with a date or with Linda. A meeting with my old mistress: Pain. The news that chronic pain really, really sucks probably isn’t a shocker. It makes you tired, and irritable and it is hard to find life's pleasure.

Plus, Linda and I both hit burnout. I had been emotionally surviving by looking ahead and trying to see a life that wasn’t the equivalent of being buried up to the neck in shit underneath a latrine. It turns out a lot of this was based on the summer and how I would do things and go places. Only that never really happened, and now, unable to return to boxing classes, unable to wheel until about November, the thought of winter in a wheelchair seem too much like a metaphor for my life.

Add to this my crappy intrusive homecare company is closing because they don’t want to match the Island Health Authority bid, which means that a) now the ‘to be filled’ spots on my schedule are even more likely to have no one show up and b) most everyone who does show up is dispirited, grumpy and complaining to me about earning so little (this I find rather bitter fruit as Linda is piling on the overtime at no pay in her government job and we can’t make ends meet; plus I have yet to find a way to make money appear in thin air by obsessing about it).

I tend to rate my home care company as crappy because while Linda was away a) on two entire days, no one came b) When one person finally did come, they concluded I was dying, notified the office and it was noted that next morning a check up visit to evaluate me to go to the hospital should be done c) That visit was never done d) When I talked to D., the head manager about why that wasn’t done and how he planned to follow up on that he seemed pretty puzzled, “follow up?”

“Yes,” I said, “Follow up. If you were supposed to come check on me because I was dying, and that was recorded in your computer, why did no one come? That seems a pretty big hole in the health issue to me. What specifically are you going to do about it?”

Since I never heard back from him, I guess what he planned to do about it was go out of business and let the 650 home care workers go. Or he knew that already and couldn’t give a toss. Plus it seems he likes to read this blog, which he found once he had my full name given to him with my medical information (Yes D., this site has a tracker that tells me where people access it from, even the exact terminal location). The disability center says that his use of my medical information to electronically snoop on me might constitute a Canadian Human Rights Violation. And as appealing as a six year case in order to have some micro-manager slapped on the wrists sounds (not), I have better things to do. Well, actually I don’t, but I will try to find some.

I cheered myself up this week by figuring out the last conversation I have had with someone who wanted to talk to me who I wasn’t paying. No I’m not talking phone sex, I mean a conversation not with a home care worker, or doctor or someone selling me coffee. If you exclude Linda it has been around eight months I think. So I decided to end the day by making a music video of what was a happy time for me – getting (renting) and riding my upright wheelchair bicycle/handcycle. Cycling that way is hard work but comparing to a wheelchair, it really grooves (as does my tie-dye top). Now that my shoulder is all screwed up, those days seem even further away. In the same way people tell me weekly, “I don’t know how you stand being disabled” (because it was obviously a career choice or something like that, I just must have missed checking “University Professor” and ticked the box below it – darn it!). When my neighbor asked how things were and I told them about the tendonitis, they said, “I always though you should have an electric wheelchair anyway, why push yourself with all that effort.” Which depressed me pretty bad: yeah, why bother trying, apparently everyone else has already written me off. Anyway, if you waded through this depressing post you can watch the vid – which has very upbeat music since I timed the whole thing (took me hours) to hit the beats for the pics and arm movements; and you know what, fuck it, my life IS heroic, and will continue to be so as long as I see fit (see, now the feminists AND people with disabilities can hate me).

Tuesday, September 11, 2007

Pain plus Linda gives me 'the look' and I still wanna date!

This was a particularly crud day, which ended with me trying to cheer myself up by telling Linda I was going to go dating next week with another woman. Which wasn’t too surprising since I had woken her up a few days earlier to ask her how she would feel if I started dating again. More on that later.

But after a week of constant pain and loss of function for my right arm, I started this morning at the Physiotherapist. She told me that I have tendonitis in my right shoulder which will take six weeks to heal and that I should not wheel up any hills (right). I asked her about boxing on Thursday but she had this funny face and started laughing. Then she did some laser to my shoulder and told me I had to do this particular position I call the “high beam” – because you pull your shoulders back which throws your breasts into high profile. It is best done with a low cut top and lettering across your boobs “Why look at my face?” Apparently it’s not slutty, but therapeutic and prescribed for me. I negotiated with the PT to ‘fix me’ before the end of the month because I have been looking forward all summer to doing the Breast Cancer 5K. My previous PT said it was impossible for me to do it; I think she might have meant “impossible to do and not damage yourself” which for someone like me is not actually the same phrase. I am doing that 5K.

As the day wore on, I realized the implications of having this bum shoulder. 1) Not able to wheel any distances or uphill 2) Probably shouldn’t be using my wheelchair hand-cycle 3) have to drop out of boxing, which with its three week break means it is has been a month since I have had any human interaction 4) Still in pain 5) Have to have someone push and hold my shoulders down several times a day and 6) have to buy a left handed mouse for the computer. On the upside: high beams.

Oh yeah, plus I have to go to a PT who specializes in Neuro patients and that is $50 a week I don’t have. I say “I” but really that is Linda who has to pay. Nothing like the guilt of someone else having a harder life because I am still alive.

Then the Red Cross sent a letter at noon saying they want some of the equipment they loaned us back (the equipment we can’t afford to buy). Linda spends 1/3 of her earnings on keeping me breathing, mobile and out of pain. Quite honestly, knowing she could get a buy a condo with that money, I can’t really see how I compare – I don’t have equity, or strip lighting or sea views.

Yet somehow by evening I decided that I would spend my bi-week “allowance” by going on dates set up by OKCupid (which I was subscribed to before Zephyr, by the way – it is just I kept getting set up with lesbian necrophiliacs). To make sense of that last sentence, there is Zephyr over in Vancouver who has like four regular sexual partners and STILL goes on first dates. I don’t know where she gets her energy. So I woke up Linda last week at 2 am and asked her if she wanted a “polymophorious relationship?” (probably a late night made-up word)

“What’s that?” She asked groggily.

“I think it means we get to go dating other people: which you do anyway with your starbuck’s dates.”

“Those are ‘work meetings’” she said.

Yeah, I thought to myself, just like she had love e-mails from that Spanish tutor in the UK which she ‘claimed’ was a joke as he was gay.

Anyway, I asked her how she would feel if I asked her for some more money so I can go dating while she is off doing overtime at work. She gave the ‘the look.’

“That’s a no?” She gave me the ‘other’ look. Suck!

I’m just lonely. As I pointed out with her, she doesn’t have to worry since the last guy who was interested in me we threatened with a restraining order (truth!). And since I have some very big trust issues, the likelihood of my allowing someone to touch me is pretty slim. She laughed, agreed, and said no.


I think the dating has stuck in my mind to ward off the prospect of spending six more weeks alone in a house where the only people I see are home care workers. Home care workers have an odd view of the world, the one today talked about working for a ‘young guy” (who is 64!). Plus, to add insult to injury my Recreation PT called me to tell me she is back from vacation and wants to meet next week to ‘plan your activities for the fall.’ I don’t get it – exactly how many meetings do I need to have for her to actually, you know, organize for me to do something or meet someone other than her. Anyway, she doesn’t interest me date wise.

If you want to go on a “play date” or “work meeting” or whatever Linda calls them (what kind of “work meeting” have you heard of where you go on a walk in the woods? Or eat donuts together? Or go to Starbucks? Or out to lunch?) We can go dutch! Here are my basic requirements:

1) Probably female (or a male with minimal ‘creepy’ vibes).
2) Must not say stupid things about people with disabilities or in pain.
3) Advantageous if you don’t PMS the same day as me – unless you are the horny type of PMS gal.
4) Able to have conversation without using cartoon characters as your main source of authority.
5) Know stuff I don’t (I like to learn).
6) Like meeting face to face
7) Find me amusing, but not in that clinical “why hasn’t she been sectioned?” way.
8) Don’t throw stones at small animals or children
9) Don’t bring a shovel when you tell me “I want you to meet my previous sexual partners”
10) Let me listen to you.

I think that is a pretty reasonable list, and if our dates go bad, just remember, I’m sorry; It’s Linda who talks to the lawyers about the restraining orders so please try not to hate me (or send me creepy mail).

Oh yeah, and the day ended with an SCI ‘will to power’ dude putting up some comment claiming that I am ‘not really disabled' becuase i do boxing. Whatever. Can’t wait to see what tomorrow brings.

PS - If you don’t hear from me for a few days, it is because Linda has read this blog and I am in big trouble, or she read the blog and we are doing some hard

Monday, September 10, 2007

Threading, guys who wax their balls and new shoes.

I went this weekend and had my hair cut and had my eyebrows threaded. What is threading? It is like waxing but on speed. Linda did it first and she came out looking shell shocked. “How was it?”

“You know how the most painful part of my leg waxing is the shin?” she said.

I nodded.

“It’s worse than that.” (personally, I think Linda is odd in that her shins hurt more than her bikini line, which means I should probably be making love to her ankles)

They take a twisted thread, hold it in their teeth and then take out whole rows of hairs in one go. At first I was like, “Wow, is Linda a wimp.” But then she started getting into the core of the eyebrow where all the nerves are. OMG! It is like someone spiking 10 nerve endings simultaneously, and then doing that again and again every second. I must have turned totally white because Linda called out, “Try counting.” She does this if she thinks I might faint. Let’s just say that threading is not for people with high sympathetic nervous systems. Good points: It is done in three minutes. Bad points: It is done in three minutes.

The salon workers were saying, “you think that is painful, you should hear the women who get the upper lip done.” Aren’t these people supposed to be PROMOTING it?

Sorry guys who get the “back, crack and sack”, I don’t think threading will work for you. Actually when I heard that guys were getting the “back, crack and sack” waxed (which is back hair, bum hair and ball sack hair), it was the “sack” which caused the most curiosity. I know that women are considered kinda crazy for waxing (or feminist traitors, whichever) but the way guys go on and on about their genitals, how crazy are the ones who have hot wax dripped on them and then ripped off along with all their groin hair? Do they just love wearing speedos or something?

Anyway after that we went shoe shopping for Linda. I am a fan of Sketchers on the basis that a) they are advertised on the back of my shojo manga magazine and b) they fit well. At the store all the Sketchers above size 7.5 were gone, not a size 10 in sight. I asked why. The manager told me that they had a “back to school sale for three weeks.”

“Does that mean the younger female generation has bigger feet?”

The manager concurred. Then we had a debate about why all size 12’s seem to come in B (thin) because you would think that if your foot is size 12 MAYBE it is at least average width as well? At least for most people? In the UK I went to a store called Elephant Feet (which I assumed they named after realizing that if you COULD shop anywhere else but a store which called you an elephant you WOULD – seriously who calls a woman’s shoe store Elephant Feet?). But here in North America I can get size 12’s (that 44 for your Euro folks) easily down in Seattle.

My major gripe is that Mary Jane Flats, particularly the ones made by Demonia (with little skulls on them) are very good for wheelchair use, but are only made up to size 11. So grow younger generation grow! Thanks to them, I can get all my 17 year old clothes from Hot Topic. Of course it is a little embarrassing to get the fliers with your name on it saying “You’re headed back to school, here are some cool notebooks, backpacks and pencil cases!” But you know, I do need a new backpack.....

Saturday, September 08, 2007


This blog isn’t what it started out to be. And I lost a lot of readers because of that. When I got too ill to spend hours reading other’s blogs and commenting, see ya later reciprocal bloggers. I stopped writing about Epee; adios epee obsessed. I didn’t write LGBTQI or feminist stuff anymore (too tired to look at news-servers). And at some point, after losing most of my original readers, I decided that if I had to be sick, I would make it funny; my life as the theatre absurd.

When you have a very small window to the world, the things that crush that window hurt a great deal. I was hurt, I was tired, I had gone outside only four times unaccompanied in two weeks. That makes a person a little…frustrated. Things happened. I reacted. I plan on acting now instead.

So I am giving notice that there will be subtle (or perhaps not so subtle) changes to my writing. I appreciate the comments, I certainly do, but I have a chance to write about SOMETHING, and I’m not going to throw that away because on-line one liners get thousands of hits and I get a couple hundred. Hey, not a lot of people want to think about getting sick and fewer want to read about it. Being sick is taboo in our culture, and so is talking about it. And whatever I have doesn’t appear to be simple. Too bad, life is like that.

Some days I feel I am a monster; Linda said yesterday, “If your workers see you like this no wonder they are scared of you; I’m scared.” But I am still human, just experiencing things many humans don’t. A lot of people have it worse than me. Few of them write about it. I will. You want to know in detail what it is like to die, gasping for breath, a pit of fire in your chest like fire, pain so bad you pray to pass out. I try and tell you, particularly since I don’t die, even on days like Friday when I tried, fighting off the oxygen mask as my arms, then body grew limp. But as Linda so aptly puts it: “I just wait till you pass out and then put the mask on.” Oh, and that thing about how you can’t use your hands to stop the flow of oxygen to your brain to cause brain death because you pass out first: That’s true.

I may post a bit less frequently because I am working on a book. But I’ll try and write well enough that, if you chose, you can follow the whole ride, all the way to death if that is where this is going. Or to a very altered life. If you think I take all this change with grace and good humor, that I don’t want “my life” back (Whatever weird dream that happens to be that minute), you’re wrong. The sad truth is that there are a few life experiences that are almost impossible to replicate in writing. A month ago, the neurologist lead me to believe that I might, if we did enough tests, return to some sort of “normal” life; maybe one using a walker, but one where I am seen as more than Linda’s pet. On Thursday, that was taken away. That night, someone told me, “It’s not how long you live, but how you live your life that is important.” What a nice sentiment, eh? Me sitting up in my apartment sending out blessings or something? Fuckers. No offense, I want to RUN again. I went to a fencing competition AFTER I had been told that exercise pushed my heart to lethal levels; does that sound like a person at peace? Even in my fucking manual chair I push myself; faster, harder, knowing that I am shredding my muscles (think lifting a box of wet cardboard). And when the fever goes down and my muscles mend I go and do it again. There is no plan, no book you get, no inner calm. I am a fighter, so I fight.

There are thousands of people right now facing cancer, disease, disability, waking up in a hospital bed being told their legs won’t work any more, or maybe that a limb has just been amputated. I am sure there are thousands of ways that people find of coping. I will find my way, I will write about it.

End of transmission.

Friday, September 07, 2007

Apologies to those who have commented

A few things over the last couple weeks have brought to my attention that my writing is basically crap. I have found while removing my posts from the last month that the comments were being deleted as well. I meant no disrespect with that. I have appreciated every person who has left comments and they have meant a great deal to me. It is only the realization that the comments were being permanently deleted which made me stop deleting posts. I again apologize for eliminating the comments as it was unintentional.


Wednesday, September 05, 2007

Pulitzer Prize novel Middlesex on Intersex: Genius or Crap?

I read the novel Middlesex by Jeffrey Eugenides because, as I often do on various forums I visit, I had put a few facts down about intersex people in a discussion. I am not an expert on intersex conditions though I have friends with different intersex conditions, have read a few books, some articles and talked online in various specific intersex condition websites. But intersex, one of the most hidden and stigmatized medical conditions often gets people saying very odd and outlandish things, usually because the idea that gender identity might be separate from chromosomes is radical to them.
So when the topic gets to the point of calling intersex women “he/she’s” or “it” or “50/50 people” I step in an give a little rundown of what intersex is, what ambiguous genitalia is and what gender identity is. In this particular thread the immediate response was, “Have you read the book Middlesex, it is all about intersex?” I told them no, in the same way that I don’t go to Transamerica to find out accurate information about Transsexuals or to Wild Things to find out about bisexuals.

But then I saw the book at the library and thought, “Why not?” My opinion: greatest disappointment since “Muppets Take Manhattan.” Okay for those not up on medical understanding of gender here is a quick tour: gender identity seems to be pretty much hardwired for most people, and that might have to do with hormonal washes in fetal stage, no one really knows. What we do know is that, after about 30 years of saying “Environment produces gender” (and assigning people gender based on how a doctor felt that moment) that a large number of public suicides and gender reassignments have blown up that theory. Some intersex conditions require doctors to wait and see what gender identity emerges before doing “corrective” surgery. A few people with intersex conditions prefer to identify AS intersex but most view themselves as male or female; some conditions are only displayed at puberty, some might be found even later (CAIS is the most famous) when a woman finds that she is infertile because, she actually doesn’t have a uterus, just a vagina (and undeveloped recessed testes which are usually removed), and that she is an XY chromosome female. In a few cases doctors intervened but actually mixed up the conditions (so the more estrogen appeared the more androgen they gave the patient because they were sure the person was a male intersex person only to find out at 18 that oops! It was a female intersex condition.).

The book starts with the announcement that the narrator, Calliope was born as a girl but reborn as a boy and that they are intersex (though actually Eugenides uses the phrase Hermaphrodite which he later agreed not to use in book promotion AFTER the book was published and after the Intersex Society talked to him). That’s the last we see of Calliope for a few hundred pages. When Callie emerges it is as a very femme girl. Indeed, the author tends to overwrite the girl parts, so instead of “Callie picked up the phone” is it “I picked up my pink princess phone.” Which gave me the impression of the “wink, wink” form of journalism that is given when you read interviews of transitioned transsexual women where the interview might be about the person as a filmmaker but starts with two paragraphs of their shoes, their clothes, their voice, their feminine appearance, the whole: she seems very female doesn’t she (wink, wink).

I kept reading and after a few dress up and girl trip scenes I thought, “Well, if the author plans to make an assertion for male gender identity, I hope it comes soon.” Actually, it never came. Indeed, Callie later says (page 479), “Unlike other so-called male pseudo-hermaphrodites…I never felt out of place being a girl.” Okay? Then why the fuck is this book asserting Callie is a guy? That word: fuck. Continuing: “Desire made me cross over to the other side,” So yes, what we get are a bunch of girl on girl crushes from the young Callie. Which at first I thought, “Cool!” But later realized that the author was setting up the old lesbian line, “What she really wants to be is a man.” Indeed the author’s entire reasoning of Callie as a male is that she likes females. That and the fact her genitals are different (but appearing female for 14 years). The clincher is when she has sex at 15 with the brother of the girl she has a crush with and IT HURTS. She looks back as the narrator and is amazed at her naivety that she didn’t realize at the time she was a man. Sorry every female who had teenage sex for the first time and it hurt, you are officially now a GUY, double that if you are attracted to girls.

I found out that the author Eugenides didn’t talk to any intersex people or organizations before writing the book (no shit!). But, partially on the back of the intersex narrator, the book won the Pulitzer Prize. In the book, with about 40 pages of 500+ to go Callie goes to a doctor and her intersex condition is found. A week long evaluation is done on her gender behaviour, her speech patterns, her mannerism, interests, friends, etc and it is decided that Callie is gender identity female and corrective surgery is planned. Callie is left in a room with the report and find she has an undersized penis with urethra at the base. Suddenly all becomes clear: Penis+loving women=gender identity of male. Though as Cal states while a “male”, (page 492) “She thought I was okay. Not a real man at all. Which I felt was pretty much right.” In contrast to the over the top femme descriptions of Callie, what we get from Cal is that he bought a suit. With Callie we get descriptions of girlfriend interactions, range of emotions, facial and hand gestures, clothing likes and dislikes, with Cal: bought a suit, wore it. I concluded that the author was male assumptive, in that they were so used to the male condition it needed no description. I was interested in this because on a lesbian forum we had recently discussed why some lesbians get mistaken as men; so we examined appearance, gait, speech pattern, word, body space, hand guestures, space usage, posture, distance from person of the same and opposite sex and other aspects. None of these appeared in this book. Indeed one of the comments which indicated the author knew, as far as I could tell, NOTHING about gender identity in North American society was the statement on returning home that, (page 520), “contrary to popular opinion, gender was not that important.” What a comfort that must be to the dozen to 25+ transsexuals murdered each year in North America, or the lesbian who had to leave Alaska because her gender presentation caused her such antagonism and hassle in something as simple as using the public restroom.

But the book won the Pulitzer prize. Maybe it wasn’t for the bad representation of intersex but for the Greek American family who was openly racist against blacks and practiced incest. I am sure that was a positive boost for understanding of Greek culture. Though, Middlesex follows in the steps of those who dare speak (in total ignorance) about LGBT people and win awards, like the film Monster, whose actress was praised for how horrid she had made herself look in order for people to recognize her as a lesbian (there seems to be some Hollywood acting rule that if you have to suffer in a film by NOT being one of the super beautiful people, you deserve an award for it). Anyway, I am pretty glad that Monster taught the world all about lesbians; we’re ugly and we kill people who look at our girlfriend. Or the awards given regarding Transamerica for Felicity Huffman for teaching us that transsexuals are ugly and kinda dysfunctional. Gays do slightly better; they are just having secret love affairs in Brokeback Mountain or dying in a kind, peaceful and out of sight way in Philadelphia (Seriously, you want to see what AIDS lesions look like, watch Silverlake Life).

I did it, I read it, I was left feeling robbed: Give me my time back. Let an intersex woman be a lesbian for goodness sakes. At the CAIS site I found that intersex women with CAIS are lesbians in the same percentage: 6-10%. Sorry, I took up all that time just to tell you a book sucks, but on the bright side, this is two pages long, and Middlesex is 529 pages long. Ug!