Monday, June 30, 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.

Sunday, June 29, 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.

Friday, June 27, 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.

Wednesday, June 25, 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?

Tuesday, June 24, 2008

Pain day: Beth has a baby, and learns to breath through the contractions

I have next to nothing to post today because I am so distracted by the overwhelming pain. My God! The pain last night was one of those fever nights you pray never happens again. And this morning, my plans of sleeping in to rest were broken because I kept waking up every 10-15 minutes with more and more pain until I gave up and got up.

Finally, half an hour later, I figured it out. I took my pain pill 30 minutes early, which lasts for 4 hours and then re-upped it so at 7 and a half hours of sleep I was back in full pain. Should have just taken another pill but then extreme pain not the best time for doing higher math like....addition and subtraction. I do remember waking in the night and begging for a pain pill only to be told I had been given them 50 minutes earlier. And going, “Is there ANYTHING ELSE I can have?” Which yes, sounds either like a junkie who is jonesing for a fix or someone in pain pretty desperate (or both?).

Of course, I can hardly spend such a great deal of time yesterday talking about how STUPID I was and how DANGEROUS it was and how I PUSHED LIMITS and how I was in intense pain but I CHOSE it and then expect people to be all teary eyed today. So I guess I will get a bunch of, “I told you so!” comments, or “Well this should teach you.” Which won’t, just will teach me that the world is full of hard callused people. (BLAH! So there!)

I mean women who chose pregnancy are knowing they will pay the price but they get LOTS of sympathy for the horrific number of hours of labor they go through (pick a number, and some woman within earshot has done it. Seriously, I had a friend who was pregnant and we couldn’t sit in a coffee shop without getting stories of breach births after 36 hours of labor, or how after 17 hours of labor and so much bleeding the woman needed transfusion to keep from dying, etc….and then the stories all finish with, “You look so rosy!” or “Aren’t you lucky!” Even though you see the evil gleam of a horrid story coming with the, “This is your first isn’t it?”).

Actually that is a good analogy because often women who become pregnant get to that state by ACCIDENT. No planning whatsoever! At least I had a plan.

Someone (Lene!) just called me and when I told her I couldn’t talk because I was in too much pain she was all, (in a sarcastic voice), “Oh poor baby, how could that have happened?” See, exactly what I was talking about. Like NO ONE who reads here has ever done the "Oh, I'm sure it won't hurt THAT bad tomorrow" along with "I'll only be out a short time, I'm sure I won't need the suntan lotion!" (You wait, I'll be gloating from my air conditioned bubble life)

Anyway, I am just saying that my pain got so bad and incapacitated me to the point that when my care worker came I was actually screaming.

See, my postcard project had gotten muddled and I needed to sort the papers into a pile for stickers, a pile for postcards sorted, those unsorted and my mail received so that I could reply to it. However, stretching my arm or even leaning over, or just typing got me to the point where I suddenly screamed from the sharp intense pain which was a mix between someone ripping out part of my spine and someone stabbing it over and over.

My care worker turned my chair around and stopped me from working on the floor. So I was like, “Well, if I sort papers up here it won’t AHHHHHHHHHHHHHHH!” She was all pushing my head back and saying in that older sister way: “No! Just SIT THERE.”

THEN I start getting a lecture that she is noticing that I am not “breathing through the pain.” And how that helps and I am not helping myself by not breathing. Apparently I missed the Lamaze Class for disability. I said that it is hard when you have the pain of someone stabbing you with an ice pick in your spinal column it kind of is "AUUUHHHHH" and freezing instead of knowing to “breath through it.”

She said it helps, in this very definative way. Which is also what Linda says, "Breath through it, just breathe through it." Did they get the class and I didn't? Anyway, I had run out of pain pills and she went to the kitchen to get one. I was sitting still when another couple stabs hit and I screamed and as she came in the room I screamed again but then did little puffs of air, with a sort of grimace and a look right at her which said, “Oh yes this is SO much better now that I am breathing.”

She had to put the pill in my mouth and she told me while I tried not to scream as it started to kick in that I was her only client who actually was in so much pain they screamed.

I said that seemed strange and asked her why she thought that was. And she said, her other clients didn’t go off in racing chairs by themselves for over an hour but did ‘disability things’ like watching TV, or looking at plants. Fine. I tend to think that going off and doing stupid things which often end up in pain to demonstrate you are still as able to make as impetuous decision as when able bodied IS a disability thing.

So I got the labour and the breathing of pregnancy, only thankfully no actual baby emerged from my spinal column (cause that’s just creepy) - well just my 'pain baby'. I also have now one MORE person who is physically stopping me from doing things. Just because I have this habit of doing something, screaming from pain, waiting a few seconds, noticing the pain hasn’t been there for at least 10 seconds and then try to continue what I was doing…and scream from pain (continue the cycle over and over until I pass out). So that list is now Linda, Cheryl, Maggie (who will even sit atop me to stop me from moving), and now my day time care giver.

After she left I did some computer work and then started feeling bad, really really bad. Much like when I used to push myself really hard and got very, very nauseous and kind of “out there”. I kept taking my BP becuase I thought I was having a stroke maybe, because I was dropping everything, including the phone where Linda was saying, "Go to bed right now, do not pass GO, do not collect $200!" Plus I couldn't focus my eyes.

So I went and lay down. But I was still so awful feeling that I had to lie there for an hour in order to get WELL enough so that I could sleep. That’s how crappy I was.

And the thing is that I did NOTHING to deserve this (stop laughing!). I know there was yesterday (I expected SOME pain, not the entire boatload!) and yes, after I got up so early I did get dressed and decide to go wheeling in my day chair on the premise that “After SO MUCH pain, no matter how much I wheel now, it can’t feel any worse!” Which seemed really good logic at the time. I went down into the village and got some movies, of which I have watched….zero. Why? Because I feel so crap. But now I will try because I got up from my nap and Linda had just arrived home. Admittedly, it turns out that wheeling lots the day after doing something which makes wheeling pain doesn’t just get lumped into the previous general pain, it might produce even more.

So, I am like a human public service warning for people in wheelchairs. Don’t be like Beth! Wheel smart! So you won’t have to lie for an hour feeling like you are going to puke, staring at the wall, only to finally feel good enough to go to sleep but your neighbors have now come home and are having sex on the opposite side of that wall.

When I am feeling crappy and desperately want to sleep, I do NOT want to hear sex. In fact, I will go so far as to say I HATE sex at some points (that being one of them). I wanted to bang on the wall and yell, “Cripple here needing sleep, go have a cold shower” but that would have meant getting out of the bed, so I was helpless before this auditory onslaught of squeaks, laughter and the patter of people running around the room (?????).

So that was my day, pretty much wanting to say “Hey, enough pain already, I feel in control of my life so lets tone down the pain a little?” The BAD news is that it isn’t the day after I exercise when I really crash, it is the second day. Today was just “pain day” while tomorrow is “rag doll, siezure and weird funky ‘can she stay alive’ day” Oh Joy!

Please at least TRY to sound sympathetic.

Monday, June 23, 2008


I did something today both incredibly dangerous and stupid; something Linda and Cheryl and even I agreed I would never do.

Saturday and Yesterday I felt my life change forever.

Saturday I was on a ship, the Coho Ferry, lying down, breathing, and still not able to convert enough oxygen to sustain my life (I was de-compensating). That what it means when your lips and fingers turn blue, and that process doesn’t stop there, but goes on until your nose and your fingers are black, until you slip into a coma to try and preserve your brain unless you have oxygen.

I was lucky. The ferry had oxygen, and an EMT. Still, he wanted the boat to be met by an ambulance and EMT’s which would carry me off the ship.

An event like that left me scared, and looking into a future where my life was to be determined by perimeter of the 50 feet of tubing from my oxygen converter. Because when three different EMT’s work on you, or watch over you for 8 hours to try and get you home, conscious or at least alive, then popping out for a weekend trip… does that happen? Even the most mundane trip with Linda to help get groceries would need to be done with the reserves of oxygen lest I pass whatever invisable threshold of destruction from my disease (MSA/AAN), some threshold of energy depletion which turns my compensating body into a DE-compensating body. And then I would have to be rushed home, or to a hospital. That is the future, and if anything is likely to change, it will be toward needing oxygen 24/7.

That reality crushed me. Crushed my attempt at viewing myself as an autonomous person.

Last night was one of moaning and pain pills every 3.5 hours and this morning I woke to even MORE pain than the day before. Great!

I sat in The Chair and didn’t know what to do. I was still in shock and it hurt to breath. Things like watching a DVD or doing postcards seemed pointless; seemed so far away from where I was.

I looked outside at it was overcast but without much of a breeze. The last two weeks, I had planned, and tried to go out in my racing wheelchair to train. Becuase there is an upcoming 10K using the SAME course as the TC 10K. But I was never well enough to do the training. Cheryl and Linda had agreed that because of the nature of the wheelchair it was far too dangerous for me to ever do alone. I had agreed.

First, I have NO WAY in the racing wheelchair of reaching the oxygen canister by myself, in fact the chair is made so you HAVE to lean forward to not tip over backwards. Second, I am in a chair two inches tighter than my tightest chair, so there is no place to store anything, from a cold pack to any form of liquids; particularly the liquids that keep my BP stabilized. So to go outside would mean leaving my day wheelchair behind. That means I would HAVE to come back up the STEEP hill, though traffic, all in the racing wheelchair; all things I had never done before. To do it the first time, alone, in daytime traffic: STUPID, RISKY, DANGEROUS.

I thought, “It looks like a good day to go training.”

I thought, “It would probably be better to spending the day resting. Besides, training by myself is really risky." I paused, "AND Linda would kick my butt.”

I thought, “But, I’ve thought out the route and while it might be risky, it is also, I think, possible.”


I thought, “When are you, Elizabeth going to decide to do SOMETHING?”

I thought, "Does it have to be this? This is riskier than the trip to Port Angeles and look what happened there!"


I went and had my shower. My home care arrived at 11:30 to give me my shower. I told her, I’m planning something which means I will leave at 1:00, half an hour early. I told her I was going for a training run, all the way to the breakwater, then past the cemetery again and up the big hill, five big long hills and and somewhere between 7-9 km. I hadn’t eaten yesterday since lunch, hadn’t eaten that day. I drank two Gatorade.

My caregiver knew Linda would kick my ass. She was curious to see what happened. I got the helmet and dressed for training. I got the care giver to put on the suntan lotion and put the bike lockup key in the pocket in my top.

I when to the bike storage, pulled out the racing wheelchair, transferred and locked myself down. I had forgotten my helmet and my caregiver went back and got it. And then I was alone, either to continue, without liquids and with five hills before I could return or I wasn’t.

I started out. I had to go through traffic. They weren’t patient. I whizzed down through Cook street village then stopped outside to adjust my MP3 earpiece (gotta get up those hills best I can, I only use one ear piece so make sure I can hear what is going on around me). Then I started up the hill of Cook street (I guess six hills, missed counting this one) toward Dallas Road.

It was slow at first, and as it wasn’t Sunday there wasn’t anyone looking or waving, just trucks trying to pass, or people taking shortcuts, as Dallas Road has no traffic lights. I passed mile zero, trying to concentrate on staying low, on using the punch of the downstroke and add an upstroke pull to it as well. My thigh bone from Saturday started to hurt. Nothing to do, my feet were tied down and I don’t know why it was hurting, just the vibrators from the road and the frame made it ache so bad I wanted to claw something. I went down to the breakwater, did the full distance. At the end of the parking for the breakwater I tried to turn 180 degrees, a u-turn as practice for the race turn points. Didn’t work. I ended up half on the sidewalk. A elderly woman asked if I needed help. She couldn’t lift my front wheel. I backed myself off the side walk and leaned back enough I was balanced on my back wheel with my front one in the air. I finished the turn that way. There are no pictures. No place to put a camera for one; no one to take them for another.

Now it was a long 1.5 to 2 km of uphill, punch and pull and punch again, punch and pull, and don’t stop the rhythm no matter how tired you get. Just keep it going. Lonely road. The clouds had burned off and now it was blue skies and sun beating on my back. I dare not stop or slow lest I overheat. God, there really is acid in my right thigh bone. I keep going, over the top of the hill, and down, passing Cook street and down the hill, whizzing past the cemetery as two boys try to race me, running as hard as they can, but I pass them. Then I am going up the hill.

I notice I am not as fast overall as the last time I went training. Not as fast. But I was out training.

I had taped the knuckles which bled last time I trained, but I could tell they were getting a pounding. Punch and pull, punch and pull. The feeling in the knuckles would go away soon. I crested the hill above the cemetery, and though I planned on stopping, I even looked over at the bench I planned on pulling myself out of the wheelchair to sit and rest on. Instead I did a U-turn, a little better this time and went right back down the hill past the cemetery and and attacked the giant hill on the other side. Punch and pull. I tried not to think, I tried not to listen to the pain in my shoulders, in my arms, or worse in the bone of my thigh. I just punched and pulled, I stared at the road, I sometimes tapped the micro adjuster. I couldn't even tell what music was playing. I had to get up that hill. "Come on, come on!" I said to myself between gasps. I said that over 100 times going up hills, forcing myself on flats or inclines to pick up the pace. "Come on Elizabeth, come on!"

The cars and trucks roared by, I looked up at the people inside, they didn't even look down. But I made it to Cook street, and one last time I bent my body as far as it would go, bent like those ex-ballet dancers who seemed in boxing class stretching to be far too flexible. I had my hands far past my feet, my back low and head so my chin touched the frame. My hands in the gloves, stretched far ahead had the thumbs hooked into the push steering.

My thigh bone hurt so bad I wanted out. At Cook Street Village I stopped by the bus stop. One man looked at me briefly but then continued to check the bus schedule. It only took 10 seconds to realize there was no out, only on. So I angled back out, checked over my shoulder and push, push. Too tired to pull now, just push and push. I was on the hill up Cook Street. On the opposite sidewalk was a woman with a walker. We raced in slow motion. I refused to use my thumbs to hook the spokes to pull me up. I would finish this as I had done the training, punch the rims.

In truth, in my planning, I did not see how at the end of training, I could make it up this hill which I could do in my day chair only a few inches at a time. It was too steep and I would be too tired. This was the grey hole in my planning. I punched, and looked over to the woman with white hair on the walker. She yelled some encouragement but I couldn't hear it above traffic. She smiled. I smiled back and then lowered my head. "Come on Elizabeth!" I punch, and punch until I overtook the walker. She grinned and waved.

At the top of the hill I turned and then turned again, one last hill, away from traffic. Finally, at last, the final turn into my driveway, 1 hour and 11 minutes after the first punch out onto the road. When I saw the bike lockup doorway at the far end of the drive, I started crying. Little sobs bursting out of me as I steered around the speed bumps. And tears falling down, leaving wet ponds and imprints on my joggers. I pulled myself out of the racing chair and back into my day chair crying the whole time, sometime silently, sometime not.

It wasn’t the pain. It was the emotion. I had willing chosen risk again, forced myself and won. A dam of emotional release let loose; I had part of my life back. That was worth crying over. I did not let my body or recent medical history dictate who I was going to be.

I cried because my world was bigger than fifty feet of tubing from an oxygen concentrator.

I could hardly wheel, because my arms were twitching so badly, my knuckles bloody from the punch and pull, even through the medical tape. My hands weren’t functional, shaking visibly in a tremor so wide, it was a quarter inch. I dropped everything. It took a long time to get the door open. I was smiling, I was crying, I was in pain, incredible back and body pain.

Upstairs, I had another Gatorade and tried to eat a sandwich Linda made. I dropped it. Ate it anyway with both hands and forearms holding it. I wrote a couple emails saying, “I did something stupid, but I think I am getting better!”

Then I took my blood pressure and becuase of what I saw I waited five minutes and took it again. My diastolic was so high (over 100) and my systolic higher along with so many erratic heart beats (over 25%) I thought that I was sure to have a TIA. I might have one just if I sneezed. I tried to write a synopsis on the comments from yesterday in case I lost my memory. But then I erased it. I couldn’t make a synopsis of pushing myself for three minutes longer than my Times Colonist 10K, but without Gatorade or Oxygen, without any cooling vest or cooling device of any kind. I couldn't make a synopsis of what that meant to me.

My body was shaking, from the heart erratic and the pain. And yet, I was smiling, because I had a SHITLOAD of endorphins running though me! So why, 7 hours later am I still smiling, even though my painkillers can’t/aren't taking the edge off the muscle pain I feel?

I have hope again. I am living. Yes, I was in pain, and I am in pain but pain I had planned, pain I chose. And yes, things could have gone badly. I could be in the hospital. Linda told me after she found out that the oxygen bottle I took was empty, all the full ones were in her van at work (????!!!!!!). So much for my slight safety back up.

I have entered to race the Hudson Bay Company Canada Day 10K. Unless hospitalized, I will be up at the very front of the race in my retro old racing chair carrying an extra 10 lbs of oxygen and cold break packs. I will be an official wheelchair racer.

It may/will likely be the last 10K I will do. I am getting slower. Like boxing, I am not building muscles, not getting reserves. But I plan to finish it. If I have to dump water over my head and get out of the racing wheelchair and lie down and rest and then be poured in to do a few more km and rest again, I will finish the 10K if it is possible for this human. Maybe I will finish it even if it isn’t considered reasonably possible for this human. Did you see that? That was hope AND sass!

I want to live for a week, I want to live until I can race that 10K. I will race it for me and for all neuro degenerative diseases, fatigue and pain chronic conditions, Lupus, Lymes, all of them ride with me, all up at the front with the wheelchair racers: because stability and consistency are not the defining aspect of disability, nor are they going to be the limits of the wheelchair racers that day.

After getting back I was sent an email. I had wanted to enter a photo contest. My lack of telling days and time meant I missed the finishing date. The photo contest was from the paraplegic society (I am a member). The emailed me to tell me it had NOT finished. They sent me a reminder to send in my pictures of “The view from the chair” to be in the contest. What is this, TWO things to look forward to in one day?

My hands were non functional for two hours. I took the BIG pain relief pills, over 100 mg of pure Tramadol, synthetic opiate. Didn’t help AT ALL. I was in pain from every nerve left in my arms that still existed. And the rest of my body, my back, all complaining. I still couldn’t hold my hands still or use them. Took the strongest muscle relaxants I had, the pill fell on the floor. So did I, and I licked it up.

I took it and I lay down. My body and bed shook from the WHUMP, WHUMP, WHUMP of my heart beats. It seems I had done something a little foolish, and now I was going to pay the price. It seems I had done something a little wonderful and now I would pay the price.

I have decided. I am going back to Port Angeles, and I am going to the Hoh rainforest. This was was where we originally intended to go on Saturday, but I was too weak for the transport out there so we went to Hurricane Ridge. But it turned out I was too weak for that too.

I don't know how, but I will figure out how to go to the Hoh, and then I will do it. I will go back, not to hurricane ridge but to the Hoh Rainforest and I will take my wheelchair out on the trails. This is my will. I have, in all this zeal of making decisions, taken the small decision that trying to do go to the Hoh BEFORE doing the HBC 10K race might be pushing it a little. Like playing Russian roulette with an automatic bullet clip would ‘pushing it a little.’ I’m not stupid (no laughing!). I’m just a little high on not being fate’s kick doll.

The 10K will only be the aftermath. Today, going out, knowing I was weak, knowing I had not trained in over two weeks, refusing to alter the training route I had planned and decided on three weeks ago (Linda thought it EXTREME then), doing it to the last punch on wheel rim and then coming home. That was the Victory. I faced my depression, my pain, my fears (which were many) and I decided to act, to get ready and to go down to that bike room. I made my own dream into a reality, even if I had to play the odds to do it. And that is why I cried. And that is why I smile even though every letter I type just adds more pain. And I will be in pain for a while (a long while?).

I asked you to watch and witness, and now I ask for you to rejoice with me. Because while going out alone today was a VERY STUPID thing to do…I made it. And now there is balance. Now there are TWO possibilities. One, that my plans and dreams will be wrecked, and that I will again have a DE-compensating body, unable to sustain my own life, trapped and bound to the hospital bed and my oxygen until whatever horrid fucked up central nervous system part of my melting brain decides to recover. Or ANOTHER POSSIBILITY: that my plan might work, that I will have to pay a price, surely, but that I can still MAKE plans, because as long as I am willing to pay that price, it doesn’t ALWAYS have to be pain spent alone, while the world spins on.

So now, there is the chance, the possibility of looking forward to things, and this time that meant coming home 1 hour and 11 minutes of pushing myself as hard as I could and making it. So what if three of my fingers turned a little black at the tips after that? That’s why there are oxygen concentrators waiting for us at home, right?

My life isn’t my own, I cannot will-to-power how I want things to go. I know that. But my decisions, my dreams are my own again. And that I did not have yesterday.

I still don’t know how to go on in the long term (long term for me means ‘two months’), but I’m smiling again. I’m crying because I WON. And I know how to live for the next week or two.

(I WON!)

It’s a start.

Sunday, June 22, 2008

How do you go on?

When I take risks and succeed, everyone is happy about it, me greatest of all. When I take risks and they fail, everyone walks away, silent. I cannot walk away.

The time it will take you to read this post will be 1/30th of the time I spent in full body seizures yesterday. It is less than 1/100th of the time I spent in pain, incapable of converting enough oxygen, unstable, perhaps unlivable in the body that had those seizures. It is less than 1/100th of the time today I spent as the cost, recovering for what I hoped was to be 8 hours yesterday as a fun sentient human being with friends, but ended up as only 4 hours of time.

That is what is on the table, rationality, the ability to speak, to be understood, and to live without medical intervention or at all. It started with muscle spasms. Independent spasms in my right quad which I was later to find out were indicative of a lack of oxygen. And then, up on a ridge with a temperature close to zero, with snow on the ground and gusts up to 40 miles per hour, I began to burn. I was a de-compensating body; unable to convert oxygen in my lungs, unable to stabilize my heart and my heat. Every comment, joke and story I told in the car on the way down took me further away from humanity, falling down the blue well, as my nails and then lips turned blue. The pain in my bones, in my thigh increased. By the time we got to a house, it felt that there was a cancer in my thigh bone, burning with acid. I would have willingly broken that bone with the muscles in my leg, which were starting to spasm as well, if it would stop the pain. It was too much to sit, I had to lie down.

As the muscles in my body lost oxygen and nerve conduction, they weakened. My soft palette fell across my throat blocking my airway, so when I opened my eyes from my daze, while I might now have the desire to breath, I could not. It was like someone holding their hands forcibly closing my nose and mouth. As each second went by, I could not communicate, I could not breath, I could only feel the tension in my throat as the frenzy to breath grew stronger. My arms, what movement they could make, flailed as they tired to catch or find something to pull myself upward, a task that was too difficult for my weakened muscles. I think I managed to hook Cheryl’s face and as each second of burning in my chest, in my heart, screaming for oxygen, she understood, and lifted my head enough that I could suck in air.

This was to be one of the milder incidents that day. Or that hour or more spent on the floor. I screamed during that time, more than once, I believe. But most of the time I wasn’t there (I was away in the darkness) and when I was. There is no horror film that scares me because I was surrounded by three people who cared for me, who were TRYING to understand me, and couldn’t understand the universal message I was saying over and over again; I said it until I couldn’t speak, I begged it with my eyes and even tried to write it and yet, they just looked on with friendly puzzlement, while I tried yet again to say: “Help!”, “Help me!”, “Help!”

I was helpless, in agony and though people were there, completely alone. They were a foot or more away and yet no one could hear my cry, my whisper, my BEGGING: ‘Help’

It went on and on, my only relief was passing out, from which I was brought back time and again because I had stopped breathing and if I didn’t breath I wouldn’t live. If I didn’t live I wouldn’t hurt. I was fatigued from attempting to live. But then the rigor started.

I didn’t know what it was but just that “something” was happening, from my dead feet up, my muscles were seizing, locked in rigor, not slow, but not quick either. I don’t know if the rigor was done over minutes or seconds, I just remember feeling it hit my quads and then my lower abdomen. I remember Maggie saying something like, “Try to move her legs, try to bend them” and someone saying, “It’s already here, they’re totally locked.” And I couldn’t feel my hands, only as it crept upward and I lay there wondering what happens when it his my diaphragm? My ribs? Am I going to drown, to suffocate in a body that has become my casket. Linda said that it went all the way up to my neck. I couldn’t move anything but my head a little.

I started to cry and say no, no. They could understand me now. What was wrong? I couldn’t bring myself to say it, because like the creeping of the rigor I was feeling the same creeping over my bladder control. I was going to pee, piss through my clothes, on the carpet, everywhere, in someone else’s house. I was a guest, and I was going to lose bladder control. And now I had to say it out loud. It was, to me, the ultimate act of loss of control and humiliation, to lay there, feeling the urgency rise, as the barriers slipped away, unable to move, trapped in my body. Even after I left, I felt ashamed to talk to the people there, the person who owned the house.

In the end, I didn’t wash the floor with pee, or my only jeans, and panties. It stopped, though I don’t know why, and the rigidity started to loosen. The seizures weren’t over, but that one was.

When it was done, and I was done, broken but still conscious, I was put to bed. Put to bed while the rest of world kept spinning. Linda, Maggie and Cheryl talked, chatted; the very simple act that I wanted, the sitting around talking that I risked it all for. It went on without me. I had been the creature on the floor, and now I was asleep and life rolled on. I was woken in time to be driven to the boat.

I took a motion sickness pill. A porter pushed me up the ramps. I talked to the couple next to us. The crossing was rough, and though I had plans of writing the blog there, whatever small reserves I had created were gone, and I had to lie down again. Linda was elsewhere and the Purser asked if there anything he could do; I said that my oxygen was now empty, did the ship have any? He needed to get the EMT trained person, who happened to be the helmsman, second in command, who put me on oxygen without questions after seeing the blue of my lips. I guess another hour passed, I know I lost my speech after another seizure, and finger-spelled to Linda, who had returned. Then there was another seizure. The helmsman who was also a volunteer firefighter wrote so just Linda could see, did she want the EMT’s/Ambulance called to meet the ship at dock? Linda told him our car was across the street and we had another oxygen bottle in it. They wanted to give us the oxygen bottle. Linda assured him we could make it to the car.

I was able to be moved into the wheelchair by the porter and the helmsman came with us all the way down to customs, and Linda helped me to the van, which I could not transfer into unassisted.

This afternoon, I slept a long time and woke, again, with my right side paralyzed, having to knock and wait until Linda came. She was able to lift my legs over the bed, something I can no longer do, and with the one arm around her shoulder, I was lifted clear of the bed.

This is the real cost of trying to go and see friends for a day, only it wasn’t a day, as more than twice the time that day and three times the time today already spent in peril or recovery than I spent being a upright human being. This is what my hand looks like, my “good hand”, the one that isn’t paralyzed as I write this, I call it my zombie hand because, would YOU want this coming through the mailbox in your house with the groans and moans which cannot be understood as human speech? Because that is often how I sound in seizure, or afterwards. I am the THING of which horror films are made of.

So THAT was what the last two days were like. And yes there were a couple good hours and I have pictures of that, but I have no intention of cutting the good bits out to construct a story, like taking usable organs from a corpse. THIS is the story; that I took the same precautions I take normally and more and it failed, and now I am in pain. I am humiliated, I am alone. There is no look of defiance, there is fatigue, there is looking ahead and realizing that this is what “life” looks like, most likely from now on.

Linda and I talked about pupil checks during seizures and TIA’s and I told her that if one of my pupils is blown, or rigid, to not take me to the hospital. Because that would mean that there was enough blood on the brain for major brain damage and that the chances I would survive, and then pass the time of rehab to allow me to speak to her again before dying is slim.

But I am not dead. I mean, yesterday either enough oxygen wasn’t getting to my fingers or enough blood had pooled during the rigidity that I had black tips. My palm is a giant bruise. So while I may not have ALL my digits or limbs working, I am not dead. Which means that I go on, whether I desire it or not.

I just don’t know how. How do I apply for a job after yesterday? I am either having or recovering from a seizure every day now. The fact is that there may NEVER be a better, that this IS the better.

I am sure I am supposed say or it will be said to me, “Don’t give up!” Give up on what? There is no cure, there is no remission, there is just tomorrow. Even the helmsman on the ship knew that. I cannot go from point A to point B without medical assistance: to transport, to move, to eat, to breathe. Soon, I guess to excrete.

And maybe that wasn’t the “adventure” you came here to read about, but I can assure you, it is riveting watching EACH day another thing you thought was part of the automatic control in being human burned off, taken away.

Will I try again? I honestly don’t know. I used to go wheeling long distances but after being taken to hospital from here and there and having to have Linda pick me up from different places I learned that it just wasn’t worth it anymore. That wheeling down to the mall to get a Orange Julius by myself isn’t worth dying or worse, the 8 hours in the hospital before you are released to spend three days recovering at home.

Dying doesn’t scare me. Living scares me. Because everyone, even Linda, is very far away, on the other side, watching me break and scream instead of doing it. And then putting me to bed as she gets on with her life, her future, her job, her career, the excitement she has over a project that will be coming to pass in two years.

I am cared for, so that she can live, so that life goes on, while more and more, I am behind the glass, next to the air conditioner which keeps me conscious, and breathing. I see the blue sky but not the sun from where I live. Not the sun.

I guess now I’m not playing at being a goth, I’m living it. But people reach this part, and they go on, some have futures and some do not. I don’t know how to do that, to go on.

I have always hated that saying, “Whatever doesn’t kill you makes you stronger.” Which was said by a guy who lived with his mother. “Whatever doesn’t kill you leaves you with scars.” Lots of scars.

So how do I go on? There is no plan, no adventure up ahead. That was it: a month in the planning, and 36 hours of pain.

I don’t know. I think I am in what they call “recovery.” And if that doesn’t make interesting reading, or that isn’t the Elizabeth you have come to think you know, I have no apologies. If I am human, allowed in the classification of human, then I weep, I sob, I suffer, I mourn, I grieve. Don’t take that away from me, or walk away because I do it publicly.

My helplessness leaves you helpless too, I suffer and you can do nothing. I scream and you can do nothing. I cry for help and you do not understand. So it is not what you wanted. Witness it for me. Witness it and when you don’t know what to say, say that. If I can bear it, you can bear to watch it. Or you can leave, for a host of reasons. I wish I had that option. Believe me, I want off this ride more than anyone.

I’m asking, if I am a human, then as one human to another. Stay with me. Stop running and look. Maybe I will get up, maybe I will try again, maybe I will keep falling. I don’t know how to go on from here. I know what tomorrow brings, statistically, a TIA, pain, brain fog, fear, confusion. There is no hope here.

But still, stay and witness.

My day in America: the brief and medical version!

Okay, I can’t really talked about today because I was pushed off the Coho boat with the purser carrying the shipboard oxygen with me to Customs where the Canadian Customs’ officer said with confusion, “Are you ALL together?” No, they are just my medical support. So this is the BRIEF picture version of why I am telling you the whole story tomorrow, ‘kay? Arrived home 10 minutes to midnight.

Going. Took the 10:30 boat, getting ready to leave in a hour made me super nauseous and the boat was crowded to I needed and ice pack and lay down, when I wasn’t in the bathroom. By the time we arrived, I had my sass back.

We decided I was too weak to make it to the Hoh rainforest and back so picked up Maggie, had lunch at a Mexican restaurant and headed up to Hurricane Ridge. It is called because it is funnel of all the wind coming across the straits which goes up the mountain and then rips across, it was about 30-40 mph winds according to the rangers. This is why we all look like we are a) having the slicked-back hair look and b) look like we are on bowling team (it does doesn’t it?)

We ran into many deer which were all “Look at me! Look at me!” and let tourists approach. However, when the tourists got closer Cheryl and Maggie were rooting for the deer to attack them (apparently the most common park injury) and muttering, “Bite her, kick that woman from Wisconsin! Go on, bite her!” Remember this was their off hours time and not when they OFFICIALLY represent the ranger service

On the way down I went on oxygen because my lips were blue like my gloves blue and in Cheryl’s house was on floor and then seizure and other boring stuff for some time which ended with me in Cheryl’s bed (THE PLAN WORKED!) …..alone (DAMN!). I slept for an hour and a half.

We took the 9:45 pm boat back, I do the speaking of tongues and pain on the floor, then sleep while everyone has fun, get up in time to head to the boat. Well, I am fine but the crossing is rough and like a zodiac or car ride, my body has to absorb that shock of the up and down. It can’t, because apparently siezures and spasms are already quite tiring. So I lay down and the purser comes and I show him my fingers and he says it is actually my blue lips that are more disturbing (they were more the color of my gloves). So the purser gets the EMT, which happens to be the helmsman and I go on oxygen AGAIN (the ship’s oxygen because we ran out of ours) and have another seizure and the purser and the helmsman stay there. They are keeping me oxygen till the last second. And then I can barely hand transfer to the car, but here I am back again. I did have fun, sorta. I think I might do it different next time.

It is a bit disappointing to find out how small my travelling capacity is or how quickly I run into trouble. This does not bode well for San Fran trip. But will brainstorm between now and then. Right now I am going to sleep which will be followed by waking up in some sort of fatigue/pain I am guessing. Still, did the trip: too much travel time in ratio to fun though, will need to make it an overnighter next time. I just wanted to get out of the apartment!

I did wear the skull earrings though! The full day trip story tomorrow, I am sorry I can't write more. Because that last pic of me was me looking GOOD on the way back. And right now, one hand is actualy turning BLACK at the tips (Linda is a wee disturbed), so back on oxygen I GO!

Friday, June 20, 2008

Why to choose "Cripple" with your guidance counselor, some gifts, my day!

What is true love? True love is when your partner returns on a harbour plane from a secret government meeting yet still had time to find you jangly and complete skeleton earrings as a present! Ha, now I don't need to keep trying to find the Book and Bone Faire in this city. Here is what love looks like in our family.
Today was my, “I am in control and going to be a good person day!” The basis of that was that I like many of my friends was/am BURNED OUT. Why, becuase I keep pushing the envelope every day (push! push! push!) and not only does this result maybe in TIA’s (HIGHLY LIKELY) but also I can’t seem to wake up from my EARLY afternoon nap until 8:00 pm (or later). Now, when your partner starts to go to bed at 10:00 pm, that really sucks. See the original PLAN was to sleep 3:30-4:00. But there is always another phone call or thing to do, or just one more postcard, until it is 5:30 or 6:00. But today, today was DIFFERENT. For example, I went to bed only 30 minutes later than I planned on going to bed, the SECOND plan which said 4:30 (see there IS a PLAN, which says that if I sleep the same time every night and every afternoon I won’t need sleep aids or valium because I will grow naturally sleepy. If I ever kept to those times, I am sure the PLAN would work great).

I just woke up, 20 minutes ago with the right of my body frozen/paralyzed which means I had some sort of seizure while I was asleep and a tiny problem with my voice (slurry with a bit of Charlie Brown "Wa wawa wa WA WA!"). But you know, even though I had four DIFFERENT emergencies I did still go to bed a little after 5:00 today and woke up… ten minutes to eight. ARG!!!!

So just for the MANY poeople in high school who are contemplating putting “disabled” or “cripple” for their aspiration as a second choice after "beauty nail consultant" or "televangelist" on those “What do you want to do with your life?” high school guidance counselor forms (at our cult religious school they filled them in for you and THEN gave them to you), I just want to point out there ARE down sides. The major down side is Control.

You do not control the vertical or the horizontal and I’m not talking about the TV. Having a complex not-always-stable disability like me for instance which includes hyper-somnia, can mean while you go to bed, one day, because they shot a lot of electricity through you, and even if you are DEAD TIRED you can only sleep maybe 80 minutes, and that is with sedatives. While another day, unknown to yourself, because you are in extreme pain from doing your 30 minutes of boxing from yesterday, your body has created its OWN PLAN, which involves putting me in a near coma state to recover from…well, I guess ripping all those muscles. And maybe while sleeping I got hot and my neurons don’t fire or fire too much and so I sleep and sleep and then wake up paralyzed and MY plan of doing 4 postcards, and then some packing as well as blogging is in need of adjustment. See, my body doesn’t have email, or even post-it notes. I WISH it would leave a note on the bathroom mirror saying, “Hey Beth, you might feel a little punky now but tomorrow I thought I would take a 'fatigue day’ so don’t expect to like, MOVE tomorrow, and wait for your homecare to put you in The Chair”. Or another note saying, “Yeah, those endorphins feel good but I’m bored so I might decide to just crank the nerve ending stereo tonight because I’m having a party; hope the mind blowing pain for the next 18 hours doesn’t bother you too much!”

There are up sides. You get to meet cool people. And the computer becomes your friend, your VERY GOOD friend, well except today which was a ‘Bad Day’ due to small stoke earlier this week and I could not remember how to do certain things and kept thinking the ‘print’ button was the ‘save file’ button. Actually it might be a really bad day because after doing that twice I still DID’T get it. Just repeated incidents of hearing the printer warm up and suck in the paper and me going, “Fuck, NO! Fuck! Why do you keep doing this!?! Oh how do I stop you?”

Also I was unable to answer the question, “What would you like with your sandwich?” because it was ABSTRACT and there was no list, so I had to imagine what there would be (which is something post stroke that I can't do, not on BAD days), and I sat there for two minutes going, “Ah…..Ah……Ah……” while the Care worker is going, “That’s okay honey, having a hard day speaking are we.” When what I needed was her to bring things from the fridge until I could point at them because my brain would say, “We recognize this!” That’s really irritating too, when your care worker assumes you have one completely fucked up problem (like not being able to SPEAK), while you really have another completely fucked up problem, (like not being able to imagine abstract things, like what might be in a fridge, and what in this imaginary fridge would go well with a sandwich). Only since the response for both is to stare out and keep TRYING and going “Ahhh……AAAAAHHH…….ah………AAAHHH!” On a positive note I think of it as sort of disability minimalist theatre or my OWN version of Waiting for Godot, where I have reduced the dialogue even further!

Of course part of being late was a phone call from Beacon, my care giving staff, and this was an RN calling who is also the team administrator. Beacon has decided instead of using RN’s to assess the level of knowledge of the staff or to answer questions or do medical training, to use them as administrative managers instead. Anyway, she was getting back to me about a woman I sent home it seems on the 9th of June, which I told the scheduler I did on the 10th, and she reported that I had flagged this woman as a “do not send” (as in do not send back!), which was created on the 11th, so this RN wanted to know, what did I find that wasn’t satisfactory in the care of the person from the 11th? Now, the problem is that I cannot count sequentially or do time, like in the past. The day to me are like those bags you have for scrabble and you just put your hand in and pick out something. So most of today I thought was Wed. (which it turns out it isn’t). And people, like care givers say, “See you next week!” which to me sounds like, “Gorp do gobble de gorp, I AM GOING TO EAT YOUR CHILDREN, gorp de gobble gobble!” Okay I know they aren’t going to eat my children but they are going to get really peeved when I don’t expect them again or I go, “You’re here, already?”

So I am supposed to know about the 11th, or the 10th or 9th, except I don’t have any idea what day it is NOW. And I ask the RN what day it is and she assumes I am being cheeky and says, “This IS Elizabeth McClung isn’t it.” And I say, “I believe so.” And she wants to know what the DNS was (DNS turns out to be a “do not send” designation). So I still have no idea what day it is now, but I explain that they keep sending people over for overnighters who, while my file is very clear about the complexity of my condition, seem unable to understand that I have such a range of possible conditions and what they might do. So I repeated a whole conversation where the woman’s solution to my NOT BREATHING was to give me oxygen and when I made it clear that I was PASSED OUT and thus, not breathing at all, she asked “Give more oxygen?” like this was a game 20 questions: the home medical version. I told this RN, that I have an hour to assess if the person can read (twice they could not) since I have many powerful pills and if they can’t read, and I can’t speak…. (I was assured with the NEW training they were giving on ‘medication’ that they should soon identify their workers who can’t read). Or to give them my different conditions and some reactions and see if they have an idea of what to do. By the way, the answer to NOT BREATHING is “Call for assistance” or “Call 911” And I said I cannot GO to sleep if I do not get a clear rapport with the worker that they will be able to respond to my issues because when I signal for them it will be because a) I am in incredible pain, b) Some or part of my body is paralyzed, c) I am having a TIA, stoke, cannot breathe and/or need the bed raised or d) having something that I feel needs immediate transport to the hospital. So I asked if she could please, as TEAM LEAD, and the person following up the DNS, try to find people who would fit this criteria at which she immediately barked in a “Don’t make me discipline YOU!” voice that such was only taken care of by Scheduling. Well that is SUPER, because Scheduling don’t KNOW these people except to say, “They haven’t been fired or under police report for at least a year.” Which is why so many end up as DNS.

Maybe I am optimistic but I really hope they are not, for example sending someone who is doing overnighters for a senior with a touch of dementia and then after they do that a couple months the send them to care for someone with AIDS in their final stages. I HOPE they don’t do that, because you can see, one involves cocoa and saying “This way dear” and the other involves lots of meds and a host of other issues which may include respiration. But from the people who show up and say I am the youngest 'client' they have by 40 years, that it seems likely.

Anyway, that was one of the reasons I was late to bed today. And tomorrow, which from how Linda talks seems soon, we are going to AMERICA, the land of indefinite internment, monitoring by the government and interviews by many, many security forces before entering (and after entering)….Whoops, I meant to say the land of FREEDOM! So I will post a few postcards from the US tomorrow.

I just realized there is an added benefit of disability, for your guidance counselor: while everyone it is “say No to drugs!” and “War on Drugs!” Disability land is “Say YES to drugs!” True they don’t always get you high (unless you live in Canada), and cause all sorts of side effects, but yeah, big old YES to drugs. Which is why when you have a drug by your bed where you are taking a couple hundred milligrams of straight tramadol (synthetic opiate) having a caregiver who can READ and tell the difference between your muscle relaxant and an opiate overdose is a good thing.

Before I leave for tonight I wanted to say a) The going to the USA is part of a very crazy plan which may involve coming back on a stretcher and being met by an ambulance since I will be leaving ere morn and returning AFTER 11 pm. So, likely no blog tomorrow and likely, I will be in the land of “ALL FUCKED UP” on Sunday. But I will have an adventure to tell everyone about so it will be worth it!

And b) Linda has gotten me some gifts, because my earrings keep dying on me so here I have the three gifts of Linda (she gives a gift a day, while at the same time cutting off my manga and postcard money - hint! hint!). So there is first the Starbucks gift of summer. Which I guess means I can either go out alone or use it to treat people who come to visit me (hint! Hint!)
After that she got me the cool skeleton earring you saw up top, part medical school and part New Orleans (Two of my favorite places! Both encourage drinking!).

And finally the Gothic bat earrings. So I am all gothed up earring wise and ready to Starbucks? Well at least they are accesssible and you can use their cards world wide. Which is sort of creepy when I used the same $20 card to get a drink in Canada, then in Seattle, then Japan, then finish the total back in Port Townsend or Port Angeles. It really is the Bank of Starbucks!

Have a good weekend all – as for me, I plan to play so I will have to pay. Now I am finishing this off, packing and I hope doing a couple post cards!

Remember this weekend, “Do what Beth would do….only with less power tools!”