Beth's Birthday Bubbles, Linda's Layoff and Fernwood Flowers

The one constant in life is CHANGE! Change happens, and oft without permission, irritating that, no? Last 8 days I experienced two diaphragm failures, and internal organ shut downs, otherwise known as ‘dying’ (or the start of the ‘organ cascade’ where the body is so weak that the different organs and systems shut down, one after another until there is only the heart and lungs and brain left). You may or may not know, my heart is in constant electrical failure, where there are thousands of erratics each day, including chambers not working, valves leaking, valves leaking backward, and the two lower chambers not beating at all. Nothing can be done about this except mask the pain with painkillers and try not to get too weak, as thankfully the aorta overcompensates by doing superbeats which move the blood even though half the heart has stopped working.

I also take the highest dose of neural pain blocker because if I don’t in 30-36 hours, the drug wears out and the nerves make the muscle spasm, like when you are woken by your leg going into spasm (usually with a scream). Only for me, I have dozens of spasms like that just on a forearm, and hundreds to thousands on my body which makes it so I scream until my vocal cords are stripped and the screaming produces no noise. This is…..unpleasant, and happened twice in the last 8-9 days as the constant emergencies and sleep made day and night mixed up along with the pills.

When the last full body emergency seemed dealt with, and I had rested for a day, I decided that the whole dying had taken way too much of my time and I wanted to see this ‘outside’ that people kept talking about. Friday I had my preplanned escape and the worker helped me dress and get out the door.

The joy of living in Fernwood is that it is the old style mix which we like to think a city should be: old trees with branches meeting atop the street, large green space for kids to set up lemonade stands (seen on weekends near garage sales), and house ranging from Victorian and Edwardian to the smaller 1940’s houses build on the $2000 sailors and solders got after WWII, and the larger 1950’s houses, after a decade of employment and growth. Even weakened, I am able to see all this by wheeling only a block or two in any direction, including two micro parks and a 1950’s aging movie star style ground floor apartment complex. Wheeling along one street, each of the houses are distinctive with colour and character, each one unique. It is a good neighborhood to wheel around.

Summer had arrived or at least started while I was in the hospital bed, and the birds were busy in the trees (what birds are these?). And the gardens had started to come up. This garden with the mix of flowers and colour along with a tree at the end often seen in Japan (the name of the red tree anyone?), cheered me up as I wheeled a block, peering at houses and gardens. I arrived at the local grocery store corner store which happens to be the best flower stop in town.

Linda often gets flowers for me to sit by the computer so though I can’t see out (yes, construction still going, after 38 months) I can see nature. I had my emergency money with me (in case I need to take a taxi home from the hospital if I pass out while wheeling and end up in ER) and bought Linda some Lilies in a pot to give to Linda to celebrate her getting a FULL TIME JOB! We have a north facing apartment and she has a north facing office, and the lilies need bright but no sun, cool and watered. Well, an apartment that has air conditioners on all the time or her job for the city government both fit the bill. Here are her lilies before she takes them into work along with a bouquet of mixed flowers I got for my birthday. Behind the flowers you can see the original Jason Hunt killer whale carving (his uncle did the carving for the queen’s baton for the Olympics, his grandfather did the Beacon Hill totem pole and he carved for the BC Royal Museum), Linda’s previous birthday present (from readers of Screw Bronze and myself).

For my birthday I got an Emily the Strange football t-shirt, with the lucky number 13 on the back.That night, I did emergency exercise for an extended time (an hour plus) until I was dripping sweat, in hopes of getting my body systems stable. The downside is that a) I am in a lot of pain for several days and b) the body retains water and I swell up as my tissues are so fragile now that I tear them doing anything and until I heal, I bloat (ug! Avoid mirrors).

The next day was my party, which started late due to my recovering from the illness and exercise. But I had a good time, and I hope all those who came did as well. Here I am getting my Birthday Cake (red from talking too much and overheating), and wearing a very cool sleep-shirt,showing a cute furry gal holding her plushie, a gift converted into a fav sleep-shirt. I got gifts, cake and messages from lots of great people who wished me happy birthday including a email with a personal recording for my birthday. I can see why people keep this birthday tradition, it isn’t bad at all.

I had been given a bubble wand and after a rest and lunch, I went out and tried it. With a bit of practice I managed to cover much of our building with bubbles, including a few which wandered into second and third floor apartments (as the tenants had the balcony doors wide open during the hockey game). I got a few ‘Wha the?’ faces coming to the window to find out why bubbles were floating by or in. This is me FOCUSED on the bubble making, not complete stoned out of my mind, which is what my facial expression looks like.
Linda was so envious that she wanted to try it, so she got into her ‘action stance’ and started pumping out the bubble. She was quite efficient and concentrating on making more and more bubbles that I had to remind her that this was ‘FUN’ too. She relaxed a little, which got her casual and smiling. It was good afternoon fun.

I also spent an hour or two writing postcards, as I have been able to send postcards again, with a lot of help from Linda and Cheryl, and though it is usually 16 to 35 every two weeks. I am glad to be able to send cheer and return messages to postcards, letters and emails but we are able to try out all the cool new rubber stamps we bought at the sale in April. Postcards shown are from two weeks ago, so it doesn’t ruin the surprise. I know that with my health looking grim for weeks to months, and between emergencies and trips into hospital, doing the five steps for each postcard and the time and energy that takes may seem foolish, as I often lose Monday in recovery from the weekend work on postcards. But as I have a limited time left, and less and less that isn’t just survival, I choose to be friends, to send to friends, to try and be there for people as much as I still can.

The good news of the full time job has been offset by having to wait that while for the first paycheck, which we are still waiting (before rent, I hope!). So while she is working and has new costs, we are still struggling. The job will take care of medications and rent, but the backlog of a year of supplies and things broken down from getting wireless back on the laptop to the urgent need for a NEW upright fan were coming from her weekend and evening job at the heritage building, she was getting great hourly pay, just few hours, but enough to start buying the 15 months of supplies we put on the 'when we get a job' list. Thursday, when she was soon to go into work, she got a call, a sad one from the boss at the heritage society where she already has friends. It seems that though her new job is a 1 year temp position, it is part of the same union as the heritage society has. And even though, as a 'temp', she doesn't get medical coverage, or other 'union' benefits someone at the union decided that if she works on weekends for the heritage society, that would count as 'overtime' since she has a full time job within the union already, and the union doesn't authorize temp overtime. The conclusion: because she was the number one pick for a job 400 people applied for, she lost the part time job which she also was the number one pick.

I asked her, "Do you think we will ever have one of those phone calls were something GOOD happens?"

We gave each other the limp smiles of too long fighting for things only to find yet another 'rule' or something which ends up taking away part of the success we fought for and thought we won (like how our medicare refund at the end of the year was.....$0, because the two most expensive pills were 'disallowed' even though they are both pain pills and there is no other pill which works. We had been told, "Don't worry, it is hard now, but you will get the money back at the end of the year....." Sorry Linda, I know you enjoyed that job.

Sadly, we still will need an upright fan desperately.One of ours broke off the base but we still use it, propped up. All of the fans are 2-3 years old and running on some miracle power, but all three are about as powerful as one new one. We need the fans because 1) if I don’t have a fan blow the air in a specific flow which cools my head, then flows down my body to keep that cool, I over heat (and have strokes in my sleep as my blood pressure goes up while the weaker veins from previous bleeds in the brain leak blood causing another stroke. I can and have gone into heat exhaustion or stroke while sleeping. And 2) if I don’t go that bad, if my head is heated, it overheats a nerve cluster atop the neck which leaves me paralyzed). The fans help up move the air from the air conditioners directly to cool my head and torso Ergo, with summer coming, we will need a new fan, likely two. The Florastor, which was kindly gifted to me, is almost gone, part-way through our last bottle. Florastor, recommended by doctors for those on cipro or without intestinal flora (like me), is the only thing that lets me absorb nutruits at all from my food, which not only includes calories but the B, D, and other critical vitamins (B is what I need to slow the brain damage as B-12 is converted into the coating for nerves to do electrical transmissions, and I am constantly fighting to keep that at the MINIMUM standard. Lower than that, the body ends up destroying nerves in order to have and use this element). So yes, though bought at a drug store, it is very important to living beyond a few weeks.

Linda told me she put what she needs on the Amazon Wish List. This includes the ice cubes to cool the five ‘core’ heat areas of the body and to cool the body inside quickly if I am overheating by giving me drinks as cold as possible. However, she got distracted and obsessed with these ‘brain ice cubes’ which she told me are ‘soo cute’ and ‘cool’ – I can’t tell if this is my goth habits rubbing off on her or her interest in the body. She has as bathrom reading books on body functions, and enlargements of things I don’t want to look at as being in ME while I am going to the bathroom. Maybe she is one of those people who can watch an operation going on while eating dinner, or watch a show on ‘bug in our floors and walls’ while snacking, I don’t know.

Thank you for the gifts of DVD’s/TV shows as both during the two days of pain of doing the ‘sweat exercise’ once a week (missed for almost three weeks due to very ill health) and after surviving lung, heart, bladder, kidney, or other organ failures, I can but sit there, and this helps distract from the dizzy, nausea, and extreme weakness. Thank you for the kindess of this, as I sometimes have very little too look forward to for several days but knowing that ‘if I survive tonight, and sleep for most of tomorrow, when I get up, if I can get help getting set up, I can lie here and watch xxxxxx (insert TV show/film here).”

So hurrah for birthdays, and for flowers in the Fernwood area. Thanks for the fun and also extremely useful gifts like Popcorn (that’s useful and FUN! And it goes with the TV shows). Also a double hurray because I am still at home: until late last night/early this morning, a five day ongoing degeneration meant that I was going to have to go into hospital this morning if my body didn’t start up again….and it did, just at the deadline – so I am very, very happy that I am not in the hospital today. And I made bubbles.

How I became an Orphan and what now!

I had a specific photo taken to open this post but Linda has the camera (what is it, wait until next post to see!) so this um, creative use of underwear will have to do instead.
The weekend comes and with the weather that means thaw for some, snow for some (-4 here last night, flurries predicted), but spring is a coming. Spring is about looking forward, at least it is for me. Over the last few days I have been blessed to find that love exist in this world; even between people who have never met. That love does triumph; not everywhere, not all the time, but sometimes, and this time, it did. I am sad, I am grateful, I am wanting to remind people that we are going for the long haul remember, like five or six months. But instead I will shut up and REJOICE(What would an EFM post BE without at least one cat girl picture?)!

Yesterday, at the end of our conversation, as he stood to go my father said I was like an animal and that no one could be friends with me without being hurt. That I hurt all who come near me. I talked on oxygen from a hospital bed and while I know that all people who are friends and love each other do end up hurting each other and making up, me as the pain bearer, the animal, might have been what the mirror told/tells me when I cut myself, but not now.

So I wrote him an email. The first line was, “I love you.” I shared how, through Janet I learned we can acknowledge loving each other as family, even if we don’t like some actions or even like each other as individuals.

My father had made clear he did not believe I was sick, or that sick, so I talked extensively about my disease (as he has not talked to me, or asked me any medical questions about my condition for over 16 months). Then I apologized. Because I have not been treating him and my mother with the same demonstration of care and love that I do with those close to me online. I plan for that to change. I asked for him to forgive me. To forgive is to acknowledge the pain another has caused you and let it go, let it fall away.

My father speaks to me as if I am still his object/child. There are commands, orders, and I put up with it before because I loved him. I didn't have the energy or time for this AND his denial now. So I spent an hour yesterday trying to demonstrate how he speaks ("That is correct." "You will come at 10:00." "You will do X and that will be acceptable to me."). So when he would make a command statement I would repeat that statement back so he could hear it. But before I could say three words I was ordered strongly, “No!” and again "No". In the email I said that all of this was nothing compared to the fact that with my level of illness, I wanted and should be with them, four blocks away in their condo and they should be with me because we are FAMILY. That we should leave all the bullshit behind except ‘family’ and 'dying’.

My father emailed me this morning telling me I was fired. He said that he will 'stop talking directly to you". Disease, illness, the asking of forgiveness all ignored. I ended my email as I started it "Love" - love from Elizabeth. There is not love from my father, nor acknowledges mine. I have been fired as a daughter by my father, or I guess now by a man who I share a genetic link. Does that hurt? hell yes.

Does that make me stop loving him? No. I think like Caesar, I will love him even while I acknowledge the knife he sticks into me. Et tu M……

So, what happens when Daddy doesn’t love you? Or when you have no daddy? I can’t and won’t try to control him; and I will still love him. In Victoria this weekend is tourist in your home town and I went to a local gardens to take pictures of flowers and fungus (for one of our readers who studies that). I will try to find the cycle in nature where growth is starting again, and remind myself to challenge MYSELF to grow. I will cry, but I can’t help that. My father might say I am an animal and treat me as poison itself, that talking to me is only pain so he must protect himself by.....cutting off his daughter? Golly, I guess that line of credit much less the kidney donation is pretty much down the proverbial toilet?

I am NOT going to have fake emotions, and yes, this hurt me and will continue to hurt me deeply, like a wound that never heals, pouring out of me, forever. But hey, FAMILY is who is HERE, who is in my apartment, and that is Linda and Cheryl and we are going to go out and have fun. And I am going to try my hardest not to concentrate on the family I don’t have, but the family and online friends that I do! And what I can do for them. Now is time maybe to say goodbye and thank you, but also to say, “I’ll see you” and “I saw this and thought of you” (worry not, I am not going on a spending spree, I meant around the apartment!).

We are taking off for adventure tomorrow morning, to see what this city has to offer and I just wanted to let you know. See, I care about you, because you care about me, and that is cool. I am going to get dressed up in my sexy, ‘look at me….if you dare!” clothes, and I am going to try to be exuberant. After all, things turned out okay for Anne of Green Gables and all those orphan girls in the movies. So what if I am an orphan? Orphans were always running off to the circus and having fun! Or in fantasy books they always turned out to be the hero/heroine. This is just another plot twist right?

I am going to try and find squirrels, and robins, I saw on yesterday but couldn’t get him to land on me. I want to find, if it is not snowing, a field of lavender and see if I can take a picture in it. I love the lavender fields. I think I like the honeysuckle too.

I will come back often to tell you of my/our adventures and to write some postcards to my family and friends. Thanks for being there for me, please, as I can, let me be there for you.

Luminara: Fire Dancing, Fire Belly Dancing, Blue Angels and my Bling Wheelchair

Hey, we just got back from the Luminara Festival which takes place once a year. I am beat so I have these few photos, and will give you the full story tomorrow, okay?

First, while I napped, Linda and Cheryl worked together to Bling my wheelchair into an Electric Parade, taking it apart to put glow rope everywhere.
So then I was up and we were off, Cheryl with glow-sticks on her cane and me with my bling chair (very, very popular with the kids who wanted their parents to get them one).

Luminara is a family friendly, almost accessible event once a year where Victoria does not act like it has a stick up its ass. It is the collective “alternative” for goths, geeks (I was told that “I had the wheelchair from the future!” by one nerd), drug users, Ren girls (in big Ren dresses), pagans, as well as anyone who wants to wear a costume. It is in Beacon Hill Park were across the many ponds are scattered displays, like this Torii on the duck pond.
There are also fixed light displays, like these drummers. The festival starts to finish at 11:00 ish but we didn’t get back until midnight (then I had a seizure, yada, yada).

There are also groups which combine costumes or moving events, like the BLUE ANGELS, who are these girls dressed in blue, (lots of Blue) which are lead by drummers which turn it into a giant rave. Because crowds, many of them high, follow them. One guy stopped in front of my chair and just kept saying, “The COLOURS! I mean, you have THE COLOURS!” until his friend pulled him away to follow the drummers.

We continued on because earlier in the day at the Moss street market, thanks to the influence of Neil, we talked to some people selling Poi, including Nick Woosley of Playpoi. Well, not a lot of people get into giving advice on how to do fire poi to a girl in a wheelchair in less than five minutes (use kevlar and wear cotton!). He told us he was performing at 10:40 at the Cricket Ground and there we went, stopping to take a picture of the Native Haida Village, with long boat and long house display.
Then stopping to take a picture of a Japanese drum with the reflection in the water (lots more pictures tomorrow!)
Well, Nick and the Poi fire Dancers were pretty darn impressive, like this guy who lit up this wooden staff, started twirling…
Then he throws it into the air….
And catches it going into a double wraparound of his back, his head down, doing spins and wrap arounds on his back with little balls of fire flying off from the speed. It was pretty impressive.

However, that part was followd by the...um, to be blunt, EROTIC fire dancing. First this is a married couple came out, with dance music, fired wooden staves and then started to dance.
And then WHILE dancing they got..um…close…and starting using each OTHER’s body for wrap-arounds (spinning their staff around their partners back and then back into their opposite hand). It was HOT, like erotic hot. And I said, “We could do this at home!”

And Cheryl said, “I don’t think your building manager Fran would be too happy.” Sorry, but fire IS erotic, and a married couple doing an erotic dance WITH fire, I was…um…aroused. And then SHE came.

Remember how I dated “danger girl.”

Well out come this girl with all the raw sexuality of danger girl, barefoot, a couple scraps of clothes on her with a steel hoop at 7 to 8 fire balls on it, and then she starts doing a hula thing with it going around her hips as she belly dances around the field.

“I got to get her number.” I say in a husky voice, eyes transfixed.

Cheryl sort of smacks me upside up the head. “You’re married!”

I look at the girl rotating her hips on the field, a ring of fire rotating in time to music and make a little moaning mewling noise.
So yeah, it was a pretty good night. Tell you the whole story and hopefully a Fire Poi and Fire dancing video tommorow? Have a good one!