Tuesday, January 24, 2012

'Riding the Toboggan', Anime Hair and polygamy sex

Fresh powder snow for a week in Victoria. It was snow that was sticky to the point that wheeling was like creating a giant snowball on wheels, perfect for snowman weather. The colder temperatures outside meant I had moderate to severe frostbite indoors, fighting it with heaters, gloves, and watching fingers turning funny colours.

The Coho is in Dry Dock for 12 days or so as the annual fixing of the 50+ year old ferry occurs. Cheryl got a vacation day off to come over so the three of us were able to spend some time having FUN together. We watched an episode of Bones with polygamy of sisters. As one said, ‘We sisters are FAMILY, to be a sister IS to be a wife.’ I looked to Linda and said, ‘Uh, you know how Cheryl is my ‘sister’…”

Linda, “….yes?”

Beth, “But not like...sister/wife, um, having sex...just so you know.”

Linda laughed but said nothing. She can be confusingly random in communication at times.

We watched women’s tennis. We talked. We did a jigsaw puzzle from Hunt, another of the 1/4 inch wood, soy paint for better colour, personally designed Artifact Puzzles. They are large enough to have fun by myself or with friends, and yet small enough that I don’t end up in agony doing them. Plus this puzzle had ‘fantasy’ pieces, like the dragon, Pegasus, and cat.
I was able to have this remission because of exercise on Thursday, which caused some slight pain (no sleep for a night, two nights of hallucinations, and a two series of seizure cycles of partial and clonic tonic (grand mal) seizures which occurred after falling into a light sleep state. This lasted for over an hour and was like being stuck in a clothes washer on spin cycle (eventually the hallucinations mean I find out tomorrow how long I kept going into seizures while asleep). I have been ill for the last weeks/months so that even with only one appointment a week, it was often too much for me, and I would miss it. That's being alive, but sucky. And I didn't want to dump all that on you, so I wrote about what I could, which was often the good films or books that kept me sane for hours at a time.

Thanks to ‘riding the toboggan’, I was able to have a respite of 36-48 hours. I had been constipated, taking everything I could for it with little luck. But after the hours of exercise, a series of cramps started and continued for hours which emptied my intestines completely. That cramping, I call ‘riding the toboggan’ because a toboggan is a piece of wood, plastic or steel where there is a curl and once headed downhill, steering seems to occur by how vigorous you are in screaming.I still end up soaring off of snow bumps and riding over bushes or into trees, but the screaming makes me FEEL like I have control. Either way, once started, all keeps going until it is done!

The strain and lack of sleep produces an effect which makes me look, on some days, like I have Celiac disease, with the sudden puffy face and body. The energy to get decked out in corset and knee high boots would leave me slumped by the bed for hours. Being powerless like this leaves me emotionally vulnerable, as I was able to control weight and appearance to find this ‘end stage’ of the disease takes that away too. “But Beth, you are alive when even the specialists and your palliative doctor expects you to be dead, isn’t that worth it?” I ask and tell myself.

“Maybe, but why can’t I have an end stage where I look ravishing too? I see that in movies all the time!” I demand. Those people in Bucket List or Never Let me Go, who with end stage cancer or mutiple organ removal can still head off on road trips, hikes, sky diving et al. How come they get energy while I get fatigue and puffy?

Thanks to my ‘good day’, I was able to make the second attempt for getting my hair cut and colored. This was important not just to the daily hair tangle struggle from no hair cut in close to a year but the need for Anime Hair. Anime Hair not only makes the world a brighter place (I went out in the sun for the first time in two months, followed by a howler of a storm), but life without anime hair means that a) I am unlikely to find a notebook dropped by the God of Death and use it, or discover that I am a goth-loli angel with a missing memory. Nor b) will I have chances to participate in a historical drama like Morbito: Guardian of the Spirit (with a cool, kick ass spear-woman) or even c) wander into experiences from freelance assassin (Darker than Black) to Goth Loli style detective (Gosick).

Still, off I went, looking haggard and puffy. One advantage of staying alive, plus the exercise to get blood to the scalp (keeping hair alive) is having hair of a decent length. Which is nice, as it gives the workers something to envy and comment on (except the ones who try to end up as my mother, and argue with Linda that I shouldn’t have ‘junk food’, refusing to bring the caffeine I take with a bottle of coke which speeds up my heart enough to stay conscious).
As you can see, by the end of the cut and colour, I was looking a lot less ‘ug’ and a had that devil-may-care grin back into my face. A good haircut really can make a difference.

The positive effects of the Anime Hair had me going home but doing two jigsaw puzzles, and also working through the night to write the two dozen cards for about twenty presents as well as over 25 postcards. I am sorry if your Xmas/Holiday present arrives in the next two weeks. I really had/have been trying very hard to get it done before Xmas/Holiday, but time moves faster than I. With that gust of energy, with help from Linda and Cheryl, I caught up and have, er, most...or at least MANY of the holiday presents sent. For me me, getting the gift, matching it, and writing the card all take determination, pure focus and will power along with energy. It might be a couple weeks late, but what is 20 odd days between friends, eh? Sadly, the styling energy disappeared, but, when it reappears, you know I’ll be back: I’m keeping on with keeping on.

18 comments:

Linda McClung said...

I am really glad you had such an exciting weekend. It made me really happy that you were finally able to get your hair done. It is a great colour on you - anime hair indeed!

Doing the puzzle together was lots of fun - I had forgotten how much I enjoyed doing them. The crazy cut pieces definitely made it more of a challenge as I am used to looking at the shape of pieces to fing the piece I need. With this puzzle, it is almost impossible to figure out which one fits if the pieces are all of the same colour.

You worked REALLY hard this weekend doing all that writing - postcards and gift cards. It is no wonder you were in so much pain and had seizures. I hope the recipients enjoy what they receive.

Loved your comparison of the tobaggan ride!

Christianne said...

Your hair is fantastic and you look so pretty! I am so happy to hear that you were able to have some time (and, more importantly, energy/wellness) for pure pleasure this weekend. And while I already knew you were scarily smart, that puzzle just reinforces my opinion--I get confused just looking at the pieces!

Tina Russell said...

I really like how you look in the picture where your hair was just cut. The green pendant is a really nice touch.

Yeah, they make everything look easy in Hollywood, don’t they? I’ve always been so annoyed with how they make having sex look so easy, since once I started having sex in real life I felt stupid for not living up to the impossible ideal where nothing goes wrong. Now I know they even make _dying_ look easy. Rrrgh!

Oh, I watched the polyamory episode of House, recently. It wasn’t _too_ bad, at least... I _guess_... It was just really awkward to watch with my brother, who doesn’t know I’m poly. (That doesn’t stop me from telling people in public on the Internet, obviously.)

Best wishes, Beth!

—Tina

Bonnie said...

Anime hair! That is the best description, ever, for a great cut and color job. You're right, good hair makes one feel fabulous.

Hollywood makes *everything* look glamorous. Although, personally, I think you rock the goth/loli look. I think you would also make a great consumptive Victorian Steampunk heroine too. You've got the hair for it . Put up in a nice poofy bun, with some great earrings and a corset...it would work.

I'm happy you had a great day. You more than deserve one.

Olivia said...

Love the anime hair, and especially how happy you look after your haircut. I also thought the tobogganing metaphor was very evocative. Some bodily processes, once they start, you just have to ride it out!

Olivia said...

Oh, and regarding the tennis, was it the Australian Open you were watching?

Lene Andersen said...

You look beautiful! I love that colour and the smile's definitely hiding mischief!

Love the puzzle - that's just gorgeous. The individual pieces are little pieces of art.

Also glad to hear that you got your insides cleaned out. Sounds like a bit of an extreme toboggan ride, but... erm...

ps how come Victoria has snow when Toronto has zilch??

SharonMV said...

Dear Beth,
this may be a funny thing to say, but you give me hope! I haven't had a haircut in several years due to being unable yo go out, half my hair falling out due to Lupus, thyroid & adrenal problems. I've had several periods of bad hairloss Also for quite a while it seemed like my hair just did not grow at all. I have retain just a very small amount of hair that has any length to it. Fortunately my hair is curly & fluffs up appearing to have more volume. So, I was afraid to get a cut for fear all my length would be lost. Now more hair has grown in. i have more hair, albeit 2-3 inches long, I may brave getting it cut when I'm able to go out more. I do want color, maybe not anime color. I'm tired of looking in the mirror and seeing a person with so much gray hair!(In addition the puffy and haggard look I also am stuck with.) You look great with your new cut & color.

I'm so glad that you had time to visit with Cheryl and do the puzzle, work on cards and get your haircut. You work so hard to be able to have the time & energy. The "little things" are so important. The contact with others is needed too. Anyone receiving a card or gift from you receives a precious bit of wonder, beauty & love - something to be treasured. I'm sorry you have to pay with pain, seizures & other suffering.

Love,
Sharon

Neil said...

Nice hair colour, dear! Now, with the right corset and boots, and a proper steampunk wheelchair, you'd be quite ready for that steampunk con that coming to Victoria. If you could dress Indy up to look like she's steam-powered, you'd make quite the steam statement! (That Colours in Motion chair with the beach tires is just begging for a steampunk makeover, despite the bondage photos they use on their site.)

The Artifact puzzle is truly amazing - I really shouldn't have visited their website, though, since I now want one of their puzzles SO badly! I have a couple of friends in the Seattle area, though, and maybe one of them could bring it this summer if they visit (to save on shipping costs and duties and clearance fees)

The Goth girl with the bat wings is cute. Gonna try that with body paint next time you wear a corset?

As for postcards and late Christmas presents, every gift or card from you should be treasured and kept carefully where it can be seen! Who cares if it's late?

I hope you feel less crappy soon!

Love and zen hugs,
Neil

JaneB said...

Yay for haircuts! Definitely a good thing... and you looked great.

Lorna, Bob and Liam said...

Outings and haircuts and toboggans, oh my!

Glad there was lots of good and activity among all the challenges.

I was thinking it might be frustrating for you that your positive posts often get so much more response than your more pain-filled posts.

It's not because we're trying to ignore the bad stuff... I suspect it's the sheer relief that YOU'RE getting some relief.

Anyway, we're in here for it all... whatever your journey is, whereever it takes you, we love and support you!

Lorna, Bob and Liam

Kate J said...

Glad you had some fun... and your hair looks great! NDY.
Love & peace

PinkPhoenix said...

Your hair looks amazing! Its a wonder what a nice hair cut/good hair day can do when you're sick isn't it? And why the hell shouldn't you look all hot n sexy, during end of life stage or whatever they call it? Pamper yourself while you still can I say, it's the little things that are enjoyable. *gentle hugs*

cheryl g said...

I was glad to have a bit longer time over so we could have fun and the jigsaw puzzle was great! I really like the fantasy pieces.

You look beautiful with your hair done and the cover is wonderful for you. I know Linda liked it because she kept stroking your hair. Anime hair opens up many possibilities for you. I’m pretty sure you are a goth-loli angel.

I am sorry for the agony you endure riding the toboggan but I am very glad you got a system clean out so to speak.

I miss you a lot with the Coho in dry dock.

Raccoon said...

"Linda laughed but said nothing. She can be confusingly random in communication at times."

That made me laugh!

It sounds like you had a great weekend.

It looks like I'm going to be going to Fananime again this year. I've got a chance to get a book called "Anime Angels," http://animeangelsbook.com/ . They are hoping to have a publishing party that weekend. I know, it's not Sakuracon, but it should be fun.

Neil, it would not be the first steampunk wheelchair that I've seen: https://www.google.com/search?q=steampunk+wheelchair . I think I even saw one at Comic Con…

Speaking of cards, etc.: I keep receiving them, about every two or three weeks. While I don't have them all on display, I keep the most recent one out until the next one comes.

Cheryl, I'm sorry that the ferry is in drydock, too. Why don't they have two?

Elizabeth McClung said...

Thanks for all the kindness and enjoyable comments. I will always try to share the best of my life with you. As I owe the people who have not given up on me as I moved from fencing to diagnosis, to disability, to terminal, to end stages. I survive because I fight, but I have learned so much and done so much because of the friends I have online.

Tina: the green in the pendant is an Anarchy symbol, I'm still rebelling, in the small ways. Thanks.

Yes, poly seems to be another fear of the month from the vanilla brigade.

Bonnie: thanks, yes Hollywood gives the easy answers, which usually aren't that useful in the real complex situation, but fun to escape to, as one can.

Olivia: yes, it reminded me how long it has been since I saw tennis. John McEnroe (sic) always used to do well at the Australia, until they booted him for being rude. I've been watching lots of Oz films like Tree (from 'Our father who art the tree') and a road film of a girl and an aboriginal boy teaming up on a road trip. Also watching Special Op rescue. Know the world by the films!

Lene: Thanks, they use a laser to cut the pieces and a professor designs the cuts. I do what I have to do to get the good days, I'm sure you know about that. You probably taught me.

Elizabeth McClung said...

Raccoon: I'm glad you laughed, and that the postcards still come. I think of you a lot, because you have taught me a lot, by your example in living. When it gets hard, I go to the gym because I think of you. And I have fun for the same reason.

PinkP: Yeah, amazing how that works with a hair cut. And it hasn't fallen out.

Sharon: Studies show that ALL women who are indoors due to chronic illness have significant hair loss. I am really glad yours is coming back, I don't have the chances to control my body and how I look, but I hoped that it wouldn't matter to friends. We both play for the long game, which has the ups and downs. One worker told me of people who come to the house to do styling, your local disability office might have some numbers.

Jane: Thanks

Lorna: I know that often people don't know what to say at the bad stuff, but for me, when I got diagnosed, I wanted to know 'what is it going to be like' and 'what do I have to look forward to' - I couldn't find anyone who blogged the details, the ups and downs. I want to ensure that is there for others, or those who share the lives of those who have degenerative or terminal illnesses.

Kate: Thanks

Neil: As you see, sometimes they put some on sale, but yes, I lust the puzzles, but they tend to be pricy, the rabbit sakura one was $75 (YOWL!), but they are fun to do and last a couple lifetimes.

Neil said...

Raccoon: Professor X's vodka-powered(?) chair is nice, but I'm sure Beth would look ever-so-much better than that in a punk'd chair, wearing a corset and taffeta skirts. I'm sure her weapon of choice would be that bow she tried at SakuraCon. :)

Beth, my dear, I hope your weekend is pain-free, and that all your innards work the way they were originally designed to.

Love and zen hugs,
Neil