Tuesday, June 21, 2011

How to make a miracle; even as it crumbles

I have edema of the brain.

My grandfather, dying of MSA, had a shunt a few months before he died for edema of the brain. I’m not getting a shunt, but I’m not going with Linda to see my nieces and nephews at the anniversary. The relatives got her a sale plane ticket, and in Canada, if they bought it with my name then Linda could fly free as my care giver.

But the pressure of the plane going up would likely kill me with edema in the brain causing a massive stroke. That is what my doctor told Linda.

I didn’t know. I was told just over a day ago that Linda would be taking her vacation time and I would be going to a home, a ‘care facility’.
There is no joy in learning that, only loss.

For over 180 days I have been fighting my edema. I was about to blog my progress, in between bed days, on how this is what my leg and ankle looks like. Yes, my leg is thin and about as thick as a pack of cards, the ankle can be circled with a thumb and forefinger but it isn’t giant and bloated. My face looks like it used to, and my extremities are thin and healing. I am wearing my wedding band again.

My edema is a combination of the collapse of the cells themselves but also the failure of my circulatory system. Once awake my ankles, legs and torso slowly lose against edema until I sleep again. But it is a start.

I exercise every other day, boxing once to twice a week along with steam rooms, long wheeling and exercise hand cycles. It hurts but I have wheeled to the Beacon Hill Drive in, to downtown and back, all in the night when it is cool. I was entering the Canada day 5K, my first since 2008. And a 10K in August, two of the three I need to justify the cost of renting a racing chair from the Wheelchair athletics association.

I wanted to tell you earlier that this girl was going to fly but I wanted to make sure it was more than just once or twice but now three weeks of exercising and going out wheeling three times a week. So, a girl’s gotta try, gonna fly but still gonna die. Turns out that this isn’t a remission just the end of months and months of trying and trying until now I am out there: outside, where life happens.

That’s why I need and am working to get new bottles and freeze bottles (there are two layers, you put it in the freezer, then put in the water before you go wheeling - ice cold drinks to bring the core temp down while wheeling in summer), I have them on the wish list. Gloves too. I just split my last two pair in the three weeks of wheeling. No gloves. But I'll find some. And I am going to wear them out wheeling.

I wanted to make a miracle.

I can do things that would have been a fantasy dream only a couple months, six months, a year ago: I can wheel to the Ross Bay Cemetery and back. I love being outside, and I want it to last as much as it can. But it is not spontanous remission and the cost is very high. Yesterday I exercised until I passed out completely and upon waking go right back to my count of doing pushup's balancing atop the back half of a half yoga ball. I'm screaming from the strain, until I pass out again (I dind't make 35 on that one, just 16 until the first pass out and another 7 until I passed out for long enough for my care worker to roll me into recovery position). So during that, and later I bleed from my ear, my nostrils, blood bursts in my eyes, and bleeding from anus and vagina, plus pus from the eyes out of the tear ducts and sinus: those high blood pressure ruptures are just part of the cost. I’m forcing all that this body can give and far more than anyone would believe. But I’m still dying. The heart, lungs, circulation and brain are failing, all systems. The bathroom plastered with blood stains, bloody cloths, tissues, and clothes: part of the miracle.

I still die alone.

But not today and not in bed.

I hate to lose and I'm losing. But I have now, and the lighter body makes it easier, a little more energy, and I hope to blog post more, email more, write more, postcard more, send gifts and thanks more. And to live and love with Linda more.

I still send out postcards, a few at a time. It is harder, but I keep going and there are so many beautiful cards to send to beautiful people. The same with the thank-you notes for the birthday gifts, they go out a few a week because I measure my energy in weeks, not days or hours.

Also an ebay auction sale, it is finishing Sunday, there is manga, anime (a great baseball one and a cult out of print BECK’s) and films from Korea, UK, Japan, and the US. There is the fifth season of Rebus (out of print) of 4 DVD’s in Scotland being both charming and that rakish drunk detective the British do so well since Sherlock took drugs when bored. One film (Sign of life) is about rescue work in Tokyo after an 8.0 earthquake, another is about the last great Empress of Korea in 1895, and the love, unrequited, between her and her bodyguard – it is a part of history that is worth knowing in the high production The Sword with No Name. It shows the expansion of the Japanese ‘empire’ into Korea and the Queen who faced down several empires to preserve her country. She is still revered in Korea today. Also is a new BBC series, already filming series two about the family who owned Bedlam coming back and converting the old asylum into luxury flats. They are trying to cover the grandfather who tortured and illegally operated on inmates. There are so many angry ghosts and Jed, the adopted family member who as handyman tries to communicate and appease the ghosts before killings. Turning asylum into apartment wins WORST IDEA EVER! But the architecture is lovely and creepy both with all the old Victorian splendor, sort of Steampunk Insane. Because the new 'it' thing isn't just a reserved and elevators in your apartment complex: having a Victorian cemetery and children’s cemetery too is a MUST (But warning, patients dumped in asylums, raped, forced to have children out of sight of society and then they and the children being experimented on makes for REALLY angry ghosts).

It is a pretty good series as I am remembering and thinking about it a lot. I'm looking forward to Luther Series 2 and The Shadow Line (from Amazon.co.uk), except now in Canada we have no post, as the postal workers went on strike THEN the owners locked them out (The advantage of dementia is that the surreal seems normal).

The ebay auction is to save money for emergencies, which abound, including Linda’s root canal today, which she found by doing ‘Bike to Work Week’ – the cold on the teeth brought about infection and pain. This produces a ‘WHY?” to the divine that biking to week equals owing $800.

Oh, due to degeneration of the frontal lobe TV and films are VERY intense for me and Stargate Universe Season 2 was amazing and so sad it finished. Any series where geeks have the bridge of a millenium old starship that dives into the out part of stars to slingshot forward and recharge energy is great. Where one got there by winning a game on dialing a 9th chevron is better, and the jokes about ‘That movie Star Fighter is SUCH a liar, my Halo playing means NOTHING!’ even better (In Star Fighter, an arcarde game once one calls an alien race to collect the ‘ultimate starfighter’ – it was the hope all young geeks). But both that and Royal Pain 2 (the two best TV DVD sets so far of those released in the early summer) left at the end in an unresolved way which no amount of staring at the screen resolves (Boris is a jerk!).

I am watching Haven, Stephen King's series of a weird town in Maine, which happens to be full of Canadians with THICK Canadian accents going, "So you're FBI eh?" and "Best ya go visit the Moose Farm." (actual line from Haven)

So, to bed so I can exercise and wheel again. Outside at night is not bad, as I saw five raccoons the other evening. Oh before I forget: terminal degenerative diseases suck (pass it on!). The dying part is a collection of random sinkholes of loss and despair that keep showing up no matter how hard I try. But I keep fighting.

The Power of Myth, fine as it is, misses women entirely (wha? Yeah Joseph Campbell, who wrote this post grad in a cabin during the depression, and likely didn’t see many women – but woman have myths beyond ‘find the guy’ and ‘have babies’). And one is the eternal warrior. She is driven, and has no peace, rarely any modicum of normal life, whether Joan or Zenobia, Hua Mulan (recommend the two disc special edition DVD in the UK for a good version of her life) Maria Rosa or the Trung Sisters. Unlike the ‘heroes journey’ she has no hope of acceptance, or long lasting history, the odds are almost always overwhelmingly against her and yet in each culture, these women fight anyway. I think much like Loki, whose eternal suffering and writhing creates the earthquake, so the summer storm’s thunder is the Eternal Warrior in battle against the Foe of all names.

I hope when the last race is wheeled and the last battle fought that I rest in Taigh na Banaghaisgeich, translated as ‘Amazon’s Home’, an ancient structure in St. Kilda, Scotland. Far better than joining a bunch of drunk Viking guys in Valhalla.


wendryn said...

Oh, crap. I'm really sorry to hear about the edema. I'm sorry that dying is coming closer despite all of the work.

You are a hero, you know, no matter whether or not Campbell notices women warriors. You have fought and continue to fight past where most people could survive.

Keep wheeling. We're cheering you on. *hugs*

Raccoon said...

Hrrm. I know you aren't using Linda's vacation as a "care facility" trial. It's unfortunate that you're going to miss the reunion, though.

You're shirt has wing!

Bleeding from various orifices like that is, from everything that I've read, not recommended.

I got a new postcard today! You would not have liked the temperature down here the last few days. Upper 80s through 103, Fahrenheit. That's even a little too hot for me.

"Sign of Life" sounds a little too close to what's been happening in Japan and Chile. And New Zealand, come to think of it. I wonder how accurate the depictions are.

Condos in Bedlam sounds like it might be fun, though.

A root canal? Let me guess - dental work is not covered under Canada's universal health care.

I really enjoyed Stargate Universe. And the way that it ended was, I thought, fantastic. Beyond having given the production team and writers enough time to end it well, it leaves an opening to pick it up later if they can.

"The Last Starfighter" was kind of fun, wasn't it? I liked the car. What was the guys name? Centauri?

American TV shows aren't the only ones that can leave you hanging, though. "Hex" did that, too. Between that and Angela Carter - "Company of Wolves," a movie based on her writings, comes to mind - you can get a couple of good examples of the eternal warrior as female.

SharonMV said...

Dear Beth,
I love you. I'm glad you're wheeling & getting outside. You know my heart is breaking for you.
Will you have computer access at the facility? Can you give us a phone number so we can at least call in & find out how you're doing? Not to speak directly to you, I know phone calls are hard for you, just a staff person who can give out whatever info is allowed.

You're right about Campbell - not many stories about female warriors. But I think there are heroic women & godesses in the Homeric cannon who have important stories. Although Persephone was abducted by Hades, Demeter through her grief, through use of her great power nearly destroyed the earth. Persephone was allowed to return to her mother & the upper world but only for half the year, thus winter & summer. There are stories of heroic women, but women who had to act within the constraints of their place in society (eg: Penelope). And women of power who were to be feared (and sometimes conquered by the hero, like Circe.And there were those Amazons - warriors indeed, but we don't have many stories about them.

You are flying, Beth - your words fly straight to my soul.

I hope you got your PO box mail via Cheryl & received the earrings I made you.


Baba Yaga said...

Distracted by your wings.

Oedema of the brain - good grief. The horrors just pile one on another, don't they? I'm sorry it denies you the 'plane trip - and twice sorry that means Linda has to leave you in a 'care facility' in order to go, after all you've managed to do together. (I hope care is the operative word, however. Sure you both hope it even more fervently than I do.) Another loss... and still you keep fighting. You've earned your place among the Amazons!

Yes, dying is always alone, I think. It's a cruel thing.

Wheeling more is good. I'm rather appalled (as often) by the cost of your efforts to keep your body functioning, though.

Sympathies to Linda - toothache can be the very dickens.

Neil said...

I wouldn't worry about ending up in Valhalla, dear; you'd be RULING the place in no time!

Taigh na Banaghaisgeich? Haven't heard of that one, and will research it post haste (or considerably faster, given the current postal situation here...)

Speaking of Canada Post, how will you get your eBay purchases (back to) Canadian purchasers?

Once again, you have wonderful images to share, except for the edema, but especially your braid. Very nice work! Linda's handiwork, I assume?

While it sucks that you can't go to your own family reunion (if that's what it is), given the nature of your family, I can't see good things happening there for you. Sorry to be megative (hmm that's typo; does it mean Massively Negative???), but you've told us before how marvelously you've been treated by your family. I can't help but think the visit wouldn't be worth the effort.

You're right Raccoon: dental care is NOT part of medicare up here. That's why so many people on social assistance and lower incomes cannot afford proper dental care.

Please pass on a hug to Linda for me; dentists can be scary.

And have Linda hug you for me, please, for wheeling outside at night. You're crazy, you know. We need more crazy people like you.

Love and zen hugs,

JaneB said...

Oh damn. Damn damn damn (and worse words). Life always has more thorns than roses, but surely you and Linda are due ONE rose soon? Night wheeling sounds cool - although feeding the racoons might be a bit more scary than feeding squirrels. You are a hero to me, my friend.

I hope the care facility can actually CARE!

Dawn Allenbach said...

It's funny you mention women in mythology, because I just got a book through inter-library loan titled Women in Celtic Myth. I'll start it as soon as I finish The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World.

Edema sucks. I am also cheering you on. Keep fighting until the absolute end!

Dawn Allenbach said...

Care facility. Booooooo!

Been there. Hated that.

cheryl g said...

It is something to grieve when your opportunities to travel are curtailed by this illness. It sucks that you won’t get to see the nieces and nephews. It also sucks that with linda being gone your options for care are so limited.

I am glad to see the edema going down though I wish you did not have to put yourself through so much pain to keep your systems going as long as possible. I am in awe of your determination and strong will. I believe you can make a miracle and I will do everything I can to help. You will fly.

Laura said...


Fight the good fight. *big hugs*

Lene Andersen said...

Aw, crap. Care facility? I guess the good news is the workers will have to show up? How long will you have to be there?

When I think of warriors, you are first among them. What you're able to make yourself do is amazing. You inspire me to push harder.

Lene Andersen said...

p.s. Love the shirt!