Tuesday, August 09, 2011

Coming Home, East Sooke and Wit with Emma Thom

The doctors talk to me now like car mechanics do when you haven’t any money. With money it is ‘Oh, the transmission needs work, then in a few months we should…” But knowing that you are without money or options they tell you, “It might last a few months, or it might go a few weeks, no sure way to tell.”

After hearing the metaphor Linda paused then said, “I think you’re right.”
I’ve been struggling for most nights with my diaphragm, with my lungs not working, as the bed is elevated, and elevated again, until I am sleeping sitting up, as I suffocate else. ‘Beth, wake up!’ Linda called, and she helped me roll over to the best access for the good lung. She said that breaths had been softer and further apart until, while asleep, I had lifted myself up to take a breath.

I wonder if I have the time to rest and get strong enough between exercising. I watched Wit with Emma Thompson about, like me, a Doctor of Philosophy who studies 17th century metaphysical poetry. She has stage 4 ovarian cancer and as she says, “There is no stage five.” The writer, Mike Nichols went on to create Friends In Deed, a group for those with life-shortening illness’. They have the Five things to remember, of which I no longer qualify for four of them. They advocate the Life of Quality, which I also do, over the ‘quality of life.'

The film made me laugh till I cried at the parts I was not supposed to laugh at. I guess the idea of intestinal lining irritation as a major side effect isn’t supposed to be funny, but then I have been working on manually breathing: literally using my arms to force the air out of my lungs and pull more in. But then, “Not breathing” or “Heart stopped” isn’t usually told to you as a side effect.

I went to East Sooke on Saturday, and it was hard going. But then, it seem that everything is merely a level of hard going these days, so I might as well go someplace that is cool, beautiful and home. This is where I learned to be a Canadian, in East Sooke, and so this perhaps is ‘my land’.
The song, After the Storm, has a significant following after being heard in cancer clinics, hospital wards, recovery, the palliative playlist. It was in East Sooke that I learned to hear the heartbeat in the land, the ways of moving slowly to walk among the deer, the rabbits, the cougar now and then, and birds, the crows playing in the wind that sweeps the long grass, which ripples like ocean waves.‘Remembered our own land/what we lived for’

Death IS big, and I am small, oh how small. That I’ve learned too. But mostly I learned that kindness, the comforting kindness is something which is the highest gift. So often I have to balance in the narrow margins of my disease that I can’t relax, and only after a long time, after I am well and truly safe. Once my body accepts that it is cared for, in all the aspects of that word, does my body allow me to cry, but only a bit, because it can threaten the air passages.
I laughed and laughed as Emma vomited in Wit, to the cadance of ‘Oh God, oh God, oh, okay, maybe….oh my God’ while rocking back and forth is one I know too well. Sadly, ‘intestinal irritation’ doesn’t tend to make you a poet. I had rejoiced that day as I had finally, after some weeks, not bled anally, just from my nose. Though I woke up with my eye full blown of blood, the red out-colouring the white, with complete red saturation after a quick pull down under the eye check.

How much do I fight because I am afraid of what happens next? I’m not sure, though as the film Wit shows, pain reduces us all to the point where all we desire is comfort. My pain too comves in waves, great giant wave surfing ones, where the slightest sound is physically painful. And my back, now full of chemical burns from the patches changed every other day, seems a preferred pain. Better than a bad pain, which is what I fear, those times when the patches or the nerve pills are forgotten and I am going to have to survive six or 12 hours with only break through meds and two of the three main pain agents.

“How is it at 200 mg?” The doctor wanted to know.

“Oh, a lot better, I think, I still have the pain but I only use three of the breakthrough pills a day.”

Linda interrupts, “Don’t forget before the nap, and overnight.”

“Oh, right, then only five or six break through.”

The doctor’s face is a study in micro expressions, “So how many was it last week?”

“Uh, 15 a day, no wait, what is three pills every four hours?”

Linda interrupts, “More like three or three and a half hours.”

The cost of all those tree roots and going on the back wheels of the manual wheelchair plus the up and downs was four hours struggling to sleep and breath, and failing. A living hell, where a single breath measured time like hours, in and out of consciousness until enough minutes of sleep were ticked by to start, as I lay gasping. That was part of the cost too. But it is a lovely place isn’t it. More pictures tomorrow/later. I just wanted you to know that I am, and I sent out a couple postcards, which is my defiance against the universe, though Linda and Cheryl did most of the work.

Weekends are odd times, now that I am able to go out after a couple years, seeing people who thought I died last year. It makes the conversation rather stilted. They can’t say, ‘Looking good.’ So I say, “Like tile rot, you can’t get rid of me that easy.” Then I laugh until the shocked look fades and they laugh with me.


Linda McClung said...

I am so glad we were able to go to East Sooke Park on Saturday. I love the picture of you sitting on the edge of the cliff. You look like you are having a Life of Quality. It is something I want to give you as much as possible.

East Sooke is a beautiful park - and brings peace to the soul. Forest, ocean and sky blend together and I can't help but appreciate being alive and living in such a beautiful part of the world.

Being in the park brought joy, but the costs were high. You talk about the difficulty in breathing, sleeping and the pain. While I haven't experience the sensation of not being able to breathe like you do, I do share some of the anxiety. Will you sleep through the night? When I hear the gasps for breath I wonder how soon the next breath will come. With the steadier breathing, how shallow are the breaths? What is the best way Beth will be able to breathe? How much elevating the bed before your abdomen is squished and you can't breathe because of that? I worry for you and want to give you the best chance.

I think some outsider watching you laugh at the painful parts of Wit might think you were being sacriligious. But people who share your experiences would understand. It is comforting to find a group of people who have shared experiences. I hope your group of those people will grow.

SharonMV said...

Dear Beth,
I can cry for you(and I do), if some extra tears will help. You are as beautiful as the things you describe - harder than petrified tree roots grabbing the dirt and earth, softer than the moss lining the hallway of trees. I wish you the comfort of the forest, the beauty of the light shining through mist and delicate branches and a way to reach it without the struggle & pain.


Noisyworld said...

That outing looks reaally beautiful :) I'm sad it costs sooo many spoons/whole cutlery sets though :(

I like the picture of you on the edge too, but for a very different reason...you look like you are at the end of your run up (or should that be roll-up lol) and are about to lauch yourself over the edge as in a flugtag/birdman- human powered flying competition lol

wendryn said...

Beautiful pictures. I'm very glad that you got to go to such a wonderful place and spend some time away from your usual surroundings. I wish it hadn't cost so much, but it looks like it was worth it. You look very happy.

Lorna, Bob and Liam said...

Oh my god, the photos of the park are beautiful.

So are you.

I'm glad you were able to go, and that Linda (I'm assuming) took such spectacular photos of you.

As always, love and hope to you...

JaneB said...

What a lovely place. I'm so glad you were able to go somewhere that refreshing, even if it was so expensive for you. THinking of you - and Linda too.

Olivia said...

What a beautiful place and amazing photos. My fave too was the one with you on the cliff - I didn't spot you at first.

Baba Yaga said...

What a beautiful place - and how wonderfully you describe your relationship to it. & how at home you look there. It's good that you made it there...

The cost is barely thinkable.

Neil said...

East Sooke looks beautiful. I'll have to add that to the places to visit when/if I can afford a real holiday. And you look perfect there!

The movie "Blow Dry" is worth watching. Alan Rickman is the male lead, and the late Natasha Richardson is wonderful as his ex-wife, who ran off with another woman. She's also trying to hide cancer from everyone. She doesn't succeed, of course, but it's well acted.

I can't begin to imagine what you're going through, Beth, but I salute you for your refusal to give in to the Grim Reaper, and your insistence on Living until you die.

Love and zen hugs to all three of you,

Anonymous said...

Heya, this is Laura (I deleted my Google account, which ate my Blogger account). *big big hugs* First of all, I want to apologize for not having been able to purchase the fan for you this month. :( I'll try next month! x__x And also, I'm going to send you another postcard. *more big big hugs* Hang in there, many blessings, I'll send a prayer up for you, and light a candle for healing! Take care!

cheryl g said...

I love the picture of you on the cliff. It was wonderful sharing your love of East Sooke and your joy in being there. I love hearing your memories of the area and time with your grandparents. East Sooke is very beautiful. The second picture of you on the cliff is really great. You look so peaceful.

Raccoon said...

I like the pictures too. Reminds me of a place I used to go when I was in college. I can still picture the fire ring, and the raccoon that came up and sat beside it for a few minutes...

My question is, where was Indy?

And yes, there is nothing like having an odd sense of humor...

Lene Andersen said...

Wow. Just... wow. The words are beyond lovely (in that Wit way), the images breathtaking and that song will live within me for a long while.

I'm glad you get to go out again, sorry that it costs you so much. Thank you for sharing the experience, both the good and the bad. And the doctor's micro expressions - what a wonderful way of phrasing it!

Neil said...

Just thought I'd let you know that I have finished reading Jellicoe Road. I honestly don't know what to make of it; I think partly because I ended up reading it in such small bits at a time.

It was worth reading, and I'll try to read it again to get a better understanding of the book.

Thanks for the recommendation, Beth.

Love and zen hugs,

Elizabeth McClung said...

I'm thankful Linda took the pictures of me thinking on the cliff, and the other ones. Perhaps I should try to flesh out the intimate experience of Wit, which is two films, one for those who see it as a progression of a 'tragedy' and for those of us who have degenerative disabilities/diseases it is a snapshot of a few familar scenes from having your body and brain evaluated without asking you a question by a group of doctors to being cut off when trying to say, 'hey, I think your 'cure' may be killing me' and then the drugery of vomiting, or peeing yourself, or the shuddering of pain.

I will show in the East Sooke post today why I didn't use INDY.