Thursday, September 08, 2011

Seizures and Bleeding in Brain, What Palliative can do?

Lost many hours, most of today due to massive seizures which cycled for hours and hours, destroying capacity. How permanent the damage will be seen over time.

A RN came in her last week to drop off a paper which stated that due to a review of my case by a doctor who has not seen me, or vice versa, I am now officially ‘palliative’ with an expectation of less than six months to live. Though that original request was made over two months ago. Smile, wave to the crowd, smile.

If you need a review for Vampire Dairies season 2 it is this: “These Vampires may be 200 years old, or 500, but they never grew up.” Expect angst and some new supernatural entity every 20 minutes of the show. Elana I think her name is should die (the one they ALL love, but no one bothers to think to give the family ring to so she can be killed and come back to life – yeah, tonnes of stuff like that, where people die, and die, and DIE, and die, but don’t really die, except when they die, until they don’t die – and they still end up going off into the corner and sulking, or better yet, stopping during a torture in order to assure a neurotic insecure girlfriend that she is the one – yes, real scene……twice) and like Sookie, perhaps one day she will. But don’t waste your money on this, just fall out of your wheelchair on the edge of a gravel pit and call it even.

And while life is very painful and has many aspects that suck, it does not, because we are small and the world is big. The day we came back on the ferry a young Humpback had been throwing his body out of the water in the Strait of Juan de Fuca with the full fins. The Coho was there. I wasn’t. But I was heading out of the doors muttering, “Whales, whales, whales, whales, whales!” when a Humpback surfaced 200 feet right in front of me and then the ship came to a full stop. I put on the strap, fearing I might spasm and throw my camera in the ocean in the excitement.
I know it was a humpback because it crested, blew and then has this very distinctive hump right before diving.
Here you can see it diving, lifting up the tail for a LONG dive, which took it far, far away from the ship. It was such a clear day that you could see Mt. Baker in the background. It was one of those small brushes with a creature so large and living in a space so immense that even being on the migration route, to see each other at all is remote.


Neil said...

Life is very small and insignificant, and yet it means so much. Whales are beautiful. And you are beautiful, Beth. I pray that you have less pain, fewer seizures, and don't lose too much quality of life until you do leave us.

Love and zen hugs to you both,

Lorna, Bob and Liam said...

Jayzus, Beth, how can you be profound, humble, heart-breaking and funny all at the same time?

Thank you for the lovely photos and reflections.

Thank you also for the scathing observation about Vampire Diaries... and how falling into a gravel pit would just save time and energy. Yes. Yes. And again, yes.

We're still watching, holding you in our hearts, and hoping that your journey can be less about pain and loss and more about caring and living what you may.

Much love,

Lorna, Bob and Liam

Linda McClung said...

It was so cool to see a humpback whale - my first one! Whenever I see whales I am excited that I can see something that most people in the world are not fortunate enough to see. It is a humbling experience.

I am so glad I was able to share the whale sighting with you. It felt like we were on a little adventure.

Seizures and your not breathing are two things that bring reality to my face in giant, flashing letters. It says Beth's life is short and what are you doing to help her live it?

When you have seizures it changes you so much - the paralysis, the pain, the slurred speech, the mental confusion and memory loss. I try to imagine what it must be like to experience it, so that I can be more sympathetic, but am sure what I imagine is only a tiny sliver of what you experience.

wendryn said...

I'm so glad you got to see a whale!

The Vampire Diaries review made me laugh - thank you!

I hope the pain and the seizures are not too bad, at least for a little while, so you can enjoy a little more and struggle a little less.


GirlWithTheCane said...

Love humpback whales.

Hate "The Vampire Diaries". Almost as much as I hate the "Twilight" movies (which are only watchable if you're drunk, and yeah, there's only one way I'd know that...) I'm told that "True Blood" is pretty good if you're into vampires, but I've never watched it.

I quoted you on my Twitter feed today: "And while life is very painful and has many aspects that suck, it does not, because we are small and the world is big."

Thanks for posting the pics of the whales...


Cath said...

I'd love to see whales, but I'd love to see you more x
I hope your days and nights get better and that you are able to get out and make the most of the time that you have left.
Love Cathx

Kate J said...

Oh Beth, I'm so very sorry to hear about the seizures. I cannot even begin to imagine what that must be like. That you can keep a sense of humour in this situation is amazing.

I'm so pleased, though, to hear that you saw a whale, and even managed to get pictures of it. I saw one once when I was in Canada - a truly unforgettable and life-enhancing experience for me, and I hope for you too. These huge and beautiful creatures, hunted and persecuted by people for so long, now able to live their lives in peace (as long as they keep away from Japanese whalers, I imagine).

Thinking of you, hoping your pain and seizures can be brought under some control, and that you can have some more joyful moments like seeing the whale.
Love & peace

Lene Andersen said...

wow - you saw a whale! I've always wanted to see one in real life and am very jealous. Thanks for sharing this!

SharonMV said...

Hooray for nature and the Whale! So glad you got to see that and amazed that you got pictures. I saw a whale once. i was on a whale-watching outing on a boat down here in S.Calif. We saw one pretty close under the water, and then the tail slapping the water from a distance.

Beth, I wish you didn't have to endure the awful seizures and their aftermath. I hope you get some respite from them.

So, they finally "awarded" you palliative status. Does this mean any change(improvement I'm hoping) in your care? Will you be able to have some of the respite care & counseling you need?

Wishing better days for you, more forest & ocean if possible. Maybe a squirrel sighting?

Love, Sharon

Raccoon said...

So, is this doctor's letter a good thing or a bad thing?

With a review like that, I'm glad I didn't start watching it. I think I saw one or two episodes of the first season, and didn't like it.

Sorry that you missed the youngling, but you still got to see one!

Gravel pit. Ha!

M. L. Archer said...

Beth, I've been reading your blogs and I am sorry this has happened to you.

You're honest and talented and don't deserve this crap. But who the hell does? (Well, I can think of a few world leaders...)

But you are in my thoughts. I only know your words, but I don't want to lose you. You're one of the good ones.

My very best,