Thursday, March 11, 2010

Pissed off, knocked down, can't piss and more joy.

Pissed off because I don’t get to go boxing today. Because I didn’t sleep until 9 am. Because, yeah, bowels not a functioning. Thank you again for the manga and the books since it was not hard to imagine, like in BoneShaker (Steampunk novel), living in a toxic, zombie infested Seattle at 5 a.m. with the sound of rain and howling above me, plus my pain and a little delirium (That book is headed out to ya, V!).

This has been a bad week, two days of heart erratics, the fever returning, pain so bad that, well, people could tell I was in pain, even when I was smiling (it must be that, “I am going to eat your children” smile that pain gives me instead of the “Aren’t we having fun now?” smile). And seizures, lots of seizures, and going blind with neuro blindness, again and again. And paralyzed, and blood from nose and mouth, and more seizures. It knocked me, in my grand plan from stage 4 all the way back to stage 2 (from ‘Going out every week and exercising weekly to build reserves’ to ‘Have no reserves, try to maintain and stabilize life functions, work toward gaining reserves’). That means bed days (or at least hours!). It is why I blogged about Squirrels because while Squirrel and Seizure both start with S, one is cute, fuzzy and neurotic, and the other leaves you with bruises in odd places.

I wish in some ways I could not make what I have been going through since late Sunday sound like the flu. But how do I list what a couple hundred minutes of seeing the back of your eye sockets while your body danced like being whipped with piano wires feels like? This morning I was so weak it took me 1 hour and 20 minutes to pee. Well, to pee AND stay conscious. Either way, not getting all that I want to get done, not sending emails, not answering comments, not doing enough. And since I am not getting better but the other direction, going to have to say, ‘Lonely, love some email but may at best send back a couple lines’ (who wants to bet I write 1000+ words!).

So the disease is kicking me around like a home-made soccer ball this week (Soccer theme today). Got to try to look past that. Which is hard in those days of bad, bad pain, when my arms and body were shaking from the pain, and I was maxed out on painkillers, and seeing anything beyond that was hard. See me at a Spring Market was hard. Seeing me going to Sakura-Con was hard. But Sakura-con is now (insert number of days until April 2nd) away and I am going. Or my body is going – Sakura-con, the corpse tour! No, let’s not think thoughts like that. I will be animated, since Seattle is the town of zombies (BoneShaker again).

I am also pissed as the first thing I see when I turn on my computer at my home page is this story:

Paralyzed Soccer Player walks again

‘With Positive Attitude and Hard Work..”

11-year-old Mackenzie Saunders was playing soccer, got hit, then got up and played, at the halftime started feeling numb in her legs, later taken to hospital. Cracked vertebra with a blood clot (and swelling around the injury). They (at hospital) could not find a history of a lower back injury causing paralysis in girls soccer.

Mother says: “She has never asked ‘will I be okay?’ She has said, “I will walk again.” (I don’t think there is a SCI who hasn’t said that.)

Interviewer asks “When that day comes?”

“I guess I just want to hang out with my friends or …(thinks) a game of soccer).”

She walks out with a limp. “It is her attitude that is the story.” (well since she got an MRI within an hour of getting to the hospital, and still gets constant therapy that probably helps too – A friend with the need for admitting into the hospital due to his heart told us that now the wait list for the MRI in this town, is 13 months. He says his heart could go at any time but is waiting for the specialist test and referral, and may not get the operation “until Christmas, who knows.”)

Neurologist: “You really, really have to look in the MRI, and you can see that little fracture and there was a little, little fracture, and a little bit of hemorrhage and that hemorrhage put pressure on the cord. And THAT is what started to cause the neurologic problems.” (on questioned making a ‘full recovery’ the neurologist said that she is glad the girl can ‘get around as well as she can AND the fact that she is young’ as ‘nervous systems repair themselves much better in a kid than an adult.”

During this the Camera is on MacKenzie with bold caption “PARALYZED SOCCER PLAYER CAN WALK AGAIN”

We are not told what her treatment was but it is alluded to in the interview by the medical specialist as “Intercede immediately and doctors, even if they don’t see these injuries very often, have to think sometime ‘outside the box’ and THEN you get great results...”

One leg has regained sensation, one has a brace on the lower leg.

Interviewer, “So next time I see you…maybe the olympics?”


First off, the Paralympics start tomorrow, so a –10 out of 10 for that final question (Sorry all you Paralympians, too bad you didn’t work hard and have a positive attitude!).

This story is interesting because it manages to encapsulate so much about the popular ideas about wheelchair users, paralysis and SCI while reinforcing propaganda instead of information (‘Thin blonde girls are happier!”).

Problem 1: No education at all on what an SCI is, or the types of paralysis. All we are told, (in subtitles too) is that she was going to have to use a wheelchair (they don’t even make clear if she had paralysis complete or loss of feeling), and now she can walk: due to the ‘American Dream’ of hard work and a positive outlook. (BARF!)

Problem 2: The ‘will to power’ presentation of wheelchair use and the implication that all wheelchair users could, if they were just perky enough and worked hard, could walk again. Except that spinal cord severing and a blood clot pushing on nerves are different, much like a Gillian-Barre paralysis and a SCI paralysis are different. And I don’t think there is anyone in a rehab center who hasn’t said, “I’m going to walk out of here” (unless it is amputation, in which case, there actually is a decent chance they will walk out of there).

A meta-study I referenced in an earlier post showed that perky, positive attitude cancer patients had the EXACT same percentage of survival based on treatment as the "Fuck this and fuck you too!” ones. It isn’t the image able body people WANT, but it is the scientific facts. Motivation comes in a lot of different flavors and some of it is optimistic, and some of it is, “Damned if I quit!” – one makes the front page of the news, one does not (even if both end up walking – because society doesn't want to hear, “I thought the doctors were fuck-ups, I thought the whole system was a fuck-up and yeah, it hurt like an acid bitch spitting venom but damned if I was going to let someone tell me what I do. What am I going to do? Fuck like a rabbit! What did you think this rehab was for?”) Though oddly I remember them asking the oldest living man once how he did it and he said, "By smoking a cigar and drinking every day!" Hmmm, think that health book would top the charts?

Problem 3-10) Chronic conditions aren’t a ‘pause’ button and the more society reinforced that, the more invisible we will become. MacKenzie COULD hang with her friends; the fact that her friends were not hanging with her at the rehab center says something. The fact her parents or her never thought that, only, “Must walk again and resume the EXACT same life I had before this happened” and they are REWARDED for this, makes failures of every other person who ‘gave up’ (That IS what wheelchair use is depicted as in this story, in society – with the words ‘tragic’ lingering around there somewhere).

It was an unusual injury. She happened to get very fast, very good medical treatment and was in a very high end, and expensive rehab program immediately. That makes me happy. Is she a typical spinal cord injury, wheelchair user or paralysis patient? No.

What has she learned from this? About different types of SCI’s and paralysis? About different friends she made who use wheelchairs? About adaptability in her home? Who knows? Because if she has, that’s not what we, and all the other families and teens, and tweens are hearing. They hear, ‘Just be perky, and work hard and all will be well.’ Oh, if we only DID live in a world like that.

Sure, I had my denial too, and could have had a stroke, oh wait, I DO, regularly. Part of that is my autonomic failure, part of that is because I knowingly take risks which can and have resulted in permanent injury (though not massive stroke yet, whew!).

I cannot have a disease and then ignore it, and decide ‘I will do everything exactly how I want!’ – or I can, if I want to be in the hospital or die. It might seem like that but I don't actually do that. What I do is make all the preparations possible to avoid a negative outcome, I plan with the help of medically trained individuals to avoid problems and then decide what accepted level of negative outcome might occur. I do not recommend that people who live with long term chronic conditions be giant risk takers if permanent injury is involved (now if the risk is pain, and something new and maybe that things don’t go perfectly – well, I advocate evaluating and trying the things that are worth that risk).

An overwhelming majority of the TIA’s, seizures, strokes and other incidents have to do with that I have vascular autonomic failure. I just try not to live as if having autonomic failure means I have to go inside a sterile box every minute of every day. Nor do I give up (or wait to be 'saved') if systems fail and I need them to survive. Giving myself CPR by hitting my chest with my right fist to try to get regular heart beat is something I’ve done, and something I would do again (though due to lack of feedback now, it is unlikely I would feel that before I pass out). You have to do what you have to do. I continue to try to maintain the best possible health in order to achieve the best possible quality of life, so I can do dangerous and interesting things. Haha.

SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that. I hope that if I sneezed and was suddenly all better, I would NOT go back to be the same person, do the exact same things, with no awareness of disability issues. Speaking of doing what I need to do to survive, that’s why I have to go to bed. Because I need the energy to get better. And as Linda will very much attest, I am not always perky with a positive attitude.


Raccoon said...

I hate those stories.

JaneB said...

So frustrating, those stories! It's like the "my depression was cured by my dog" stories. Gah!

Sorry to ehar it's been a bad week. Take the time to rest, however dull that is - remember it's still a four letter word!

Neil said...

While I would be happy for the young soccer player if I knew her, the story about her is just more proof that the media has its collective head up its fundamental orifice.

But it fills the Good News quota for the day, I suppose. Now, if the Times Colonist were to reprint your blog, they might actually teach their readers something worthwhile.

Positive energy and zen hugs,

Baba Yaga said...

Argh. Yes, those stories are vile. & really, rather insulting to their 'heroes', 'though trying to explain that to anyone who doesn't see it is probably a lost cause.

Sorry about more-ill-ness. The 'no reserves' thing is a swine. However, there's growth: you recognise it for what it is, and have a plan for it. I hope the plan translates into 'some reserves' fairly fast, 'though I know it *always* feels slow.

And by the way (or, as Glaswegians have been known to say, by the way, by the way), thank heaven for an attitude which encompasses non-perkiness, or even anti-perkiness.

On that tack, I either recall or have confabulated that, as well as the meta-study you quote, there was also a study showing that a *too-optimistic approach actually had a slight negative effect on long-term survival of cancer patients. One could postulate mechanisms all day...

FridaWrites said...

I'm with Raccoon. I definitely know people who have tried and couldn't. It sounds here like she had some temporary cord swelling, not a irreparable break in spinal cord integrity.

When I was 11-12, I walked again like this girl, but it wasn't because of optimism (which I had) but medical condition. If I hadn't pushed myself as I did, I am certain my parents would have rightly ripped the adaptive equipment which at first was necessary to work my way toward sitting up, standing, walking away from me at some point and said, "try harder."

I hate statements that I just need to be optimistic or push or try a particular alternative remedy. My immediate family sees that there's a certain set point I can't push beyond no matter how hard I work. I used to point out myself that others had it worse--I don't know if to forestall their statement or what. Now I don't think many people have it worse; some do, certainly. But how bad do things have to be for someone to empathize rather than give a verbal slap? Worse than 98% of the population? Worse than one in a half million or a million?

My daughter asked two nights ago whether I had taken my dose of pain medicine yet. I didn't think my face was showing pain, though I really felt it, but she said it was.

I think it's easier for kids to be perky because they don't know any different--mom and dad will take care of them and the medical profession, as far as they know.

wendryn said...

Every time I read one of those stories I want to throw something. Society's general approach to a lot of things ticks me off, but this, especially, is bad.

I'm sorry it's been such a hard time lately. I hope it gets easier again soon so you can build up reserves.


cheryl g said...

I’m sorry the disease has knocked you around so much but I am glad you recognize the need to rest and regain reserves. I really disliked the article about the soccer player. I’m happy she’s recovered but I hate those smarmy, inspirational articles written from the AB prospective. I did like the points you made about the problems in the story. Chronic conditions aren’t a pause button.

SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that.

I love those lines! Brilliant!

rachelcreative said...

"SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that."

Oh now that is spot on Elizabeth. Very well said.

I was overjoyed to find a piece of reaserch this week which found that people with ME/CFS scored as high for hyperchondria and faulty illness beliefs (ack!) as people with a similar level of disability due to MS. Because with some invisible chronic illness it isn't just a sweeping statement that positive mental attitude will get you better but that subconcious negative attitude actally causes you to be ill. Give me a bloody break.

Squirrels or zombie days, sweetness and light or hell fire spitting mad - I'm here to read the full spectrum of life with EFM.

Lene Andersen said...

Stories like that make me nauseous.

You? Rest? That means either personal growth or the damned disease REALLY kicking your arse. Somehow, I fear the latter. Take care of yourself, my friend.

Bonnie said...

Perky Squirrel Survives Traumatic Brain Injury

After repeatedly falling out of his tree on top of his as a pup, Helmethead the Squirrel is once again able to run and frisk under the trees with his siblings and family.

"He always got right back up, every time he fell outta that tree" said Helmethead's mom. "I was inspired by watching my baby climb right back up that tree, even if he didn't have the sense to stay in it."

Friends say that it's so inspirational to see Helmethead thrashing around the park, zigzagging his way across 4 feet of lawn. "You can see he's not quite right, but he just keeps going. Jebus is using him to teach us a lesson!" said Helmethead's sister, Prayerbook.

"It must be his positive attitude" said another squirrel. "I'm really not sure what difference that actually makes, but it sounds good. I guess those squirrel pups that got eaten by hawks just weren't trying hard enough."

yeesh. yeah, my quadriplegic friend just didn't try hard enough, my ass.

Diane J Standiford said...

You speak, write, for many of us. Especially: BARF
I am sick of hearing how a positive attitude helps--duh, VS what? Killing yourself? Then yeah, agreed. Being in touch with reality and a positive attitude will not change reality, I yam what I yam. But I see it in their eyes at mt assisted living home---I am still in a WC, hence I am not trying hard enough. Well F them.

imascatterbrain said...

so tired of these soccer players and their positive attitudes! And the Paralympics were pared-down to ONE HOUR on TV today, so now I'm mad at them too!

But thanks for the Steampunk tip; the name of a book I mean, I only have the vaguest idea what the genre is, but I somehow think it would suit me.