Monday, October 17, 2011

16 hours: Hypothermia to climbing Moss Rock

Friday I had hyperthermia, where I woke overheated and unable to move my limbs or speak for some hours until Linda came home. Saturday, after posting the blog, I slept, but grew steadily weaker. My face had been what Linda called ‘Grey’ until at 11:00, then midnight, I simply stopped responding and was unable to be woken. My bed was piled with blankets but under that my body was getting colder and colder. I was in moderate hypothermia, but not out in the snow, but under thermal blankets from head to toe and still going down.

Linda put the pressure cuff on me and the squeezing roused me, though I couldn’t see. My diastolic pressure was dropping. So blood was going out but I wasn’t strong enough to bring it back. I then went into a series of muscle vibrations and shaking, not a seizure but like extreme cold whole body teeth chattering. I was able to eat a bun with some jam, about 270 calories. I had not eaten much for the previous three days, perhaps a meal and a bit. The calories allowed my body to stabilize the heat. By 6:00 am, though still piled with blankets, I was able to maintain a ‘shock’ state, of grey and mottled arms with goosebumps, but could eat.

I am glad I am not dead, I don't know why I started going down so quickly, perhaps because I had about 4 meals all week. The calories seem to matter more now. I felt like I was slipping away, that I was losing.

I don't want to be that, a cold body for Linda to find, but this time, she was able to bring me back. And I went right to work on postcards - see, they do matter, quite a bit.
I heard it was sunny out, and having not been out in two weeks, I went to Moss Rock, with Linda taking cocoa along. I have been having problems with my right knee as each step, the ball of the knee is pulled out of the socket and then snapped back in. With two ascents, I made it to the top of Moss Rock, where I went the first birthday I had in the wheelchair. The sun was nice on the face, and I could look out over Victoria and the trees changing color.

Going down was harder, but we rested and drank cocoa on the bench you can see below in the video. I returned back to finish writing the postcards I had help stamp that morning. And then have spent the rest of the time in recovery since then.

Sun is good. I am not sure what goal to set for myself now that I am clearly dying. I think instead of trying to be what I ‘used to be’ I need to look forward and enjoy what I have while I can, and when I can. The greatest limit (besides gravity) is the inability to imagine what might be possible. It turns out this was.

23 comments:

Neil said...

Great video, dear Beth. you and Linda make any scenic photo much nicer. :)

You're a full-time wheelchair user, but you insist on walking and climbing: you bring new heights to the term "Determination."

If I may be so bold as to suggest a goal, I would appreciate it if you would decide to die while living life to the fullest extent you can. Better to go out in a blaze of glory than wither away in a hospital bed.

However, as I have said before, I will not be overly surprised if you keep blogging after you're dead.

My wish for you tonight is that you and Linda be sleeping peaceably, with decent care for a change, and no pain.

Love and zen hugs,
Neil

Raccoon said...

NDY, and Neil and I are both still here, just like we said.

You know, there are online services now where you can have an e-mail sent to people at a later date – as in, you write it now, and they will send it on a date that you specify.

There is even one that uses snails to determine when it gets sent. A friend sent me one using that service…

I'm glad that you were still there when Linda found you. I'm not putting much faith in your caregivers. I've got a feeling that, if someone was going into cardiac arrest in front of them, they would call Beacon before calling emergency services.

Neil, that whole "withering away" business? Ain't gonna happen. I can see Beth trying to crawl towards another adventure even after. Yeah, blogging after death.

After all, isn't that the greatest adventure? Exploring the Undiscovered Country?

SharonMV said...

Dear Beth,
I'm still here too & glad that you are. Happy that you got to the top of Moss Rock.
Love, Sharon

Noisyworld said...

I love the final drawing in that video, it takes me back to my childhood.
You never cease to amaze me, keep it up- whatever it is you're fighting at the time :)

Anonymous said...

I think we need to be careful. I am a full time wheelchair user, have never walked a step in my life and it isn't because I lack determination. Neil I found your comment to laud Beth by slamming those of us who can't use a wheelchair and climb a mountain.

Kate J said...

Wow, that looked like some climb! I think you earned the cocoa, for sure. Lovely video. Wonderful you managed this, so soon after that awful hypothermia experience.
I do hope that you get to eat properly, it sounds like it really makes a difference. I can't understand why food doesn't seem to be a priority for those Beacon 'carers'...
Love & peace

Lorna, Bob and Liam said...

My gosh, you look gorgeous in that last photo - I'm so glad you were able to get out in the sun and fresh air.

Like Neil said... go for the blaze of glory. Alternately, peaceful and happy is good. If you could just be given the support to have either opportunity, it would be great...

Your comment about "looking forward and enjoying what you have, when you can..." I think is the single most peaceful thing you've said in a long time. My wish for you is that you can hold on to that hope for as long as you need.

Much love,

Lorna, Bob and Liam

Elizabeth McClung said...

Anon: Not all wheelchair users are the same, nor are all SCI's or others who use wheelchairs. I think anyone who is a multiyear full time wheelchair user with loss of muscle groups, nerves and spinal injury who rock climbs - or anyone, with neuropathy, diminished joints, spine and other injuries (such as Cheryl, who climbed with her own cane) to be Determined. I find that Determination is a good thing, whether it is finishing a distance not done before or trying out new ways to expand the self, athletically or not, wheelchair or not.

I climbed it because I was determined...and perhaps a little stupid. Dogged as well, since I could not reach the top 4 years before. A wheelchair is a mobility device, and so is a cane.

wendryn said...

Wow - sounds like an extremely harrowing day! I'm really glad you got to get out and do something you hadn't done before.

My grandmother kept saying she was going to keep living until it wasn't interesting anymore. I get the feeling you have the same approach. She had the same name you do, too... :)

*hugs*

cheryl g said...

That bout of hypothermia certainly told me your body had no reserves left after the poor care and lack of food of the preceding week.

It was beautiful at Moss Rock and fun to get a bird's eye view of Victoria. It felt good to soak up some sun.

Raccoon said...

Anonymous, I am also a full-time wheelchair user, although only for the past 14 years. I found nothing wrong with Neil's statement. For Beth, this was Determination. Her doing the postcards? The Fox 5K? Determination.

I see the same Determination in the people that I see at my gym: a person with SCI whose arms are so locked up they are practically useless; a woman who had a stroke, now walking with barely a limp.

Determination is not so much the making it to the top of the hill. Determination is trying something that everyone else says won't/shouldn't/can't be done by you. And trying it again, and again, and again. Not necessarily until you succeed, but until YOU determine that you can't do it AT THIS TIME.

I've seen video of a person in Las Vegas who, in a manual wheelchair, can do a flip. I've seen video of a person with SCI, climbing a mountain. Scuba diving. Skydiving.

Not for everyone, not for me. But, for all of them: Determination.

Anonymous said...

OK, I thought this was a disability blog. I came here as it was recommended for me. But if you don't understand that continuing the myth that we, as disabled people, are simply lazy and that we could walk if we were determined is hurtful then, I guess there is no explaining. I do not object the the idea that people have varying disabilities adn varying needs but "full time wheelchair users" are "full time users". They aren't those who can decide one morning that, "Hey, I'm going to climb a mountain. And then get up and climb." You may all want to have the view of "disability as an optional life experience", you all may want to beleive that "oh, if disabled people really wanted to they could walk." But then that just makes you like everyone else, those that want to promote the idea that disability can be "cured" by pluck and by prayer. Don't worry, I'll leave you alone in your idol worship here.

Kita said...

Anon, I dont think anyone was slighting your experience. We were just saying that Determination is what Beth is about - for her, the ability to climb a mountian or a hill or even the stairs is a wonderful thing that taxes her beyond belief. There is no 'idol worship' as you so callously call it - Beth is our friend who has documented her life and dying with clarity, wit and humour. We cheer her on when things are tough and hug her through the bad times. We realise that our experiences are not your's or Beth's and we still will cheer Beth on, long after you have left in a strop. It is a shame you cannot find it in your soul to stay a while and possibly learn something.

Beth - great to see you on top of your mountian. So sorry you had the bad days, but to see you having a good(ish) day makes up for it! And I agree with Neil - go out in a blaze of glory! Do what you love and die doing it - it's the only way to go really!

Lots of love to you both, as always. <3

Diane J Standiford said...

My oh my. I can't rise from my lift chair without help. After years of reading your blog, you are full of surprises. Please do post more videos during your trips. A "good day" for me is being able to LIFT my guad cane an inch. My determination level must be very low. I agree with Neil, I will not be surprised if you are blogging after you are dead. Zen hugs.

Elizabeth McClung said...

Diane: I remember you doing a project on standing and walking for a long while. It was very helpful to remember when I was doing my standing practice, or the elipical practice (an advantage of those is the bars to hold most of the body weight up, which I used for long weeks, in which I had very sore ribs) After this one, I think my knee-ball joint is gone so that may be the end of it. I am with Raccoon that it is trying until it is enough for the person.

Anon: You may not realize it but your statements are ablist and while 'walking' may be a hot topic for you, and crawling or dragging yourself by your forearms isn't (or maybe that is too?), it is ONE activity, and hopefully when you have worked through your issue, you might read some of the back entry's which talk about how disability isn't really up there on the career choices. But then, in the USA and Canada, with over 100,000 newly disabled, I guess 'missing a limb' wasn't either.

"oh, if disabled people really wanted to they could walk." - Except the majority can, unless all amputees are supposed to fall down, those with CP are not to use arm braces, or just walk, Spina Bifida are not to hop, EDS people should stay in one place, JA and RA should just sit......and the list goes on. This is what I mean by abilist thinking. Blue badges are for people with disabilities and Goldfish has written about the problems of how the wheelchair is a misrepresentation of that - even for those who need closer access because wheelchair users are not the majority, just the one of the most visable.

You don't object to disabled people having varying needs: hallelluah and pass the peanut butter, cause I need a sandwich. I saw a high Quad, doing a sandwich which took 20 minutes. I have to admit, I rarely want a sandwich that badly, though I can do lots of nifty tricks with my teeth! But you feel a 'full time wheelchair user' should not walk. Okay, I had a discussion about this with a devotee/wannabee who said he was a 'full time wheelchair user' except to walk his dog every night because 'it would pull me from the chair and not practical; and also those times I need to drive somewhere; and DIY' and I said, 'Yeah, that's why you don't REALLY want the wheelchiar life, because often you can't have a dog unless you figure out a way around that - I can't for those very reasons.' (oh, and I still can't, because every time I do something like this, it takes about a week or three to recover). But then a significant number of SCI's CAN walk a few steps, Dave Hindsburger, a full time wheelchair user, and blogger on disability, you can read, walked into his office for several YEARS after his accident so no one at the office would know he was a wheelchair user (and describes how because he could not make it to the lunchroom, or bathroom, everyone thought he was a curmudgeon, so he decided to 'out' himself). I don't know what the obsession on walking is, honestly. And now I am about to say again it took me over two years and lots of time in the gym to do what I do, plus a specialist to say that it either wasn't THAT dangerous or he just didn't care (or didn't expect me to take his statement of 'standing is okay' to the lengths I took it). I wear support boots to hold my tendon's and ankles in place, as, since I can't feel the feet, ankles, lower legs, knees and part of the upper legs, and hips, it is a balancing act. But also means I end up with very large blisters after working out in the gym because I forgot to change socks.

For me, getting up the hill from the front of the courthouse to the top in a wheelchair is still the hardest thing I imagined, and took lots of attempts. I don't know your life, but please, don't attempt to assume mine and then expand it to everyone (a disservice to me, you and everyone, I think).

Anonymous said...

My comment was about a comment, not about what was written on the web site. I am NOT obsessed with walking. Your rant about people with CP using arm was nearly bizzare. My point isn't about walking, it's about saying that disabled people could walk if they enough determination. I challenge myself and have the courage to challenge you. Don't assume I'm all wrapped up in your life because I don't even know you, and never heard of you until my friend said, for me to discover the disability community on the web, and recommended you. The first thing I read is: You are a full time wheelchair user, but you insist on walking and climbing ... blah blah ... determination. I felt stunned. I face that kind of attitude all the time. If I wanted to I could walk. Here in the US people on the right believe that most people with disabilities are lazy do-nothings that lack determination and sit on lazy asses eating up tax dollars. I understand that this opinion isn't welcome here. OK, I'll stop.

I do want to apologize for the 'idol worship' remark, when I read it over even I didn't understand the point I was making. I tried looking up the guy you wrote about, could find no such person.

Don't know how to put a name to this and don't like being anonymous. So I'll just sigh this one and get myfriend to show me how to better use the comment machinery.

liZa

Elizabeth McClung said...

Liza/Anon: arm brace is another term for specialized crutches, which some people with CP use. We are having a dialogue, which is good.

If you are getting hassle about walking from people in the US, yeah, that's a crappy way and a simplistic way to deal with things. When I first became a wheelchair user a few times after doing the national olympic fencing circuit, I went to go do wheelchair boxing from Ian Johnston, who had taught another woman, and won the golden gloves as well as other awards as a boxer. This meant I had to wheel PAST my coach to go through that room. First comment was, "Why don't you get up and walk, are you lazy?" - hurt me emotionally very badly.
Next week: "You super lazy and must be stupid, your muscles are atrophying"
Week after week about why aren't I walking. Not once a question about where did I got for 3 months and why am I in a wheelchair. Painful, yes, typical, also kinda.

Dave Hingsburger writes Rolling Around in My Head and is in the Disability Hall of Fame for his work BEFORE he got disabled (I think Neither Terry Fox nor Steve Fonyo got in the Hall of Fame, as it rewards those who are already paid to work with, rather than those who have disabilities).

You do have courage to challenge me. However, as you point out, your problem isn't with me but with someone who has read for years and watched the ups and downs of my life. Did I think putting up pictures of me walking would be controversial? Yes. But then, that's why for years Wheelchair Dancer hid that though in a wheelchair dance company, she was not a SCI, did not have a diagnosis and could walk (how much of this is true now, in terms of walking and diagnosis post her hip operation I don't know). The truth of disability is complex and I have no intention of being held up as a stereotype that ALL wheelchair users can walk any more than I should hide what I challenge myself to do and have succeeded in doing because it goes outside the mental box of stereotype.

Elizabeth McClung said...

Liza: You might find Diary of a Goldfish's 6 posts over the last couple months on The Disability Hierarchy of interest. There are also blogs that are more political in nature, in terms of US politics, perhaps someone can recommend a good one. I tend to find them incomprehensible as right and left to me are directions or hands or ways to face.

Anonymous said...

All I have tried to say, unsuccessfully, is that walking or not walking is not determined by "determination" or "will power". That's all. Yes, disability is complex, but this issue isn't.

liZa

Baba Yaga said...

My goodness, Beth, your life's ups and downs are something extraordinary. I've been quite unable to find any words to express the jaw-dropping horror.. Or to think how to help - would a supply of something like muesli bars help???

I'm glad you made it up your Rock. And very pleased to read this: "I think instead of trying to be what I ‘used to be’ I need to look forward and enjoy what I have while I can, and when I can."

Yes! I think this is a very important part of living, not just with physical illness and disability, but any of the myriad limiting conditions life imposes. And agree with whoever's representing Lorna, Bob and Liam that it has a peaceful ring; which you have very much earned. (Not that I think peace need be earned.) It's good to read.

LiZa - oh, my, you've suffered at the hands of Those people, haven't you? I'm sorry: there are too many of them about, making life harder than it need be.

I think all Beth's 'regulars' would agree with you that determination does not determine (heh) ability to walk. If the mechanism doesn't have the functional ability to do it, then determination won't make up the gap.

If you technically have the functional ability to do it, but only at the cost of further damage to the mechanism - then most sane people would think that determination shouldn't make up the gap, and that the ability is rather hypothetical than actual.

Beth isn't the least bit sane. 8-) She's also dying: being willing to bugger up a knee to climb a rock for the last time isn't the same equation as being willing to bugger up a knee she'd have to live with for another 20 or 50 years.

In Beth's specific case determination did very much determine her being able to put the very small ability to walk that she has - or perhaps had, before she used it! - left to use. I suspect that your view and Neil's are entirely compatible, and that if people didn't so horribly misuse words like 'determination', 'willpower' and 'motivation', it'd be possible to discuss these things without causing hurt.

As it is, people misuse them, and they can be very hurtful indeed. It's well to discuss these things. But I hope you can trust that no-one here for a minute thinks ability and willpower should be confused with one another, or that what one person can do should be used to decide what another can or should do.

Lorna, Bob and Liam said...

Liza,

I'm sorry your experience of labelling has been so bad - and more to the point, so typical. We get that the issue of "disability is just an excuse for not trying" is a horribly prevalent one.

If you are new to this blog and haven't read backstory, I can see where you'd think what you did... but Beth in fact has been a prolific and passionate writer about the very issue you are describing (in particular, the holding up of people who "overcome their disability" as idols and role models, which has the net effect of making temporarily-abled people think, well, why can't *everyone* do that? The rest must be lazy, etc etc).

Please understand that this is also a very emotional time on this blog - in case you haven't read many entries, Beth is DYING. That doesn't make her perfect, nor does it confer perfection on the regulars who post on here. But this isn't maybe the time or place to react to one emotional and supportive comment on one blog entry and paint this whole community with one big (inaccurate) brush. While part of Beth's purpose in creating this blog was to promote disability awareness and understanding (among a number of other reasons), it *is* Beth's blog... and we're trying very hard to support her and those in her life during an extraordinarily difficult time. Please don't kick us when we're down.

Please, please... stick around. Keep reading. Do some back reading. This is a very supportive community and one that, I believe, really does *get* what you're talking about.

Blessings,

Lorna (who is the "voice" behind Lorna, Bob and Liam)

Lorna, Bob and Liam said...

I don't know whether to laugh or throw up. I just went back and reread my last post and realised I had used "ableist" language by asking Liza not to "kick us when we're down."

*sigh* Sorry. Let's try: "Please don't attack us when we're are at such a low point."

Lorna

Neil said...

Dear Anonymous Liza: I hope you’re still here, and I'm sorry that my comment offended you. Please be assured that I was not making any generalized statements about wheelchair users. However, I will generalize now, and say that almost everyone who comments here understands disabilities, or is honestly trying to.

For Beth to do what she did is, to me, amazing. And for you to apologize later in the comments is, to me, a sign that you can be a reasonable person. :)

Liza, I'm not disabled (yet; I probably will be someday), but I am a first aid volunteer, I worked three years operating a paratransit school bus, and I do have a small clue about how much determination you must must need every day. I have also sat in a wheelchair and rolled throughout my current workplace to find out how accessible it REALLY is, and how I can help people where they need help, without hovering over them.

My other generalized comment is, "How the hell do the engineers who design streets expect people to wheel around cities?!?" THREE curb cuts at an intersection with four corners? Road crowns over a foot higher than the sidewalks (with a slope far greater than than allowed in ramps)? Snow crews that plough 2-foot-high windrows across the existing curb cuts?? Put the urban planners in a wheelchair for a week each in summer AND winter and make 'em wheel around their creations, THEN you'll see better road design. Okay, end of rant.

For me, walking five km isn't a matter of determination (except maybe when the wind chill is -55ÂșC). Walking 5 thousand km would be, For Rick Hansen (sorry, Beth, and yes, I did meet him in the late ‘90s), I would argue that wheeling around the world was a matter of determination. Yes, lots of support, but it was Rick who pushed those wheels... For Liza, walking might not be "just" a matter of determination; it might be impossible - please note that I'm trying not to judge or assume here.

However, Elizabeth "Not F---ing Dead Yet" McClung is, if you'll pardon the term, special. She used to walk, mostly can't now, and for her, walking apparently IS a matter of determination. Actually, for Beth, staying alive seems to be a matter of determination.

Now, hugs and kisses all around?, and let's move on.

There’s a goal for you, Beth: stay determined, and die while LIVING!

Love and zen hugs to everyone,
Neil