Tuesday, September 23, 2008

The Terry Fox run/walk/wheel: I AM a survivor

I am a disease survivor. I had always rejected the word “survivor” because it seemed to me that people were trying to pretend that something was over when the effects lingered on, had changed them. Or they were trying to tell themselves or me that we had won a fight that wasn’t even about us. How can you win a fight against a cell which doesn’t die when it is supposed to and replicates? How can I fight against my own autoimmune system which protects me (and is now killing me).

When therapists and others would say that I was a sexual abuse survivor it would make me angry, “They went away!” I would almost shout in anger. I know what surviving IS, what doing what is necessary to pay the rent that month IS, or what living homeless in the woods is like because you don’t HAVE the money. That is survival. A guy or guys leaving your body because they are bored isn’t an indication of MY survival, at least to me. They could have kept torturing and fucking me OR they could have cut my throat OR they could have walked away to find someone else.

So I didn’t get it. I wasn’t saying other people weren’t survivors, I was just saying I wasn’t. Though I did have a problem when we label things with fight words when they are a part of us; you won the war by cutting off part of yourself, and that makes you a survivor, a victor against….your own body?

I am sorry if that offends anyone, which is not my intention, but I need to show how I think to show the change in thinking. I will still probably start laughing if someone starts referring to themselves as a “flu survivor.”

I did the Terry Fox 10K because Terry Fox has always been my hero ever since childhood. It was a beautiful day, perfect cool sunshine by the ocean. At the race they played a clip which would make you think Terry Fox started his run in Ontario instead of 1500 miles to the east. The days of sleeping in the van, eating out of the van, sleeping in the van. How they only got a hotel room was because the owner of the hotel’s son had cancer. How he was splashed, honked at, yelled at and almost hit by cars. Terry Fox was a nut. And every country at some time has their lovable nut. He happens to be Canada’s. And he was a lovable nut who had the official support of the Cancer Society of Canada. And he wanted to raise $1 from each person in Canada for Cancer by doing his thing, which was running across Canada. As I sat there in my chair and they played the tape it said, “When Terry asked to be taken to the hospital, the Run of Hope was over.” And I vehemently said, “It was NOT over.” Which got a few people looking at me. But it is a very important point, one which the people who do all the fundraising didn’t get. Terry was asked by many famous people if they could continue his run and he always replied, “I WILL go back and run.” Or “My run is not over.” Even in the hospital he maintained that he would go back and run again.

I couldn’t put it in words at the time but doing the Terry Fox run/wheel/walk with my friend who has crushed ankle and vertebrae enlightened me. I started the race beside a teenage girl and her team, she had what I believed was childhood Leukemia, and during the race gave the nod to a guy in his wheelchair. Racing I passed a man with a plain grip/hook hand prosthetic, and another with crutches, who had an amputation so high up the leg it was to the hip, who took over an hour on plain hospital crutches to do the 5K. He told me as I went by “ya got to use the momentum.”

There was in the eyes of people there some sort of understanding. We knew each other. We gave each other the nod. Yet what was it that we understood? It was the connection of someone who had been in the same war. The nod of people with the same attitude; which like Terry Fox, that they probably shouldn’t be here, like the woman holding on to her wheeled walker. They probably would, if they asked, be advised against ‘stressing themselves unnecessarily, particularly after what they had been through.’ They know the voices of the people who will never get it, who only see a 5K or a 10K as stress against a weakened system or strain on a healing amputation. Like running 22 miles a day and sleeping in the same stinking van.

See, I was putting the wrong emphasis. I thought people were (and some are) saying, I am a SURVIVOR. Well that day, the people mixed among those who were raising money were people whose life and attitude or who knew people who chose to state with their choices and actions, I AM a survivor. What is the difference? The first is the statement of someone who feels that what they feared or which attacked them is long gone, never to rise again. They are the victors, and the enemy is vanquished, they are SURVIVORS.

Me? I’ve been broken too many times to ever say it like that. And over the last few years I learned that it isn’t the disease you have, it is the way you live it. Neither I nor any of the other people whose recent or remembered experiences with cancer or other diseases who were there that day believed they had won, or that cancer would never return. They were not there to be plucky, or inspirational or courageous. And neither was Terry Fox. One of my favorite quotes from his is when he asked publicly for able bodied people to NOT run with him because while they were jogging, “I am running as FAST as I CAN.” That is what the man on crutches and I both recognized in each other, that neither of us deserved pity, or sympathy nor were we courageous, we recognized that the other was simply going as FAST as they COULD.
I AM a survivor. I AM because I choose to live my life in a way that gives me the best chance of survival but also because I am the one determining how to live, not my disease. At the Terry Fox run/walk/wheel they put a note on my back: "Pour water over and put in a cool place; do NOT heat and call....." With some help from my friends I will continue to determine how to live, and live as large as possible until I die: whether that is doing a little sexy dress up photo shoot until I have to be carried inside or trying for the last time possible this year to visit what I had set my mind to visit without even reading about it: the Hoh Rainforest. I wheel outside even though I cry from the pain; I exercise though I can’t sleep (from the pain) because I AM a survivor. And this society is not set up, not particularly ready for survivors. That is why the Terry Fox 1K/5K/10K is so important, because as people on bikes and children on tricycles go next to people walking with dogs, people in wheelchairs, on rollerblades, on horses, jogging, walking, with walking sticks, with frequent breaks, however they choose to reach their goal. We started at Mile Zero, the goal that Terry Fox never reached. But that’s what the Terry Fox run/walk/wheel was for me, an event to spread the word, once we accept that people have different impairments and different ways of reaching their goals, can interact together, can enjoy an event together.

And for me, I recognized a part of myself in seeing it in the mirrors of others faces. I AM a survivor because I choose how I will survive, how each day, week, month and goal will be spent, not the worriers and the non-sayers. I have been in the belly of the Beast and I have the beast inside of me. That is what every one of those faces said, they said, they KNOW that cancer or other disease will come back, that they live WITH that fact, and it is their living which marks them as a survivor.

Today, meeting with a “pain specialist” who told me both to “live within my pain” and didn’t GET IT, he didn’t understand my level of pain; not believing that I hallucinate from my intensity of pain. Indeed, he stated that he didn’t want to give me something like morphine (which would take my pain away) because it might give me constipation and I must have enough of that using the wheelchair. Fuck doc, removing all my pain for CONSTIPATION? I will take that trade any day. He said this exercise thing had to go, that I needed to sort of just sit at home and “learn to live within my pain.” I asked if he realized I had a degenerative terminal disease and he did. He said with a stern expression, “Those 10K’s definitely have to go!” and then talked about cutting badminton in half if not less, though I explained three times about how if I do NOT exercise, it will kill me faster. I just smiled at him while I determined to FIND a 10K this weekend and ENTER. He thought he was getting me ready for surviving what was coming. He wasn’t one of those who know that the quickest way to kill me was to kill my dreams. That what makes me go from seizures to badminton (or type, as I did yesterday with thick gloves on because four fingers had frostbite – and yes, I know that’s not logical, welcome to autonomic failure land).

I am not a person who puts themselves forward to represent a society or organization. I do wish people would fund things like depression which kills one person every seven minutes in the US, and I wish there WAS a 10K I could do to fund stopping sexual abuse (if you think the breast cancer numbers are huge, wait till the stigma of this race falls off and people show up). Yes, I want to raise money for stopping sexual abuse. I want those who are under care not to have the threat of receiving emotional or physical abuse and/or neglect and have no one care. But I believe these are things that anyone innately should be working toward, a world that makes only the best logical and emotional sense. So as odd and as selfish as it seems, I struggle to remain a survivor because then I can be there for people having a hard time, be someone who they can email or talk to, can be a person to send a card or gift.

For my races, I needed a shirt for people helping me to see each other easily. Laura sent these shirts, for those who help me at an event. This is the symbol on the back.

The shirts and seeing Linda and Cheryl and thinking of Laura I remember why I survive. Because I can reach out and do what so many seem to have forgotten, that it is not large organizations which make a difference to an individual, but rather another individual. Those t-shirts are living proof. I did the 10K becuase of three people, individual people who reached out. Linda and Cheryl have created a blog, if you want to look at it, called, A Girl's Gotta Fly.

Today, I had two specialists who could have made a difference. Both failed. I don’t want to fail, and though I have little income, little strength, and other significant obstacles, I want to be there for you. I want to care about you, because that is what was given as a gift to me, and is, almost every day. You want a post card, you know what to do, haven't got a postcard in a while, let me know (geez, I HAVE brain damage, so give me a hint now and then, okay, I'm not ignoring you).

If I had to make an event, I would make it like Terry Fox did, as inclusive as possible, with no winners, but equal participants. We were there with different mobility’s, different motivations and that was possible because one person inspired another person and where Terry Fox was not an organizer, the head of the Four Seasons was. He got the Marathon of Hope run/walk/wheels organized and keeps the dream alive. What dream? That if you want to do it, just because other people don’t understand that, or care, you still can. I was at that 10K not because I could get myself there by myself but becuase another couple people I knew could. And they wanted to keep my dream alive. So if I am here next year, I will do it again, whether it is in a hospital bed with a motor attached; because I AM a survivor, dying, yes, alone, no, a survivor.


yanub said...

Beth, you look like you are having the time of your life in those pictures. I hope you do find a 10K for this week, or next.

That doctor is an idiot. Yes, another idiot doctor. You should tell these wankers to read your blog if they want an idea of what you are going through. I'm also incredulous that he assumes you would stop having pain if you would stop being active. You know, dying would also solve that whole pain thing, too, but that isn't exactly practicing good medicine to encourage that. And besides, you ARE a survivor.

cheryl g said...

Beautifully written Sis. I have always thought that simply failing to die isn't really being a survivor. Surviving is more than that. It is not only not dying but continuing to LIVE.

So there is chronic pain, or muscle/joint weakness, or heart erratics... if you want to do the race (5K, 8K, 10K) then do it. When I was telling people I work with about our plans to do the Terry Fox run they were appalled. "It could kill her" was the most common remark. They just didn't understand when I pointed out that for someone who is terminally ill that is a poor reason not to follow a dream.

I am glad that I got to do the Terry Fox run/walk/wheel with you. Now on to the Breast Cancer walk.

cheryl g said...

If it hurts don't do it... well it hurts to breathe Doc what's your answer now...

I am so flabbergasted by the idiocy and lack of caring in what passes for medical professionals in Victoria.

Raccoon said...

I hate the color -- it's just not natural -- but they understand the reasoning behind the T-shirts. And I love the print on it! Someone did some nice work.

When did you say they went on sale?

Elizabeth McClung said...

Yanub: Thanks, I was actually very emotional but luckily, "punch, punch, punch" keeps one occupied. I hope I do too - the breast cancer 5K will be soon I think as people talk about it.

Yes, I know another idiot doctor, oh well. He was more interested in that he had a real life person with marfans, a female too - and kept interuptting me talking about pain to say, "Open your mouth...yes, that is definately the arched palatte!" - nothing like having your pain doctor distracted by treating you like a freak - tried to get me to stand so he could see how REALLY tall I was. Odd.

True, and when I am in extreme pain I point out that whole dying solves my screaming problem.


Cheryl: See, I thought you would beat me up for showing so many pics of you. Guess we are both survivors, take the hit and live anyway.

Yeah, I mean, going out of life by the beautiful beach and ocean is NOT exactly the worst way to go, I remember when we tried recusitating a guy who had a heart attack a few hundred feet from the peak, was leading another group of hikers, was a lifetime hiker. He didn't come back but Linda and I felt, being there, hiking, the peak in front of him, was the way he would want to go.

I should have used that - it hurts to breath! Now what?

Raccoon: True: it is a unnatural colour, I think so the people can see each other and I can see them from like 2-3 km away and they said people did ask them what team they were on. But for normal wear there would need to be something else, what do you think, Blue? Maroon. I think the person who did the design said we can sell them but Linda and Cheryl are doing that part on their blog. Linda was wondering tonight if it is worth offering it, I don't know what would be best, T-shirt, tank top? Anyway, if you come visit me, you can get one of the team ones Free, I still have some here for anyone who does pit-crew duty, even if you participate in the race itself!

Anna said...

Great pictures.

rachelcreative said...

Great post Beth. Wonderful. Thank you so much.

Anonymous said...

What makes you think that comming to the US would give you different results? Like our systems isn't stressed enough by outsiders. You sound like you are Dr shopping. Keep going to then next one until he gives you something you want. Maybe if all of these doctors are telling you the same thing, it's for a reason. Sorry to sound so harsh but it pisses me off sometimes when people who live in the states have to wait to get in because our doctors are being clogged by illegals or outsiders.

JackP said...

What Cheryl G said.^^^^

You could take the option of 'living within yourself' and allowing your life to fade out. That is 'surviving'. It's about just coping for as long as you can.

But you're choosing to LIVE, as hard as you can, and how you want to - "I am the one determining how to live" - and that's not just surviving, it's LIVING.

And to choose to do that despite the difficulty - well, that's the "Screw Bronze" attitude we know and love.

You're not a 'survivor', you're better than that.

Perpetual Beginner said...

Those are very cool T-shirts. It would look lovely in blue. If you made it maroon, you might have to change the color of the figure to make it visible - and I like my black-winged goth girl!

Grrr, to your pain specialist. What is it with medical specialists in Victoria? There are idiot doctors everywhere, granted, but Victoria seems to have them in spades. Unfortunately it's very hard for a hospital to get rid of a doctor for anything short of gross malpractice (and sometimes even then). I only know of two cases where a hospital did fire a doctor - one for embezzlement, the other for being so horrible to work with his staff kept quitting (100% turnover a year for multiple years). Neither one was someone I would want for a doctor, but patient care (or lack thereof) never came into the hospital's firing equation.

I'm a little puzzled by the no morphine because it causes constipation decision. Doesn't lack of exercise also worsen constipation? But he seems completely on-board for that choice, even if you don't want it.

Pfft. Cheryl has it right. It's about more than not dying for as long as possible.

Lene Andersen said...

Seriously. Do all the incompetents in the medical profession get exiled to Victoria? What a ninny! Constipation can be MANAGED! GAWD! I thought pain specialists wer ethere to help you get the pain down to a dull roar so you can lvie your life, not tell you to sit quietly and suck it up??? I'm feeling ver confused. And angry again. IDIOT!

That said, you look awesome. Great pictures, great post. Love the t-shirts, would definitely buy one. Not dark colours, though - it suits Goth Girl, but brighter colours would show the image on the ack better.

Neil said...

Unnatural colour! Pish and tush; that shirt's a wonderful colour! It is VISIBLE and that's what it's meant to be.

If you and/re Linda and/or Cheryl are willing to spend a bit of time, cafepress.com would sell the shirt. As an example, see http://www.conalscorner.com/ , which is the cafepress store of a first aider in the SCA (we're called Chirurgeons, to keep it sounding medieval). Cafe Press can put the design on shirts of many sizes and types, mugs, plaques, clocks, etc.

Laura: it really is a lovely shirt, but the design is what makes it so. My hat's off to you for your artistic skill!

Beth, today's (24/09/08) Bizarro cartoon is for you: I get it daily on the 'net from http://seattlepi.nwsource.com/fun/bizarro.asp

And if it hurts to blink, to close your eyes, are you supposed to stop letting yourself blink? Quacks, all of them.

I've told Linda, and I'll tell you, your wife's blog is perfectly named. Linda is very special; treasure her. Actually, I'm fairly sure you already do.

A VERY impressive design... But the shirt should be gold. I'd suggest gold on the wings but that would get expensive to produce.

Beth dear, you live as best you can, the way you want to. If someone has to pull you out of your chair in the hall of mosses, and can't revive you, well, that's as good a place as any to die. And far better than in some arsehole doctor's waiting room.

Love and hugs,

Dawn Allenbach said...

Dammit, you made me bawl like baby. Those shirts are fucking amazing. I want one (a T-shirt) in anything but neon. What's YOUR favorite color(s)? THAT should be every day wear color. And there should be an option for logo on front for wheelies with long hair.

Veralidaine said...

That is a gorgeous design! Beth takes flight. I too hope you find a 10K this week or next to enter. After all, Victoria's best first-aid tent reviewer can't leave her readers in the lurch. Inquiring minds want to know: Will the nitwits pour ammonium nitrate on Beth again, or simply ignore her as she passes out in front of their tent?

Maybe you should give some dayglo shirts to your doctors and talk them into running with you next time. I would be delighted to see them gasping and panting and collapsing as you press onward.

sly civilian said...

damn. that sounds like it was a tough race, and well worth it.

very proud of you for that.

yanub said...

Oooh! Another anonymous coward at 5:29. Elizabeth, pay no mind to this creep. Some people thrive on being hateful, and this is obviously one of them.

cheryl g said...

Hey anonymous... please go away. Stop attacking my family. It is not doctor shopping to try and find someone who will actually treat anemia or provide pain relief for improved quality of life. It isn't looking for a different answer, it is looking for any answer other than "sorry, not my inch..."

I have held Beth as she screamed in agony because the pain is too much. I have sat vigil wih Linda as the pain causes hallucinations. The pain is very real.

As for your concerns about "outsiders" clogging the US medical system. Our medical system primarily provides care based on who can pay. The specialist clinic we are going to try in Seattle does not have a waiting list. No one is going to not get treated because Beth is a patient.

Sounds like you need to address your issues with the doctors who are putting you on waiting lists rather than attacking someone who just wants to be helped.

Anna said...

For anonymous. Well, sometimes doctor shopping is the only thing to do. And sometimes it has to be done in different countries.

I spent like ten years trying to get help for a hormonal imbalance. Well, the problem wasn't me or sadly the doctors at the ordinary hospitals either. The doctors just didn't have the knowledge to treat me. So I went private and payed a lot and did get some very useful informaion which helped me help myself. After ten years the "ordinary" doctors had gotten to similar conclusions, and I got help from them. So, sometimes you just have to keep on searching for help in many different ways.

If you have any good suggestions about doctors in Canada maybe you should give them to Elizabeth instead of being negative.

Sorry, Elizabeth just wanted to say that.

I am probably too selfish and poor to send you money at the moment, but I will keep on reading your blog. And a christmascard might be on it's way soon.:)

Elizabeth McClung said...

Anna: Thanks! I can't claim any credit for them, so Linda did good!

RachelCreative: Thanks, I think it is true or can be true for all people whatever thier illness/disability, but I tend to have a "different perspective".

Anon: I think you have it backwards, aren't you supposed to be a Canadian complaining about how Yanks are stealing our doctors from actual care into going south and being rich (which is why we have so few specialists), and how the Americans who vacation or willingly come here drain our social medical net. I have never heard a complaint from a doctor who will be paid four figures for a consult and basic tests that they are being "stessed" - also I am an American citizen, though I know that some aspects of the US can be Xenaphobic, not all outsiders=bad. And I am not sure what exactly I am supposed to accept: That I don't have Arthritis? That I have a terminal illness and I shouldn't bother treating the symptoms? Or that extreme pain is good? Also isn't medical shopping the perogative of any patient, particularly one in the US, which is why the Mayo and John Hopkins and Chicago exist so that if needed, and desperate, you CAN fly to a series of experts.

Odd that you read the whole post and what you got out of it was, "Don't come to the US you outsider, just shut up and accept what you are being told." Well, when your able bodied status changes, I think your perspective will too, and you will realize that Doctors are just as human as you and I (just less prone to be contradicted at work), and try to find one that works in synch with you. Until then, "Stay out and shut up" really isn't very helpful unless you choose to self apply it.

JAck P.: I get what you are saying but I don't think that is surviving, that is just bunker mentality isn't it? But it is true that most just focus on the coping and I feel like I try, or hope to try to focus on the outside, the possible, the impossible the why not try and see if it is possible.

Yes, on Good days it is Living, and on bad it is planning on how to Live. Thanks, I just never felt like I could wear the badge of "survivor" becuase I didn't, I just got by, now I AM a Survivor, even if ironically, I won't. Gosh, I wish I would though.

Perpetual Beginner: ah, thank you, yes maroon would obscure the image, better in blue.

I really don't know doctor wise, I mean, I think for many of the people with chronic pain he is a very good doctor who takes them slowly step by step up the options as they have increasing pain. The difficulty is that seems a) to know I have MSA/AAN and not care what that means and b) is not capable of altering his methods to deal with someone whose pain changes in 2 months similar to what another of his patients my have in 4 years - ergo, not a person used to dealing with pallative pain issues. I seriously doubt he has, for example ALS patients and tells them with months to live that he isn't going to give them pain pills in case they get constipation. As for the other specialist, she was IN the Victoria Arthritis Center and I think was confused as to why I had been sent to her at all. I may need to go to oncology or somewhere that is used to seeing pain, which is rapid and caused by nueral, muscular and other degeneration.

Well, if I had fibro of CFS, then the whole, "Learn to live within your boundries" and "you need to exercise but not so much that the pain of it takes over your life" makes perfect sense. But I don't have Fibro or CFS and I don't think he HAS another script.

Lene: Well, unlike Vancouver or Toronto we have minimal hospitals for a huge population, we have no teaching hospitals or research centers so only doctors who want to be in the sun and spend more time OUT of the office tend to come here, or those who I guess can't find a spot or cut it at the teaching hospitals, research centers or otherwise. I mean, if the neurologists was great at motor neuron diseases, they would AT the motoro Neuron center in Vancouver which has a year waiting list because of not enough skilled doctors. I expect the same is true for pain specialist too. Very unusual however that his pain specialists besides saying he doesn't "believe that muscle relaxants actually work" (which indicated to me he hasn't done exercise since junior high), but also doesn't believe that pot does other, in one of the main centers for medicinal pot in western Canada. I guess he either doesn't read or doesn't WANT to believe the giant stack of articles on medicinal pot and pain relief that has made it legal in Canada, Britian, parts of the US and many countries in Europe.

Yes, it is a bit of an irony, need to find a bright color to show the goth girl - though I think she needs more hair (I know I am losing hair but I have more than THAT).

Neil: Exactly, it isn't something you would wear around but for crewing during a race it is the perfect colour. But if someone wanted one for day use I would not recommend this colour unless you want to hurt the eyes of those around you.

I agree, thanks to Laura for coming up with the idea and for turning it into a reality.

I totally agree, about going where you are doing something. I would much rather have heart failure (They gave me an heart monitor for two weeks, I am supposed to call in I think, it records 7 "major" events; and it filled up in like 12 hours), trying to go somewhere or being with friends than just waiting at home for life to come find me.

Dawn: Well I figured you could identify with I AM a survivor becuase you are, in my eyes, you do what you dream of and keep doing it and trying to get the help to keep doing it as stong and hard as you can. You are my prod, "Well if Dawn is doing stuff, I better get out of bed..."

I agree, logo for wheelies with long hair! Um favorite colours, black and dark maroon - um, how about we go with Linda's favorite colours?

Veralidaine: Exactly, and we already talked to the first aid tent for the 5K from the 5K organizer, last year when the women walked with me to make sure I was safe, the organizer had heard of me and was going to make sure the race was as inclusive as possible (which it was of all the races we have been to).

This is also why I liked my GP in the UK, he had seen me jogging and then revealed he liked to run to but he tended to go faster, I was like "how fast" and he was SIX MINUTE MILES - ahhh- so having a doctor who runs way faster than you actually helps becuase he gets the pain part, he gets the drive part, he gets the needed to be active part - I miss my GP who ran. Haven't met one who jogs, runs or does much of that since - ironic since they are always touting it for the population.

Sly Civilian: Thanks, it was an exhausting race but I took my time and while there weren't crowds cheering us on, the people in the race were the people who cheered each other other, I often said, "See you on the uphill" or "Not far now" to people and they encouraged me. Thanks.

Yanub: Wow, now I am bringing down the US medical system by proposing to pour money into it - gosh, what will I think of next?

Elizabeth McClung said...

Anna: you don't have to pay to read this blog, in fact that you chose to is a gift, you help me and support me by reading, by listening to me and by commenting, as do some many of my other readers, and you let me send you a postcard now and then. That's why I don't have ads or links on here where I get X cash or X percentage if people buy stuff through them. I hope this isn't going to be a commercial site as I set it up so that people could come and read, comment or not as they wanted, and if they want a postcard, to let me know.

Linda and Cheryl are part of my medical team and they had been getting requests to help becuase I like you and poor and we couldn't see the doctor in the states or pay for a concentrator becuase we didn't have the money, and some people wanted to help contribute. I don't see those messages, Linda and Cheryl deal with them, they set up the site, they do all that including the responses and bookkeeping. I hope that neither you or anyone else feels that I have any judgement one way or another - while I think it is nice (though I am sure there are more worthy causes or people) that people want to help me, by listening, by commenting, by sending me cards now and then, people already have helped me; the readers of this blog keep me going by thier support of me emotionally, with cards, emails, postcards, comments and little gifts. Please, don't let our relationship or this blog give you any worry or guilt becuase of what Linda and Cheryl are doing on thier own - that is thier biz, they have to deal with the icky: "How do we get the stuff to keep beth alive" stuff, while I get the far better, how can I be there for someone and send out a card that will make someone smile on a day they felt not like smiling.

Cheryl: Very rational, I SHOULD have shut up and just let you deal with it. Thinking of you today.

Anna said...


I didn't feel that I had to give. I really do think Linda and Cheryls blog is very good. I Just wrote that, because I wanted to help but don't think I am able to this month. Of course I don't think I need to pay to read:) hey, I haven't payed a nickle so far reading all sorts of blogs on the internet.

Good night
read you in the morning

Kate J said...

The more I hear about Terry Fox the more I really admire the guy. I'm so glad you were able to take part in the 10k... and the doctor who said you shouldn't is out of line. He clearly just wants people to "live"... whereas Terry and you and the people you met on the run want to LIVE! There's a difference. And I love the T-shirts too, so I'm off to check out Linda and Cheryl's site for more details.
What you said about surviving is very interesting. There's been a whole discussion in the mental health world over here (UK) about "service users" and "survivors" - the most radical group I knew was the "User/Survivor Network". Mind you, we used to joke about whether people survived mental ill-health or whether they survived the mental health services... but that's another question.

FridaWrites said...

There are a lot of wonderful ideas packed in this post. I'm not able to respond to all of them as adequately as I should right now, but here are a few of my thoughts:
-Yanub's right. Maybe doctors do need to read more chronic pain blogs and journals. I was also told to do less, and I've already had to do that. But I want to do everything that I can, and that for me means using a scooter. You already have a wheelchair, you need meds as well. I believe that the patient-physician relationship is a partnership, and if someone is saying, I need to continue to do these things and can't follow your advice not to, then it's clear pain relief is going to be called for.
-Great T-shirts, great idea.
-I disliked the word survivor too for a long time for the same reasons. I also thought it implied judgment on those who didn't survive or left them out--though the term victim is certainly loaded to. Your definition reminds me of that song, "I get knocked down, but I get up again"--me too, and I guess that makes me a survivor as well.
-People often ask me how long I'll be using scooter or about my prognosis. I don't know, I don't think that way. I won't box myself in by thinking that it's permanent because for me, who knows, the inflammation could clear up. My knee joints are going, badly and rapidly, and I grieved last week when I realized I'm not ever going to do something as basic as a plie in a class again, but I can do other things on my own. I will dance somehow, someway. I'm not going to give up on anything yet, ever. At the same time, I accept who I am at the moment I am in. If for now I can't walk a long way or dance or go hiking, that's okay. I will.

Reading what you wrote really means a lot today. I've been able to do very little the past few days. But I will.

SharonMV said...

Dear Beth,
So sorry that the doctors aren't listening & trying to take care of your medical needs. I am so fortunate to have a wonderful primary care doctor who takes care of me. I now know that she has literally saved my life (one bad infection without quick treatment could have killed me). And she has helped me with pain control much more than my rheumatologist. I wish you could have someone like her, just one doctor on your side, a doctor who would fight for you.

As for anonymous - people who have hard to diagnose or rare conditions often have to shop for doctors. Just to find a specialist who knows how to treat the condition. And finding a doctor who is willing and able to treat the whole person very difficult if you have complicated or multiple illness. As someone who spends many hours waiting in various doctors' offices (currently I have 5 specialists I need to see), just to survive, let me say two things. First, be glad, very glad if you're not in a similar situation. And second I'd happily wait longer if it meant Elizabeth or anyone else in a similar dilemma would get the medical care they need.


A Bear in the Woods said...

I despise the doctors who want to help us to die quiet, tidy deaths in the corner, so that it won't disturb them unnecessarily.
When it is my time, I want to die as noisily and messily as possible.
If the only thing I leave behind is a mess, at least i will be remembered for that.

Tammy said...

I would never call it "doctor shopping" I call it "self advocacy". You have to find the doctor who will help you and serve you best. Doctors are our employees. We hire them to do a job, if they fail, then we fire them, as any employer would do to a hire who isn't filling our expectations. It's that simple.
Great post today Beth! Completely awesome. I'm at a lost for words past that.

wendryn said...

You are awesome. :D I'm completely impressed by the 10k.

The shirts are really cool!

Oh, and when we worked to find a doctor who would work with us to help my younger brother, it wasn't doctor shopping. It was advocacy. You do what you need to do to get the best care you can.

FridaWrites said...

Sharon's comment reminds me of why I stick with my PCP, even though he has rubbed me the wrong way a few times. He's been supportive of my need for adequate pain control and given me options. Otherwise I'd probably have turned into one of those back pain ER patients once or twice who no one wants to medicate because of the stereotypes.

Because I have more choice in who I see, unlike Elizabeth, I am able to ask for recommendations and do research before I need to see a doctor. But I'd certainly change if I could in her situation and have done so in the past.

Neil said...

Lene: Some of the incompetents apparently get sent to Regina, from one horror story I've heard.

Beth: if you want black or maroon shirts with that logo, just change the logo to GOLD!!

I would be proud to wear that oh-so-visible shirt in public - with your blog site lettered neatly below, and with the chirurgeon patch on the front (I'd wear it while setting up and tearing down in modern clothes at medieval events).

As for long hair, I'm not sure it would improve the look of the design. As muc as I think long hair is beautiful, it just wouldn't work with the wings - it would obscure too much of the wings.


Diane J Standiford said...


Anonymous said...


Dawn Allenbach said...

Dear Anonymous, you brave soul --

Read over a year's worth of blog posts about Beth's progressive conditions before you decide to rain down judgment, not just a single post. If you do, I think you'll understand better. If you still don't understand, then you are incapable of understanding the needs of anyone besides your own.

And just so you know, we people with disabilities wait as long or longer to see specialists -- and quite often we are denied treatment that would be a matter of routine for someone without a disability.

Beth, Cheryl, Neil -- See, I can be civil. I didn't call names or curse or anything!

Dawn Allenbach said...

Beth -- Personally, I like black and maroon, but I think the logo would have to be in white or some other light color. We could go with Linda's faves . . . are they pastels? *shiver* Just kidding. :-)

I'm a survivor, I suppose, though not nearly as awesome as you. I do not own a single corset (my back's so twisty) or pair of lace gloves. I am, however, going to be Supergimp for Halloween.

Dawn Allenbach said...

Neil -- I asked if the picture could be put on the front of the shirt, not that the woman in the picture be given long hair. I asked that because I too am in a wheelchair and I have long hair. Makes it difficult to see what's on the back of my shirt.

Ms.Pet said...

I used to identify as a sexual abuse, or Incest Survivor for years, now I don't, now I just identify as a "Thriver," because I no longer see who I am to be connected to the actions of others done against me as a child. I see the person I have become as being the result of about fifteen years of soul work that began the day I walked out of my family of origins home and into therapy, healing path. Plus, although I understand, the need for the Survivor Identity (it was originally brought in by feminist therapists to try and break the victim/monster identity trap and comes from Holocaust Survivor. Because as they worked with Incest Victims they realized that they had symptoms that almost exactly mimicked the symptoms of people who been incarcerated, in concentration camps, prisoners of war, etc. Including that kind of sick, morbid humor one develops when one is in a situation, like a prison, one simply cannot get out of. *grin* But I think it's important, especially in the case of Incest and Sexual abuse, to remind women that they are more then survivors and that surviving is not the final goal, thriving is. There is more to life then staying alive. that is such the bare minimum of animal existence. So, have to disagree with you there. think it's okay to identify as an Incest Survivor, but I feel the long term goal is to break the emeshment on ones identity with ones abuser, to break free and reclaim your soul separate from them. So I think it's a stage, or a specific place, that if stayed in too long becomes unhealthy and holds one back, instead of moving one forward. Of course, How long, is appropriate, is specific to the person. On the other hand...

It's different when your talking an illness/disease, instead of the effects of something done to you by others, because of course, there isn't any "other" doing it to you, or causing the damage. In this situation, your right, saying, 'I AM a survivor, I AM a survivor," as a kind of mental affirmation, to encourage you to do everything one can to stay alive, IS empowering.

There ARE races for sexual abuse and the such and of course, Take Back the Night. I once organized the first contingent of Incest Survivors to march in the Montreal Take back the night march, oh, almost twenty years ago now. (how time flies!) It was very empowering for me at the time not simply to march but to lead my sister survivors in our group on the march. WE also reached out to male survivors through pamphlets and the such that night. Which, was truly eye opening, the amount of men in the crowd when they saw what we were handing out requested on.

Congrats on your race, again! P.S. I'm baaack! LOL *wink and a hug*

Belly Man said...

That looked like one heck of a race.
Wish I could have been there.