Thursday, October 28, 2010

Aren't you proud?

I was asked today if I was ‘proud’ of what I do, the boxing, the outside wheeling?

“No.” I told them, “I’m not proud at all. How can I be proud of what others find distasteful, my continued existance?”

We are, disabled and Able Bodied, all types of bigots, and one of the most supported forms of bigotry is how we encourage each other to give in to our fear of illness, and altered human function and form. Drool, and averting the eyes is 'doing you a favor' - haha. Yes, because having everyone glace, look away and then talk about you, because your being alive makes them uncomfortable is helping me? No, helping them. It is no different than spotting who the odd one is in grade school, and somehow, they end up with no friends. They are stared at. They are, as you will well know if you were one, asked, "Why do you keep coming?", and the idea of invitation to a party, or even having anyone show up at one you host is laughable.

If your disease requires care, then no one will make conversation. I go outside, I go to the video store and it used to be that I had a lot of conversations, now no one wants to talk to me, because I talk slow and funny. Because look odd, bloated in strange places. Nothing that a devo would want to fantasize over. A friend saw a relative who had MS, and the person with MS had type 4, which is no remission, quick degeneration and in two years they were in a home with full time care, in their early 30's. No one at the gathering talked to them except immediate family. And probably the people who didn't felt good for NOT talking, rationalizing it as 'drawing attention' or 'making them feel bad'. Ah, because it is far better to KNOW you are the monster in the corner?

By the time we are adults we learn to stop being bigots in regards to race, or age, and many other human varieties. If a person avoids ever talking to a black person, it gets noticed, and they are a bigot. If a person won't work as an equal with a female, they are a bigot and it gets noticed. If they make comments about 'being with...own kind', they are a bigot and get noticed....unless they are talking about the visually openly degeneratively ill. Two years ago, the very friends who now nod and turn away from the person with MS being fed, cheered them on, invited them to dinner, made them part of their lives.

Is the person inside different? No. We learn that though we are racist, we struggle AGAINST it, in opening up conversation, in recognizing the person as equal. Why? Because as we watch and judge others, so society watches us. And right now, society does not WANT to see an openly and visibly degeneratively ill person as 'equal'.

Yet, is there a single extended family where a person will not have dementia, or incontinence, or problems eating, false teeth, a limitation of food, care from family and eventually care in a home? Not really. I am your future, for some, your near future, and that is horrific to you. I see it when people walk away if they can't understand my speech, or stop talking to me and just stare when I have problems talking, or how, the best way to clear a 100 foot circle is to have a seizure. Because any of this is rare? No, it is just socially sanctioned bigotry. And that attitude not only extends to the chronically ill and invisibly disabled but more so, the 'no no no, they are not one of US.' "No no, people with MS don't DIE in three or four years, that's NOT MS, you have to understand...."

Having a disease is in one way a single event and in another way, two events: the part where you pass enough, whether that is though use of devices like wheelchairs, to be socially acceptable in speech and ambitions. People who wheel the length of the State they live in for charity are 'inspirational', people who have their lungs suctioned out to breath are not.

People are proud of what I DID, but not what I DO. Though what I DO is the equivelant of digging a tunnel with only a plastic spoon.....every week. But this blog is my last beacon of communication with you and when it goes silent, so does my inbox. No one is 'proud' that I went a day and a half without having intestinal bleeding. Nor are they 'proud' that I live a life eating the same food (for fiber, for vitamin value) every day, drink the same drinks for years. I have such little choice at all and yet, I manage to stay going by planning things out days, weeks ahead of time.

I worked for over a week for the book and paper sale, one I was too sick to attend (thanks Linda). I work as much as is possible for the ebay sale which is on now (another batch of books added thursday and Sunday to make a 80+ book lot), and the first 43+ book lots are selling sunday with another 40-60 selling the next week. Or that due to body exhaustion, oversleeping and drowning feeling of loss of control and a degenerating illness, my isolation has me in the second day where 'Help', 'Won't someone help me', 'I am not a monster' and 'I need love' are written on my arms, and face and no one at my appointment, the waiting room, the home care people in the has said a word. Why? I have the greatest invisibility cloak ever invented, BIGOTRY.

As long as I don't pick up scissors (at which point the Canadian police will likely shoot me), I am clearly someone who is fucked up and not in a way that gets better. And who even knows how to deal with, or ask questions about a person like that? Our society doesn't.

So, I get depressed, I go a bit insane, and still I have to take the mountain of pills, the drinks at the time of the beeps on the watch, the other acts daily to prolong life, a life which is, as I was told when I picked up 'Grace' a documentary on four terminal individuals, to rent, that 'It's long! And not.....' they drift off as they take me in (did they mean, no fun? Funny?).

I said, I kind of hoped that four people's last several months would take longer than nine or 10 minutes each. That got me a walk away, and silence for the rest of my visit. Oh, I'm sorry, was reality the wrong thing to say? I should have said that I was watching it so I could use parts to raise money in a charity drive as I crawl across the length of town? Maybe you would talk to me then? Sigh.

I really have no regret pointing out bigotry, since I was one, though I told myself firmly I wasn't a racist, I simply didn't have in common to talk about (hahaha! Seriously, that's what I thought). I suppose those who ignore me and those like me think that too, though 'I need love' seems a pretty universal message, and I did use a pen this time instead of a knife so it could be read easier.

In the anime, Haibane Renmei, there is a town, which has a wall around it, and while most people are just people, there are a few who come out of a sort of giant organic egg, with wings and halo's. We follow one teen girl who is born, and watches as others either walk out into the woods and disappear, they believe, over the wall, leaving a black halo on the ground, or stay, and the halo flickers and they run out of time. Only those with white wings will fly over the wall. And for reasons of the heart, often never revealed, the feathers turn black. Our heroine, hacks desperately at hers, until one of the older and sadder women show her how to cover her wings, or dye them.

I was listening to a song, Dance until I die, and as usual, it was banal in the 'knowing ignorance' our culture celebrates. Not a song where one has looked at death, or dying, or even applied taking care of your own Nan or Grandfather to the song, no just all of us as teens or 20's or 30's with the freedom of choices so infinite that we don't even realize how many dozen we take for granted just this last hour. The person with stage 4 MS was in their 30's, and they aren't going to be dancing till they die. And while it isn't what you wanted to hear, well, realizing that there is pretty much nothing I do which can or does garner praise no matter how much I push myself answered the question, "Am I proud?"

I live because You sustain me. I die because You ordain it. Save me O Great God. - I wonder, which the person was praying to God for? Until now I always assumed it was for life. (Don't worry, those in disability only have use for 'quality of life' when stable and showing why that isn't a reason to want to die). How, I wonder, did she do it, 16 months on a ventilator, in a room with eight people, never able to speak, never to see her house again, almost always with liquid in her lungs, and no air conditioner in the summer and she was on the side where the sun shone on her. We had a heat wave that summer. She was the same age as me, only I was the one who was 'scared', I was the one who got 'busy' and couldn't visit for a month. BUSY? BUSY??? She's lying there 24/7, the hospital didn't have a portable ventilator, and she has no library, no privacy, a half curtain, endless beeping, and I was the person to bring her DVD sets, not knowing how much that would mean to me later in life.

But I was TOO BUSY?? I was probably doing something like getting the Christmas Concert ready or the HIV/AIDS UN Capital events ready, you know, something to be PROUD about.


Neil said...

Well, I'd say I'm proud of you for using a pen instead of a knife to write on your arm.

As for boxing, SHOULD one be proud of practicing, or having, the ability to beat the crap out of someone? Perhaps those of us who are now able-bodied and are boxers should be proud of never having used that skill outside the ring.

I just went back and glanced at your "About Me" section. Retail jobs at Christmas... ew, bad memories there! I worked in a camera store 25 years ago: one of my coworkers claimed that while I was showing someone a lens, the person asked, "Do you mind if I smoke?" and I supposedly replied, "I don't care if you burn," and went on with the sales pitch. Must've been on autopilot that day!

I would think the Canadian police would taser you, not shoot you, if you were armed with scissors. I suspect a taser wouldn't be any less dangerous to someone with heart problems, though.

I think of you every time I ride my bicycle or pick up my backpack, since that's where the "Gotta Fly" wristbands are. And I think positive energy towards you every time I think of you.

Love and zen hugs,

Lorna, Bob and Liam said...

Wow. A lot to comment on. I'll try a bit now, maybe more after I've digested this.

To be proud of something, usually, means recognition of value... I think most often the value of either an attribute, or effort, or accomplishment. I can feel proud of myself, or feel proud of another person (which can either arise from feeling I contributed to their "thing of value" or simply feeling proud on their behalf).

Ok, had to sort that out.

I don't want to invalidate your feelings, so I hope this doesn't sound insensitive. But. I think you have a lot to be proud of if you go by the definition above, both in the past and in the present. You are an accomplished academic; you are an incredibly moral and compassionate person, and have managed to be so in spite of (what you've described as) pretty horrific early experiences. You are a loving wife and friend. You have one of the strongest wills of any person I have ever met, and you have in the past and continue to use that will to achieve great things on your own behalf and on behalf of others. You passionately and articulately share your experiences and knowledge with others, often at a great cost. You are not perfect, and freely examine, admit and try to learn from your imperfections. In my humble opinion, you are one of those humans of whom it can be truly said that the world is a better place for having you in it. I'm sure I could go on and on, but this isn't my blog.

And I think it's important that you understand that there are many of us who DO know this and appreciate it and love you all the more for it. We aren't "proud" of you because that would be consummate arrogance on our parts. I am willing to bet, however, that we are fricking proud that we can call you our "friend."

Done for now, maybe back later.

Much love, as always.

Kita said...

the song made mew cry,Beth. you should be proud cause you are you - a beautiful person who has taught so many how to fly, no matter what their dis-abilities. sorry to be so dense, but whats a defo?

Michelle said...

I have dealt with death job on a personal basis and continue to do so with my job. This song give me comfort whenever a particular death is difficult to deal with. I know no death is as difficult to deal with as your own, and so I know that it may not speak to you as it spoke to me, but I share it in the hopes it brings some comfort. It has a long musical introduction before the lyrics start.

JaneB said...


I don't quite know what the words are that I need - but this is a great piece of writing, and the lesson that saying SOMETHING is more important than saying nothing in fear of saying the wrong thing is one I need to learn again and again. And I think you're amazing - I AM proud to know someone who is so determined to communicate, to reach out, that she digs that tunnel day after day after day.

cheryl g said...

This post has left me with much to think about…

For a long time I was one of those who didn’t talk to those different than me because I was afraid I would be seen as awkward or would offend in some way. Then I realized how much I was missing out on in meeting new people. I still worry about being seen as awkward (believe it or not I am very shy) but I figure if I don’t risk I will never gain anything. Sometimes people react to my overtures with anger but most of the time I end up sharing a wonderful experience.

I think our society has an ingrained pity for those who are disabled and that is what drives most interactions or lack of interactions. The assumption is that if someone is unable to do everything a “normal able bodied” person can do, their life is somehow less. I also think the other thing that drives greater societies interactions with the disabled and degeneratively ill is the little voice whispering, “that could be you…” Perhaps the views of society will change when society is no longer constantly fed the message that to be truly happy you must be young, vigorous and physically fit.

As for being proud… I am a lesbian and there is a large segment of the population who finds my continued existence distasteful. I don’t consider that a reason to not be proud of accomplishments like getting out of bed and dressed in spite of deep depression or walking 2 miles just to see if I can.

You may not feel proud about what you do but I am proud of you for many reasons. I am proud of your willingness to repeatedly risk yourself. I am proud of your willingness to continue to write about and share your experiences, thoughts and feelings. I am proud of you because you do ask for and expect equal treatment. I am proud of you because you care passionately for others. I am proud of you because you keep working to LIVE.

I am not saying this to invalidate what you feel. I am saying this because you DO say what you feel and think. That is what this blog is for – to allow you to express your viewpoint. I am saying I am proud of you for doing that - for saying that you don’t feel proud since that is what you feel.

Vanessa and Gang said...

People fear pain, people fear death. It is a universal human trait, unless you are the dying, and thus makes it acceptable. Once you are ill, once you are dissabled you are "them"... "they"... you are no longer human. People treat me this way as well and it's even worse for people in pain, who show their scars and battles every minute of the day. When they realize I'm sick they walk away.

I'm proud of you. I'm proud that you got up and struggled so hard to type this blog and every other, that you plan and try for boxing and the library, that you make steps against the odds. I watch in wonder as you fight to be you, to be seen as a person, despite the odds and the flaws of your fellow humans. I'm glad you are here.


wendryn said...

This is very powerful.

It's hard to remember that sometimes we are the only people other people still have. It's sometimes a little scary being that important, and I know I have been very tempted to shy away sometimes. I hate the smell of hospitals, so it's hard for me to go. On the other hand, I know how incredibly boring and depressing hospitals can be, and I know how nice it is to see someone, to know that someone cares enough to come by.

This is a good reminder for me.

You may not be proud of yourself. I'm proud of you. You're still here and still fighting.

SharonMV said...

Dear Beth,
I'm proud of you for not using the knife to carve your messages. And I am glad. The pen is mighty, your words are mighty.
People do not understand that loneliness is one of the hardest things those of us with chronic illnesses endure. And you work so hard Beth, to go out, and are treated like you're not even worth someone's time. Is it so hard to make an effort to listen to someone who talks slowly or with difficulty? Or to respond to a message so important that it's written on the skin?
It's true, they really are only trying to avoid their own discomfort - having to think about chronic illness, especially those that are degenerative. And so the bigotry goes on, accepted.

We all need love. We all need to give love. Opening your heart to true compassion leads the way out of bigotry.


Elizabeth McClung said...

The woman at the end was not someone I knew, someone I heard about from Linda, from her work. She went in, not knowing her last day outside before her cancer operation was the last of all days. They operated, induced a coma, and she woke on a ventilator, in a critical care room with 8 people, so one nurse could monitor them all. She could not leave the bed, and had a DVD player, some light magazines and DVD's I brought when I came each week. We talked through lip reading, about TV shows, and just stuff. But when I was 'busy' I didn't go. The room had no air conditioning. I hated the hospital, I hated the sounds, the smell, I hated it all. I felt uncomfortable and out of place. Now, it would feel like a second home. I wish I had that time back. I wish I had those walks to the hospital back, and the thought to do more.

Was she proud of the 18 months alive? The lawn she worried about getting mown at home during the summer. The house she never saw again. Was she inspirational? I think she just was. Sometimes the attendant came out and told me, "It's not a good time." - though I went the same time every week. What emotional highs and lows she went through, I don't know, and I went back, because I accepted her emotions conveyed second hand.

How can I still have words like HELP written the length of an arm and have no one comment after 6 different people see them? If you find the answer, then it is the answer to who is approached and who is not, across our society.

We, who refuse to disappear behind the veil, are the future, unless you think the 'baby boomer' generation, the 'me' generation is going to go quietly and meekly. In Canada, if you come as a Carer, you can bring your family in just two years, that's how much we need care givers.

Baba Yaga said...

Writing on the skin - yes, it's very visceral. I'm sorry about the need, and sorry that people aren't 'noticing'. (People don't. Even when it's 'only' in pen, they don't. If you did it as a cool tattoo, with interesting design and runes rather than understandable letters, they might. Form over content?)

It's true that we're bigoted. All of us, even when we know better. And it's true that we're very uncomfortable with illness - all of us, in different ways. Mortality's not comfortable, degeneration (ahh, but what of that intangible thing called the soul?) even less so. & the fear of our own inadequacy makes us inadequate, and makes others isolated. Guilty in all particulars, even though I know a fair bit about what it is to be on the receiving end, and strive against it.

As for pride, well, it's a funny concept to me. I know that just getting through days can be heroic (far more so than something *rewarding* like wheelie ultra-marathons): the sending of postcards and the planning despite a wonky sense of time and messages of despair, the persistence you show in everything you do - they're not small things.

Elizabeth McClung said...

Baba Yaga: I said to Linda that if one person understood and changed, it would be worth it. And then laughed and said, "No, the truth is that one wouldn't be enough at all, but it would be a start."

I don't know how you know to say the things that show you understand what cannot be understood, what binds me, and cannot be explained, but you do. I knew I wasn't a bigot until I learned I was, and then I knew that what I 'knew' was not much at all.

What you say makes me feel your presence, that what you write made a difference to this person, one person. I was one who needed to hear, 'Well done, my faithful servant.'

It is the sacrifice which is the journey.

Eric said...

I've held my son in my arms as life was slipping away from him on more than one occassion -- he returned, either by my intervention or by the grace of life. He hangs on by bare threads. But he doesn't know that.
I have treated several people who I could feel were dying and I have been treating people for over twenty years--but it never gets easy--I don't rush into the room and embrace that feeling of sickness, the intimation of death, the horrible odours.

When you see something you are not accustomed to, something which touches on our fears, you look away.

But why be so hard on people who cannot speak your language? Every child who is even remotely like my son is so different--very hard for me to treat them, to learn what they need and people you come into contact with are not meeting with you in order to develop the skills needed to be there for you.
Still listening, not from morbid curiosity, nec spe, nec metu.

Elizabeth McClung said...

Eric: You ask a sincere question. So let me answer in parts:

"When you see something you are not accustomed to, something which touches on our fears, you look away."

Yes, and no. I think perhaps we do, like people of a different skin color, of human oddities, the 17th century was very interested in this aspect of terror as a physical phenomenon and Pepy's kept notes on the all the sensations he had while seeing 'the freaks' which were exhibited in London. Foucault's book on madness shows that people saw mental illness making the people akin to animals, and they too were on display. Certainly after 9/11 there were spontanous outbreaks on not dozens, or hundreds but tens of thousands of acts of violence against visable muslim citizens, one notable was a group beating in Swansea of a one legged man, who had escaped Iraq and stepped on a land mine escaping. He was beaten to death by a group in broad daylight in a crowded area. He was different, he was scary. So am I. So is your son.

Either this is acceptable behavoir (did they target him because he WAS disabled some wondered), or it is not. Either racism is acceptable or it is not. Either sexism is acceptable or it is not. And because right now it may be socially accepted and encouraged to be not just biased but bigoted toward, a specific degree of illness and difference, does not make it right. If Christian, I would point out that it was his associations with lepers (terminal, disfigured, often hard to understand in speech) that make Jesus so repulsive to his contemparies.

Maybe this is a choice individuals have to make, but I know enough that when I look away, I am ashamed, because I did not give another person the equal respect. Care giving isn't pretty and those who do it can do amazing jobs, and give back more than cleaning up a soiled bed, or putting ointment on sores, or catching green lung phlem, they can do this and make the person not feel demeaned, but a person they respect: dignity.

That is what they said at PFLAG too, why learn about 'queer' teens, why learn about 'intersex'? My response was
"Let's make it simple, why bother learning about gays (except that you can become one by associating with one and gay men really just want to be women, or like being beaten up, or are into having sex with children - or whatever other stereotype we want to use)?" That bothered them because THEIR children were gay. It is always the 'next group' that is too much, or 'political correctness run amok'.

What is right is right. And either all are equal as humans or they are not. And perhaps it isn't meant to be easy. And do you think the people who exude horrid odors or pus, or fluids, enjoy the smell so much? I find not really.

Now, you want fluids and ick, lets talk childbirth! But we finally figured that men MIGHT be able to handle it, the same way we now allow women to read Gulliver's Travels. :p

Why be so easy on those who don't speak to your clients or child at all, and do so deliberately?

Kate J said...

One of my neighbours has inoperable cancer and already past the time he was expected to die. I saw him the other day, he was out in his garden and looking quite well. I said hi, but I didn't ask him how he was, or say how he was looking better. I'm afraid I didn't know what to say, so I just admired his flowers and commented on the weather. Not enough, I know, I know, I know.

I am proud of you, Beth, for continuing to blog, to box, to go to the video store,to be a pain in the ass of the medical and health 'care' people, to rage against the dying of the light, and against injustice too. I hope you don't find that patronising, because that's not how I mean it.

You always give me something to think about, you challenge my assumptions, you make me laugh, you make me cry...
Love and peace.

Jill said...

would it help if I told you I love and respect you and pray for you often? Id hold you if Linda permitted and it wouldnt hurt you in anyway..

tinarussell said...

I always hate it when people praise me for simply still existing. What was I supposed to do? Sometimes I’ve had people tell me “I think it’s so great what you’re doing” or things like that, and they never are actually talking about talents I have or aspects of my personality or anything else about me, just about the fact that I’m still here and I have friends and I refuse to quit. It makes me feel invisible.