Thursday, September 11, 2008


I have dreams; fantasies about sticking my hand into a blender. Because I am not human.

I have little to no nerve feeling in my arm, in my face, my torso, and yet I can still move them. Yesterday, to illustrate my point to my night care worker I picked up a pen and stabbed it full force into the right arm, the same one typing this. I have the red round mark, and the indention where it entered. About 90 seconds to two minutes after the stab I felt a sort of throb, so I guess the pain found a route, somehow, somewhere. I feel nothing and yet I still can move my face and limbs, imprecisely. Something about how pain nerves are bigger than muscle movement nerves. I dunno more than that, since I don’t have a neurologist anymore.

To me it sort of seems like a zombie film. I have this skin and muscle that I can move, but I don’t feel anything. That’s a zombie right? I wonder if they shot me, would I feel it? Since I don’t have a neurologist and no one seems besides me to be recording how fast this is spreading, I don’t know if after breaking or eating all the axons of my nerves for pain, whatever it is will turn to other nerves? Then I won’t be able to feel the hand OR move it? Which is sort of like my life 10% of the time' between seizure and fatigue anyway.

One thing I have been keeping track of is the loss of my sexual feeling, my clit. The vibrators are not as effective and I estimate that all areas that have feeling are reduced by 60-70%. So I guess this WOULD be a good time to enter sex work, since I could be a living meat doll, able to smile and not feel it, able to hug and not feel it, to fuck and be fucked and not feel it. Meat doll.

I found out thanks to google that I am the number four response to “She raped me with her strap-on” (yeah, thanks sitemeter!) – which considering my memory (giant holes, nothing short term beyond five days consistently) I had to ask Linda, “Do we HAVE a strap on?” Nope. So not sure how I ended up the answer to that one.

By the way, beyond not being hungry, or thirsty, I don’t really have taste, and when I say that ALL areas are reduced by 60-70% that includes my tongue as well. My clit and my tongue. I wonder, will I be the first lesbian to “fake it?” Make the right noises at the right times though I can’t feel anything.

There is something I am supposed to grieve I think but I’ll be damned if I can’t figure out what it is precisely. I have dreams every night of being skinned, or covering my torso with knife cuts and carving ‘Morte’ on my stomach. I have dreams like that while awake. Yesterday at badminton, I took of my legs restraints so I could throw myself further out of the chair. I wondered if I would break anything. I wondered how long it would take to notice.

When our new overnight long term worker arrived last night we told her that she has to check my oxygen levels, that I can’t feel my temperature. That she has to do it for me. Told her the it was important to keep me conscious when I am trying to be conscious, and asleep when I am trying to be asleep. Told her about the problems feeling.

She wanted to know how I could be in such pain, so much pain if my nerves couldn’t feel. I told my guess, that if plucking just one nose hair is REALLY painful and plucking eyebrow hairs is painful and those are just ONE or two nerves and I have millions and hundreds of thousands are dying, that they might be screaming, all the time screaming. And if, it takes them five of ten minutes to get a path to my brain, it doesn’t matter because they don’t stop screaming. And that is just the pain nerve endings, the muscle pain, from constant oxygen deprivation, hurts too. And the pain from ripping of my muscles from a cellular level up, and never being repaired. Like me, they are sending out messages for help; but it never comes.

We told her that we try to keep the bits that can’t feel from being too damaged since I still have hand injuries are months old, and that I can’t survive an operation, because the heart is dodgy and that is not to mention the progressive anemia. So if something starts to rot or get gangrene we will just have to try to stop that from spreading.

She asked me then if I had tried ‘alternative’ medicine because she knew a ‘wonderful woman’ who had healed herself of cancer. And that she could tell what was wrong with you without even touching you and how my overnight worker, who was signing up for a long stint with us, for watching over me, she believed that NO ONE who truly WANTED to be healed or to be cured couldn’t be cured. Yes, if you WANTED to be healed, then in this day and age with all the different medicines we have, traditional and alternative if you really wanted it, you could be (and this woman had some training from 'a real chinese doctor').

I can’t express how angry I was listening to that. Here sat this person, younger than me, telling me that I just didn’t WANT to live with Linda enough, that I somehow WANTED to spend my time writing wills and living wills and taking pain pills and hurting rather than being outside running. I told her there aren’t any 800 year old people around and that in Buddhism one of the truism is that if you are born you are going to die. I asked if she had seen anyone die. She said she had “Taken the palliative course” and sat with people who were dying, old people (as in no, hadn't seen anyone die).

I told her that I did palliative work when I was teen and it was with people I knew. I said, this is going to be someone your age, and it isn’t going to be old age, or cancer; I said it is going to be brutal, it is going to be agonizing, and you will be here month to month to see if. I told her the autonomic system controls the heart, and the veins and blood pressure and heat and oxygen. She would see things that she might never ever see or hear of again, and would she be calm when the pain of a heart that stops beating and then starts again to a highly constricted vascular system causes me to scream, and scream? When my vascular system rises and starts bursting as it does, turning my limbs green before the blood just starts erupting everyone, in joints, in hands, in elbows, shoulders and in my brain, putting me in TIA’s or seizures. Just because. I needed to know because in a few months those will be the better nights, besides the ones I sleep and if she truly believed that I could be cured, then she had better leave.

“But you’re not going to die tonight.” She said with a nervous laugh.

Linda didn’t laugh. “Yes, maybe I will die tonight: I almost died, and had 40 minutes to turn it around, with an EMT here recently, I’ve stopped breathing for 25 minutes over a 45 period, I’ve had emergent pressure on my major organs, and that is all the last few weeks,” I told her. "So yes, I might die tonight, that's WHY you're here."

Little did I know that an argument with Linda would use of my reserves and at 1:00 am I would go into seizures separated only by seconds, each one more intense than the last. My resting blood pressure between seizures, 178/167. Linda said she could see and hear the heart just stop beating for a second or two before a frenzy of beating again. She managed to massage my jaw open enough to get an Ativan in and after the next seizure it was down to 136/125 but the heart was even more erratic, more delayed.

When all I have is an eye staring at you, like the cells and nerve endings being destroyed, screaming “help me!” Does it get heard?

I know that in my future, unless I choose to overdose these nights are what will be known as the good part. I will not be medicated with some definitive progression. This isn’t Cancer, this is the part of the brain that controls everything we depend on, we need it to do automatically and it is slowly dying. Many call the crucifixion the worst agony, as a person has to stand pain in order to breathe, and when the person grew tired, they relax, hang down and suffocate. They talk about it using the word horrific. I have had to manually breath, agonizingly trying to expand my ribs, suffocating by my body weight, waiting as everything goes black and sparkling for someone ro roll me so I can suck down each breathe. To pass out only to be pinched, called, shouted, be woken to breath again, because my body and brain isn’t doing it for me. for dozens of times for dozens of minutes. And that is a good day. That is a normal day. That was today, this afternoon.

So what kind of human am I, who has to have a timer to tell me when to breath, who puts themselves in pain so that the meat doll lasts a bit longer. No hunger, no thirst, no need to pee or shit, no taste, often no sight, only emotions. No one knows what my dying will look like: Linda and my friends hope it will be quick, that if I don’t have a massive heart attack or stroke it will be less over in than a month.

Because my presentation is unique, they can put a pacemaker on my heart to keep it beating, but nothing to stop my veins from constricting and bursting in my brain. Blood is like acid to brain cells, what you lose there, you don’t get back. Kind of why I want to keep mobile, because at worse it could be months even years of a withered body, a shitting/pissing sack of meat where each month my ability to understand what is happening to me, what the incessant pain means. But with a body I spent decades of a foundation of marathons and athletic training, how much can it be beaten down, what WILL it take to destroy me? How many months of strokes and seizures lying there until my IQ is knocked down enough so that I don’t realize the horror of what is happening. Becuase when that spark goes then they can, probably will have to put a muzzle on me to stop me from screaming constantly.

So how many months or years before that for Linda to see me in constant, agonizing and bewildering pain, with me looking to her, “How could you do this to me?”

But if I just WANT it enough, then I can be cured; because there was a woman who had cancer.

I am going in the Terry Fox 10K. If I succeed, I have a 5% chance of dying that day (heart attack, weakening of heat stroke, seizures, to heart attack or stroke). If I succeed I will be in agony so extreme that I won’t be able to sleep for three nights at least. I will be in pain so bad for a week I won’t be able to hold a pen, be able to do much but use all my energy to focus in order to just be able to speak. If I succeed, I will prolong this meat doll, inproving the respiration and circulation, in order to keep getting out of bed for an extra month. Maybe.

How do we know if we are human? If you prick up do we not bleed? Well, I don’t. Not at the blood center. I feel, but emotionally. I still have fear and terror; I have frustration and despair.

I was evicted from my home this morning so a group of people from Beacon could do oxygen training. For me, I think. I went to the library to see if the followed up on whether the Juvenile section had displayed Harriet McBryde Johnson book, Accidents of Nature as I asked of them after her death. They had culled the book instead (removed and sold the hardcover for 50 cents).

I asked the person putting out books who decided to cull the books? They sent me to the librarians desk. The librarian said that decision wasn’t really theirs, they might see it but it would be made in the children’s section. I asked them if they had culled a lot of Martin Luther King lately? They laughed the “Of course not, he’s important” laugh. I asked if they culled Henry Thoreau? Or Rosa Parks? Another laugh.

I went to the children’s section. On no, the person on the desk didn’t have that power, she was a clerk, but maybe it was damaged. I told them it wasn’t last month. And wouldn’t that be replaced. Yes. Was it being replaced? No. We did the same dance on how it could have been stolen. No, not stolen, not being replaced.

She thought there was a form for people who wanted to complain about books culled. She found it. It was a form for people to ask for books to be removed. The next person came, she was a children's librarian but not a senior librarian, she recognized me. I told her, “Over a year ago I asked you where the books for girls in sports were, and where books on teens with disabilities were?” She said she remembered and nodded her head. I said that it was a year later and the central library now had LESS books on females in sports in fiction and LESS books on disabilities. They stared at me. The one woman who recognized me at least nodded in agreement.

I tried to explain, I told them that if we, all whites were in Baltimore and we only had one or two books of black teens living city life, that we wouldn’t be a very representative library of Baltimore. I had asked for literary work of the the woman, Harriet Johnson, who changed the way people with disabilities and child exploitation of the disabled are viewed to be displayed, her work to be displayed at her death. Instead, they had removed a book, a hardback from Henry Hold, in perfect condition, that they owned less than two years. It had taken 12 years for that book to find a publisher.

I said that the recent TC 10K run of 10,000+ had more women than men, yet the library had more athletic teen male fiction than female. I said that a recent report showed that one in six Canadians had a disability and yet I not only doubted that 1 in 600 books in the teen/youth fiction section reflected that, I doubted that 1 in 6,000 books reflected that. They told me the Children’s librarian who did the culling was coming. And I could always submit book suggestions.

The Children's Librarian to me and explained that I should go home (in my wheelchair) and give my opinions and views on the webpage, where views and concerns could be written down and then forwarded by the click of a button. I said, since YOU are the person who pulls or approves the culled books, wouldn’t it be easier to explain it to you? No, she felt that if I left, that would be better.

I said that the problem was that the clerks who pulled the books and librarians who approved the books didn’t have all the information to make an informed decision. The gave me the dirty look. I asked them if they had culled, Peter Pan recently? They laughed that laugh. I pointed out it might not be taken out as often. No, but it was an IMPORTANT book.

And if Martin Luther King had written a book for youth, would that be an important book? Of course. I tried once more to explain to the three women standing and looking down at me in my wheelchair that Harriet McBryde Johnson, for the disabled population WAS that important, that it WAS an important book. That Accident of Nature was, as far as I could tell the ONLY book the library had to tell kids with disabilities from CP to OCD, wheelchair users to epilepsy that being disabled was okay, and better than okay. And now that book was gone. A book which told those kids that they should set their OWN dreams, not let 'good intending' abled bodied people set those for them: that these kids were equal to their able bodied peers and could set their own goals. A book written by a disabled kid who grew up, no not to die a horrid death as implied by Jerry Lewis but to become a lawyer and live life deliberately.

The librarian emphasized that it would be best if I left the library and explained all that in an anonymous statement over their webpage (which would then be forwarded to her). I think the emphasis was on LEAVE THE LIBRARY.

Linda had come looking for me, the oxygen training was done. She helped push me home. I had exhausted myself to try to get six able bodied libraries who had as librarians, just recently had their civil work liberties walked over by a lock-out from management, to understand that they worked to remove the only written voice of disability for youth, teens and young adults. The only voice that helped me. Then they worked together, these same representatives of the library to get me to go home, to go online, to stay out of sight.

Because I am not human.


yanub said...

Let's see, you're going to run a marathon that may kill you, or may make you strong enough to live a bit longer, though at a great price. I can't think of anything more human than that, than taking on a risk, do or die, with intent and understanding. Unless it would be to take on such a risk as part of a cause that helps others. Yes, Elizabeth, you are a feeling, human person. Far more so than a gaggle of librarians who can't be bothered to think outside their cubicles.

I hope the new health aide, despite her New Age-y style disability bigotry, is open to learning and changing her attitude. At least you describe her as capable of holding a conversation, and that seems to be a rare feature with the people you've been sent lately.

cheryl g said...

I still think you are very human.

Sadly, you are surrounded by those who have traded off their humanity – Beacon employees and management, the management of your building, the librarians, the medical so-called professionals, members of your own blood family. These people show their lack of humanity regularly by their callous and capricious acts.

Why do some people become instant experts on curing us the moment they meet us. You have to WANT it enough? What the fuck?! Since you want it with your entire heart, mind, soul and body as do I and Linda then obviously that method isn’t going to work or you would be cured now and back on the epee tournament circuit.

I have never understood libraries that cull or remove books that aren’t damaged. The library and its employees are there to help teach and expand minds. They should not be the thought police. If a parent has an issue with their child reading a certain book then it is the parent’s responsibility to make sure the kid doesn’t check the book out. Now, other parents might encourage their children to read the same book. It isn’t right to deprive those children of the experience just because someone else is uncomfortable with the book.

Anonymous said...

That's horrible. Books are precious. And hoping something or someone who makes you uncomfortable with facing something scary, would just go away won't fix their fears.

Is there a group for disabled rights in your area you might be able to report this to? Or try writing a letter to your city council or going to a city meeting?

Disrespectful to another living being is desrespectful no matter when or where they are.

Allison Gomez

Veralidaine said...

What is human?

I have animals and I see few differences between human and non-human animals. Each definition of uniquely human proposed is soon destroyed by some animals that violates the arbitrary rule. You are a human who violates the arbitrary rules of what's human.

Human, I say, is not a matter of bleeding or of a physical trait or ability. You are human because:

1. You give and receive love.

2. You do things you don't want to do because of internal, not external motivation.

3. You enrich the lives of strangers merely because you want to do so.

4. You argue.

5. You are stubborn.

6. You are a writer.

And you will be human every day that is left to you, no matter what, because:

7. On your body and your brain is written the history of a life lived in extremes, even if your brain no longer accesses those memories.

8. Even if you don't understand what's happening to you sometime, you will continue to receive, and I think give, love.

9. You believe you have an immortal soul, and if that is your belief, it will not depart your living body.

10. You have given so much heart and soul to your writing that it will humanize you even to those who never got a chance to speak to EFM when her great big brain wasn't so prone to going boom.

Sorry about the clit though :( that really sucks. I love my Catbus card!!! Don't be the first lesbian to fake it, that is not the record you want to hold. Instead be the first lesbian to manage orgasm by being too damn stubborn to succumb to clitoral nerve death.

Elizabeth McClung said...

Yanub: I'm going to wheel a marathon because the pain of the cruixifiction will occur whether I do or do not, but this way I will be with Linda a little longer. If I was human, I wouldn't howl like a dog in pain, I wouldn't go mad with it without someone putting me down.

They wiped away her life, they wiped away my efforted, they bullied me; I am not an equal human.

If I was hetero, maybe I could love Linda enough to live. I don't trust the ones who talk, I trust the ones who don't run when I flip out of my chair in a seizure, like the one who held me captive for two hours two over a partial paralyzes absance seizure and wanted to call the paramedics (11 times).

Bark Bark Bark!

Cheryl: If we are all human then we can see the parts of each other in each others. Why then do they run, do I make them physically sick? Is it my humanity shining through. Why do they need to run so far, to hide so much.

I know what it is to be humans by the humans around me, and I am not it; they tell me I am not one of them, they show me in how they speak and act to me I am not one of them, they ever refer to me as "one of those".

Bark Bark!

Allison: I agree, it turns out that it is harder to get a disabled fiction book into the teen section in Victoria than it is to get a gay or lesbian one into the libraries of the most bigoted towns. How much people must hate those who embrace acceptace of disabilities, in order to erase all traces of it.

Perhaps, next year I should give the library a copy bound with my skin. Something to remember me by. As I pointed out, the skinning shouldn't matter whether I am dead or not.

yanub said...

I can't see how being hetero could make your love for Linda any deeper. It's not like sexual orientation matches up with love. Linda and you--my goodness! What a couple! The sort that inspires fairy tales and mythic tragedies of romance.

And if making the world better, inspite of everything, wasn't an integral part of you, why not just practice for a marathon instead of actually participating? Fewer people, choose your own course.... And why spend your precious time and energy arguing with clueless librarians over a book you've already read, except that you know that book will help others? You ask Cheryl if they run because your humanity is shining through. I say, yes, that is exactly why they run. In you is undisguised humanity, strong yet weak, alive yet dead, daring yet hopeless. We spend so much of our lives covering our humanity, and here you are, naked humanity shining with an intensity so bright it burns. Rather than see you and know that you and they are joined, they flee the truth.

Now, the pain, the nasty horrible, vicious, hellish, unfair, unjust evil pain? It may make you barking mad, but it doesn't make you a dog. No matter what happens, no matter what decisions you make, you are our EFM, a force of nature, a human. A friend.

Elizabeth McClung said...

Yanub: Okay, that actually almost made sense to me, and you got the barking, which gives you a lot of points.

If I AM human, why can't I be like them? When does it stop hurting, emotionally and phsycially? When does it stop hurting so much? Humans don't feel like this (I feel and yet, I don't feel; and the more I don't feel, the more things hurt me emotionally). I just want it to stop hurting. I want to stop hurting.

I want to look forward to tomorrow for once. That is what humans do right?

missnomered said...

You're very human. It's why I keep coming back to read this blog.

Other people, on the other hand, can be complete jerks. As we've seen time and time again. I don't get bigotry, I really don't. People can be such prejudiced assholes, and it says way more about them and about you.

I really hate it when they take books out of circulation like that. Hate.

hakalax said...

OOOH, this was bad! I'm an ex-librarian, and I'm chocked about your shitty library and their staff. You're more human than they are, Elisabeth!

Remember to add the label LIBRARY to your article, by the way.

I've experienced how christian "friends" adviced me to get cured by healers and prayers. It's really hurtful and patronizing. A lot of christians are unhappy about their chronical diseases and pain, so they go to healers over and over and over again - and end up disappointed and depressed, thinking that they are unworthy christians, that they don't BELIEVE enough, that their -faith is too weak. It is so sad!

Queen Slug said...

Well everyone is telling you that humans love & humans care & that you are & do those things. Here's the flip side, humans can fully comprehend terror, I'd say almost all of the time, all most all of us aren't, but for a few we do. A dog may cower in fear, but that fear is not the same as true terror based on full understanding, you my dear sweet wonderful friend, as sorry as I am to say it, you do know that. That is wholly human.

Now what the others said is true as well, but when you have a hard time looking at those positive messages & feeling they apply & you are in a very dark place & can only see dark messages remember this, because it's true as well & you are very, very human.

Another thing that is quite human (& as everyone else has said) is to bring joy to others no matter if there is a serious physical cost & you do that. You bring so much joy, love, compassion, humor & so much more to so many. You bring that to Linda, Cheryl & all of us who read here everyday. You write postcards to make others feel cared about that is oh so human.

You are human & you are loved.

cheryl g said...

They run from you because you are so very human and they can see themselves. They can see that a strong, athletic, young person can be quickly devastated by an uncurable disease and they know it could happen to them. Most people fear the face of their own mortality and seeing it mirrored in you makes them run.

It isn't that these people see a thing, a dog, a sub-human. It is that they see themselves and are afraid.

Yanub is right.

Why can't you be like them? Because you face your fear and your mortality. You do the hard things and you keep going. You refuse to be less than your full potential. You will not sit quietly by when you see an injustice and think "not my inch". You LIVE even as you are dying. You are very human and display that with a strength and nobility that is very rare.

To be like them would be to hide or ignore parts of yourself. To be like them would be to kowtow to societal expectations even though those expectations make you less human.

I don't know when it stops hurting but I wish I could make that happen. I wish I could help you look forward to tomorrow.

Lene Andersen said...

I think it's BECAUSE you're human that they want you/us out of sight. Because we remind them of things they'd rather not face. Not just that the state of health they experience is temporary, it's more than that. Maybe its that they may have to think outside the box, the convenient "this is normal, this is what we have to consider" and there you are, reminding them. That you are human, too, that people like us AREN'T meat dolls, saintly cripples to be trotted out when money needs to raised and inspiration to be shoved down the public's throat and then to be hidden away again, because we are incovenient, require thought and alternate ways of delivering services.

Gaina said...

Have you ever noticed any sensation leaving or returning depending on how you sit? If we assume for a minute that something is going on with your spinal cord, that might be something you can do it regain some sensation.

And yes, I understand how you can not feel a part of your body yet be in pain at the same time.

As for the 'Am I Human?' question, I can completely see why you are asking yourself that. I'm so lucky to be surrounded by people who make those moments incredibly rare for me, but they do still occur occasionally. You know what's ticking me off at the moment? British Athletes were constantly on the 'back page' (traditionally the sports page in british tabloids) during the Olympics. We've had incredible success in the Paralympics but I have yet to see an article that equals the length of those written on their able-bodied counterparts. I haven't checked today's papers so I'll let you know if anything has changed.

Call me wacky but don't those people at Beacon wonder if you should maybe have been there for the oxygen training, saying as its going into your body!?

I would get everyone you know that uses the library to email, write and phone up requesting the book. That'll speak for itself :).

I enjoyed listening to you on 'Word of Mouth'. I feel like you're 3-D individual now, you know? :)

Veralidaine said...

"If I AM human, why can't I be like them? When does it stop hurting, emotionally and phsycially?"

I think the hurting part IS the human part, Beth. Would a zombie or a monster suffer the emotional anguish you do? I remember your review of the Elephant Man movie. Wasn't his humanity illustrated most potently by his suffering when rejected by other humans?

Dracula did not feel pain when others ran from him. He was not human. The Elephant Man was.

Temple Grandin says in her book "Animals in Translation" that one difference between most animals and most humans is that animals feel the same pain humans do, but not the same suffering. As an example she offers a Labrador Retriever who jumps on a couch a couple days after being spayed, versus her own recovery from a hysterectomy, versus the effects of hysterectomy on a non-Autistic human. The last of the three suffers most, the Labrador least, though they all had the same surgery and likely the same pain.

Beth, you were never like them. They just didn't know it before. If we all went around wearing our insides on the outsides, you would have always worn a giant flashing badge that says, "Brilliant and talented and more motivated than you will ever be, but also a survivor of horrific abuse that will terrify and disturb you." And those librarians would still have shied away from you out of fear that they'd be inadequate by comparison.

So it shows now. I'm sorry. I wish I could ease your suffering, but to stop you from suffering when rejected by humans WOULD be to deny your humanity. But those same people would still be intolerant assholes if you were able-bodied-- it just wouldn't show on the surface. It's not you. It's them. You can't be like them, ever, even if you were to recover fully tomorrow, because you are NOT like them-- not because of your disability but because you are ELIZABETH FUCKING MCCLUNG.


Hell no!

I would rather be proud to call myself a friend of the one EFM there is than 100 nasty, bigoted librarians like them. They are less human than you, if anything.

Dawn Allenbach said...

I'm crying in outrage right now for all of it -- your body's rebellion, the Beacon people, the librarians.

Try not judge the night care worker too harshly for her suggestion of alternative therapy. She sounds to me like someone who meant well but picked the wrong damned words because she's young and naive. She certainly didn't represent the thoughts of those who utilize the therapies. No, alternative therapies aren't likely to cure what ails YOU, but it/they might help lessen some symptoms. I'm considering going to consult with an acupuncturist my fiend knows. Will he cure my spinal muscular atrophy? No. Can he perhaps help me deal with the back pain in a way that opiates don't, so that maybe I don't have to take as many? Maybe. My pain is not yours, so I can't speak to what alternative therapy could do for you. And naturally money plays a part (for me as well).

Did any of that make sense?

Abi said...

Hang on - what's this about wanting to be like them? What's that got to do with being human?

I reckon that you are human, but whatever you are I prefer you to that lot. If you are the future of zombies, then go zombies! You are much more considerate than I would expect a zombie to be. It would be very scary receiving lots of zombie postcards, though, and I reckon your sort of zombie would take over the world with alarming determination and efficiency.

It sounds as though zombie sex would not be the way forward, though :-( I am very sad about that.

Enough jokes in bad taste. Sending you virtual hugs, with no fear of having my brain eaten.

Anonymous said...

one minute you are dying the next your playing minute your are telling us you don't have feeling in you limbs etc....the next you type these long blog minute you tell us that your heart stops beating and you seiz.....the next your going to do a 10k.......yeah your human...and a great writer as well.....

rachelcreative said...

Thank you Beth. You just gave me another great book that I really need to read.

I feel kind of thick that I don't know all this stuff - but you're helping me bit by bit :o)

Sounds like you are in a dark place today.

Hoping you stop being so tough on yourself soon because you're an amazing person and sometimes it seems like you're the last one around here to realise that.

OK - off to add that book to my wishlist :o)

FridaWrites said...

In one of their books, the Arthritis Foundation addresses this cure mentality directly and says it's wrong and not helpful. What easier way for charlatans to deny responsibility than to say someone didn't want to be cured badly enough?

Jeez, and librarians are usually so liberal. Very few people are liberal when it comes to disability.

Victor Kellar said...

As others have said, the very fact you feel pain, that you have uncertainty, that you are forced to make decisions from choices that never feel "right" that you get into arguments ... well, how more human can you get?

Bureaucracies like Beacon and like gov't healthcare hate humans because all bureaucracies do is create little boxes that values can be plugged into in order to generate an outcome that has been predetermined but filling up boxes .. and boy, do humans go outside the boxes. I think the more a bureaucracy tells you that you are not human,the more human you actually are. And we could say the same about libraries.

And anon, as for your implications; complexities, incongruities and unpredictability ... yup, all human

schauspiele said...

Hi Elizabeth,

Just wanted to let you know that I was thinking of you. Am sorry (not in an asking for absolution way) that I have not been good at keeping up with your blog. Am off to catch up with what I have missed.

Neil said...

My Beloved agrees that you're not human. She says, however, that you are superhuman.

I say you have more "humsn" in your numb middle finger - on a bad day - than exists in the entire Federal government. On a good day.

The rest of this eloquent lot said what I want to say, and say it much better than I could.

Love and hugs,

Shea said...

I don't say this very often, at least not on blog, but Anonymous, please go straight to hell. I have no idea why people don't have the balls to put their name behind what they say, enough said, you are not worth it. Anyway, I'm sorry about all the crap. Being evicted for their training sucks, the library totally sucks, the clit thing is horrible. Us hetero women can sympathize with the whole concept of faking it. I totally can't believe I just said that, but then you've said a whole lot more, and suddenly it does not really seem that brash after all. Oh, and you're human. Of course that sounds simple to say, but you have a heart, and that is the definition of human to me. ~Hugs~

Elizabeth McClung said...

Veralidaine: I don't know what is human, I don't even know if I qualify as mammal? But thanks for providing the info - I am not QUITE the same head space.

I am pretty sure that most cats qualify for 1-5, and some squirrels! Admittedly 6 is a tough on even for squirrels, but I have faith that Psycho will write his memoirs: "Another day, another grab; life from peanut to peanut!"

#7 is sadly true, but also sadly true of so many animals including pets. Number 8 I am finding out is being lost, a symptom of the degeneration of my brain; has already in some ways been lost in ways that my currently conscious mind finds unbearably painful - to not recognize in order to love, to be in so much pain one lashes out. And not even remember.

Well you can still speak to me - or listen to my "Strong" voice on BBC 4 for another couple days. Just hit the "play the program" button to the left on the webpage.

I am really glad you like the catbus card, knowing you are happy and that your quad rat is now a partial quad rat or partial para rat? Makes me happy.

Missnomered: I can't say why people act as they do, the Canadian love on never taking personal responsiblity is what has left me kicked to the curb with most of my long term care being done my a hospital instead of doctors or specialist. As for the library, I knew they culled books, but for them to do it to the one I specificially identified as disability important (a new books as well) seems particularly criminal - Linda says that she believed we were about to be evicted (from the library) as they "had had enough of you" - odd, you destroy a book on the equality of people with disabilities but then get angry when someone in a wheelchair wants to know why? Like you said, I don't get it.

Hakalax: Yes, sorry, I feel sorry that I supported them in thier fight for better pay because they shut down the program for the shut in's before I went to Japan and now this, I have to wonder, whose rights DO they support besides thier own? And when is a library made better by patrons being told to leave if they ask questions (my GOD, you have books, isn't that the point of books - to teach us to question things?).

Oh, I will, thanks about the tag.

Yeah, it is very hurtful, and I had that previously as well, but I am not going to fall into the "I don't love God enough" trap - and for this woman to try and make a "You don't love yourself or Linda enough" trap instead was rather - anger producing.

Queen Slug: Ah ha - thank you for finally talking about what the piece was about - the terror, the fear the horrid way I will die. The book was, while a real experience, just a metaphor of how I am and continue to be treated (a bit like that book, culled out of public view).

I am human because I know that the difference between Frankinstein's monster and I is becoming less and less every day? That I know pain and pain teaches me terror.

I asked a medical person if they thought I had overstated my dying, and they thought I had rather understated - kind of sugar coated it. So I guess I wasn't descriptive enough - though the way people avoid talking about it, we must not have much language for it.

I am thankkful that I am loved, and I hope, when I lieave more and more remnants of humanity behind that remains. Becuase when I cannot write, what will be left?

Cheryl: No, I am not going to be a "not my inch" person though it seems that seems to be a favorite game people play.

And I am a creature, a dog, kennelled by Viha, ordered by Beacon, and disciplined by them too.

That I can move from highly intellegent and articulate to a quivering, screaming mass in a matter of seconds does terrify them. If I am human it is because in the way we are all individuals, so we all fall apart in individual ways too. I got one of the more "Splatacular" ones.

Lene: We aren't meat dolls? We are equal to them, the walkie- talkies? surely not. If that were so then why are they the ones who tell us what we should think and then that we should be grateful for it - that's how you treat a pet, not an equal.

I am an accident of nature, and like a tree bent and twisted, the main trunk gone but it grows on, altered, I am a survivor - if evolution is their creed, I am a great achievement, because I still live, becuase I find a way, in a crevice or a bit of dirt in a hole in the rock to live on.

Gaina: No, the whole sitting and lying down is pretty much the same, and for friction movment on the clit, that is generally reduced overall, I can't say that some postition or sliding motion suddenly springs it back to full or partial power!

Yeah, I am 3-D that's true. As for the rest. I believe that some books need to be kept until the rest of the population catches up - I don't think a lot of libraries kept "STone Butch Blues" but it was a book that was important to a lot of people. Accidents of nature could change the way a young adult with CP or a severe disability looks at themselves, looks at the ways they are treated and makes them decide they want more - how much is that WORTH?

Veralidaine: Frankenstien's monster had anquish, both at existance at at the loneliness of it (both of which I experience), Dracula, is never portrayed except as melancholic. I don't know about putting humans on a spectrum of understanding suffering, but maybe the ramifications, the future, the terror as Queen slug mentioned, are more human. Though most pets really don't like going to the Vet - so that is anticipatory terror.

Yes, now I do get to wear my insides for outsides, and often I no longer need to write upon the body since the body is writing faster than I can. I terrify people. I was told today another 12 workers saw the "Seizures" and refused to come. So much for epilespy training.

Dawn: I thought, some of the comments you made, that you would understand, the stare into the future, the stare at the self and the stares from those around. I know you know it, even if sometimes it clouds you, I am only learning that.

They always mean well, the ones who lay thier hands on me to pray for me, the ones who tell me that THEY will contact God for me (hey lady, who gave this to me, you think I'm like a puzzle he forgot to put back in the box or something?). And always the alternative medicines - the only useful one, being victoria is the VAST amount of dope I have been offered.

Yeah, I have tried acupressure and PT, and other ones, diets, and various alternatives. I don't know any more who to trust, if YOU recommended someone, I would trust them, if Sharon (where IS she, what happened with the IVIG?), recommended, if Michel or others, I would trust them.

I get what you are saying, who wants to be slave to the opiates or have the fear of them not working quite so well anymore. Slave to that fear, yeah.

Abi: I don't want to be a path setter - that's what I keep telling them!

Thanks, go zombies! I don't think I would let my body dripp on any Zombie postcards I send to you - fair?

Actually you are the only one who joked, is it because you are avoiding too or accepting, I prefer to think the latter.

Anon: Yeah, kind of how like it was impossible for Shakleton (the explorer dude) and those with him to climb over the mountain with just a carpenters plane, to get to the boats, to be rescued. How do I do what I do, I don't know, that is what this was about - once you emerge from the closet of.....humanity (or are you one of the borg?), we can talk about it. I don't think any one AT badminton or boxing has those questions, nothing like turning funny colours in a few seconds or having one arm shrink while the other expands to make people get that maybe you are 'kind of really, really FUCKED UP' and then after being with me for a few minutes they also get that I am REALLY REALLY competitive. The two are not exclusive.

I am one of the, if not the most publically open person with a disability, I give you the hospital reports, I give you video - you can go listen to me on the BBC 4 (oh, that BBC, they never vet anyone!); you can even come see me pass out on Sunday at the race. Because I am on the news for the start of races, and you can recognize Linda and Cheryl carrying me out at the end.

Actually that was Linda who said my heart stopped beating so I'll let her know she's a liar too - oh and the doctor at the hospital. Come on, don't you want to go to Goldfish, and Wheelchair Catholic and the rest of them and tell them THEY aren't sick or in wheelchairs. Heck, tell Rick Hansen he's been faking it for years (Yeah, how DOES a guy in a wheelchair start an organization.....obviously bogus!)? On second thought, why do you read here? Becuase you want to masturbate on me, and I'm not cooperating any more? One way or another, I know the name of my disease, what's yours?

RachelCreative: Dying is always dark, so is torture, so is brain damage, so yeah, I'm going to be dark for a while. I am glad you will read the book though, it deserves reading, if you can find it.

Frida: Yeah, I kind of guessed about the not so helpful, that's why I got mad, I am glad it is official. As for the librarians, well, they didn't do anything becuase they weren't Jews and then when they took away the Communists, they didn't do anything becuase they weren't communists....

What about the front and middle, the meat doll, the clit, the hand in the blender, the muzzled Elizabeth with an IQ of 40 who screams and deficates herself?

Victor: Well, if I AM the human one, then who are these robots I have been facing becuase I KNOW not to treat people a certain way but the massive amount of people I face or are even cared by do not. So where are the other humans?

They certainly tell me often enough: not one of us!

schauspiele : an interesting time to rejoin - I hope you enjoyed the perky post today, the sex shots are a few back. The new sex shots to come. In between we have clit and death and a hand in a blender.

Neil: Tell your beloved that becuase of Neil I did call the ombudsperson today and that there is going to begin an investigation into VIHA (they say they can't investiage beacon). I also called the police - not much luck there!

Shea: Wow, I like you a lot! Don't say that around kids though, I've learned that.

THANK YOU for talking about the clit issue, thank you for acknowledging that I am having loss, and maybe grief, that I am having frustration and terror. I am glad you said it, I needed someone to SAY it, to stop pretending becuase it wasn't nice or polite (like getting my ass wiped by a stranger is going to be nice?! Like shitting myself is going to be NICE@!), thank you for being brash, and bold and letting me rest in your arms a second.

SharonMV said...

Dearest Elizabeth,
I'm here! Everything went well with my IVIG. I e-mailed you (or attempted to) yesterday, but somehow managed to send it to my drafts file instead of to you.

it is very hard to think of you going through so much - pain & loosing physical sensation, but still feeling so much in mind & heart. Experiencing the terrible effects of this disease, knowing both too much and not enough about what loss or pain will be coming.

And then to deal with the decidedly unhelpful and often hurtful comments of the uninitiated. I dealt with so much of that from friends, from family. Comments that would stun me to silence, make me feel that I'd been slapped across the face. And I wasn't dying, I was just sick. The worst for me was the "your not trying hard enough" concept. Yes, I gave up everything I love, my career, a family just so I could live this life of total loneliness & pain and brought all this suffering to my beloved, for lack of "trying". I just needed motivation. And there are always people who have diets, or supplements or something that would make me better. Who cares if their intentions were good? Can't they think? Have a little compassion? Have an ounce of imagination to consider what it's like to be in our shoes?

I was heartened to read the responses from your internet family. I have to say, that if such good people love you and leap to your defense against souless agencies and heartless librarians, and try to help you beat back the darkness, then you must be human.

And someone who could send me the postcard that arrived today, and the parcel (yes both came today!) filled with such treasured & heartfelt gifts), someone who can bring such a moment of pure happiness and lift layers of pain from my heart, she is be more than human to me, she is an angel.


Abi said...

Two things:

I joked partly because I am accepting (in an "I really don't want to accept this, but this is what is happening; this is who Elizabeth is" way), but partly because it takes eloquence to remind you of how human you are - you shot me down last time (but I'm not bitter *sniff*). Yesterday I did not have any eloquence. Also, Zombie Beth did catch my imagination, I must confess. She then sucked out my imagination's brains ;-)

Anyway, the path setter thing is not what I meant. They are narrow-minded and you are not - I see that as the essential difference between you. Sure, they can come and go as they please, can do the breathing thing with irritating regularity and ease, and hardly hurt at all (probably), but ultimately what matters is who you are, not what you can do. I do not see being wonderful as being a path setter, as I would like to see it as standard. I take it I did not quite get the point with that one!

The second thing is that I rather got the impression that anonymous was being nice - that the bits mentioned at the beginning were put there in an impressed manner, rather than in a 'you are making this up' manner. From my experience as a person who does not necessarily come across the way she intends, I would say this has just been expressed clumsily. It is one of the hazards of this form of communication (comments section of a blog), and seems to happen a lot.

Of course, I could be being naive (which has, on occasion, been known), but I don't think that this was an attack.

FridaWrites said...

Well, I think you're deinitely human no matter what you can or can't do, what you can or cannot physically feel. Although I don't think I have any nerve damage (my problems still seem to be clearing up), I have felt like a meat doll before for other reasons--it's a difficult space to be in. I had "functional" problems for a while too and had no idea why--it did seem to be a nerve issue then since it was the same time as the bladder issues. I wanted to yell, hello, everything's been failproof before, no problems, but was too embarrassed to address it with the doctors. I know that's oblique, but hoping it's at the same time clear. That's a difficult change for you, it would be for anyone, as well as the not being able to feel in general.

Dawn Allenbach said...

Oh, I totally do not appreciate people who want to pray for me. I can pray for myself, thanks.

This girl could also be a fanatic who thinks alternatives will cure everything. They don't. Fact of life that she needs to learn. Cancer is vastly different than nerve death.

I didn't realize how many things you've tried (I haven't been with you since the very beginning). Thanks for telling me.

More later. I'm getting called to lunch.

Blank said...

As an information studies student with a disabilty who wants to live in Victoria (I'm currently studying elsewhere in the country), I find your experience at the VPL really disturbing. These librarians will be, very potentially, my peers. Even if I head off into archives or corporate libraries, these are people I will interact with and who perform the same basic functions as I will. If academia can deal with disability, at least on a level that lets us participate as equals on our own terms, then why isn't that translating to the students once they hit the professional world? That makes them dismiss you and your concerns? We have a whack of advocacy groups in the faculty; maybe we need a Disability Advocacy club as well. Because I think I would have loved having books, would love having books, that reflect my life and the changes I've had to make.