Saturday, March 21, 2009

Beth's insecurity day: A postcard upon thee!

I have been accused of a great deal of things by a number of (anonymous) individual, including being a thief, a liar (mostly a liar), and again the implication that I am a cult leader (please bring the police BACK!): “I'll "hide" behind anon, cause I see how angry you were at Lindas boss.” Er? The death ray on my new chair is entirely fictional!
This has gone on long enough. I am accused, without a face, of yet another form of lying. The accusation that if I get angry, I want to harm someone, if I ask people NOT to harass someone, I am also asking them TO harass or harm someone (see comments in last post if this makes no sense). And quite honestly, this warped world view is an illness which the internet assists. But it is also an illness which hurt me and those I love.
I am often (anonymously or not) accused of lying, that I just can’t write so well. That I can’t have Raynaud’s and work at a variety of jobs (which the post on Raynaud’s show that people do, unless they all lie as well). That I can’t have a memory dysfunction and yet be able to write, different than before, slower, but with edits and practice, that it must be impossible, or that I am lying is some way. I ask these people, please believe in more than what you have limited your minds to. I do what is possible, not what the limitation of what is expected. If the limit of your mind is all ill people should lie down, then I will always be an affront to you. Believe in yourself for goodness sakes, believe that humans CAN defy what tries to limit us. I am burdened, I am bruised, but I am not dead yet.

I have a new rule. Whether the people who post Anon or not realize it, some of them are ill. So if you want to post Anon, I have no problem with that.....as long as anyone with these intense feelings (doubt, that I am a liar, etc) visit the postcard project and ask for a postcard. You will see a sample of what type of postcard you might get, you can ask for the type of postcard you want and you will get a gift FREE. And every few months following free again. Why? Because I care about you as a human being and there is something wrong in this world when cynical nature is allowed free reign. Perhaps it comes when leaders of countries get up and say they are liars and they need to be. I don’t and I’m not.

Basically this is put up or shut up. There is no limit to what the different Anon’s want; the BBC is not enough for them, photos, videos, pictures of me losing weight is not enough, reports from specialist are not enough. There come some point where, no, actually, I don’t need to scan all my medical reports on-line. It is the very nature of my being open and honest which draws the people who seem to disbelieve that such things can occur (unless every other blogger who doesn’t post their name, the links to newspapers, online journals, videos of themselves and other things gets this level of harassment regarding their disability – please let me know).

So, you ask for a postcard, I send the postcard, you either graduate to a name....or shut up. You have asked for proof that I am who I say I am. If a couple hundred thousand words and several hundred pictures are not enough, then nothing will be. To the Anon’s: You are ill. I am trying to help you get better. I want to show you that though, full of bile and with a sickness with distorts the view of the world…..you CAN get better. You can regain your trust in at least some people. Or you can choose to remain as you are. But not here.

If any individual feels that I have stolen from them, please contact me. I will return what you feel has been stolen from you with as much extra as I have available. Because the idea that someone genuinely believes that I took from them without appreciation, without thanks and a feeling of love from the manga I read, to the probiotics which allow me to digest food, to the rubbers stamps and postage stamps you see in the new Postcard Project post, have all been put into use.

Yes, I did beg for Linda’s sake, (also on the street for Kittens in Japan), David has enough press I hope jaded minds believe he exists. Again, if anyone feels defrauded for Linda’s sake I will do what I can to repay you. I am selling manga on ebay Half of the money is going to pay what I borroew from my father some months ago, regardless that he doesn’t talk or see me. I promised to repay when the manga was sold. I keep my word. The rest was to be given to Linda to fix up the van which takes me and my wheelchairs to hospitals, to specialist appointments and to Booth Gardner and currently has a light on saying “Check Engine” – which she did and it is going to cost a little, enough that I hope to make the money myself. To surprise her that I am more than an unemployable lump of disease, I can be of use once in a while. But if you feel that I stole from you, that Linda was not in distress. I will endeavor to pay. Money is a sad necessity regarding disability and disease. I wish it were not so. No, not having a good day if you are wondering.

For regular readers, I am sorry this is rehashed AGAIN, it is just that having been in contact with different people, including my own father, (the one who only sees me once every few months) hinting that the blog is a source of strange fiction; that since I write fiction, then all this MUST be a work of fiction, as it is interesting and entertaining, but it is not REAL. Not like happens to REAL people like them kind of REAL (you know the scary late at night REAL), something they don’t want to believe (who wants to believe a daughter dying). Except that statement or implication is incredibly painful for me. Because as I struggle with so much, for example the fact I don’t have working bowels (this takes up WAY too much time when you don’t!) plus regulating temperature, oxygen levels, and anti-seizure meds, while I try to produce a post every two days. I try to say HERE what it is like, show what is like, the good and the bad. To show it in a way I cannot say anywhere else, to people who can understand: the fear, the pain, the frustration, the moments of joy, the moments of morbid humor, and the just going on in spite of it. That to have a disease or a chronic illness sucks, but it also creates a unique human experience that I want to chronicle: even if people who read don’t want to believe.

No, it isn’t like the movies, the hospitals are four to a room, unless it is Critical Care and then it is 12 or 16 to a room. And there is no billionaire Roomie who is going to let you write up a list and then fly you off in a private jet. You will however hear more monitors than you ever wanted; you will overhear the staff talk about how number 12 died or asking what they are doing this weekend. And more often than not, it is on here, the internet that you find members with your disease or with chronic conditions which help you from feeling alone and isolated, from surviving the ‘bump of disbelief’ yourself: Not ME!

I was going to talk about a shotgun marriage I was forced into recently, and will do that tomorrow, as soon as is possible. Because I am starting to get intimate, and they haven’t even asked me my name! But that is for tomorrow. Sorry today was ‘Beth’s triggered insecurity’ day. Geez, I have a cluster of anon’s about me! Either get some postcards or “Shoo! Shoo!”

22 comments:

Devi said...

You're handling this way better than I ever could (not that you even owe the anonymice to justify yourself to them).

Lene Andersen said...

You're a better woman than I am. I'd delete all the anon comments and tell 'em to go fly a kite. Effin' cowards.

I'm happy to be in your cult. The cult of EFM and FOR (Fuck On Regardless) - a cult/club that looks debilitating illness square in the face and laughs. Because suffering decoratively and quietly in a bed IS BORING!

Happy 1st day of spring! Can't wait to hear about the shotgun wedding.

FridaWrites said...

What I've sent are gifts, the same way as you've sent me gifts.

I did have one person on my blog imply I was imagining things, but that doesn't really hold up to the detailed lab reports and radiology reports. No, I don't get harassment like this on a regular basis though I might if I were public because of my employment.

When I was a kid no one would believe that I am a twin since my sister and I look very different. No proof, not even pictures of us in the same incubator at the hospital, was good enough for them. Now as an adult I still run into people who doubt and who want basically every single medical detail. I feel like asking them if they want me to make copies of my medical files for them to browse at their convenience.

One Sick Mother said...

Elizabeth,

I am amazed that people think they can come by here and judge you without qualification.

Some may say that this is the internet; "freedom of speech" etc etc. But this is *your* home on the internet. It is right there on the URL. And guests in your home should show some respect.

Gaina said...

((HUG)). I hope tomorrow will be better ;-).

Elizabeth McClung said...

I guess I was disappointed that there we enough Anon's reading and caring and upset that I WAS a liar. Why would they care? Why would they keep reading? Essentially they wanted entertainment and when I strayed into claiming I needed time off for being ill, they got nasty? I answered every question of them, and yet there was always more.

You can hear my voice on BBC4, you can see my picture up at Arsenal Press, you can see me in book reviews from National to local magazines, you can read about me with pictures in Monday Magazine repeatedly, I am also in the 'Victoria Guide' under 'Cool People of Victoria' with my picture in a Cemetery. You can call the BC parapalygic association as ask if I am a member, you can check my race times for wheelchair racing, I have made myself and my life public in order to make others feel less alone. I was hoping for MS, I didn't get that. Bummer. Pictures and videos of my hands, myself pre-seizure, it is still not, never enough. $35,000 in two wheelchairs and a hospital bed which require a Doctor, and OT and a PT, all in pictures...not enough. What IS enough? Everyone knows me, ask Dave Hindsburger, he met me, ask Zephyr, why do I have a burden of proof which is five to ten times that of any of the specialists I have visited (I never remember needing to see their licence, class list, graduation pictures). All to say, I simply to talk about being sick? If I did not know what chronic and degenerative illnesses were like a host of the readers would tell me: people who have degenerative and chronic illnesses, the BBC readers would have told me. And yet, every day, there is some sort of hate mail or another. I dunno, does wheelchair dancer when she goes off for rehab get a host of comments telling her she isn't a dancer nor is she in a wheelchair, nor is she from NY? Does Goldfish, does the Gimp Parade? Why is it, the more public I become, the more impossible it is that I could even want to make this up, the more it become clear that people WANT to believe it isn't true. To know that and then try and write makes it like typing on broken glass, all jagged edges.

Is it my fault that I have a disease which is unusual (and yet, if you looked it up in detail in the medical books my presentation is rather textbook in most ways, particular the parts people think are fictional - yet I am supposed to provide the evidence instead of people simply doing the basic research THEMSELVES - because it is the internet where all are master to anyone who exposes themselves. I admit usually it is pedophiles who are angry that I write negative things about them, so that many someones are SO concerned that I will, what hunt them down in an electric chair you can outwalk? Or that I am a horrid creature out of control for being upset that someone systematically abused my spouse - should I be happy? Does the tears of your spouse and children make you upset, or am I just, like so much I end up getting attacked for on the blog, NOT SUPPOSED TO TALK ABOUT IT.

Devi: I felt I had to handle it because in the last post 6 of the last several posts were Anon's all attack on a post which says, "I'm sick, I'm going to be off for a few days." - they attack because I am sick? Apparently.

Lene: Yes, I admit, all our conversations and when you heard me on BBC4 was a ruse, a horrid ruse and my real name is Billy and I am 9 and live in Agentina.

I agree with you that the main issue seems to be that I am not doing what I am expected to (ya damn WOMAN!), well, no, I don't. I have a strong will and like you, a problem with wanting to DO so bad I get myself into physical issues of immobility or in my case, possible mortality. I wonder yet if your Heath Central readers question if you have RA at all - or does the narrating of the experience tell them the truth far in excess - they come because they want to be with someone who KNOWS.

Ah yes, I look forward to writing about that - which I did half of but decided I wasn't attaching it to THIS.

FridaWrites: I feel the same way. If Canada HAD a disability act, I would be able to get employment, and I would have been able to provide for myself and create a nest egg; sadly that fell to Linda who then became disabled herself, so from two possible incomes to a percentage of disability income, not great when change and degeneration cost, as you were finding out with your own medical costs.

You posted radiology reports? I have about two inches of tests but I feel that besides Booth Gardner, why should anyone in the public domain have my confidential information. To the next person who doubts my illness on lack of medical info, my response is, "You post your medical files, including all of your pap results, urinary infections (or for the men, your prostate checks) under your REAL name, and I'll start making some copies of MY confidential information - please remember to include all blood tests for VD's."

Actually in my case, that doesn't seem enough, I imagine if you were to give them a birth film they still would say, "How do we know that is you in the film." - when people get the cynical bug, they are ill, and need a hug and a cure! (despite the strange odd to give them a slapping instead)

One Sick Mother: Well, I guess a) it is easy to kick people once they are already on the ground and b) I did become SICK without qualification, and in our society, since what I say does not match the 'if you eat granola you will live until 90' OR TV medical shows, then obviously I must be lying. While I can tell from the comments that one is a) from the US, b) NEAR a large medical center and c) has health insurance and d) Doesn't really know what the term 'rare' means - if it can be put on a medalert braclet and the ER people recognize it - that's not RARE, that rare amoung the general population but it might be something the ER people see every week. Coming in with a flesh eating virus which will kill you in 5 hours, that is rare, and we talked it over and decided that the likelihood of Bouchard (who lived in Montreal, a major center for specialist and had to have his leg amputated after only three hours of going into hospital with an odd bruise, and went on to become leader of the opposition in Parliment) going to Jubilee and getting past the Gatekeeper nurse in the time it would take to travel to his heart (bruises come at the END of the line) would be high, that they would recognize it even if admitted would be very low. But then, as my hospital states proudly, 'No point in making a formal complaint as we have so many we can't get back to you in 30 days as legally required' - joy!

I understand why this is why other people have levels of not disclosing name or location or putting videos of themselves up, and such, but I am a writer, and this is a great story (in the journalistic way). Plus I have a strong will, but no stronger than most like Yanub who drives with dislocated hands and fingers, and shoulder ("But that is simply impossible, she must be making it up"), or a mother who has a creeping peripheral neuropathy and still is a mother to her kids - impossible right? Must be a work of fiction! When you meet hard, you find out what is possible. I think, and I think we both have done that.

Gaina: Well, I spent until 7 writing the damn thing so I asked Linda if we were Vampires, so I am off to find some blood to suck (wow that does sound sexual!).

Gaina said...

'Gaina: Well, I spent until 7 writing the damn thing so I asked Linda if we were Vampires, so I am off to find some blood to suck (wow that does sound sexual!)'.

Ever read the 'Undead...' Series by Mary Janice Davidson? Hilarious. The first one is 'Undead and Unwed' and it's available as an audio book (on CD).

yanub said...

Beth, I continue to love you.

As you understand so well, we do what we need to do. We fall down? We get up. We can't get up under our own power? We accept help, but we still get up. If there is no help? We will crawl. I think all of us who are regular readers here know what it is to crawl, either literally or metaphorically. We gather here to encourage each other to crawl when we can't get up.

Lene and Devi, I'm with you. I would be deleting any nasty anonymous comments. And here's Beth, as usual, reaching out with her heart. Bravo, Beth!

(PS to any anonymous: It took me 5 tries to spell "bravo" right cuz I kept missing the keys. And yet there it is, spelled right after all. You don't get to see the typos because I catch most of them. Just like Beth does.)

Laura said...

To Anon,

I think that part of Anon's problem is that they don't know the Canadian Health Care system. There is a world of difference.

One case that is in the public eye right now is the case of Natasha Richardson. There were several breakdowns in the system. First, the EMT's turned around when they saw that she was being taken into the resorts clinic. When she did seek medical attention she went to a hospital that was two and a half hours away from a trauma center and that the hospital that she did go to didn't specialize in head trauma. Then to top it all off the Province of Quebec lacks a medical helicopter system.

This is only one example of the differences in the Canadian Healthcare system and the U.S. system. I have seen many more differences by watching "The Critical Hour" on Discovery Health Channel. There have been many instances that I have heard the Chief of Trauma state that an injury wasn't in his area of expertise. This happens to Elizabeth all the time especially with GP's. The doctors in Canada just refuse to treat anything that comes close to "not my area of expertise" In fact, from what I have seen anything that may take a bit of research on the physicians part falls under the "not my area of expertise" clause and they refuse to treat. That in turn forces the patient to bounce from one physician to another. When that happens the new physician wants new tests and the whole "not my area of expertise" situation gets repeated again. The patient doesn't get treated for anything or if they manage to convince the physician to treat then it is minimally.

I don't think that I need to explain what happens to those who are not working or who fall through the cracks of the Canadian system.

That is why I support Elizabeth. I understand what she is going through. Anon why don't you ask about some of the wait times for some of her appointments. Some of them have been months before she could see a specialist. Then the specialist wouldn't treat her.

Anon, you really shouldn't criticize if you don't know the whole situation.

Elizabeth McClung said...

Gaina: I did I think, she dates people and there are all sorts of vamps or she is with a vampire?

Yanub: I said to Linda yesterday, "When did horrific, unpleasant or nearly impossible" become part of living my condition? But it does in many ways: a medical test has to be done, regardless of phobia; an impaction has to be cleared; I bang myself, I have some sort of brain issue, then though the right side is paralyzed, I keep trying to get up into the chair to type as I can for the next many hours, because I was not going to sleep with the Anon's of the world dictating the pace and view. I changed it to: Accept love, or if not, I will wait until you can.

Thank you I am very grateful for your comment; those who know, know. I should stop accepting your occasionally rascally facade and figure out how to lift your heart. Genuinely lift it.

Laura: Well said, I wish I had time to expand but you did a great job. I am thankful to have such a friend and family member as you. I am about to experience US medicine in two weeks and I am terrified in case it turns out to be like Canadian, or worse, that they do in 5 hours what we fought two years to get accomplished and I cry because I think of the time spent, the time wasted. I don't know.

cheryl g said...

I am very sick at heart that anon's (all of them) words have hurt Beth so much. Elizabeth McClung does NOT lie. Her personal code is one of honor and integrity and honesty. To call her thief and liar is proof that you know nothing about her and are voicing your own prejudices.

All I have ever given and will ever give Beth is done freely and without reservation. I am witness to her life and needs but even if I weren't I would still believe her and give.

I am insulted that anon passes judgement on me and my skills while knowing nothing about me. Frankly, I don't see why any of it matters. If you are so bothered may I suggest you go read a blog more suited to you.

I am proud to call Beth friend and sister. I am honored to have the opportunity to learn from her. I am hopeful that I can follow the example she has sent.

Baba Yaga said...

Two thoughts: I read somewhere that "disconfirmation strengthens belief". Even if 'proof' were a reasonable request, which it is not, you're correct - every proof that you offer will only tend to harden the incredulity of those who have an emotional investment therein. That emotional investment, however, is theirs. (But it still hurts.)

The other is that all health systems are broken, just in different ways. People don't want to believe that, and they especially don't want to believe that the more difficult something is to treat, the greater the chances that all the systems supporting treatment will break down.

It's odd that rejecting the message leads to rejecting the messenger, but so, we are told, it has ever been.

rachelcreative said...

It's bullying - plain and simple.

A very useful article here on cyberbullies

http://www.bullyoffline.org/related/cyber.htm

"The Number One rule for dealing with this type of behaviour is: don't respond, don't interact and don't engage. This is not as easy to do as it sounds. It's a natural response to want to defend yourself, and to put the person right. However, never argue with a serial bully; it's not a mature adult discussion, but like dealing with a child or immature teenager; whilst the serial bully may be an adult on the outside, on the inside they are like a child who's never grown up - and probably never will. Serial bullies and harassers often have disordered thinking patterns and do not share the same thoughts or values as you."

It includes practical advice on what to do.

It's also worth underlining that bullies like anon are likely to pick you as a target because you are:

- popular with people
- have a strong sense of integrity
- refuse to join an established clique
- possess a well-defined set of values which you are unwilling to compromise
- show independence of thought or deed
- being the expert and the person to whom others come for advice (you get more attention than them)
- you have at least one vulnerability that can be exploited
- more than anything else, the bully fears exposure of his/her inadequacy and incompetence; your presence, popularity and competence unknowingly and unwittingly fuel that fear


Plus targets of bullying are often just in the wrong place at the wrong time. Bullies are predatory and opportunistic.

Elizabeth - it's important to realise bullying isn't about the target's weakness or inadequacies. Quite the opposite in fact.

If you are able to read some of the article you may find it useful. Particularly the latter parts about what you can do.


Just to be perfectly clear Elizabeth and Linda - anything I have ever given has been a gift. I want nothing in return. You don't owe me anything. I wouldn't give anything I didn't want to part with or could not afford to share.

Elizabeth - spring has arrived in my corner of England. The frogs in my garden pond are getting ... ummm ... let's say active. The birds are chirpy. I saw magpies (2 of them - joy!) gathering materials for a nest off the back lawn.

Even the cat has been happy to stay outdoors for most of the day now the sun has returned. He's perfecting his tan already. He's black and white but his black bits go quite rusty brown/red after a lot of sun.

I sent you a surprise on Friday so it's on it's way to your mailbox. Hope you like it! (Given of my own free will with much happiness).

JaneB said...

You are an impressive human being Beth, finding compassion and even humour in such a difficult and annoying situation. Hugs!

Proud Member of the cult of EFM is NDY

Neil said...

Beth, dear Internet niece, the only thing you have stolen from me is time, and I don't regret that one bit.

I only say that (with a smile!) because I start reading your posts, then read the comments, make a comment, and suddenly far too much time has flown by and I need to hurry to go somewhere. Like now, when I should be getting into medieval garb to head off the the Sask, Science Centre's medieval science display.

And to be honest, I GIVE my Internet time to you, you don't really steal it, of course.

Now, I do wish I could give you more real time; years more would be nice. I'll have to look into how to do that. Good doctors might be one way...

Love and hugs,
Neil

Stephanie said...

I would just ignore anonymous commenters trying to get your goat, but sending a postcard is such a nice idea.

I am doing my own postcard project, but Austrian mail is sooo sloooow.

FridaWrites said...

Elizabeth, well I haven't posted radiology reports; it's people I know offline who on occasion want that much detail. Some people ask because they care or have similar problems, but when it's someone I don't know well at all, it can be offputting.

I have found some people who have been cynical in the past (in person) have become some of my biggest supporters/advocates because once they've hung around with me they realize that things are as I say (both health and disablism) and are often understated. I think sometimes there's disbelief about disablism in particular because a lot of people wouldn't behave that way to someone in a wheelchair themselves.

Gaina said...

Beth, the first book starts when Betsy gets attacked by vampires on her way home from work and becomes one herself. Then she finds out that she's destined to be Queen of the Vampires....and it all goes downhill from there. LOL.

They are hilarious, and not without their steamy moments (if I remember correctly, a little bit of Girl Action is suggested which I am sure you will enjoy **wink**).

Raccoon said...

Hrm. On the comments from your last post, someone thought I was female? I'm sorry, I have a handle, not radio knobs.

Is there any way to stop anonymous people from posting to you? Probably not.

And the kicker is that when you get frustrated or angry at them, it triggers the seizures, etc.!

Everything that I have given to you, to the both of you, has been freely given with no expectation of return. And that will continue to be so.

I, too, seem to find myself a proud member of the Cult of EFM the NDY.

Anonymous said...

I am so pissed off! Why must good people suffer and SOB's live a rosy life hurting others just to get their jollies!! Beth you are much, much, to kind to these animals that attack you! Will to live will keep a person going and I admire your fighting for not only your life but helping others! For your ability to try your hardest to have a quality of life! If doctors don't know everything then how can these a**holes? I've had Fibromyalgia for years, no one believed in it until so many people came down with the same thing that it is now accepted as a legitimate diagnosis. I have Chronic Fatigue Syndrome, most think this is a bullshit diagnosis but eventually so many people will have the same problems and it will be legitamized! I asked my doctor if he believed in CFS/ME, he asked me if I believe in headaches? Yes I said. So he said if you tell me you have all these symptoms then I believe you. Many people in the health care profession think that everyone that says they are in pain are just drug seekers-until the day comes when they experience the pain and have an aha moment! Beth you've helped me emotionally more than you will ever know! For over 3 months I thought that I was going to end up in a nursing home, I was abandoned by so many and distraught with the monetary, physical, and mental problems of going from a hard worker and strong ass woman to a bedridden individual! Today I went back to work thanks to a seizure med-obviously I was seizing while sleeping and couldn't function. But in all reality Beth you are the reason I went back to work! I made a pact that if I couldn't be with my animals then it was time to let go because they are my life! Reading, seeing, and feeling your fight, tenacity, and will pushed me to not give up! I may still have MS and multiple other medical problems but this battle was won because of you!! Much love and hugs, Bronwyn

Tom P. said...

If you are a cult leader, I want to be in your cult! If someone believes you are a fake then why don't they just go away?

I took my daughter, Beth, to MOMA (Museum of Modern Art) over the weekend. Some pictures on my blog if you want to see. I wish I could have taken you. I think you would have had a good time even though there were no squirrels to feed. ;)

brochure printing said...

You are an impressive human being Beth, the only thing you have stolen form me is time, and I do not regret that one bit. On the comments for your last post, someone thought I was woman?