Sunday, March 01, 2009

See me in the powerchair! Also postcards, packages, isolation and no GP

Doing, and planning is a form of resistance, of overcoming against the obstacles, even if it is your own body, to achieve a goal. Which is a big word way of saying I got stuff done yesterday and today!

Cheryl came over with the mail/post, which is a big event. And often interesting letters or postcards get read out to all (see, if you write to me then you already have an audience!), unless there is private information involved. Also, as sometimes, like for several hours yesterday my pupil on the working eye stopped focusing – I was a bit like a broken camera. So the letters are read out to me.

So it was time to show off the new power wheelchair, which after all the people saying, “Please don’t run Cheryl and Linda over!” and “Be careful as those suckers hurt!” and stories of chipped teeth, I am scared of my chair. I feel like car when they first came in, there should be someone with a red flag walking in front of me to warn all that Elizabeth and a Power Wheelchair are now approaching…except I would probably accidentally run him over too. Some nice people had sent packages of clothes so I tried them out. One was a top from Hot Topic, with switchblades but in MEDIUM (and that is medium juniors, so like 14-15 year olds medium) and I said to Linda, I am an over six foot woman, I may have shrunk to a LARGE but not a medium. I tried it on, it fit good, in that just tight enough to accentuate your breasts way! And I wore my Converse with red skulls and then some converse earrings another nice person had sent me. So here I am in the chair, junior medium top, size six ‘skinny’ jeans and I think a 14 inch seat cushion. But here is what $23,000+ looks like. Not really that impressive, but it is supposed to be small so I can use it indoor and outdoor.

After that I asked Cheryl if ‘the package’ had arrived and it had. I was waiting and waiting for this order from Japan and it finally arrived! Linda and Cheryl helped me quick, quick with all my stuff (oxygen, gatorade, etc) and down to the printing and framing store so I could get these done and then write a letter and sent it back with Cheryl in 22 hours or so. I was trying to find the right matte and the right frames for the art, and then get them sent out so that people can have them to cheer them up. I would send a lot more but between buying, matte and framing, I am limited in how many I can send off each week, much less other presents. Here I am working on the matte for a framing job for next week,I had brought along a few things from ‘the package’ which I am going to send out soon (as soon as I can afford it). All out to different people to give them a bit of a lift and a little thanks for being such nice people. I don’t think people get thanked enough, so thanks. And also, this way you see a small part (about 1/15th) of what I do to get a ‘presento’ as I first have to get a sense of the person, then find the ‘right’ gift (which is of course sometimes NOT the right gift), and then save money to pay for it, and order it. Then I save money, wait for it to arrive, email the vendor about when it was mailed (turns out they forgot), wait more, save money for framing it, take it to the shop and get my favorite framer M. to custom cut the matte. Sometimes the matte is in silk. Then to package it, write a letter or note to go with it, and then have Cheryl mail it when she returns from a visit. But when someone shows they care about you, then I want to show them I care about them too, even if it is only in this little way.

Unfortunately M. has a new job and was not there and this woman in a black turtleneck said she would do it. “Are you as good as M?” I asked.

She said, “No as M was totally amazing and very good and there was no way she could match that level of skill but she did get taught by M and though she isn’t as good…”

I said, “This really isn’t a very confidence building speech.”

But she did a great job and off they have gone, mailed/posted already I think.

We also did postcards, which I started with Linda on Friday, 37 postcards in all. I am trying to do 100 a month now, as a reasonable goal, maybe 125 in a very good month. I want a sustainable goal. So we picked and we matched them (oh isn’t the baby Lynx just too cute you want to explode from cuteness?).
Then there was stamping and stickering and then sending them out (with a list so we can keep track of who we have sent out to). Here is a shot of some of the ones last week, which were yaoi and yuri and cat girls (before you ask, no, I don’t have any more cat girl postcards, they all went – I could USE anime catgirl postcards as they are very popular, and all my cat boy postcards are now gone as well!). Postcards are hard work, with the stamping and trying to get into 37 different minds to find out what they would like the best, but at the end I am very glad I do it. But it does mean that when Cheryl leaves on the Ferry at 3:30 on Sunday, I am totally wiped – having worked straight from Friday onward. As packages, postcards, copies of Zed and any items ordered as gifts damaged to be returned all processed, packed and AWAY! Whew!

So that was my weekend, if it had been sunny I would have been out with pictures of me feeding squirrels or by the ocean. But as it was a miserable and COLD stay indoors day so we watched Stephen Fry travelling around America (thank you for that DVD gift – we only watch it when Cheryl is here), ate our food together, talked and did postcards.

I talked to Cheryl before she left and she said that I should give the readers a chance to tell them the truth. I said that when I open myself up, people often talk about anything EXCEPT the main and painful topic which makes me feel even more alone. And that is what is making me, well, sort of disassociated, a danger to myself and in deep emotional pain: the state of feeling alone. I don't know what to do about it, nor does Cheryl. To give you an idea of the level of inner pain, I WANT to go back to sleep about dreams of concentration camps or the one last night where they gouged out my eyes because I wasn’t alone anymore. This of course, as the feeling of being alone grows makes me think, as I regress mentally that if I just gouge out my eye, I will be happy again.

My opinion is that if you want to return to a dream of a concentration camp because while you are dying or being killed off in the camp, at least you have an identity; instead of waking up and being HERE, then there is something wrong in your life (beyond the pain and dying stuff).

Cheryl said that she used to go up on the roof and I think many readers used to as teens go up on the roof to be alone. I like this picture because it does represent to me the nature of urban isolation – an apartment complex of so many people and yet so alone (except the cat wandering by). That girl will have a ways to find that shoe falling off. Of course, sometimes we WANT to have some alone space, as teens, to get away from all the stuff piled on us from what seems every adult. To be alone and yet not feel alone. Some people are happy alone, some including me, need alone time, and yet many feel alone.

I am in a state of acceptance. I accept that I will die and can at any time, and I accept that I will and plan to live for some time (like 6 months or more). Both produce a frenzy of activity, to finish what I need to do before I die, and to be in a frenzy of activity to get a book and other things done with this new chance of a future I have allowed myself. So I don't tend to react normally, like when I have what appears to be a blown pupil (which indicates bleeding in the brain) but turns out that I am blind in one eye and my body is so tired the pupil is fixed and cannot dilate. And yet, I am not scared, or worried. Who can I share this with, what does it mean – it either means I am dying now or dying later, right? That last line is classic disassociation, I have become a person who doesn't feel the fear I should normally.

So yes, I am having a bit of a breakdown because I am painfully alone.

Also I currently do not have a GP, or doctor. Or to be precise, due to a letter sent asking why no treatment, no pills, no specialist referrals had occurred for nine months, the clinic took that letter and decided that instead of treating me, to dump me as a patient (yes, it is legal, in this city, labelled a 'red zone' any doctor can drop any patient for any reason).

So Cool Aide which treats homeless, drug addicts, those with mental problems and anyone off the street decided that I was no longer a patient of that clinic. And that was due to the fact, I was told, that I failed to take ‘patient responsibility of providing a general and overall diagnosis.’ Which is odd because I thought that was the doctor’s duty. Also, since 1 specialist named what disease I have, 1 alluded to it, and all of the specialists I have been to as well as the hospital diagnosed autonomic failure (which only HAS four diseases, well five if you count late stage lung cancer), that pretty much IS a diagnosis. Booth-Gardner was appalled. So was I.

I was told by same GP who wouldn’t even take an X-ray of a toe which the wheelchair techs felt and said, “Yeah, there is something wrong there, broken or something” that I had ‘deep mental issues.’ Why is it when we send a letter asking why I am not treated, then I am the one with 'deep issues?' Which while I should take as a compliment as in “You have deep issues in which you do research, you bring me the latest reports from Canadian Neurological Journals and you have a clinical mind!” I didn’t think it was meant that way, though that statement was squeezed between an excuse by the medical representative of the clinics’ directors and the GP why not to send me to a respirologist (as my fingertips were blue AND I was on oxygen), and more reasons why not to treat the anemia (the hematologist will do it), and then why not to refer me to the hematologist.

Stuff like that reinforces that a) I am alone and b) People will leave. Luckily I already have a GP who is interested in the case and offered to take it on. We would like to see what other options there are, as signing up with the new GP NOW is like getting married BEFORE the first date. Booth-Gardner can’t understand how treatment isn’t part of medicine as ‘medicine is a treatment based science.’ To which I said, “Ahhh, I can see you haven’t been in a socialist medical system, where medicine is to minimize treatment which is given only after definitive proof (from many sources if possible)." To rub salt in the wound, in visiting a walk in clinic to get the medication that was supposed to be provided at this meeting (“Come on in so I can renew your prescriptions” – aka “I’m about to dump you so let me lie to you about the real reason of the meeting”). The doctor at the walk-in said, “It is good you have such a proactive GP as without one with all the specialists you would need and the treatments you would require, you would die very quickly and receive very little treatment indeed.”

All that happened a week ago.

It turns out that while you KNOW they are going to say you have ‘mental issues’ (you are a woman, of COURSE they are going to say it!), it still hurts, ya know.

I thought everyone had enough to worry about right now, honestly, so I didn't tell you till now. Because the truth is that I AM trying to make my life into a normal life, one in which I live a day at a time, and I live like other people except in needing assistive devices. While most people take the life in the picture for granted, that is what I have been working toward for many, many weeks. And I still am. I want the casual just state of being. The latent enjoyment and sense of life in the picture.

Ignore the GP issue (I do), and I am still lonely. And lonely even though I know Linda loves me, and helps me, care gives for me, shelters me and when I regress she is there for me, to read me stories, to be with me. To give me cookies, and with the loss of function I am now experiencing I expect I will regress more and more, as my memory and word function seems to be being progressively affected.

But even though I am one of the most productive severely disabled people I know, I still pass out several times a day (about 20 or 30 yesterday, and a few already today), and I am not sure if I am productive because I am so incredibly alone. I know that people find my experiences to be a way to articulate their own, and I don’t need someone dying of a weird and rather horrid disease to feel connected, but I do need to feel connected. And most of the time, I don’t. Honestly, I believe that people, as they get to know me, will leave, and do leave. Last year I asked for a family, and many of those people are gone or have quit, while others, some who did not volunteer have become almost like the elder brother who left home while I was young and says, “Hey, you are always family.” I don’t know how to respond as I have never had that experience before, except to fear when they will leave me, to love while living that fear. I know that sounds pretty horridly neurotic, except that everyone DOES leave. And sometimes we need to be reassured, even cat girls need reassurance. It is odd but pets need and get the reassurance we love them that often we don’t give to other humans.

I work on blogs, gifts, emails and postcards...alone. I wake alone. I want to let people in but I don't know how to help people see what I am seeing about life and myself; about where I live mentally. Honestly, most people who even get close don’t WANT to be in that space. Sometimes, like getting Miko the kitty, people recognize I can be driven and yet have the mental and emotional needs of a child. I have a soft side, a feminine side. I needed that plushie. I needed to feel I was ‘like other people’ in reading; so people sent me manga to read. It helped. And thank you, I am trying very hard to figure out how to be happy, how to be joyful and how not to be alone. And while I do that I work hard to help other people not to feel less alone too.

I am glad I sent postcards. I hope they make people happy. That is important to me. As even a single drop makes a ripple (this is a new Doujinshi artist I found, they are VERY good). So I want to make as many positive ripples as I can.

About the alone, I WANT to be like other people. At first I was too smart, so I didn’t fit in. Then I was “crazy” or “way too driven” or “no one has ever done that” to fit in (actually, calling someone 'crazy' or 'nuts' for trying as hard as they can hurts emotionally). But instead of being glad, people got mad at me for trying new things (people like: organizers, directors, people in ‘charge’). Be all you can be! Well, not really, it is a good slogan for disability but not one that is encouraged when you actually DO it. Same goes with BC wheelchair sports, who emailed me that the use of pot will cause an automatic suspension down to a warning and thus will not allow a person to compete, even if it is prescribed. So I guess for those with MS, or other conditions, Wheelchair Sports isn’t for you if you use pot as pain or sleep control. That means except for Spinal Cord or Amputation, the rest of disability (the ones most likely to use medicinal marijuana) is told plain out, ‘We don’t care if you have a note from the Canadian government, you compete, you get disqualified.” I can’t imagine how they view competitors who are competing on high doses of opiates or steroids; when the rules of AB sports are applied to people who have conditions from cancer to chronic or degenerative illnesses only increases the feeling of “not you, not one of us.” Seems I don’t fit in with the cool kids, huh.

I will continue to post on the blog and do things on schedule, I will continue to work on my book and I will be going to a counselor to find out why I want to and try to stick knives or scissors through my rib cages or hands. Maybe it is part of the mental deterioration. Maybe it is the only way I know how to articulate inner pain.

After this, back to the light stuff. I will post blogs about adventures in bikini shopping and the humour in that, and planning the dreaded bikini wax (go go peripherial neuropathy!). See, because that stuff all occurs, all the different emotions occur at the same time: living for this moment, preparing for death, saving for a future, preparing for a future (like Autumn 09), being there for people, encouraging people and feeling so alone that I do stupid things to myself. There isn’t a separation; it is a jumbling knot of yarn that the cat has batted around so often you don’t even WANT to try and figure out how to unravel it.

I want to save for the future, for Sakura-con, for a normal life, and I guess talking about being alone, is my way of trying to open up. Of trying to work on this part of me that seems a wee bit messed up (like that WEE bit of ice that hit the Titanic) so that I can leave it behind. So I can live a life where I have joy again and I smile. Still working, that's me.


Laura said...

You are not alone, I am here too. I am not leaving any time soon either. You aren't crazy either!

Raccoon said...

I hope you don't mind me saying this, but: that chair looks very skinny! A total of 18-20 inches (yes, I'm still using inches) wide?

The top looks very good on you.

Yay! For Cheryl and the mail! Hurray for framing stores! Congratulations on another set of outgoing postcards and packages.

The picture of the girl on the roof is very photorealistic. Until I actually looked at it, I was thinking that Cheryl went up on the roof and Linda took a picture of her.

I heard, or read, someplace (I don't know where) that the thing that people are most afraid of, the absolute number one fear in all the world, is being alone. In the first Resident Evil movie, Alice (Milla) wakes up lying on a medical exam table, all alone. And when she goes outside, she's all alone... In Will Smith's I Am Legend, he's not all alone. The TV show Lost, they aren't alone. But, Alice was all alone.

You aren't all alone. I know, it sometimes feels like you are. But you aren't. I guess we just need to try letting you know that a bit more.

And yet, I am not scared, or worried. Who can I share this with, what does it mean – it either means I am dying now or dying later, right? That last line is classic disassociation, I have become a person who doesn't feel the fear I should normally.

You are EFM! Of course you don't feel the fear normal people would. I could go into the whole spiel about life being a circle, and death is part of life, and all the rest of that, but you already know all of that. What I will say is that Death was beautiful, when I met her. Yeah, I'm still here; between her and Bear and Raccoon, they convinced me to stick around, that she didn't want to take me yet.

You aren't making me feel very comfortable about socialized medicine. I mean, you haven't been making me feel very comfortable about socialized medicine. This is just the icing on the cake. How about the emergency room doctors? Can they prescribe?

Going bikini shopping, eh. Hearing about waxing, ouch, you don't have to describe it very in depth.

Hearing that you're still striving?

I'll be here for that.

cheryl g said...

I knew you had lost a lot more weight but I am still somewhat floored that you now wear a medium juniors shirt. The shirt does look great on you!

I am glad that you are being honest with us. I know it is hard to hear but I think it is also necessary to give a true picture of how things are. I do know it is hard to make yourself that vulnerable and I want to thank you for your courage in exposing yourself.

I am sorry you feel so alone and isolated. Yes, I don’t know what to do about it but I will keep thinking about it and seeking some ways to help. I hate that fact that dreams of being maimed and tortured are preferable to your reality right now. I want to be a presence to help you not feel alone but I also realize I can’t truly understand what you feel because my brushes with death were all quick accidents not this slow, unrelenting degeneration. I hope my saying that isn’t painful for you. I just wanted to explain why I can’t “know” where you are coming from as much as I wish to understand.

Grrrrrr!!!! I won’t say more about your GP or the clinic. You are well aware of my feelings on the subject.

All I can do to help with your concerns about being left is to keep telling you and showing you that I am not leaving. I know the day will come when you are going to leave me. You need to be less isolated. You need human contact of other people besides Linda, your careworkers and me.

One of the things I love about Janet is the fact that she always sees YOU. She doesn’t just see the disease or the wheelchair but she sees you and genuinely is interested in knowing you. I try really hard to only see you and not allow my awareness of your disease color my interactions with you. I know I don’t always succeed.

I think the fact that people see the disease or the wheelchair more than you puts up a barrier to feeling connected. I think this blog and the postcard project are ways to help others see YOU.

yanub said...

Beth, here I am and here I will be. I wish there was more I could do to relieve you of feeling alone. I can't even think of the right thing to say or what I am probably missing in your post today. But even if I'm obtuse, I'm still here.

Veralidaine said...

Hmm, maybe I keep getting you shirts that are too small because I have a subconscious desire to see you wearing tight clothing that accentuates your breasts? Sheesh, Beth, not only do you talk me into improving myself as a person, now you have me questioning my subconscious sexuality.

You look very thin, and I wish I thought that was a genuine smile of happiness, not a smile for the camera, but you're still beautiful inside and out. The chair looks comfortable, although the price tag boggles the mind-- that's twice what my car cost! But it would be cheap at twice the price if it eliminates some pain and stress from your days... once you learn to drive it without running people over.

(In my defense, by the way, I could have sworn Linda posted something about you wearing a medium in Hot Topic shirts now...)

Ok, here is the part where I try to address the reality and dark thoughts in your post, not shy away from them. Your GP is an asshole. The entire Canadian medical system should be dismantled and the people who ignore someone's pain and broken bones because she is too much trouble should be hanged for war crimes. Is that direct enough?

But America-- not much better. Here you CAN get care... if you are in the 2% or so with the income to afford to be ill. Recently there have been scandals where homeless patients were taken to one hospital, then that hospital threw them out and dropped them outside another hospital, and so on until after 7 or so hospitals they died without treatment, because nobody wanted to take patients who can't pay.

And the loneliness... what can I do to help? Is there anything more I ought to be doing? More emails? I worry that emailing means you will feel you have to reply. And with one blind eye now, the strain of just reading emails takes away from time to read the piles of manga that are suppose to help you laugh and smile for more than just the camera.

I don't want you to feel alone, even though in the sense that nobody can truly go through this with you, you are alone. But I will walk, as much as I can through the post and the computer, along this road with you until you have to let go of my hand and go the last step alone. And I know there are others holding your hand from near and far, too. You are family to many, and even though your childhood and biological family tore from you the right to know what that feels like, that is what you are. Linda's partner, Cheryl's sister, Neil's niece, my cousin.

If there is anything I can do, as always, let me know.

FridaWrites said...

That is a beautiful chair, and you look great in purple.

It's way past my bedtime so I'll have to comment more later and hope I'm not missing the point from sleepiness, but I'm still here and I'm sorry about the aloneness and the dreams.

The GP, ugh. I read a book called The Body in Pain and it seems to apply to what people do to people who are in pain (increase it). He's not been doing his job, referring out or diagosing or treating, and dismisses you when you ask that he does these things. Yeah, I'm not thinking socialized medicine looks so rosy these days either.

SharonMV said...

Dear Beth,
I know that feeling of being alone. Both being actually alone, and not being able to share what you are going through. What I've been through and what my day is like is massively different from anything my friends & family have known. And what you're dealing with & live with is so much more. Yet you do share some of it with us and you have made us understand with the clarity and honesty of your writing

I can't talk to most people about what my life is really like. One, it would take so much explanation & description even to give them an inkling & I'm not usually that articulate or have energy enough to do that. And two, whenever I get near to that territory, I feel their walls of denial & anxiety instantly come up. Three, it's hard to cause such upset & pain to other people and I no longer have the strength nor the inclination to protect them & make them feel OK about the reality of my illnesses. It took me a long time to realize that it's not my job to make my loved ones feel OK about my situation.

I am so upset and angry about the way that doctor & the other medical people have treated you (i am aware of the irony of that term "treated"). And about "you have issues" and the "it's all in your head" stuff, it happens all the time. You are certainly the most egregious example! After one ER visit, the doctor (who did not know me) wrote in my chart that I had depression & this was the underlying cause of my problems. If doctors can't figure out what's wrong, it must be your mind that is wrong. Doesn't matter is you have blood tests, clinical documentation, etc of something being very wrong. And I think you are right (as you've written in previous blogs) this happens to women more often then men.

You are my example Beth! I feel good tonight (even though I'm not feeling well) because I got things done. Of course I do not expect or even try to match your output! But I've worked quite a few hours on my stickers & other projects and some correspondence. Also accomplished: one load of laundry, one dinner made & I helped make another dinner. We also went to the animal shelter today (no kitty yet). I'm still happy, even though I'm too tired to spell & the computer keeps reminding me every time I make an error.

Lastly - you look lovely in your chair. It is much less bulky than I imagined. I'm so glad that you can use it indoors too. You'll soon get the hang of driving it. I like the other picture of you at work too.


Baba Yaga said...

Yea, the things you're talking about *do* knot together horribly. Oh for a pair of scissors sharp enough!

Some of your experience I can't possibly understand, and many of them I hope never to understand. But perhaps (perhaps), if you put everyone who cares about you (in the sense of you, not of a fictional, gussied-up you) together, the everyone-together can understand most of it. Just (just!) not the huge, combined knot.

I do understand the insanity which comes of loneliness. Just fancy, all those years I was an *untreatable nutcase, and it turns out that mere ordinary loneliness - the sort where one has people in one's life, just not quite close enough or often enough or fully enough, & where one's granted some kind of membership of the human race - is treatment several orders of magnitude better than all the things shrinks tried.

Actually, all the things they mostly didn't try (and the offspring-of-unmarried-women still contrived to give themselves the credit for my 'recovery', rot them). Yes, place someone in a crazy-making situation, then adduce their craziness as the reason why it isn't worth changing their situation. And clearly your ex-GP has that down to a fine art (it seems to be a medical speciality - probably in the curricuum alongside the function of the pancreas). As he has so many forms of arseholery down to an art.

I'm tempted to say you're well rid of him - I hope the interested one proves trustworthy.

It's true that people do leave as things get too remorselessly real (the kind of reality which emerges on the other side of unreality - dissociation's certainly implicated in that, but so are others of the tangled strings). Denial keeps many people's worlds turning.

Remarkably, it turns out that not everyone leaves. Some stay.

Those who stay are gold, & although the process of refining out the friendship gold is hell, the pure thing is priceless. (I'm a Johnny-come-lately, *quite another kettle of fish.)

About the concentration camp dreams - a friend of mine spent one very dark year reading survivor accounts, because - the mind uses the tools available.

As for the equation between eye-gouging and happiness - oh, lord. If there's anything nastier than hell, it's hell when one's processing it as child. It's in the nature of hell that one ends up doing so, of course.

Heh. That's straying into Job's comforter teritory. I'd love to give some real comfort.

CJF said...

Your GP (ex GP!!) is lucky I am in england or I would skin him with a red hot teaspoon and feed his eyes to hungry stray kitties. At least kitties would profit from his presence on earth.

I know it's grim, but there's no excuse. NONE. to treat another person that way--especially as a member of the medical profession.

English hug for you! (((Beth)))

Neil said...

You're not alone, because we, your Internet family who love you so, are here for you. Yet we're not THERE, with you.

I can totally understand the lonely feeling. I occasionally lie in bed for up to 12 hours or more, sweating and vomiting with an abdominal migraine, listening to a radio playing quietly for something to do, an hearing the family going about the business of living in the same house as me. My Beloved occasionally comes in to check on me or put away some folded laundry but apart from those quick visits, I lie there, mostly ignored. I feel completely apart, completely alone, isolated and lonely. Is there realy a force field on that bedroom door that shuts out the feelings of humanity???

I'm not leaving you, Beth; except I did for a couple of days to go to a medieval event, and I'm sorry but we got so frantic in packing that I forgot to take your wristband for my belt! I did take the Wheels and Wings shirt, and wore that to the business meeting on Sunday; but nobody commented on it. Nobody also commented on the mid-twenty-ish fellow's t-shirt which proclaimed him to be "Cougar Bait."

Thank you for teaching me to see the person, not the disability. (And thank you, Cheryl for your comment that reminded me to KEEP watching the person, not the chair!) I'm going to stay as close as I can to you, Beth, but I'll always, dammit, be at the wrong end of the Internet link.

Zen hugs and love always (and all ways),

Lene Andersen said...

I have no words for what your ex-GP did to you. Wait... I do. I have one. Perfidy. I want to maim him.

I'm not leaving. I promise you that I'me here for as long as you'll have me.

rachelcreative said...

What courage you have in exposing the soft under belly of loneliness.

I am not as severely disabled as you but I am mainly housebound. The world carries on out there without me in it. And they don't seem to miss me. or at least they don't let me know they do.

Chronic illness, severe disability, being housebound, bedbound and dying are all isolating. I'm telling you my experience to say that the stuff you're having to deal with is very likely to make you feel alone and disconnected. It's not about you being bad or crazy or failing in anyway.

Unfortunately it makes you kind of normal.

Yes, seeking alone time and being happy in your own company is satisfying - when you choose it. The difficulty I think is not being able to choose.

If you are able to it may be worthwhile sticking with thinking and expressing more about the alone feelings. For me that's the only way I can get unstuck with things.

My dad, who is a therapist/counsellor, tells me it is very important for your (ones) experiences to be "normalised". That connecting with people going through similiar things to you helps to normalise your own experience and it's easier to deal with it all.

I know finding someone who is in exactly the same situation as you is pretty tough - but maybe there are elements from lots of people that will help.

If I can help at all by being honest about my own isolation I'm open to doing that. What I don't want to do is lay a load of stuff on you that you feel you need to fix or fight to make better or b e overwhelmed with others crap. It's a fine balancing act.

The way I cope with the loneliness is to focus on what I can do and to reach out. I find I get more contact when I put myself out there then just waiting for it (sometimes that pisses me off but hey we're all human). For you this could just be a line that says "I could use a friend today". I know I would respond to that even if I had been my usual crap self and not been in touch for a while.

I also talk things over with my husband and I trust him and what he tells me. So if he lists things people do to help me feel less isolated I believe him and give what he says more weight than my own nagging internal voice about how crap I am and how they don't really like me.

When I feel really ill sometimes all I want is someone to sit with me. Not to talk or entertain me but just sit with me silently.

I remember you saying before you've done this for other people. I wish I could come do it for you.

Your power chair looks understated. Glad it's not a huge monster although that death ray attachment would have been a good addition. It's just going to take a little while for you to find your own way to control it. You'll get it. It's a minion to do your bidding.

Your GP ... gah! That's just awful and ridiculous and how dare he. I continue to be stunned by Canada's health service. I just wish it wasn't at your expense. At least there is a chance that being rid of that GP may allow you to find another who will prescribe and refer.

I remember how exhausting and exasperating it was last time you searched for a GP and ended up with the last guy. I hope the GP showing an interest is a good fit and that the search doesn't leave you or Linda too exhausted.

Donna Lee said...

I wish with all my heart there was a way to share with you the feeling of connectedness I feel when one of your cards arrives. It makes me smile and I show it to everyone around me. It makes me feel that a little bit of you is there with me.

And that shirt looks hot on you! You clean up real good.

Elizabeth McClung said...

Laura: Uh, well, I temporarily go crazy but who doesn't - particular at a clearance sale. Thanks

Raccoon: I checked and the lowest part of the chair is the frame with the wheels which is 23 inches so it is less than two feet wide. Up top where I am, yes, probably 18-20, and there is actually extra room as you see around my legs and torso. Webbing will be put on as I managed to flip/fall out of this chair during a grand mal/tonic-clonic.

Thanks, yes, nice top.

Yes also on outgoing packages, sometimes it is hard to feel that things are progressing; posting things makes me feel like things are progressing.

That picture of the girl on the roof is a new artist, first doujinshi at the December comiket in Tokyo but it is only 12 pages, about 5 pictures but worth the $5 it cost, or $7 including postage, as the style of urban painting is stunning. I like using variety from water color to this acrylic I think.

Yes, I remember that in Resident Evil and 28 days. I also find that most people who are famous enough to be studied like some of the famous female poets published after death had a great deal of being alone. Poe was famous for his feelings of isolation (and lust for his cousin and hatred at himself for that), which dominated his work. I am sure you have been in a crowd whether non-book people or other types and realized you are the only person who 'gets' what you value and everyone else is just tolerating you (or does this only happen to me?). It is a rather horrid feeling.

After so many recusitations, I don't fear death anymore, as I know it will be another day, I worry that I won't have send out all I need to send out, that people won't know that they matter, even if I'm not there, they matter a great deal. For now, I am taking a haitus from dying, which means I supposed I will either die, or have to catch up emotionally later - oh well.

Emergency room can't prescribe long term, but they are the ones which have started me on all my drugs and give dosage recommendations. So finding a GP that will follow that is important too. Yeah, for MS or spinal injury I will say it is good, not great - you are expected to move to them, to do what they say, you are a unit, a cog. It is important for me to keep reminding my case manager and others that I am NOT 80 and that spinal cord or spina bifida clinics and nurses will probably have been urinary and other solution for me than geriatrics!

What, but I am planning all the pictures, for the bikini wax! And the shopping that is the best, both the pictures looking good, and the hideous "I am an extra singing "Ooooo" and "Ahhhhh" in the background of a band" style bikini's!

Cheryl: yeah it is kinda freaky, I am going to be in the kids section next. Not doing me much hope for getting those C-cups but you know I guess as I wear junior clothes does that mean I get to do the junior bra sizing too - as I know this petite woman who has like the same size and a bit more than me and says she is a D. And I am like, "No, D is that" and point to Linda. So it must have to do with your body size too.

Thanks, I wanted pictures, of me, and my hand is sort of made huge by the camera in the second shot (I do not have a hand larger than your entire head). But also that I am very lonely and it is a type of soul loneliness. I love Linda, I talk to Linda every day and I am still lonely. What is wrong with me?

I hope people who are NOT in my situation can relate to where I am or things I say, as then I would be very lonely and everyone WILL go away as who else, someone in estonia is my only other person to talk to. Finding anyone who understands that my disease progresses in degeneration each day and rejuvinates with sleep is so hard; they see five minutes and think, "That is her condition" - so ignore that and I hope I can connect with issues people have and people where they are. You, Raccoon, Sharon and other have been helpful because in some ways you have done parts of this before. So having a mentor in anything about this makes me feel less alone.

I don't know if people see me in the postcard project or just a hobby of a poor crippled woman. But honestly, I don't care; the reasons I do it should matter, even though I know that the recipients will have vastly different reactions or views of me. But yes, it is hard some times. And now, because I am thinner and careworkers and others are pulling away, making emotional walls to protect themselves from the 'inevitable'. UG. Says who.

Yanub: if you stay long enough, then you will see and I think you have and what are friends if they can't disagree but fair weather friends. You are very much you and I am very much me but we manage to meet in the middle somehow. So there is my strange and maybe makes no sense response.

Veralidaine: I am not going into your sexuality, you can fun with that all by yourself (or with others), I am having a hard enough time figuring it out for myself (see next blog).

Well, I thought it was too small but it fit fine, so all worked out!

The chair costs more than ALL my cars I bought combined and maybe a year of rent thrown in. But aside from that it had head support, it has the $1000 ass cushion, it is small enough to get me from computer to bed and back, and to bathroom. Put also, without pause, once I am dress, work at computer then simply head out, no big energy use needed, to head down to the village and get a DVD or a hot apple and then back up the hill, no energy use and back inside - outside when I want to be, inside when I want to be. Also, now a tray for wireless mouse and my drink, which folds away. It has controls for use so I can drive it with my forearm, hooks for my concentrator on the back and a remote to turn it on and up and off. It tilts and reclines to keep me in it during an seizures, and I have to move the buttons every two hours to avoid sores. It can handle any deterioration and problems in muscle weakness, also tips on using the least amount of body and force to drive. It has a vast range of speeds and abilities (however it can not tank climb over someone BACKWARDS - I am disappointed!). But also can adapt so as part of me get tired I can use other controls as needed, there are things I have paid for which are not yet part of the chair, like puff and sip controls or full tray so I can be fed by a careworker in the chair as needed. Also fold away arm rests for transferring into bed (more like falling over into bed and care worker moving my legs and head), or using slings for going into the pool or other places. It is not how I want to see myself, it is not how others want to see me, but it is the reality of who I am often, so I can be post TIA, post Seizure, have a bad day, be toward evening and still have FULL control - I can be not able to speak and have full control of my chair and it holds my body. Do I deserve it? Probably not. I tried to give it away several times but Janet has threatened me many times if I do give it away she will find me and do bad things to me. Plus she has warned people that I am not to give it to them, and if I try to report me to Janet.

Veralidaine, you are a great friend and a great family, and I didn't mean for you to feel bad. Sometimes, it just hurts and the only think someone can do is be there - it doesn't take the hurt away but you know they are there. I know you are there. If the time comes when I am so distraught that I call out that I need help, I know you will be amoung those who will respond. I know. This is just pain, a different type of pain. And I don't know how to deal with it yet.

Frida: Yes, the idea of pretending the pain doesn't exist then making demands does increase it and right now I am hoping for a good second world medicine, as this island is not part of a first world country or the Federal Government would be here saying, "This is unacceptable for citizens to be treated this way" - Veralidaine makes a good point about the problems of the pay as you go system and I know in LA, there was ONE hospital which would take uninsured people so it meant a 60 minute or more 'emergency' ambulance ride. Most people died trying to get to a hospital while passing five or six who say, 'we can't take them, if we did, we would be flooded' (Someone else's Problem - SEP - everything in life is SEP until we decide it isn't. I understand how that thinking starts but what it leads to is no different than human experimentation - people die because other people chose not to care and make that official, and they knew what the result would be, but want to be absolved. The same is happening here - does my doctor think I will die - of course, he was totally shocked when he saw me last time and suddenly dramatically increases my pain meds - now he says he will take me off them - why, because he was WRONG two visits ago, WRONG the whole last year or that he has decided when confronted with the history of his inaction that it is 'someone else's problem' and since there is no one else - that is me. I am responsible for this disease, I am to blame, and thus I will die. The man is a coward, the system is a coward which enables cowards. This is not medicine. At the end of that day, he collected his pay, and went home, knowing he helped people, to bad about that one woman who was so....irritating. Tomorrow maybe he sees 10 other people and does nothing much for them and collects his pay. This is socialized capitalism; he has figured out how to make money by doing nothing (isn't that the ultimate goal of capitalism?), too bad he is the person we trust with our lives. I am glad he is not an airline pilot!

Sharon: Yes, how do you make someone understand, and then realize after many attempts that people simply can't, as they have no frame of reference. They know a 22 year old who lies around playing games so you must be like that, as that is all they know. To have a flu for over a year, it is not concievable, to be worse than that, how can they imagine it.

For me, to go from a good state to a bad state in 10 seconds and have that be the way it will be for the rest of the day cannot be explained or understood. They see me talking, thus I must be able to go out to coffee houses and resturants, except the energy to do so would put me in a different state. To have a disease where it changes, takes things away permanently every week, ever few days. How is that possible? Only I am just learning what can be lost, like having a eye that won't focus, it is stuck, no instructions from the brain on what to do - which also happens to be the same sign of a massive stroke. So if a doctor sees it I am treated as an emergency stoke patient; but I'm not...this time. Sigh.

And yes, only now, that I am so tired some times do I realize that they will see it as it is, I cannot be a 'good hostess' and show them the 'good me' but they will get what they get. You are ahead of me in that, in being brave and strong enough to keep talking when people go silent, to say, "This is how I am" when they suddenly, mid your sentence, give out signals they don't want to hear it, don't want to know, they are uncomfortable.

I am very much looking forward to you getting a kitty and very much admire you and how you keep going, keep at it in the small spaces between illnesses. That you steal back from your illness something, that is how I see it, everything little thing I accomplish. That the illness did not define me TODAY. I suppose it is stupid but it keeps me going.

Thank you, I like to be at work, consulting with people, it makes me I have a place in the world.

Baba Yaga: Yes, I don't know if I should sever them as it is their knotting I think that keeps some of them attached at all.

You do understand I think and I am glad that you and others do. But you also understand the ability to be lonely. It sounds like you had a very difficult time for a long time and were treated badly so are not friends with the doctors and people who speak with authority in white coats - as I am not.

I am happy to be resolved in one way with the GP, but of course now the whole section of life is unresolved, as I have no GP as yet.

Yes, I hear people saying, "I don't have enough energy so I am stepping back" the times when I need help the most. Sort of like seeing a car accident and going up to the person in the burning car and saying, "I don't have enough spoons/ability to commit/emotional stamina/etc to care about opening this door, I just wanted to let you know" - I know it isn't calculated cruelty, it just seems that way. So they leave and come back when things are not so intense or denial is easier. At least now I know, right?

I do not ask from you, am grateful for your comment - thanks. You are a person who is connected but yes, in connect experience. I don't remember how I met some, like Raccoon, or Cheryl, but time and things like surviving arguements make a friendship. I understand what you say about those that stay, as one time, one person did and they did a small act which dramatically helped my life. They thought about me and cared. And it made all the difference.

As for eye gouging and dreams of skin flaying and death, and facing the ripping away of friends as they are chosen to die, as you are chosen to kill them, as you refuse and they all die for your refusal. These dreams are better than HERE? Not good.

CJF: Thanks, I do need more hugs.

Neil: it is possible to be with others, or to have others who think of you now and then and yet be totally alone. I don't know why we are made that way or why some more than others, but it is so. I want to be happy, to find joy and peace, I work toward that - who WANTS to be sylvia plath?

Thanks for talking about the migraines, I had forgotten that aspect, the needed but also horrible isolation; where life goes on as if you don't exist, just there, a room away, in pain. Because others can do nothing, they perhaps pretend for a while that you don't exist, or don't think about what it must be like for you - I am glad you spoke of it.

I think all young men want to see themselves as cougar bait don't they?

Lene: I have only ever cut people off for consistantly creating a danger in terms of live threatening or other types of danger to myself and Linda - I don't think you are in that catagory or ever will be. I find it interesting that while I am so desperate to connect, you too worry that I might cut you off - why, why, when you are the one who understands. Is it the understanding that frightens you? It doesn't frighten me, or it does, but I live with fear all the time, so I can squeeze some more in. Not leaving you.

RachelCreative: I find your words to be striking at the heart of it!

"they don't seem to miss me" - and they don't let me know if they do - how well put the empty boxes in our lives, post boxes, invitation, finding out second hand about other people invited but us not, empty emails. The times we cannot create busy and wait to hear, there is nothing TO HEAR.

How is it we can all be normal but not be together, all isolated in pain but normal - if I fit in, let me FIT IN somewhere, or with some group, not fit in to a catagory, like the one black girl in an all white school, knowing that others are going through this hell, us all alone together?

What you say about dealing with your isolation is real and useful.

I cannot however write to say, I need a friend, I have in the past and the responses from "I have to think about this please don't talk to me until I decide to talk to you" (no communication for three years), to "I don't have time in my life for you" to silence hurt me so badly I don't think I could try again. But hey, I am about trying again, can I expose myself to that much suffering and tears again?

The view of the partner, the objective person on what others can do is useful, is real, this I can see.

Also the person being there, perhaps when I feel to talk we talk and then silence again. I am still alone and in pain but not as bad, I could see that.

For the money my chair is rather understated unless it comes with a title and I am now Baroness McClung or something.

Yes, I told Linda I CAN'T do the three weeks of searching and meetings again, so I think she will do some of it and I will do some of it and we will see how often I have to go in an ambulance.

Thank you - this has helped.

Donna Lee: Thank you for telling me, I wanted to connect and to know I have, even with my brain that only knows and has to assimilate you in one day and do the writing before I forget it helps to know that I connected.

Thanks about the top too - if you are going to wear razor blades, make them look good right?

Baba Yaga said...

I'm a little concerned that may be responding to your responses, and after you've write another post, may be a little overwhelming. If it is, I shan't mind if you don't even read it. 8-)

But you wrote this: I love Linda, I talk to Linda every day and I am still lonely. What is wrong with me?


It dawns on me that loneliness is more than one thing. There's the loneliness of having no-one to talk to, of having no-one to share the small & big moments with, yes.

But there's another, deeper loneliness. It's of not receiving the signals that one's part of the clan - any clan. Not just the smiles and the jokes, but the almost invisibly tiny acknowledgements from a lot of people that you and they are alike human. Worse, getting the signals that you are *not part of the clan.

Illness, the impossible contradictions of illness, brainpower (even dementing, you're formidable), that ruthless honesty, regressions... Each of those would make some people view you as not part of their clan. Not being able to get out isolates you from those who *do see you as part of the clan. Humans need "you belong" messages, and you've been cut off from them.

That's as lonely as hell, and no one or two people, however dear and however wonderful, can offset that kind of loneliness. Feeling it reflects nothing wrong with you, and everything wrong with the world we humans make for ourselves.

TJ said...

It's nice to see photos of you, Elizabeth. It warms my heart to see you out and about it the new chair.

I can only imagine how isolated you must feel. Well, you're more than welcome to call me anytime. My cell number is on every one of my emails. We can talk about fencing! Or you can just have a voice in the dark if you need one.

The offer's there, I'm not going to belabor the point and make it sound creepy. You know me by now from my blog and our emails; I don't have any secrets. I can call back so you don't have to worry about the charges too.

Feel better. I still have to see about buying that fencing book from you that you emailed me about!

Elizabeth McClung said...

TJ: I am glad that you commented and you like the pictures. I want to put up more of me and will as spring comes out, I think, and I am dragged out.

I sent you that gift as a book, so please don't buy it until you get it from me, I better check the address to make sure it is right.

Baba Yaga: Yes, I think there are several lonliness, and I have the deeper one which aches for understanding for being with I guess 'my people' to be where I am understood. Which is not here, after that medico visit this morning. Ug.

I find it interesting, I too think we have somehow failed ourself in selecting so few ideas of what people WANT to be, whether that is where they are happy or not, and the rest are simply ignored or placed in the corner. While we, the outcasts are the ones doing the real research, yet never have anyone to share it with - this is the frustration, and isolation. Do you feel it as well?

Baba Yaga said...

I too think we have somehow failed ourself in selecting so few ideas of what people WANT to be, whether that is where they are happy or not, and the rest are simply ignored or placed in the corner. While we, the outcasts are the ones doing the real research, yet never have anyone to share it with - this is the frustration, and isolation. Do you feel it as well?

Yes. How not?
The internet makes it more possible, perhaps than ever, to share it - that pleases me. Some of the outcast have a chance to band together a little, and take validity for *their ways of being.

And I, I'm lucky, I now have children in my life. (Almost as good as dogs for making one belong a little. Suddenly, because a lonely 6-year-old adopted me as an aunt, I'm a grown up. Only 20 years late!) I hate seeing the sad ones, the already outcast ones, the ones who need help to be allowed to be who they are, but some part of the fruits of my involuntary research can be passed on. Not enough, but something.

You do it a different way. But it *is* powerful. And ripples spread. Eventually, some of the ripples made by different outcast people (have you noticed the strong sense of community which characterises many outcasts? - the casters out are fools) join up, and become waves.