Wednesday, September 09, 2009

Lonely. Pushing to breathe, but afraid. And a cat visit.

My heart erratic and with difficulty breathing, I gasped to the worker, “I…come...back…don’t….911”

Then I passed out and stopped breathing. I came to for less then a second and passed out again. When I came to the second time, I was breathing shallow and couldn’t move. A couple of minutes gone.

The worker was holding my head upright. This isn’t what she saw in her job. “You can pass out at will?” she asked, amazed.

“No.” I breathed and waited for enough force in my diaphragm to speak, “I can always pass out. Use the will power to stay conscious.”

Yeah, I use will power to get out of bed, to stay conscious, to stay upright, to blog, to email to do anything despite the pain, the erratic heart, the purple fingers, the purple arm. And when I fail in will power, then I lie there until found. And the next day, I gather my will again. If I do not do this, then "I", the Elizabeth is gone, and I am only the disease. But sometimes, I need to rest, just for a bit, so if someone is there to call 911 if things go wrong, I let go inside and let my body fall, my consciousness sliding away in images of green.

How is that possible? Because I am ‘special’? No. Maybe because I am desperate. I am desperate to grow as a human being. Some days I feel that I have no gender, no name, that everything is stolen from me, as my disease determines everything from sleeping and what I eat, to what I do and when, and how much energy I have. I am death, one kind of death on and under the skin.

I am also driven, desperate and driven by the ghosts. I have lived a lonely life. I still live a lonely life, an extremely lonely life. Why? I don’t know. But I learned that no matter what happened to me, or what I did. That my body could be hit until I sobbed, that I could be hungry that I hoard until the hoards were found and I was punished again. And I learned that there are people who look for the fear, the fear of the knife, is what I had, to be tied or restrained while the knife traveled around my skin, up and down, waiting to bed. I learned to be laughed at, or be in a position where if someone says to lick a foot then I licked the foot. Because I knew something they didn’t. That in the breaking of me, and I was broken, that in the dominating of me, and I was dominated, or treated as an object by so many, so many who wanted control, absolute control of me, body and mind. And so they broke me, and ordered me: parents, siblings, pedophiles (I guess that is what they are called), abusers. And I shook with fear.

But I knew inside I was still free. I learned that what the body does is what the body does, as is what happens to the body. I learned young that even if I decided to NOT be broken, that I would be ‘broken and disciplined’ in the name of God, and yet the next day, pop up again. When, in just one of the dozens of ways I could be punished as a child (8 or 9), I was punished for speaking any single negative statement by being forced to eat jalapenos, one for each word/statement, without water.

So I went and spent all my money on jalapenos in secret. And I kept eating them. And crying. And I was punished and broken 22 days but on day 23 the jalapenos didn’t work any more. Not because I wanted to say, “You are a big fat head!” to my brother. No. Because I wanted to be free, and no matter how many times I was treated like an object owned in body and mind, I needed to be free. But I was so alone. So alone.

I could be licking clean a shoe, but in my mind, I was thinking about the food I had left out for a stray cat. What happened to the body was not who I was, it did not diminish me. It does not diminish me. Only I can diminish me by failing others, by failing myself in not being a person who grows. Because a person who does not grow, does not learn is already dead. A person who does not want to become a better person, because it has risk or might hurt, that person has gagged that part of them which can be MORE, who wants to cover themselves in a living death rather than try. But I will attempt to wake them. It is my call, my vocation.

I am scared that I am not growing. Scared that in forcing myself to breathe though it hurts so bad, to do postcards, to do this blog, to do emails, that I am not growing, but just forcing myself to keep up to a person who is gone. The EFM of before is gone, I cannot do what she did, I cannot be who she was. Yes, I go to badminton, and will tomorrow, and I have a 5K or maybe 10K on Sunday (though the bike shop said the front wheel may or may not make 5K – but I have wheeled on blown wheels before). For me, to do something that threatens my life is like lying down in a bed of soft moss, there is no loss. What is hard is staying, and finding ways to care about ME, about now. And I am trying, very hard, trying to find a way to be excited about now and not just the light so easy to fall into.
But I do the postcards, and this weekend, after I woke from the semi-coma and was so dizzy I hit and fell over a great deal, I spent the rest of the time on postcards. Because what if one of those postcards is to me at age 8 or age 14 or age 24 or age 30? What if one of those postcards tells someone ready to stop fighting, ready to give up that they are not alone. Because they aren’t. And I have to remind them of that. I know that makes me sound like a nutter. I get the postcards in, and I send them out, the best postcards, the ones I like the most I send out the fastest, like this bi-plane, because if I think about it I might want it and that is not my job (to collect). My job is to care about others and stand as a place where anyone can email me about anything and I will try to be there for them. What communication occurs between us is protected. And I do receive abuse. Daily. Because it is a public place standing up and saying, “I care. please, trust me that I care about your health. I care about your loneliness. I want to show that dying, like living, can be more.” So yes, I get abuse everu day: Emails, comments, stating I am a thief, a liar, a scam, or just people hurt so bad that they lash out in pain at anyone. It hurts. To give choices, to show people that there are choices and that taking risks, on themselves, on others is worth it, even if it doesn’t work, is why I stay conscious. So I bear it.

I will never know if a life is changed, or a day is changed. I’m not raising money for cancer, or my disease, but I am raising myself, failures and attempts, up to show any person that maybe what they believed was impossible is not, that the greatest limitations we have are those we put on ourselves because we are scared of being hurt…again. We are scared of being hurt for good reason, and I show that I get hurt, and I get up, and sometimes, it takes people to hold me up. These days, to get out of bed, to breathe with oxygen is about my limit, and yet I do badminton. How? Because if I can wheel to the door, can I wheel to the elevator? And if I can wheel to the elevator can I wheel to the sidewalk? And that is how I do it. And sometimes I just dream, and then people, the real heroes in my life, figure out how to do it. I wanted to go to Hawaii, and in a month, I am going to Hawaii. I am going to the Honolulu and the Big Island, to see lava flow, to see rare beaches with dolphins and sea turtles. I will see the stars, I will see the ocean, and I am so ill that I have not seen the outside, or even the window in days. I am so ill that I could, if I chose go to a hospital, go to an assisted home. Go to be assisted until I die. But I am going to Hawaii instead. Carried by my partner, my sister and a few others.

So this weekend, we did 71 postcards, and last weekend we did 40+ postcards, I don’t know how many. So the ghosts of the me, hounded and almost broken, are quiet again. I want to be here for everyone, and yet I can’t. I’m still so lonely. I’m still working on not breaking, or breaking under the pain, and yet coming back. It is hard but I am not alone, not all the time: a friend who talks manga, a partner who likes to eat and thinks I should, even after I can’t taste, and a plushie, a stuffie. Sometimes plushies aren’t enough.

I also went to see the cats. To photograph the cats.

I will write a full blog about visiting the cats but again, all the cats shown last time were gone. Including the serious faced black and orange cat named Carmen which rode with me in my wheelchair. I know where one of the cats, now renamed and lovingly homed now lives. I thought I would be alone but I had a new young cat named ‘Smurf’ rode around with me (seriously who does the naming?).

Smurf looked like a slightly older version of one of the kittens (a few new ones had arrived) I called Scamp. Scamp may have been tiny but he liked to go everywhere, here is TRYING to get up into the chair, but his climbing skills are not quite up to it, so a bit stuck mid-way (yes, he finally made it up). Linda said she wanted to adopt him and smuggle him into our apartment that day!

Lulu, who I want to show a lot of later, is a cat who is a few years old but doesn’t want treats, or string to play with but LOVE. This is the most affectionate cat I have ever come across. Lulu simply loved and enjoyed being loved in return.

Elmo was a cat a could relate to, having been only 2 years old and used to small dogs but the owners were moving and so there was no place for Elmo. Elmo came with his own bed, a last remnant of home and besides coming out to find out, ‘are you going to take me home’, Elmo retreated back into the bed, remembering and waiting. I know what that feels like.

Vicky was a one year old cat who was a bit shy but still very intellegent and observant. She just didn’t want to risk coming down, that didn’t stop her from trying to find out about this person down there in a wheelchair, and hey, what are you doing down there?
I will do a cat blog soon but Linda has come to check on me. With the risk to her job gone she is back at work for the government, but what she does exactly I can’t tell, seriously, I can be charged for “Treason to the Queen” for talking about it. So to the bed for me and the construction across the street, going on despite rain or anything else. Starting at 7:00 a.m. and going for another 400+ days.

Later!

21 comments:

Kathz said...

Sorry not to have commented for a while - I have been reading your blog and sent you a couple of postcards, because I think you should receive them as well as sending them (but I can't do the careful decoration you do).

I think all I can say is that, for all your loneliness, in some ways you are never alone because your readers have chosen to travel with you. That may not be much but I hope the reminder helps.

I love the cat photos - it's excellent that you visit them because your presence plainly interests and delights them and you enjoy being with the cats.

Victor Kellar said...

I don't think you've lost yourself, but you are changing. The disease is changing you in ways that you don't want, but you'e managed to push and changed yourself in other ways, perhaps unexpected ways. This blog and your post card project is your way of doing good now. I know you do good this way, Collette and I have been affected by it and so have many others

Yay for kitties.

Neil said...

Your abuse as a child sounds to me a bit like stories from concentration camp survivors. You don't need hate mail, dear; you need to be loved and trusted. And you have that love and trust in all of us who comment regularly.

I know you need to send out postcards (I hope my little pack of cards reached you last month!), but please concentrate on Beth too. Keep breathing, stay asleep when you're supposed to, and dream peaceful dreams. And look out, Hawaii: E.F.M. is coming to visit!

Love and zen hugs,
Neil

Baba Yaga said...

no words, but hi.

SharonMV said...

Keep going Elizabeth! I am still here, working on another come-back. Soon the e-mails & comments here will be flowing again. Stickers for the postcards. Stories of my adventures outside. You have changed my life, changed me. Helped me remember what a friend can be.

Sharon

wendryn said...

You use your willpower to keep going when most of us would have given up. What you do does matter, though. You've made a huge difference in our lives.

You are still you, still EFM. Everyone changes over time, though. I'm not anywhere near the same person I was 7 or 8 years ago. You are being forced to change faster than many, but the core, the "you" part, is still there.

I love the cat pictures and I'm really glad they are getting adopted so fast!

*hugs*

e said...

Many hugs to you Beth and to Linda...

I hope my cards are reaching you and that you're writing, photos and your honesty of self-expression are very much appreciated.

I also really appreciate the e-mails as I learn to navigate life on wheels. You are forward to a fault, always honest and nearly always cheerful, despite the circumstances of your own life.

What I admire here is your drive to live and be while telling your truth. Your humour comes through, as well.

I wish you strength, rest and a wonderful time on your upcoming trip!

yanub said...

Pass out at will! Ah, a standard of TAB perception. You can't go wrong with the oldies, nope. (Frida, reminds me of your m-i-l and her nasty RPG aimed at you).

Beth, you could stop putting out postcards or visiting the RPSCA shelter or doing races, and you will still have already changed more lives than most people do who have fair health all their decades. Certainly, you do more than the haters whose idea of being active is to send nasty email to strangers. (Seriously, people, if you have time to be hateful, you also have time to be helpful. Go doing something useful with your time instead of being a force for destruction. Or work a crossword. At least people frittering away their time aren't actively tearing others down.)

"the greatest limitations we have are those we put on ourselves because we are scared of being hurt...again." That's beautiful, Beth. Thank you.

puppybraille said...

I wish I could be their physically to help you, sit with you, let you rest a while. I promise that whether you believe in prayer or energy, I will always be sending both for you. You gave me the gift of knowing that someone cares. You make special efforts to reach out to me and I will never forget that. I wish I could find a way to give you back the love you've given so many of us. Please know that those of us who care and have been helped by you far outweigh those who blame you wrongly and abuse you.

I don't know if this will work for you, but sometimes when I have a hard time and receive hurtful, harmful feedback, I specifically look for positive messages I've received. Sometimes that gives me a boost. You are amazing!

cheryl g said...

I believe you are growing and continue to grow. Someone who is no longer growing or interested in growing would never ask the questions of themselves that you ask. They would never make the sacrifices for others that you make.

I believe that in your daily actions and in your writings on this blog you do show that dying can be more. You show that there is living, which is little more than existing, and that there is LIVING which you personally do to the fullest.

One of the many things I love about you is your ability to see the potential in others and your willingness to help however you can so that they can realize that potential. I know you see much more in me than I see and I thank you for your encouragement to become that “more”.

I am sorry that you are lonely. I wish I could be with you all the time to help keep the loneliness at bay.

FridaWrites said...

Hi, Elizabeth, popping in for a quick hi, will come back for a more detailed reading after I sleep if I can do so before my doctors' appointment--have been helping take care of my grandparents right now. My uncle has a B&W kitty like your first photo, and that kitty has a friend like the other B&W kitty in the other photo. Very sweet animals!

A. J. Luxton said...

You are excellent. You are not a nutter -- at least unless "nutter" means the people who make this world worth living in. This post gave me shivers. I think the story about the jalapenos says a lot about you -- that even when confronted with circumstances that are just total losing conditions, you manage to pull a victory out of it. It makes me want to be part of the victory you are currently working towards (with the postcard project, with these transmissions.) You create beautiful things and poignant thoughts and although it seems like my life is many, many miles from yours, reading your blog helps me understand my life better.

I like the Victoria Frances art you posted. I'll have to look her up.

Elizabeth McClung said...

Kathz: It is okay, all okay. I liked the postcards, I hope you liked the ones I sent you (one coming).

I don't want the cats or any creature or being to feel forgotten. I don't want Elmo to wait, I want to be there for them but I can't.

Why would I want to go to heaven or peace if I left any behind. David said, I would rather be a doorkeeper. The doorkeeper never gets to go inside, only greets.

Victor: The body I have will never be the same, or age the same, parts destroyed, parts aged decades, but I try. Postcards now past 2,600 going to be past 3,000 soon. Why? Because either it matters or it doesn't. No, not a big movement, or organization, not even a town's worth. But the 10,000th postcard isn't the most important one...the next one is, whatever number.

I am glad something has come of it. Glad. Thank you.

Neil: No, my story and the concentration camp survivors' story was different. But still about control over choice.

I don't need the postcards, I need to know that someone, somewhere, is not alone. But I know they are. And I can't get to them, I can't help. But I can help some.

Baba Yaga: Hey.

SharonMV: I am very interesting in hearing your stories. And the stories of your struggles too. Sometimes the strongest thing is to sit still. I keep working on having the willpower for not doing TOO much - not getting it right. I really want to hear more. We have changed each other, you changed how I see myself.

Elizabeth McClung said...

Wendryn: some individual had the misfortune of condescending to me; trying to dimish me because I was a female and in a wheelchair. And then, after throwing myself from the chair instead of helping bending down to say, "Why push yourself, it doesn't matter."

"I will ALWAYS push myself" I told him, "when I play against YOU. ALWAYS." And then showed him the gym rash on my arm, and looked in his eyes.

Ahhhh, to look in the eyes of a bully again. Let the wrath rain down on me.

I am glad the cats get homes as well.

e: Thanks, I am sure that your emails have come through and I think your card/s as well. Thank you.

I try to be cheerful but I have to be honest, and sometimes there is a time to dance, and a time to weep. I will try to be honest and keep the sorrow, not to myself, but not in pity parties either.

Yanub: And I can tell you when I'm going to have a seizure too! But only a few seconds in advance. It isn't a gift, it is an aura (hee hee).

Linda said that you get it, I thought so too. So I don't want to say more and ruin it.

Puppybraille: I always cared, it just took me while, too long really, to find you. I think of you many times a week and am preparing something else, something different, but I need to hurry it up.

You are a person of courage, a person who gets up, who deals with the pain, the many, many different kinds of pain in ways that I could not. You are not paralyzed waiting for the future, you are going towards it. There is no crowd, no flags, no music, but I am clapping. In 'To Kill a Mockingbird' Scout is woken because Atticus Finch, after losing the initial case is leaving a near empty court room.

"Stand up child." she is told as the entire balcony of those without voices or justice stand.

"But why?"

"Because your father is passing by."

If I could, I would stand, because you pass by. Anything I did was an honor to be able to do. You are not 'inspirational' - but you get up.

Cheryl: Oh, that I could give myself, in one sacrifice. I did not want this, this, degeneration. This rotting within and without. This stealing of everything that matters. Except I have you now, and Linda, and the others. It is enough right? To change a person is to change the world, as we are connected so they are connected. To change a person is to change the world.

Yeah, I'm always going to give you a hard time. I'm always going to be proud of you too - I don't say that enough. I'm proud of the things you done, things you have set out to change. Proud that you are the one to have my back.

The ache of lonely sucks don't it?

SharonMV said...

Dear Beth,
There are stories that I've told, here, in these little comment boxes. Stories that never would have been written or heard if not for you. You have been my hope when mine was gone, my friend when I had none.

Sharon

Kita said...

Dearest Beth - firstly thank you so much for the postcard. How did you know what my horse looked like? The sticker you put on the card is exactly like Junior!
Secondly - I shivered in horror as I read your post - your past. People can be so horrible to others, and especially when it is someone in a position of trust - your brother - omg, Beth. How could he have done those things to you? Who the hell did he think he was? I hope he is rotting in some jail somewhere, hopefully as far away from you as possible.

The feeling of loneliness - well, I know that feeling well. Even in a crowd of people, that feeling can overwhelm a person. But you, dear Beth, put that loneliness out in print and in doing so, expell that feeling. At least, I hope that is the case.

Would it help if I said that you are never alone? That all your friends and internet family think about you every day, and hope you are as well as you could be? Please, know this is true.

The kittens and cats are lovely - the black and white kitten reminds me of one I used to have.. unfortunately, he decided that the neighbours were a better family and moved in with them! You know what they say - cats are independant and if they dont like you...or they find a better feeding spot... well... lol.

Take care, sis. (if I may call you sis) Know that I am thinking about you and I wish that I could be there with you... just to be there. hugs.

FridaWrites said...

You are a strong woman to keep yourself conscious so much and to accomplish so much--and these beautiful postcards are a huge accomplishment. And you were a very strong child to eat all those jalapenos to free yourself from the effect of them.

I never understand those who lash out at you. I do know many people who don't understand us now someday will, though I wish there were a sea change toward people with disabilities (and other groups too).

Kate J said...

I've just spent a few days on the Queen Charlotte Islands/Haida Gwaii - where my hosts were cat rescuers! So as well as their B&B guests they were hosting a number of cats needing new homes. One of them the cutest little pure white cat called Cotton. I wish I could've taken him home!
I has a fabulous time on the Islands, seeing lots of wildlife as well as visiting the Haida village sites. It would take too long to tell you about it all... I'm on an internet station at a hotel in Vancouver right now, and running out of time!
Hope to come visit you next week!
Love & peace

Raccoon said...

You can pass out at will? That is so cool!

I had to take a second look at that last picture...

You're not alone. You are changing. It proves that you're human. Humans change. This is a good thing. Okay, so you're changing a little faster than is optimal, but still, it makes you human.

Do be careful, with the exercise. We want you to stick around as long as possible.

JaneB said...

Hugs. Just to say, I came by and read and your cards, your friendship, has made a difference to me. Does make a difference. And the cats are great - you are clearly doing THEM some good with your magic home-finding powers. I really want to bring Elmo home!!!

rachelcreative said...

I had a beautiful postcard from you. A perfect postcard. And it made me smile.

I hope I can raise a smile from you in return from time to time. Something to help you feel less alone.