Tuesday, March 03, 2009

Dreams: Erotic, Fantastic, Mundane, Frail

When the Wheelchair PT Janet was trying to explain a point about my disease and caregiving today while tuning the new wheelchair, she said, ‘I bet some days you wish you could walk away from it all.’

I look at her with a quizzical look.

“Not you honey,” she said, “Though I bet you wish you could just up and walk away from it all.”

She was talking about having to make the tough decisions every time my autonomic system fails in a new way, to call 911 and spend 30 minutes trying to get them NOT to accidentally kill me or just wait 30 minutes and see if I get worse.

I thought what life would be like if I wasn’t in a VIHA clinic, getting tuning done on my wheelchair, if this wasn’t part of my day. What if I didn’t have home care later? I could just walk across the lawn to the sea, could walk up the stream leading down to it.
But the truth is that I haven’t the slightest idea what I would do, except that I would have more time to figure out how to do it. Should I just go back to writing books or try to take over the world, or just play cards with catgirls (watch out they cheat). So, so, many choices.

I have tried to avoid that game of staying two steps in the past, playing ‘if only I wasn’t….” and instead figure out what to do NOW. When I became disabled, I let loose the voice inside that said, ‘…..if only you weren’t too scared.” And I dressed how I wanted to dress, which ranged from goth, to sex goddess waiting...and back again.

Linda said on this picture, “She isn’t a goth! She’s smiling.”
I said, “Exactly, she a true goth, she knows who she is and what she wants.” I remembered, “Do you remember when I started wearing goth armwarmers, gloves, corsets and suddenly they went from something ‘ohhh’ and forbidden and maybe kinky and ‘what type of people wore them’ to ‘what type of corset today, the lace and velvet or the spider web?’” She did remember and smiled. “And then I convinced you to get a corset and we all got dressed in boots and arm warmers and went to the cemetery. And suddenly the corsets were what everyone wore.” It was a good memory.

Now days, I wear the corsets less, because I go out less, but I still try to get one out once a week, but the stockings and mary janes, the kinky books and the 4 inch heels are languishing, waiting. I talked to Linda about sex fantasies today (mine) because I want to know what turns me on. And we talked about stories we had read in the Manga Object of Desire and the stories in it and found that this one story about a woman who works as a maid in a maid cafe was the one which turned me on. Was it because I wanted to dress as a maid? No, but I did want to have a nice matching set of ‘sex undies’: the tap pants and bra or the panty and bra set, the negligee and ribbons in my hair the same colour. So, that is in my shopping future, something else to look forward to I think!

Okay, back to my sexual fantasy and arousal. We figured that this girl worked in a maid cafĂ© and then at a party she asked if she could be a maid as that would be fun, to be a ‘professional’ maid. Other people looked down on her, and her partner came to her rescue. And I think that is what I admired, that she knew what she was, she knew that the clothes were just that, clothes and didn’t define her, but were a part of her expressing herself, and that she did what no one else did at that party, lived out one of her dreams. And the part that makes it fuzzy and glow inside is that she had a partner who watched out for her: who made sure that others did not make her feel bad about her dreams; who was aware of all the things she did and was there when she needed him/her (him in this case). That’s erotic to me.

I think with the coming of spring, this is very much the time to cultivate dreams. Some people like to garden, and so this is a favorite season coming up. They say that ‘love’ is what makes plants grow. Since I live in a building opposite to the sun, I will say that I tried love, but I think that having the sun and some water probably helps too! But I can see the attraction; planning out the garden then enjoying it, or like we did, growing a window box of parsley and other herbs and then going to cut some fresh green onions, parsley and other herbs to add to the Mexican Chicken. Spring is a time when every bulb and every flower is making plans (usually simple plans like, “Open and get sun, and spread seeds” – but plans all the same). And we enjoy seeing the beauty of their plans in action.

I guess it seems that I have left the ideas of loneliness, isolation behind. But life isn’t simple so why should I be? I have spent the hours staring into the darkness, aching. Desires. Yes, I have the aching to find others like me, to stop feeling so alone. To spend days not treated like a thing. There is the dark side of me, and the light side and they exist together. I was giving the tech sass and he couldn't get why I needed such a high end low mobility chair. Then not long later, after I had a grand mal, he worked around me, shocked, silent, uncomfortable, as I tried to watch and talk with him using my good eye. I was still the same person, the same mind, sort of, in the same body.

Tonight, going for my nap, I had another seizure and started crying, because the pain and exhaustion of it all. Yeah, it was just one of those long, long days. And now I had just ‘one more’ seizure, like each one wasn’t a special hell. Linda gave me Miko to hold and touched me. The touching me made me cry more than before, because it was what I ached for so long, within the seizure. I know Linda or others hold me, or speak to me while I am seizing: but they are locked outside and I am in.

Many people (not the readers here I think) see me that way, a ‘poor thing’ locked, chained to a body that is dying on her. And what point is there in explaining that I am who I am, that I have this FABULOUS dress sense due to disability. That my disability has shaped my humor, my viewpoint, my caring and my actions. I am not the prisoner, because I act, it is them.

Before, I lived my dreams, I got a Ph.D. so I could spend my time with my great love: books. Books were my morning, my evening, my rising, and my fall of the day. One time, running out of air, dying, I dreamed I was about to be taken to the LIBRARY where I would meet Borges, and Calvino and all the great authors, who worked daily on new works in the library, and the books were sold in the bookshop.

That changed, those dreams. Well books haven’t, they are still the great mirror of the soul. They are our entertainment, our challenge, and the way we change ourselves without leaving the chair. Books are still touches of greatness. But they are currently closed to me.

In the same way people believe that EFM is now gone, or is here only in shadows or that is who they want. I have a vocation, and I serve that vocation. And as long as there are those who need me, I serve. Or to put it in another way, I will never have the physical ability that I once had, but on the other hand, I now have other ways to ensure that those who need help, are heard, are seen, are remembered. Sometimes, my words, sometimes my presence but understand, who I am has not changed. It is one of the reasons I am going for my BC wheelchair racing rating. It is one of the reasons that I say, “Okay, you’ve told me it is impossible four time, now are you going to take my money so I can go do it, or not?” Every time I send postcards, I am EFM. Every time, I face another specialist who tells me I better hurry up as they are busy after making me wait 50 minutes to see them, I am about to go EFM.

The thing about me, is that while I change, I grow, I like to think that becoming disabled has helped me to grow, in many ways, I do not change. I have a code, I live by that code. And part of that is that when there are those in need, I stay, until every last one is taken care of. If there are five spots and six people, I stay. And just being that way drives some people wild. They try to bully you, they try to belittle you, they attack; I wish I knew why, but the law remains, and I remain, and if they are a bully to others, they shall not pass. Linda says she has seen this look on my face more than few times (and since becoming disabled).

So…..spring is coming, and there is a future ahead of all of us. ALL OF US. I have a future, I have choices. I almost stopped the postcard project after several bad weeks. But I didn’t, because I know from my own life the joy or anticipate that post can bring. I know that anticipation itself is a gift. That someone sending post that isn’t just formulas is a gift. That someone thinking about YOU, and sending gifts, however small, is something special and something to treasure. I do.

We all have this future and we have to decide what we are going to do with it. Or who we are going to live it for. For you? For others? For both, I hope. That this, not new years is when I make my plans, my dreams, my desires of what will be done, because I can hear the wind, the sound of grass, see the buds of plants. I look out and know that I better get something going and catch up to nature, because change is coming whether we want it or not…just as it does every year.

16 comments:

Lene Andersen said...

Love the line "the sound of grass"! Ah, spring. Time to dream, time to fantasize, time for hormon... oops, did I say that out loud?

Interesting thought, the ability to get up and walk away from it all. Hasn't crossed my mind for years (although renting out the pain for a day or two has). Life without this? I don't even know where to start with that. Knowing who you are and what you want. There's another one it might be good to think about. I may have forgotten, so thanks for the reminder.

EFM is always there, she's just expressed in different ways, depending on the day or situation. Glad you had Miko to hold.

(sorry for the disjointed ramblings. It's how LFA is expressed today)

Abi said...

Elizabeth, you oughtn't to write posts like that; they will get branded as "inspirational"!

Yes, life is for living, change happens, and we should abandon conforming to others' ideas of what we should do, and should live to please ourselves (within reason).

One time I went to a goth event. Of course the boyfriend, with his black clothes, was commended for dressing the part even though he was just wearing his normal clothes. I decided to go with the "individuality" theme that I believe lies within gothness and wore a beige corset and a little brown skirt. I don't think that they were impressed with that. The goth brand of individuality is not really that individual. I expect that they thought I was being clueless rather than making a statement, and that I was certainly not one of them (which, I suppose, I wasn't), but really, who has time to fit in all the time? It's really quite boring.

I feel slightly bad now for violating their dress code, but I mostly don't really care if they can't appreciate my special uniqueness ;-)

I should wear more goth clothes. Perhaps now is the time to look into getting a corset made for my birthday. I don't think that there is anything else that I need, really, and I have been talking about it for longer than I have been talking about becoming an organ builder. That settles it! Some dreams should not be ignored! Thanks for your inspiration! :-p

And yay for you feeling better (i.e. less alone)! And yay for you not giving up on the postcard project! Boo for my rambling and almost undoubtedly missing the point!

Sending virtual hugs (big warm ones, but very gentle and not overheating).

Anna said...

I wish I could write something that gives justices to your latest post, but my mind is tired. So I am reading, and thank you for making me a bit wiser. I love the picture with the person that has the look on his/hers face that she sees on yours. I don't know why I like it, I don't even know what that face means.

Still reading

SharonMV said...

Dear Beth,

When I was thinking recently that I will most likely need to start using a wheelchair at some point, another thought came to me - hey I'll be able to wear heels again, I need to get some boots with high heels!

You do make people feel special Beth. I love the feeling that I get when I know something from you is coming in the post. And sometimes it's a complete surprise which is another great feeling. Then there is the moment when Dennis comes in with the mail & hands me a card or package from you. Then a very special smile steals over my face, a smile I think that only happens at those moments. Dennis sees that smile so you make him feel special too.

Sharon

cheryl g said...

I truly love these pictures. The first one is a moment from my childhood. The last one really speaks about looking to the future.

You may not have taken over the world (yet) but you did get me to buy a corset which is a pretty amazing accomplishment. I remember our goth day in the cemetery very fondly.

I don’t think I have read “Object of Desire”… it sounds intriguing. I would like the story about the maid for the same reasons you do. I like a story where someone is willing to follow their dream and it is extra good when they have a partner who believes in them and supports them completely. That is a wonderful thing.

Spring is a good time to cultivate dreams. The world seems full of life and newness and possibilities. I used to spend a lot of time in the spring daydreaming on the roof or on top of the big hay stack. I realize you are still struggling with the loneliness and feelings of isolation but let’s go chase dreams…

Who you are has not changed. You adhere to your code. You care about and help others in need. You leave no one behind. You live with an honor and nobility that shines from you. I wish you could see it as well as we can. I have also seen that look on your face. “They shall not pass.” I have seen it as you have helped me and I have seen it as you have protected Linda.

I know my future will be lived for myself and for others. My future will have bright, golden moments and periods of dark despair but I embrace it all. Yes, let us make plans, talk about dreams and give voice to our desires. Change is coming. Change is difficult, even good change is stressful but it still comes. I will meet it with you.

FridaWrites said...

Loved the bookish manga images--you are still a bookish girl, even if you can't read the same way. I have concentration issues from pain and can't read the kinds of things I used to. But I reread Translucent volume 1 today--I didn't get a chance to read 2 and 3 last spring when I was working (though my daughter did)--I made it most of the way through 1 today and want to read the others.

Those books feel like spring because I read that one last spring--and Japanese things remind me a lot of your trip last year, and I'm finding myself wanting to go revisit your vacation photos.

It's cold here, but feels like spring.

I had odd dreams earlier. I'll call mine Wheelchair Smackdown.

Anonymous said...

Hello Beth! You are my muse! Shocked? I used to think that perhaps you were just so stubborn that you refused to let go! Even so I couldn't believe your selfless act of the postcard project! Now I realize that keeps you going in mind and spirit! You touch so many and I'm honored to know you-a true hero! I've never known a hero (heroine I mean)! A person who gives beyond her means physically, monetarily, inspirationly, and selflessly. I thought this may be a fictional character in ugly tights that saves the world from some evil doer. I want you to know that I am going to become an advocate for those that are alone because of disease or whatever the reason may be! I've just been back from the library and I've many books to help me get started-I have big plans (I won't say dreams, because that is not an action word). No one should feel alone in this life!
Thank you my Heroine for showing me my cause, and thank you for not making feel all alone! HUGS and LOVE, Bronwyn

Elizabeth McClung said...

Cheryl: your comments toward the end made me cry; I waited a long time to hear that, a long, long time. "I kept my word", "I kept my promise.", "I did not fail them." - these I have said dozens/hundreds of times. I didn't realize that was only half, and I was waiting for the response.

Lene: Hormones you should talk about more! How can I make you a raging hormonal teenager again if you won't let me?

Yes, we hate being seen as our disease, yet, take it away, stand up and walk away, look back at the wheelchair, and walk down the street. What would it be like? Who would we be?

Lene, there are only two places that reshape you; the military and this, and here, you instead of THEY get to decide who you will be - pushed over and over to the breaking point, you decide how to live it, what to live by, and what is worth working toward. What will you do now that your success is threatening your health, what YOU can bear? What will I do now that the medical who 'help' me are pushing me beyond WHAT I can bear? It is never as simple as "No" is it? But change is coming, I guess?

Abi: I think you have me confused with the crip who claims they will walk again and is going to cross the UK using only thier pinky. I tend to cheat as much as possible to get what I want done, definately not inspirational (Hey, the cat girls showed me how to cheat!).

Yes, there is a certain style of goth which sadly doesn't understand irony or individuality. Which is why I like Japan which has goth, goth loli, sweet goth (based on 18th century), Rococo goth, and then any mix and match you want. Want a corset with skirt of pink with plenty of petticoats and a skull purse with a parasol of black, you are a sweet goth with goth loli leanings. Want to wear brown, no problem, want to wear a little hat, no problem. As the hero/heroine of Heaven's Will says, "Why do I wear these clothes? .....because I look cute!"

If your dream has corset involved....please do not ignore this dream, just send pictures!

Well when I talk to goths, or here punk goths they ask why type I am and I say Byron and Mary Shelley style goth. Which makes them confused but too scared to answer - meaning, I wander about europe having writing contests and swimming the grand canal in Venice (Byron did, just to do it), and write odd things in hotel registers and dress as you like. Original Goth, with a tinge of teen and Japan thrown in!

I agree, how can 'goth' have a DRESS CODE - ack, is there now a special club like Gentlemen's clubs that have dress codes? And if so, do I want to get in? I want to wear full on petticoats ripped high while I do archery in a corset - now that would be fun!

Victor Kellar said...

Spring is change, isn't that what they say? For us it means mud on Miss Hayley's belly but grass for her to run on and maybe, this spring, a new puppy with whom she can share her yard

Spring changes all of us, if only in the clothes we wear and the amonut of time we spend of time. We all have sides, facets of personality and in our country, theose facets gleam differently with each season. Still, our cores remain the same; you are a multifaceted creature but the core of you, be it EFM or not, always remains.

And books. I love books. My house is filled with books and edged weapons and dog toys. But books were there first; while all the other boys in schools were out on the playing fields I was in the library, sitting in a window, on book in my hand, a book at my feet, a book at my side, the light pressing against me, warming as spring moved over me

Neil said...

Playing the "what if..." game is completely pointless, I know, but if you hadn't been given the heart that did party tricks two years ago, you wouldn't be the same person you are now. Your priorities have changed, in a huge way; you have a completely different outlook on life, the universe and everything. Would you be as "good" a person as you are now? Maybe in some other timeline, you are healthy and running marathons, but not sending postcards, not caring about other people the way you do, not blogging. Maybe there's a Beth in some timeline that isn't married to Linda, and isn't lesbian. It hurts the brain to think how may of you there might be in all the possible universes...

You are most certainly not a thing; you are a Who, not a What.

Awesome images, as usual, dear. I love your taste in images, I do.

Cheryl: That's a poetic post. You got me crying too.

Beth, dear, can I come shoot with you while you're doing archery in a corset? I have an arthritic shoulder joint that won't let me draw my bow any more. But the two older sons can use it, so I'm keeping it. I will soon have a smaller bow that I can sell, though. Even Youngest Son is almost too big for it.

The fiery rehead with the sword: that's you tonight?

Love and zen hugs,
Neil

A. J. Luxton said...

Hanging out on this blog is teaching me to see every act of self-assertion as an act of Good. I like that.

The world is waking up... slowly, but definitely. That's seasonal, but it's also a generality. Laurie Anderson asked in one of her songs - "And what I really want to know is / Are things getting better / Or are they getting worse? Can we start all over again?"

She also asked this in an interview with John Cage: she asked him because he was very old, and had seen a lot of the world and really noticed it, and he said that things are getting better. Just so slowly that nobody sees it.

I hope the new GP audition goes well.

yanub said...

Beth, these are the most beautiful pictures yet, aside from the ones of you and Linda in Japan.

I agree completely with Lene--you are still EFM. You constantly amaze me with your full-on attacks at every conscious moment. You have really changed lives, dear, through your devotion to love and life.

rachelcreative said...

Oh see this is dangerous talk as I am having my hair cut this afternoon (I found a mobile hairdresser!) and all your reminding me of your embracing your inner goth and corset kitten ... I may agree to something really wild!

Life really is too short, for everyone, to not seek the things that bring happiness for fear of being different. What's so wrong with being different? It's strange how we all want to fit in yet want to be individuals. People are funny.

I, for one, am happy you embraced your inner goth. I have an inner emo wanting to get out!

I'm pleased that spring has arrived for EFM. There was a time when you didn't think you'd make it past the summer which has been and gone. Plans and hopes and dreams are fuel for life.

I'm a bit squirmy with the sexy stuff but I hope things go well. I am British you know. Moving swiftly on ...

Disability and degenerating illness do seem to be a very good compass to finding out what's important in our lives. Kind of makes you think there should be an easier way with less sacrifice and suffering. But it is what it is and if it was different maybe we wouldn't learn the same lessons.

Nothing like stripping things away to get you to hold on to the important stuff. I know I am (perversely) happier now than I was when I had the health and physical ability to do whatever I wanted.

The "if only" thing can I think help to look at life and learn more about ourselves and our priorities. But dwelling on it just gets me frustrated, angry and sad.

Drake said...

Hi there...guess who ;D

Thank you soo soo much for the beutifull card and letter! It is really appreciated. And so sorry I make you worry by playing houdini the whole time.

Currently, the image of the redhead with the sword is me at the end of each day...with the dead man behind her being the day.

That's right, still strggling with chronic fatigue. When I'm not working I sleep and when I'm not sleeping I work and wish I could sleep.

I saw my cardiologist and he was happy with my heart-valves. Saw my GP and he ordered a bunch of blood tests which came back clean. In the end, all he could suggest is some iron pills. They seemed to help a little...but still not joy.

Oh my dear, what can I say that I haven't said allready...

Love ya! Proud of ya!

Huge Hugs

wendryn said...

You know, "poor thing" is something I've never thought about you. I've gotten angry on your behalf because you are dealing with so much physically and mentally, and to top it off your doctors are making it harder rather than easier. I've rooted for your success and taken joy in your accomplishments. You are an amazing person, though, and "poor thing" just doesn't describe you at all. EFM lives!

The pictures are beautiful. You manage to find ones that perfectly express what you are saying, that expand on it instead of detracting.

You're living your life as you have it, and you are living it fully. That's more than a lot of people can say.

Elizabeth McClung said...

Drake: I am glad you are back, or have been able to read, but am sorry that life is so hard right now, that your physical condition is so hard right now. I am frustrated I cannot help more than a few postcards.

Rachel: I want to see this radical haircut, this inspires me, I say let the emo inside of you out! Why not? I figure they aren't loving me for my personality behind these walls so I might as well have fun.

Wendryn: I am glad you like the photos, I do work hard to get the right photos as I want people to be happy, or to have an 'experience' but now I sound like I am about to offer you some odd goat cheese on grass biscuts.

Dreams are for everyone, the living and the dying. I hope everyone takes up the free offer.

Yanub: I too have been thinking of Japan, and the Sakura trees. I have recently decided in one instance to NOT do a full on attack (I did one this morning anyway on a pompous woman who was to 'help me' but seemed to have insecurity issues). No, this time I shall try softly, softly - which I find for some reason scares people more, which is not the intent.

A J Luxton: Is it better, is it worse, I am trying to change the spin of the world, and that is a job that happens very slowly. But change is possible, and dreams and plans and a future where there are corsets for all! Sorry, not sure how the corsets ended up in there. I think to dream is to take a risk. And if there is no risk at all, not even emotional, then it seems a grey shade of living.

Neil: I think archery is open to all - assuming we are all facing the same way and not spread out in some random game. Ug!

The what if game only tells me that today is the day that matters, because it is the game which can hurt the most in playing it inside the head. At least to me.

Victor: A new puppy, but is mud preferable to slush? Can you say?

Books and edged weapons. My parents wouldn't let me buy a sword at 12 even though I had saved up all my money, as they feared I would use it 'unwisely' - like against other people. Since at this time I was praying to God to give me the power to set people's hair on fire, perhaps they had a point.

Now I just need to know WHAT books and I can gift ya!

Frida: what a gift, a book that feels like spring. wow, thanks I should read it again.

Bronwyn: No, I actually am pretty stubborn, and I don't know when to let go, it is a tricky thing that. I recieve much from the postcard project as well as every gift, I am a person who pleases in giving.