Wednesday, December 01, 2010

A music video for ALL: to those who are there all times

You will need to listen and watch this video a couple times. The words matter. It is one of the videos I wanted to make, this is what I can do now, which is better than to not do at all.

I had wanted to thank Linda and Cheryl with Like a Ghost by Glass Pear. The words, both melancholy and a stripping away of masks showed me how over the years, there have been two pairs of hands physically holding me and helping me. Because of them, I was able to truly LIVE. They understood what it meant for me to hike the rainforests, see the beaches, and ignore the danger signs. Taking risks was a gift they gave me. Linda said watching it, “You have a luminous beauty, but it is because of how ill you are. People can’t live, looking that gaunt, for long.”

I sought to show the face I see when I wake up from passing out, and who gets me to places where I can dance, box, play badminton, and hike over impossible obstacles of roots and rocks. And who helps me demonstate the love I have for her and so many.

It is about them, but because the voice of the singer became my voice, the video is speaking for me, about me. When I write that I am alone it is not to insult or accuse, but to share my feelings and exeperience: what my daily living and emotions are like. The number of people most individuals are greeted by in a day of work, going home, out for dinner, meeting with friends. To see and interact with the people others see in a single day, now, in my condition, it might take up to a year. It isn’t pity, or accusation, but part of what is happening to me, just as Linda observed how people avoid taking pictures of themselves when they are ill. As the video progresses and I go deeper into the experiences of disease and survival, Linda and Cheryl were who were, in all physical states, watching over and who, with others, gave me the gift of a mental and physical space for joy and the assistance to fight back, in attitude from sticking my tongue out, to action (funds gifted I spend on the wooden stamps in the picture, on travel costs, on showing love back). I will never be able to repay Linda or Cheryl in the life they sacrificed in giving/gave to me. They do less, have less so that I can do more, have more, try more, risk more: and they do it knowing that I will die. There is no 'investment return' to this, just being there. I can only hope they understand the love I have for them for joining me on every adventure.

The video show how people go, and they have, those who wrote me and write no more, who promised to be there to the end and then moved on. I needed affection and interaction but the friends I have aren’t human. Linda and Cheryl saw that desperatation to give and receive love and so I have cats, and squirrels.

“Where can I put my faith?” the song asks and it is a question, the daily question, as my helplessness grows, makes life like lying on melting ice over deep and dark water. And so my fear grows. Linda watches and wonders what I have secretly wondered, 'how can I be so open, and give so freely of my heart and my life; to be hurt so often, in physical pain always and yet go on?' Go on when so little of thelove is returned?

If I am a light, or I have love, it is because, like our sun, I am literally burning my own core to make it (or as I start to sputter out, Linda, Cheryl or others at times pour a bit of their heart into mine).

In the last scene I am lying on the floor. I told Linda that in one way it is about fighting, but in another, it is saying, I have fought, and fought, and tried as hard as I can, and I can’t anymore. When you look at the picture you will see I have nothing left. Linda said, “And you are alone.”, noting the room and thinking of this last week. The song says, “If you are real, show me now who you are..”

I have had joy, and risk, and falls, and contentment, and now, with minimal energy (yesterday it took 48 minutes to pee) as part of what seems a withering decline the song articulates for me, “How can I love without grace?” All those individuals, whose voices are now silent, not five, or ten, or a dozen, or a score, but dozens and dozens, of those who I love and yet, in some way, I was not enough for them to keep caring back. With Linda we sort and remember how that this person loves that, and that person loves this and all special things found and given and all we shared, emails, pictures and letters and now there is a descended silence. I love them still, but wonder happened, or what I did to make me untouchable? I lie exhausted from struggling, and alone. I thought, that maybe there were some who, as I changed, didn’t know what to do, how to respond, and moved, like my parents, to what is a safe distance for them. Three have said they can’t stand to watch what is happening and going to happen: watching the pain hurts them too much. There are those who have shown love far beyond what I deserve, and those, heroic, who watch and stay in spite of the fear, of mortality displayed. But those silent individuals, I miss them, I long for them and the connection that...stopped.

That may be heard as accusations, but please see that with my words I am only trying to say this: I am scared, so scared, and alone. I fight every day, alone, and often long into the night. I am on six pain medications and I don’t see how much longer my body can hold up. I do sit ups and push ups and I fight how I can and when I can but…..will there be love? Can I believe in more than pain and that aching longing in these dark days of fatigue, exhaustion? I acted believing that love, that family, that commitment, that caring showed in ways that exposed me, left me vulnerable would help others to hold my hand, face their inner fears and battles to be here.

My rabbit Eiki Eiki I hold is one Linda bought for me on a 'Tender Love' day, Disability Dax, who tries hard but is not always that adept is me, but he has an exposed heart: I got him to remind me that 'heart' always trumps 'do'. Miko, my uke cat who is always at hand in my bed was given by Wendryn, and Raccoon’s Catbus takes me on adventures in my dreams. And above me in bed, on a shelf, peeking over, is a cat named Pounce from Cheryl, ready to jump. When I am at the computer, watching a good show, Rabid, my large hand sized plush squirrel from Raccoon loves to watch TV too, and is there to hold in the tense parts. Otto the Otter from Susan guards the living room couch, where I am move to when Cheryl comes. These are the ones who watch over me, who know me, and I know them.

I am embarressed to say I did not want to publicly thank these because others might feel bad. Yet these are the one who see me, meet with me, take my calls and emails. I say that because now is when that matters: so ill and in fear, I am a child again and these plushies are the comfort I have in this new world I don’t know. Some hours and days it is like when I used to wait for my father footsteps returning from work, all I can do is hope. With these 'friends' I hang on and wait, so that during a 'good hour', or 'good day', I can be more, but sending postcards, or gifts, or emails, or blog posts is only possible because I have been able to hold on. Now you know how I hold on, and with who.

19 comments:

SharonMV said...

Dear Beth,
I know what it's like not to see people - most days I see only Dennis (& Chloe our cat-person). I'm sorry to read that your fatigue & weakness are affecting you so badly. People don't realize how hard & scary it must be to so weak, unable to take care of yourself.

I endure a little of that - there are many things I can't do for myself. Going up & down our one flight of stairs is a once a day trip that requires all my strength & fortitude. Making a meal for myself - that I no longer do. Just eat stuff that requires no or minimal preparation. These are just small examples compared to what you endure. Yet to an able bodied, fairly well person it probably seems very limiting & difficult.

I would not be here without Dennis & all he does. The loneliness would be unbearable without him, our Chloe and my stuffed animals, known collectively as the "Mudgeons" (for curmudgeons).

And without you, Beth, my very dear friend, my life would be far more lonely. You understand so much & have so much love to give. You work hard to keep up with what's going on with me, even through your memory problems & changing health status. I will do my best to be one of those who remains, who never turns away.

I'm thankful that you have two beautiful women who love you so much and that I've had the chance to know them through you.

Sharon

Baba Yaga said...

When our caring fails (because I know mine does at times, and everywhere), it's not because you are not enough, it'd because we are not enough.

It doesn't feel that way, I know. The lack of recognition, even before one arrives at love, always feels like personal failing. It feels like shame. But it's our shame, the rest of us, not yours.

There comes an end to spending oneself, or at least, to spending oneself as if self had no end. The glorious fireworks become fireflies, and no less beautiful when one or two glimmer than when rockets were firing and Catherine wheels spinning in dzzy profusion. You've earned rest a hundred times over: I hope that it can be restful, at least more than not. I don't know whether it's realistic hope, and I'm sorry that I don't know, and that it might not be.

You and Linda and Cheryl have forged something extraordinary: even from half a world away, that's obvious. & your video is beautiful. Truth and love together can't hep but be.

Kate J said...

Still here. Loved the video, Beth. It took a lot of guts to put that together. Guts and heart and whatever it is that keeps you going.
I was thinking today of friends lost to Aids... friends surviving HIV... and friends with other terminal, mysterious, uncategorisable conditions just as hard to deal with, like yours, maybe harder because you're pretty much on your own in the face of the world.
Love & peace to Beth, Linda and Cheryl. One for all and all for one.

Elizabeth McClung said...

SharonMV: True, people don't understand the fear, terror that helplessness brings - even though most horror films are based on it.

I know what you share, so I am not sure what I know. I know what I share, so I am not sure what you know.

Baba Yaga: I am always grateful for the kind of insights you have, and you risk sharing, the ones which push me to expose more, honest more, share more. It is shame, that feeling, and confusion, that I will leave life without knowing what it is that bothers others. I think for some it is that I believe them, actually and totally believe them and what they say, and so, when the actions and words don't match I am surprised, or hurt and say so. This it seems is a sin of the highest order, to believe and to share feelings as if what was said was true, friendship.

The constant, in all things was me, or that best part of me which looks head on and smiles, and jumps right in. But the pictures tell that I have been protected by those who love me, so I can love, and be. And Cheryl did dance, I have the proof.

From me: This is part of 'meaningful time' or 'memory time' and if my dying next month leaves someone with a regret because, well, I was supposed to keep going, then I would do or say what is needed now, for yourself if no one else. I can't have any regrets then, one of the benefits of death. But to wait, and think that because I can't film and blog the minutes and hours and days of fatigue, they don't count, that once Linda gets a job, and we save toward another adventure, then it will all count - that's not a way to live for either of us.

Kate J: People died for 20 years from AIDS before enough white people in San Fran got it named 'the gay disease'. So no difference, on the world's AID/HIV awareness day (today?). Michael J. Fox said about getting Parkinson's, not 'Why me?' but 'Why not me?' - it rings with truth, that. But I think of those who risked the most, and some are dead, and some have gone. I still risk, and dare, I wish there was a place or pack for me to do it with.

wendryn said...

The video is beautiful. You and Linda and Cheryl have worked so hard at so many things together, and it still inspires me and amazes me to see how strong the three of you are, how much you support each other.

I'm sorry it's so lonely. I'm glad the cat I sent is still there and provides company - I don't know if it helps, but knowing the cat is there makes me feel like I'm there a little bit, too. I can only do so much from here, and I wish I could do more, but it's good to know that little piece has helped.

You have fought as long as I've known you, for longer than you've been sick. You have always fought to make your life and other peoples' lives better. I love you for that, for everything you are, for the way you have cared about other people so much.

I wish I knew what else to say. You have always used words well, and I don't have the words to say what I want to say. I'm still here. I'm not going anywhere. You matter to me, and I'll keep sending postcards and emails and whatever I can.

You matter.

*hugs*

deadrose said...

What a beautiful video you made!

I've been very quiet lately. Times here have been bad and I didn't want to have to say how bad. But Dave found another job, and the landlord's been making his payments so the house hasn't been sold at auction. We just wish it would get settled finally so we could quit living on tenterhooks month to month.

Emrys moved back home from her brother's house so we're all a bit more crowded, but it's good.

And I miss you. I miss writing to you. I'll try to start again.

IWASNTBLOGGEDYESTERDAY said...

Ohh Beth, so sorry you are feeling so low. I'm still here in the background and feel your love everytime i look at the postcards you sent me. Am so sorry I haven't sent anything back, i have no excuses,i'm just slack like that, ask my little niece who waited 8 months for her birthday pressy.
All I can do is send loving thoughts and let you know I'm thinking of you.

Raccoon said...

Yup. I'm still here. Not leaving.

I don't remember Catbus. You sure that's from me?

The video was touching.

JaneB said...

You matter, and your caring matters. People fail, it's part of them being human. I wish they didn't. I try and hang on, but sometimes I am afraid of getting it wrong, or selfishly stuck in my own little problems, and I don't do the little I can. I'm sorry about that, and I try again - and from reading this blog over the years, I know that's what you do too, keep trying again.

I hope the fleecy skeleanimals blanket acts as a hug from me sometimes, when things are bad.

Vanessa and gang.... said...

When I read your lonely blogs I wish that I wasn't sick for long periods and unable to give you love and choice during those times.

I'm glad that Linda and Cheryl are there for you and that they help you function. If it weren't for Stephen's gentle guidance I'd be lost in this world too.

I love the vid of you and the insight into your mind. Dax is sitting on my end table keeping me company at night too and the baby has Freckles which you sent her. It's her favorite plushie. :D

P.S. I sent a postcard this morning to catch up and show that I care. {{{Hugs}}}

Lorna, Bob and Liam said...

A beautiful video.

Beth, I'm so damn tired right now that I can't even think of anything profound to say. That's not a plea for sympathy, just a statement of fact.

So it's not fancy, but: I'm sorry you are alone so much. We all like to say things like "we're with you in spirit" but the practical fact is that we are not sitting with you in your room RIGHT NOW. We love you and think of you and care about you and Linda and Cheryl... but in the end, that must be rather abstract at times and not the comfort we wish it would be.

And having said that, if we can't be with you physically, all that is left is, I guess, energetic - the power of heart, of mind, of memory, of passion and love, of hope and compassion and belief.

We love you. What else can be said right now?

cheryl g said...

Thank you Beth, the video is beautiful as are you. One thing I am certain of is that you love me. I am so thankful for the family you and Linda and I have made.

Dawn Allenbach said...

I know being in this rehab facility isn't anywhere near the isolation you must experience, but the last five months have given me a small taste of isolation and loneliness. I'd hate to think of the state I'd be in if the doctors hadn't started me on Zoloft before I left the hospital.

I'm sorry I've been gone. Sometimes I think the mental energy to get on the computer is too much, but I realize that my mental state is only made worse by lack of contact with the outside world and by guilt of not communicating with you. You have so many more reasons not to get on your computer than I do, yet you're still here. You show me how to stop feeling sorry for myself. Thank you.

I hope you can forgive me for being to self-absorbed.

*hugs*

Neil said...

Lonely is awkward. I wish you weren't alone, and I'm grateful that Linda and Cheryl are there for you.

Sorry I haven't been reading for a few weeks; it's been busy here, and that's a pathetic excuse.

I have one of your Gotta Fly bands on my backpack, and I think of you many times a day; I keep trying to send positive; I hope it helps. :)

The video shows your true strength beauty; they come from within you.

I'm not leaving you, and I'm going to try to write more often.

Love and zen hugs to all three of you,
Neil

tinarussell said...

That was wonderful!

It is so important to have constants in your life, people you know are there for you always. I’m so glad you have that, the people who stay with you while everyone else comes and goes, who stick by you when others get scared. That is true love.

BTW, I had a cat named Pounce growing up! I miss him so much. He was a very dignified tuxedo cat. Anyway, I love plush dolls, too, and so do a lot of my friends. Plush dolls can be very fun and comforting.

tinarussell said...

(shit! Blogger kept telling me my comment wasn’t working, and then kept posting it anyway. Yaaaaaargh! You can delete that duplicate comment... and this one...)

Elizabeth McClung said...

Wendryn: Thank you, I worry that the words are leaving me, no elegance, just like brick laying.

The cat matters, as I know, consciuos or not, that it has the traits and caring of the person who sent it, and whose contact since adds it's character.

Deadrose: it sounds like a difficult time, and I am glad that so far, with the job, the positive is possible. I understand the living on tenderhooks and it is not a nice place to be, like a sea of hot coals, dancing about looking only for someplace to rest.

Iwasn'tbornyesterday: Now is when I am alone. The difficult is that there is a window when I can respond, and that is getting smaller and smaller - even 3 emails a day is hard. How long until no emails can be responded to? Time is not on my side.

Raccoon: I know Rabid is, and has had 'surgery' from being used so much. I don't 'know' about the catbus, so I must trust Linda, perhaps it is someone else. But you are here, your character is here, in Rabid, and other avatars.

Thank you for not leaving.

Jane B: Yes, that is what I do, and I think that you give yourself too little credit as I think you give me too much, but you seem to feel the reverse. Why is it always the failing that seems to be memories, while changing, and working for that is background? Annoying that!

I love the Skelanimal fleece, it keeps my feet, which have such bad circulation, warm, along with my lap, every single night.

Elizabeth McClung said...

Vanessa and gang: I am glad I sent you a Disability Dax, he has a certain clumsy charm. I am glad that Freckles was the right plushie.

I wish I was sick less, here daily instead of in hours when I can see, on days that are good. I am sure you know about that - we share the frustration of our limitations. I have to just keep on, keeping on, you taught me that.

Lorna, Bob and Liam: Fatigue sucks, literally, sucks away the color from life. I think many of us could use people who are there 'in the now'. I could say I think of you, as I do. I think of around 100 people a day, but I can only send 3-4 emails, and that is what matters, postcards, connections.

annette2 said...

I keep seeing things on line and in the ideal gifts articles that you would like - special soaps, great jewelry, things with skulls, great anime and manga pictures. I wish I could send them all.

You have such a strength yourself and with Linda and Cheryl that you are not a person anyone who has "met" you will forget.

Annette