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.

I never meant to come back from Hawaii.

In some days I will be heading to Hawaii, I think it is in a week.Some people think or say that I begged and emotionally manipulated my way to a vacation. Others have ideas about what Hawaii means to me. Most don’t know that all this time in planning I never believed I would return from Hawaii. Or that I worked on a suicide plan and started stage one because I believed that Cheryl and Linda were going to Hawaii to only make me happy. Or that I have spent almost a year working to go to Hawaii and 10 weeks working every day, every minute selling things, including hundreds of dollars of books. Nor have I asked for aid to go to Hawaii, or taken money with one exception (that I found out about). Times are hard. I don’t want to do that to my friends.

I have diminished mental capacity (in certain areas). I also have limited physical capacity. It has and will take me eight times longer to do the same blog as it did my first year of my disability. This naturally restricts what I can share about my life. Even though I work, work, work. I feel I am on a train where the events around me are rushing by, and I can never be in the same time stream as anyone else around me. I do not know what day it is. I know I had a disagreement with Linda, an argument. That was last week. I know that because someone told me in an email I read today, I don’t know what the argument was. That is what having no memory beyond a day or two means. You can come up and punch me today and I will be mad. You can come up in four days and ask me how am I, as it looks my nose is swollen and I will thank you for noticing and think you are nice but tell you that I have no idea what happened, I must have fallen down. That is one of my impairments.

So I am not going to Hawaii to make memories. I am going to Hawaii because I love Linda and Cheryl. Linda has never been to Hawaii. Cheryl has never been off the continental 48 states. I wanted them, my family, to go with me someplace where they could experience someplace new. I dreamed it, I dreamed what it could be and I wrote it on my brain board. But just because you try doesn’t mean it is going to happen. You simply don’t know what is possible until you try. So I tried. And I convinced Linda and Cheryl to try.

I will likely not remember being in Hawaii the week after I get back. I will return to my room, across from the construction, and try to survive the winter.

These last two days I have been on oxygen almost continuously because I pushed too far, and the weekend took it out of me. That is what happens, I do something, I plan something, like the plans I have on my board for getting my wheelchair onto the breakwater: something I did because Cheryl had never been on the breakwater. And I wanted all three of us to go. And then I try. And when I do, I do it all, I leave nothing back, no reserves. So I pass out. Or stop breathing. Or aspirate. I have aspirated into my lungs every day for nine days. When that gets infected, I get a fever.

Over the past 12 months, Linda, Cheryl, I and others who help have sent out the equivalent of $14,000-$19,000 to other people (in the Postcard Project and other ways), many people that we know almost nothing about. As one example, we of the Postcard Project have sent enough postcards for every mile to cross the USA: 2,900. If I live a few more months, you could drive from one coast of the United States to the other following the trail of postcards laid end to end. But they don’t lie down on the road but reside all over, here is a picture one reader sent of the postcards they have received.The Postcard Project, like Hawaii, was something I wanted to try. I wanted to believe, and put my heart, my money, what I could sell, and yes, my writing, to create a community which believed that people are important. In the 70+ weekends since I started, I have NEVER had a weekend without creating, matching and sending postcards: whether hospitalized, whether ill, whether passed out. Much of that is due to people who gave in ways I can never repay: financial support, stamps for the postcards, postcards, and some weekends, Cheryl and Linda physically carried me. One weekend I leaned because of fever, when not passed out, with an oxygen mask on my face, finding Linda and Cheryl having collected postcards from a list I made earlier of people ‘most in need’: the dying, the lonely, the children, and those who needed encouragement when tragedies had struck. People mattered. And, so when I was conscious, oxygen mask on and at maximum, I worked on postcards. Worked knowing if I died or was hospitalized that Cheryl and Linda would post the postcards I finished, or help finish and post the remaining ones.

Is it so strange in this world to say, “I will be there for you.” And attempt with all human effort to do so? I made a promise to people: “As long as I live, you will get a postcard through your mail box”

But I also have OTHER plans and dreams. And because I am open about them too on the blog, and open about my worries, or anxieties, I have many, many complaints, all Anonymous (I kept about 80 from the hundreds). The following is typical of what I get lately.

Anon: Why in the world would you have a wish list for people to buy you stuff while you are planning a trip to Hawaii?????

I guess the answer is: “the same reason other people do.” I didn’t go on a summer camp-out, or vacation, because I can’t go out in the heat. Many people did. Most people I know have wish lists. When I can, I give those I know and care about things that surpass or come from those wish lists.

Don’t worry, because the Anon’s made me feel so dirty, I eliminated virtually everything on those lists that was not for Linda, or a memory device for me (I can go look at the list and know what I am saving towards). I am EXTREMELY thankful for those who got me gifts off those lists over the months. I am, because in the nights where I was weak, in pain, or impacted and hurt so bad I wanted to cut myself just having something to stare at helped a lot. Ask Linda. Ask Cheryl, since I know she bought often. Or Linda who said, “I would do anything to take this pain from you.” Every Anon says that my life is a lie who hurts the ones I love. Mentally I am incapacitated in certain areas. I can regress for long periods. Telling a 5, or 8 year old that because they are alive and ill, the two ‘Adults’ who take care of them will never be happy, that ‘Bethie’ is BAD, that ‘Bethie’ is a liar doesn’t help. Telling a young teen from a sheltered society where she is taught only to obey that she did not obey, is bad, and she does things GOD does not like doesn’t help. Because it not only brands all those who give me care as liars (and co-thieves), but leaves messes, emotional messes and a human wreck to be cleaned up. It is easy to destroy. It is hard to love.

Cheryl bought off the list because she loved me and knew that things on the list, like a manga or book make me happy. She likes to see me happy. That is her choice. The DVD’s I worked and saved for on my own. And when pain makes me a bit off my head, having another reality to see and live in to distract can help a lot (thank you 21st century!).

Don’t worry, people don’t buy any more and I am fine with that too. I don’t understand time, and days and weeks and month starts or ends. But I know that my friends care about me, love me. And so if someone wants to be angry because I do need specialized socks, then I guess they will be angry.

When I give gifts to friends (and strangers, because I ‘feel’ they need it – to know the joy of spontaneous caring), which I do every week, my presents to others are ordered from around the world, taking a month or two to arrive. They are limited editions or rarities of interest which I spend time to find: from soap called ‘Blood’ from Villianess to out of stock limited edition 2005 cult stationary, or sometimes just Hello Kitty Gum and something fun like a Yo-yo. I get an allowance, I have ‘mad money’ which is put in my account and that I choose to spend it on postcards, rubber stamps I think people will like, or gifts to give to people is my choice, right? If you care about someone, if you LOVE them, then you want them to be happy. I love dozens and dozens and dozens of people, most of which I have never met most of which I will never meet. But I love them all the same. The Anon's would want me to think, "Oh no, what if they are a scammer!" If they ARE a scammer, and laugh at the stuff I send, then I hope they can remember the love of the act, later, when it matters. But truthfully I would never think of anyone who has emailed me as a scammer (Well, maybe when they told me I won the BBC lottery worth 12 million pounds, or when a princess in exile needed to put 15.6 million dollars in my bank account)

Some people, over time, we will write, email and gift each other regularly. This is a choice I do and a choice some who care about me do too because we like each other. My favorite plushies are all gifts: Rabid (the Squirrel) who has holds for quadriplegic hand grips and watches shows with me, Pounce (orange stripped tabby), HKA (My punk Hello Kitty Beanie Baby), Miko (The grey cat guarding me on bed days), and Eiki Eiki who holds Linda’s heart. And when I can’t remember who gave me the plushie, Linda is there to tell me.

When I have a bad episode, or regress, to a period where I am terrified of everything, Cheryl says that if I am given Eiki Eiki I calm down. When Eiki Eiki was made, Linda chose the heart to go inside, which she was supposed to make a wish. Her wish was for my life. Eiki Eiki holds my life: Linda’s heart.

I will soon be moved from here to Port Angeles, stabilized then a day later, moved the two hours to Seattle and stabilized again, then moved to the airport. I only spend nine days in Hawaii, but six to nine days in the 120 miles getting me safely to and from the airport. And maybe in Hawaii I will do and see things like float in lagoons of 100 foot visability and watch dolphins play (yeah, it exists). I might see the 1,400 foot waterfall in the Valley of the Kings (still inaccessible for wheelies), or the Green Sand made of semi-precious stones (inaccessible for wheelies). I could explore a tropical rainforest (so far inaccessible), or see a plantation town intact from the 1920’s (kinda accessible). I might see flowing lava, or ascend to the top of the mountain, above the layer of heat that makes the stars twinkle to stare at the stars, bare in glory. Or I might not, I might not see the 16th century Kyoto Temple, I might not see anything at all. And all those books sold, and all those DVD sets sold for nothing.

But I came up with an idea and I tried. And because of that idea, and work from Linda, Cheryl and I, now Linda and Cheryl says going to Hawaii is “okay”. We are going to Hawaii and all is paid for (or so they say to ME). Yet almost every place I have on my top list to go to has an explicit warning: “Those with heart and lung conditions should not under any circumstances proceed ……”

I never meant to come back from Hawaii.

I love Linda. I love Cheryl. They know I do what I must to survive, whether that is badminton, or a 10K. And I pay the price. Is my risking my life worth looking at stars? Yes. Is my risking my life worth flying to Hawaii? Yes. Is my risking my life worth spending 50+ hours working only on postcards broken only for sleep? Yes.

I do not want them to say “She was alive, but she never lived.” In many ways, I would that people remember what I tried to do: care about people and remind them that they matter. My name doesn’t matter, the idea does. I wanted all people but particularly those alone, depressed, in darkness, or in trouble knowing that someone worked every week, regardless, because no one should be in those states without people caring. And someone did.

This weekend, I came up with the idea to go to New Orleans. Cheryl has never been to New Orleans. Never been to the French Quarter! This is a tragedy that must be remedied!

Right now, it is just an idea, a train trip to New Orleans, where I can lie and watch the country go by. But I don’t know what is possible until I try. So maybe I will come back from Hawaii. Even though I will know of it only from pictures. Pictures I took. And Linda and Cheryl will have memories. And maybe this winter I will dream of New Orleans.

Sick, Eiki Eiki, alone and yet trying to reach out, to get help: the better world

I am very sick, which is probably a combination of fatigue/exhaustion and some sort of opportunistic infection or spinal lock which makes the world go funny and me fall over a lot. I can’t quite understand how I could be exhausted, not when I didn’t eat until 7:00 pm today and I am tilting back and forth like on a ship focusing on the screen to make a blog (hey, I made a commitment).

The short version is that Beth is very, very sick. Really sick this time. I will have to accept bed, rest, and being taken care of.

I have spent days trying to connect to family, to anyone, as I am tired of being me, the only person I know with this particular condition. I feel a freak. I don’t want to be alone anymore. This lead to an amazingly horrific day today where I spent so much time on the phone and got, nowhere. The Canadian organization or Rare Disorders (I wanted a support group) is away, leave a message.

At A.A. (Alcoholics Anonymous) I got a rather hostile reception (though I did say I didn't want to drink when they asked!), as I was asking for support groups for self harm, and no, they don’t DO that, and gave a list of groups which included Overeaters Anonymous. I asked since I was struggling with Anorexia and both are about control, loss of control, fear of loss of control, and eating would THAT be a place for me. Absolutely not, that would be cruel to have an anorexic go to an OA meeting. They don't DO anorexia: I needed to call the mental health department.

I refrained from pointing out that ALL A.A. and groups from them like N.A. are based on a form of self harm: yet I feel that if I suggested the woman I was talking to should call a mental health ward because she goes to A.A., she would be upset (yet that is what she did to me). I openly starve and self harm and there is no where for me to try and live a better way day to day with support? I DID go to the mental health section and found that there is a program which does offer support groups....for the parents, siblings and those who live with anorexics. haha. For struggling anorexics themselves....nada. I WAS trying to not cut, or stop eating becuase I felt the loss of control (dying makes you feel a lot of loss of control). I was TRYING to be better.

Then I called the abuse line regarding abuse from caregivers (which is epidemic, two government investigations in this town alone). They had no idea, since I wasn’t a senior. We talked about my background; they were amazed at the level of abuse that was taken as ordinary. I called there because they were wheelchair accessible. No, the support groups they had wouldn't be right for me. And the person talking to me didn’t understand how it was I ended up caring instead of abusing. Or caring at all.

Then I went on to call grief centers for which there were ones for people who do care giving for a loved one who is dying, ones for people whose children were dying, one for those who spouses were dying, but none for those who were actually dying. I was trying to get better. I kept trying.

I called the BC Bereavement Helpline (toll free) for listening and resource listings of support for grief and loss, and found another recording as they are only open Monday to Friday 9:30-3:00 pm. Sigh. Linda later said, "Gee, what if you feel grief on the weekend?" Since I have ‘sundowners’ – which means I feel even more isolated as the sun goes down, to call at 4:00 pm was pretty brave of me. But no people. Lots of machines.

It was now hours later (as I was calling Akadot which had an error in my order but the system had crashed and after 6 tries or so over several hours I gave up), so I decided I just needed a HUMAN VOICE and called the Needs Hotline, the 24 hotline for those who needed listening, suicide prevention, abuse and anything else.

I got a phone message which told me that all volunteers were either busy or away and if I was being attack or abused right now please call 911, if I was committing suicide call this number and then at the end of the message it hung up. Wow, no 'wait for someone', I can’t even talk to a human on a 24 hour hotline? Harsh.

I likely have with days or weeks of reduced sleep and eating, not enough rest; driven myself into an exhausted physical breakdown of an already attacked system. Probably is it because of my disease as I can’t feel total exhaustion until it is too late, like I can’t feel temperature, I can’t feel hungry, I can feel thirsty, I can feel the need to pee, I can’t taste what I eat, I can’t feel bruising, I can’t feel muscles rip until it is too late, I can’t feel my hands or arms, I can’t feel my feet, even when they are bruised or crushed, I can’t feel my legs, I am a human zombie and I am alone. I can only feel emotional pain, like when another Anonymous wrote TODAY that my post ‘Sexual Abuse story: finally told’ to free myself of my demons was ‘this is really HOT!” piece of writing. Multiple sustained rape, abuse and torture of a prepubescent child: “Hot!”

So yes, I push myself because even as much as I push myself, I cannot seem to break through this invisable wall. Is there a person out there behind those phones, or does caring stop at 3:00 pm. Because I assure you when your nightmares are "hot" the terror and grief do not!

This is my plushie given to me ‘soon’ ago by Linda, her name is Eiki Eiki. She has a heart inside, and Linda said they told her to make a wish. What was the wish? She wanted me to live a long time.

Here is Eiki Eiki reading a manga (Uta-hime, the songstress), to one of my other plushies named...Bear. Some plushies CAN read, some plushies cannot, I can’t explain it, I try not to think to hard about it.

I did 39 postcards with Cheryl and Linda and had them sent off on Monday night, to be sorted at midnight (due to the holiday); there were many new stamps to play with, like the knight and the forest of adventure and dreams. I like those ones. And the lilies.

The woman on the abuse line couldn’t understand why I didn’t drink, why I wasn’t more..incredibly screwed up.

This weekend my parents came over, they could not remember the last time they invited me over, or when they had last been over. I asked them over to find out if we could be a family? I was turned down. Linda was told, by my father, during the discussion that she was ‘allowed’ to speak now. In the same way I was ‘allowed’ to have emotions...and sometimes not allowed. It was all somehow my fault. Their silence was the love of not wanting to disturb me. It was a farce and I was desperate. I screamed.

I was on the floor begging them to blame me for everything. PLEASE, no more fighting over who was at fault, it was ALL ME. Could they forgive me? Could he, would he, forgive me and let us be a family?

No.

The one word I needed so badly he never used: love. Today I told the woman on the abuse line that I believe that this world is going to get better and I work toward that. That cat girls and dog girls will learn to get along, as it were, and that they will find that their differences are not that much (maybe there will even be attraction?).

I know that I live a fool, I die a fool, but I continue to believe that just because I have not yet seen something does not mean it can not happen or exist. Like looking for the beauty of the moon rainbow, it seems that loving, caring, compassion to others as a norm is something to make people think there is something DIFFERENT (like wrong in the brain) about you. I believe that there is a world where the beauty of these things WILL BE SEEN; just because it hasn’t yet, and just because I will die before seeing it does not mean it is not worth believing.

One of my favorite passages of the bible, though Christians would call me an atheist, and I don’t think in this passage it matters your faith is Hebrews 11. It was about those people who believed in more: that there was a better country, a better city, a better world and though they lived and worked for it, and never saw it, they believed. “They were weak, and yet made strong.” “they were stoned, they were cut in two, they were killed...they were destitute, afflicted mistreated…” I ask the question of Linda and others, “Would you rather be right, or would you rather care about the other person?” For Linda and I, it reminds us what really matters. For others, they would rather be right.

Anyway, I will be back with something light and I hope another visit to different markets (the joy of Victoria is MANY farmers markets). I think in a world where even a 24 hour help line has a recorded message which then hangs up on you, yes, I probably have driven myself to exhaustion and beyond, over and over again in trying to make people believe that THIS corner of the world does care. Except now I must rest. Don’t worry, I will spend the time doing something constructed...oops I means doing something constructive, or maybe Eiki Eiki can help ME read a little manga.