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.

a short squirrel interlude: being home

Hawaii is over, Hawaii is still here.

The trip is over but some memories stay, and the idea that problems are just things to be overcome, that stays. The attitude that I am a valued member of society remains. But the last two memories or ideas are under assault: phone calls daily, from wheelchair sports collecting money, from Triumph who says they have been trying to get in contact (“When?”, “Uh, I believe I called in June.”) as they want $700 to avoid putting a computer unused due to glitches on the loan program. VIHA, Beacon, is there anyone who doesn’t call not giving a damn about me compared to the forms. I still have no GP, the walk-in clinic cancels the specials or tests ordered. I long for the time when people saw overcoming obstacles as something good, when at Badminton a player tries to claim a point because I was wheeling by (off court), “Wheelchair near court! Interfere! My point!” He later looks at me, realizes he will be in a match with a female wheelchair user, and takes his racket out of the line up, then puts it back to end up on the court minutes after me. Try putting ‘Jew’ instead of wheelchair and see how that sounds. I worry I left the best part of my on the Big Island.

Lungs, heart and nerves are withering, are dying. I live a life of oxygen and dusky fingers. I am adept at using my teeth for many things now. And the signals, the heat has increased in my upper spine, above the T-section. And by increased that means I am on 3 pain killers during the day, and at night the strongest, 5 pain killers, 2 sedatives, and then a spray of medicinal marijuana onto my cheek to help it absorb in minutes. I hallucinate. I bite my lip, my tongue. And I scream. How can I hold on to something, squeeze something to help me take the pain when I can’t feel my hands? I live by watching what my limbs are doing, I have gross motor function, felt or not: a crane operator. But the spine, it burns literally, while my body is goosebumped in shock it burns hot as I scream, my voice husky from a lack of oxygen. I don’t know how long? As many breaths until my lungs can’t push out any more.

I asked advice. What to do when the future is here? When it is seen? Spend more time with Linda, spend more time with squirrels.

I can do that. We have polite squirrels who often have a ‘a peanut for a starving squirrel artist?’ look. Yes and peacocks. The ones who aren’t thin are the ones who are bold. We found a pair of squirrels, both blacks (the smart ones) and one was getting peanuts every 30 seconds, running off and burying them. The other squirrel was digging up the recently buried peanut and eating it. Squirrel #1 hadn’t caught on yet by the time we left. I hope they are siblings.

We met an offspring or cousin to Psycho I call Fearless. Fearless is one squirrel who is going to survive the winter. Why? Because as Cheryl said, “That squirrel will be mugging old ladies for Chicklets.” Well, as to mugging, she would know.
As for me, I perfer my squirrels to view me as sort of like the bookmobile, I am the peanutmobile and all they need do is climb up and take a look at what is on offer. Fearless, upon returning, would run across 200-300 yards before leaping at least four feet away and landing halfway or more up my leg. Now I know what a tree branch feels like (and isn’t peripheral neuropathy good as he was using claws). I could feel the whump of force through the wheelchair. But at the end of the day it turns out he is quite picky, Fearless the gourmet? Or just wanting the highest calorie content?

As you can see by the leg, as he starts to eat after mugging Cheryl, Fearless has had plenty of action like fights. There is a claw mark on his back, likely a crow. This must be why he is basically sitting atop the person he just mugged and having a sandwich. Luckily Cheryl didn’t mind. See, we have VERY disability friendly squirrels (the people, ehhh, not so much – as we had been just been to a pumpkin farm and found it hard to find space in the disabled parking full of race cars and family vans, without a single blue badge in sight).

As we wheeled home, since I had frostbite in one hand, after turning off our cameras, a full grown bald eagle flew over us, just above treetop. She had a whole branch in her claws, nest building was my guess. There is one bald eagle at least in the park, but rarely seen. It seemed a good time to go home, falling under the shadow of the bald eagle.

The pain is still here, the fear of living without a net medically, the isolation, the daily times of being helped to breath, to clear the passageway, passing out due to lack of oxygen, the inability to move at all more and more often. I look into a future which realistically has no hope and want what everyone else does: living, a job, a social net, family. On one hand, VIHA has been hinting at a care facility. On the other, I am still planning a new trip while paying for the last, while sending out postcards and thank you’s. The race to use my hands has never been more painful, aching and conscious. No, I haven’t been well but I force myself out anyway. I force myself to do so many things, and now, I force myself to step back and take time to be here, and grieve a little bit.
It was too hard to face things. So my degeneration progressed. Starting today, a ‘Good Day’ isn’t a day when I am mentally like I was, or had a competitive experience, but one in which I didn’t scream, in which I smiled, or just stared at clouds. It is time to stop hating myself for the parts and times of me which aren’t as close to my Able Bodied Life as I could get.

3:35 minutes: openly, I burn, what do you do?

It hasn’t been an easy few days for me; to listen while people cry, sob because the disease is in your brain. They can see exactly how you are reduced, less; that you are not what you used to be, not by any means, and that you don’t even know it. And I just sit there because there are right, and no amount of play acting or pretending is going to make me better. The only way I can stand that pain of knowing is to disassociate, to feel nothing at all, or try. Which is where I spend a lot of my time. Because people depend on me and I can’t run and hide: I can’t go and find a gun, and blow out my brains, what is left of them. Or I could but I don’t. It is fighting I guess.

Someone asked me how could I grow up in the environment I did and still be…well, me. I did it because I choose hard. Yes, I could have focused on money, or a house, or the façade of family and used that to feel like a shield between my fears and me. I was the lonely child, the lonely tween, the one alone. Sometimes I was used by others, as a ‘usable friend’ so they wouldn’t feel as bad about themselves as they did. Sometimes I was bullied because I reminded people of themselves and what they were running from in some way.

I think most people know what it is like to be alone, and not in a nice way, but where no one waits for you, cares about you. There are no phone calls for you, there is no post for you, and there is no one who wants to know how your day went and no one who cares if you were knocked down. But since other people go on, since there are teachers or bosses to obey, or parents to punish you, you continue because there really isn’t any conceivable alternative. And once a person has freed themselves, they often build up defenses around themselves, so that they never have to go back to that place inside. They would rather live in part, a lie, than face the demons which they think they have walled off. The problem is that as Edgar A. Poe so eloquently illustrates, you can’t wall up all you hate about your life, or yourself without walling up yourself too.
I did that, I made that mistake. I thought I could just have ‘a bad phase’ as part of my history. Except I’ve had nightmares for every night Linda has known me and intense, horrific nightmares for the last several years: a nest of maggots in my head while I try to keep my boss happy and then keep falling down from my hair, trapped under a corpse while people skin my feet, start skinning my hands. Sometimes it isn’t even the dreams, with everyone I have trusted coming after me with knives, but the feeling, the never ending dripping horror, the one that makes you wake with a gasp, and shudder because you know you WILL have to sleep sometimes and then the razor wire will be used on your vagina while you are strung up, or you will be thrown from a cliff until the bones show through the skin. These are the ‘nice’ nightmares. You see, it turns out that walling up parts of yourself, tends to piss off parts of yourself. And it wants to talk, whether you want to listen or not.

I follow what is hard. I was a young teen when I understood that Jesus, as written in the gospels, was verbally abused cruelly, was called the sorts of named I was being called; crazy, stupid, of unwed relations, of inbred relations, everything they could think of. And then there was the physical violence. And yet, every day, this person went out and honestly cared, cared about people he KNEW would hurt him. I believe that even on the final night when he greeted Judas he honestly said, “Friend.” Because even then he knew that this person still had a choice and could have been his friend. Oh, we tell ourselves we don’t have choices, but we do, from how we respond to how our boss speaks to us, to how we accept, as the complicit crowd how our boss speaks to others. We choose to go to work and we choose how to interpret that work.

I decided that I would try in every way in every minute to care about people. This decision has caused me more pain and isolation than any other I have made. It has left me fragile, not just one day, but every day. Because I open myself completely; I open myself emotionally and give that to a stranger. I give it to an acquaintance. I give my heart to a friend. And every one has at different times and different ways, reached in and ripped me up. And thrown me aside. And when I am able, I get up, and then open myself completely to the next person. It gives me the shakes, and it is hard, very hard.

And yet, simply because it is hard, doesn’t mean it wrong. And until I believe it is wrong, I will continue. And as fragile. Just this evening I got a message posted publicly that a man, not a gentle man, wished to be my caregiver. Because then when I am alone and helpless he could stuff his c**k in my mouth and (it went on for some time, there are many things he wants to do). And yet, I have literally had people ask me to send someone like him a postcard, and to fill with it with as much love as I could. And I did, because I could imagine the pain and loneliness it would take to bring that level of hatred/anger at another human. Oh yes, it did make me shake, but I did it. I will do it again.

Only now, my capacity to make decisions is being limited, because my ability to think or speak or do either is being affected. I wrote a short while ago about regression and memory confusion, in a post which I hope will help anyone who has a relative with Alzheimer’s, Parkinson’s or other cognitive disorders. I remind people of this post because I don’t know if I will be able to write like that again. There are many types of hell and hearing the ones you love in anguish, and grieving because you exist and they see what this disease is doing is one type of hell. But I fight by going on. I must go on. Because there will be more types of degeneration, and I will need to narrate that.

Some times, some days, I am a confused child, I have the fragility of a young child and the innocence as well, that is what a ‘brain-wipe’ gives you back, the innocence, except of course for the hate mail every day. It also eliminates all but the most vivid memories in your life, which also happen to be the ones you have been trying not to think about (in fact may be the very ones you have been running from – but look, they came for you!).

This disease has tested me but it also has tested you. Yes, if you are reading this, then like everyone you have choices. I get to say things that others don’t (or won't) because of 3 minutes and 35 seconds. That was how long Cheryl counted before she started the ambi-bag on me. I stopped breathing for 3:35 minutes (and I guess beyond when she breathed for me). At four minutes permanent brain damage occurs. How many seconds did it take her to notice I wasn’t breathing, to start counting? 10? 20 seconds? More? So what do I have to lose? I have four minutes telling me, make the words count. So I say to you, what makes you so different? What are you doing to make things count? If you are sitting on a fence, get the fucking splinters out of your ass and get down here.

I don’t have long realistically, and while I may PLAN for the rest of this year, I may also die, I would have died or ended up on machines if Cheryl had not been there, yesterday. So, yeah, you got stuff going on in your life. And yeah, there are people dying in other countries. Except they don’t creep you out like me, because I am like you. I am the person who exercised, who ate right, who shouldn’t be dying, isn't that right? And if someone who has traveled on five continents and seen the wonders of the ancient world, who owned a used bookstore, written an award winning book, competed nationally in sports, and has a raft of degrees is dying in a horrid way...why that means you could.

I’m not overweight, I’m not watching TV, I’m not on welfare. Indeed, I have paid in for 20 years to social security in three different countries: the US, Canada and the UK, and I have received nothing back EVER: no unemployment insurance, no disability pension, nada. Currently, I don’t even qualify for the provincial assistance for payment of my medications. So, I am not any cliche or stereotype. So yeah, scary. Look at your life and realize that 1 in 35 women will get MS, 1 in 700 will get Lupus. You have a decent chance, that no matter WHAT you do, or how important you are, or think you are, you and/or your friends, or several of them will end up a bit like me. Now that is something to think about.

So what DO you do? What are you? Are you the consistent comforter, I have a few people who do send me emails every day, expecting nothing in return, simply to let me know that people out there, like me, care. The emails they write give me the human contact I have lost. They stop for me, they wait, they spend time. They are the people I know, the ones I care about because they cared about me, and show it. They help me, because they show me their faces, their inner lives and I have to strength to do the same here.

Or are you part of the group which helps me fight, which works with me in things like finances or post/mail to try to get a better sense of sequential time. To learn how to read, which is critical in making both emotional and mental connections and links to different parts of the brain. Or to send surprises that I can anticipate? Or one of those to help me with the postcard project by helping me with funding for postage (desperate for 94 cent US stamps by the way!), for shitajiki boards (which I buy as the person gives me free postcards in equal value), for the stickers, for the rubber and wooden stamps? This is the defense, the group which surround me because as I grow less and less able to understand the complexities except, “I buy this and I get postcards” or “I have stamps for postcards.” These elite are there to make sure I can continue to fight in my own way, diminished as it is, because I stand on the shoulders of giants; those who have committed themselves and their lives, or finances to a person they never met.

Or are you part of the very few who are here to clean up the mess; who either in person or financially, are here to comfort, to protect, to make feel secure a person who does not understand much except I don’t understand and it is scary. So that when it happens that I saw something I liked and I got it but it turns out that $20 and $30 and $40 don’t make $15 (this is a real example), or that a bunch of $16 added up yes, CAN end up being more than a $100, or $200 ("but it was just $16, and $16 is small, right? How can small be big?"), the 'adults' take over while I am comforted.

And with Linda still disabled, and off at her doctors or in a drug reaction or sleeping, while I am not EXCATLY the two year old who drags out the white flour and decides to decorate the carpet, I can still cause a bit of a mess (unintended), sometimes financial, sometimes putting me in an emotional withdrawal. Someone or a couple someone’s has to be there, to set things right, to clean up the mess, to get me out of the withdrawal. To let me know that no, they are NOT going to take me to a HOME and that I need to sit and watch this nice DVD and NO, no one is mad at me. But also it might NOT be best to tell bookstores that I want all these pretty books if I don’t have money in the Ossuary to pay for them. “But I do,” I protest showing a $20 or a $40, which it turns out is not enough to pay for the art books even though I only found FOUR. Which isn’t fair at all! And they need to explain it isn’t fair but it also isn’t 2001. Which is a pretty big shock. As I still cannot accept this number on my Calendar.

I smiled once in the last three days. I was putting stickers on postcards (I think we did 48 or so), and I said, “I like doing this.” Because the thing is, I can be resplendent. I wore a spider web corset yesterday and I am working so that I can even feel things like ‘happy’ or ‘fun’ and so that I am more. That I transcend, because it doesn’t really matter if I am diminished mentally, I can still be very resplendent, that in giving myself entirely to something else, I someone become more than myself. I don’t know why it works that way, but it does.

So get off the fence and ask Cheryl or Linda (click on Girl’s Gotta Fly and profile for email), what needs there are. You too can be more, more than you are. And you know what, I think coming down and giving that a try is a good idea. I don’t know anyone yet who seems genuinely unhappy because they cared about me; or because they asked for a postcard. Not one person telling me they are unhappy because they asked for a postcard and started reading the blog, and maybe commenting, and caring. Or that they gave themselves over to caring and it made them a WORSE person. And if you are planning on getting involved may I remind you: 3 minutes 35 seconds. It turns out that four minutes is a bit of an mini eternity.

There is beauty out there, and fragility, and I will find it, because I hold both in me, and I can find them in others, in the secret and open places. And I will, even with my open and innocent face, tentatively try to find what good I can….and then give it to another. This is all I know. The postcard project is 10 months and I think just over 1600 postcards. That’s not very many, and that is very many. I, Linda and others have spent over $6800 on the postcard project (used calculator!). And another $1300 or more on the ‘surprise package’ project. Which isn’t medicinal…..except it is. Packages are still going out, postcards were posted yesterday, they are arriving around the world today. And what difference do they make? I don’t know. They made me a better person, I don’t know if they have made Linda or Cheryl better people. I think they made them more tolerant and patient people just having to deal with me! And I will go on, because while I am SURE I could have bought a bunch of cows, goats or pumps for villages, I couldn’t have made a person who hadn’t laughed for a week break out in laughter. I couldn’t haven been the only post someone gets beyond bills. How much have different nations allocated for giving back hope, for giving back belief that a person matters. I do not lie. If I believe you matter, you matter. Now you know.

But if you are just going to run away or watch in horror because you don’t want this to be you, or you think I am plucky, you are missing everything. You are missing a once in a lifetime experience because….what…someone was mean to you in junior high? Guess what, someone was mean to ALL of us in Junior High (unless you were THAT person – in which case, I’m glad you’ve changed). You can’t wall yourself off AND care openly.

I am a meteor; I am burning. Now, you can either draw the drapes in case the light bothers you, or you can watch, maybe with a loved one. You can be part of this, you have a choice, I don’t. Yes, it seems that I am burning out, literally, parts of me going until I simply stop and drop to earth. This post, is part of my fire. Every big post literally sucks something out of me. I can’t recover. So if you aren’t part of this, one of those who comfort, who are consistant, who help me learn fun, who keep me fighting, even if that is by defending my ability to continue, then watch and wonder.

I burn at both ends, I will not last the night; but ah my foes, and oh my friends; I give a lovely light.