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.
1 day ago