Linda and Cheryl took me out to see squirrels. Or rather for the squirrels to see me. Little did either of us (squirrels and I) know that the weather would soon turn pretty horrid. So we didn’t realize this was the golden hour, and I enjoyed wearing my new corset and my new headband. After 18 months of not buying clothes, and shrinking in size we have sold some clothes and right now I am down to three underwear and 1 pair of jeans. Luckily, tops can be oversized. So I am looking forward to surviving to the post Xmas sales! I need the Canadian dollar to increase so there are thong panties in my future (Hey, I may be dying, but I’m going out in style!).
Linda worked with me today to try and create an Amazon wish-list. It was our day to use up old gifts. She had a gift for a pedicure at the most posh place in town and off she went. I stayed and realized that many people would not feel comfortable buying gender bending or yuri (girl/girl) love manga so I did not put them on the wish list but used up an old Amazon.ca gift certificate. Afterward, we worked for five hour and a partial Amazon.com list which we will add to, and make one for Amazon.uk, and sources for the best rubber stamps we use on the Postcard Project (places that take Paypal!). Certain stamp companies, like the Old Island Stamp Company (available only in Canada, will set that up later!), and Stamp Oasis are high quality and give the best images. For someone with limited strength, with varying hand strength and poor hand control, getting it right easily matters. Also because we have all types of paper from the high gloss of some Japanese postcards, to thick paper stock. Linda made a blog post about her day, with the links to all the places we sourced.
The whole thing has a feeling of ‘too organized, too late’ to me, but it helps me stay focused. And for people who feel helpless, maybe it can help them and us, knowing that for a few dollars they can follow the gift list and give Linda an afternoon of mindless reading of a romance (she likes the ones with strong women).
I apologize if I upset you when I said things in the comments section of Thin that offended you. This is the truth; I look very sick. I was prepared to deal with talking about it, about death, and pain. I found out that people cared about me, and like me, seeing Linda or Cheryl sick, wanted to cheer me up or make some suggestions, any suggestions. Because they weren’t ready to talk about how sick I was. While someone saying, "You look like you have leukemia!” wouldn’t have offended me, people talking about my smile made me think they were deliberately hurting me. I now understand that means they care, and are scared. And I understand that, I get scared…a lot. I’d like to not be scared for a while. I understand your comments now, and I hope you can understand mine and we both forgive each other.
Tomorrow I have to be up for a series of physically brutal medical tests. The first one, if successful, will induce a grand mal seizure. They will keep trying for over an hour. Fun. After that I get electricity run through me. This affects my hearts ability to beat. It shocks my whole system, I can’t get my hand to hit the light switch for love or money. It will be about five hours in all and I don’t know how to do it. But I have learned this secret from the women who have gone before me, who even now, like Frida Writes and Queen Slug (please drop both a line?) who are in the medicals, or the blues, or the pit. You go on. You do your best, and when it is over, then you drop. Where does the energy come? To dance our best, even with errors, with mistakes, to force ourselves physically through? I don’t know. I just know that come seven hours I will be on that table and they will begin. And then I will be driven elsewhere and they had to get a medical note saying I would not die for this, and it will begin. This is my dance.
When I was a child, I thought as a child. And when I grew up I believed in things like “Doing what is best for all or the company is better than being a hypocrite and lying to suck up.” And I thought I would be rewarded. I said to myself, “I did things right.” And somewhere at the end of doing things ‘right’, I had my book being published, I had finished all my degrees, and I had a little time and I had sold my business and I decided to do something for me. Epee: I chose pain, I chose joy, I chose frustration and little moments of fury, mostly at myself for falling for an epee move I should have seen coming. I did something for me. And Linda supported me, what a gift that was. I had originally thought to go into car racing but then I found that going around the track again and again and again was boring to me, while facing different women, different body language, different tricks, was endlessly fascinating.
Then I fell down. And what I didn’t realize was that the spring and summer of that year, even with 22 appointments in June were the ‘good days.’ Because I still had Linda and I still options, and the flexibility of a body with reserves. We don’t understand what we have until it is taken away. We don’t understand what is worth fighting for until we have to CHOOSE to fight for it. Now, no longer the protestor, the advocate, the one to stand UP against bullies, I have a choice to make. What DO I fight for? What is worth fighting for?
It isn’t enough for me to be alive. It isn’t enough that Linda supports me, and I support her. If I WANT quality of life with her, I need to fight for it. This quality of life with Linda is what I want. And to find it and keep it I will fight my greatest enemy, MYSELF, to have it. Cheryl noted that I do everything with a frenzied urgency, I know now, I feel it in my heart, in each beat, in the ache of my bones, in the blood that I cough up or which drips out every day. I “must” do more emails, mail more postcard, prepare more things, do more, write more, oppose more discrimination……. STOP!
If I want joy, if I want moments of happiness, they are not, going to just arrive. If I want to be joyous and share that with Linda then I need to plan, to take pain meds, to rest, to relax, to FIGHT for that. Only then will this emerge. And it will. I will smile a real smile because I am in the moment and I have medicated my heart and everything, I have taken enough pain meds, and STOPPED myself from thinking about all of it to be in the moment, to be spontaneous.
There are some things that cannot be ignored. This for me is autumn, the leaves are falling. Do you understand? I am trying to ignore that. So I have a new plan, it says that I will live until May 09. I will go to Hawaii. I barely survived this summer with four air conditioners. I don’t know how to survive another. I don’t know what can be done to stabilize things. But I will live until May. I will ask us all to go to cemeteries for my birthday. I used to live a life where I said to myself, “Nothing is impossible!” because I was the one ready to bear the cost. I lived my entire life that way. I carried my cross literally. Now, I have the quality of life, I have life itself because of others. When I have my portable oxygen concentrator comes I know it will be because others have helped me, have made it so I can breathe. I still believe “Nothing is impossible” because for one thing, just like I didn’t know what a disabled girl in a wheelchair should act like (except that short skirts and corsets were going to be involved!), I don’t know what a late stage patient is supposed to act like. And I am going to get out of here, every sunny day I can. I am going to convince or con Cheryl and Linda to help me to do things that are maybe more than a little bit stupid. And yes, if I get some good deals, I will get them to prop me up and take pictures of me in my bikini underwear again. Before we could see the squirrels, Linda was getting me ready to go outside. She had helped me get my new corset on and I was there propped up so I shouted to Cheryl, “Take a picture, this is what I want to show them!” (I was completely commando! It was the corset and…well, that’s it – but it was a great corset – and a great MONEY shot!). She declined.
I was born to Try.
Will I be able to put down my cross? No, probably not in time, in the same ways the cuts on my arms will not heal, I will self harm again. I am a product of my cult, my family, my sexual abuse, my rape, my torture, and my determination to escape these. Only I sort of brought them along with me. I hope that my last days are spent as open to being hurt, truly open as I have tried to live. Because this is not a disaster, this is a gift. Where is your hope? I know that humans are ugly inside beyond belief, I know the things they do to each other and yet I believe we are better than this. I believe, not that God will change us, but that we will change us. Maybe a strange message for Xmas season but is it true most people can’t care if there isn’t tinsel and music playing to remind them? I think not. I want my last expression to be a smile, I want to die AFTER I finished sending out that week’s postcards.
This world will be better, and I will not live in vain. Dying is inevitable for all of us, but how do we live? I want to fight for how I live. Live so that my hours have meaning. Live, some days, by simply going on, by doing the dance as best as I can. And for those who only are motivated by not what can be; the impossible dream; but by what might befall them. Do you think that losing a body will stop me? This is EFM part II, and like Job said, “I believe my redeemer cometh” (a redeemer was the person who would set things right). Look upon this and remember. See it in your dreams. If you fight, if you care about people, about others, then you have nothing to be afraid of. But if you can only be motivated by fear, then look into those eyes, I am the reaper, the eternal warrior and you shall be redeemed. You might not like it, but you WILL be redeemed. Choose the easy option. Give a damn. Then you can wish me well when you hear a rustling of leaves in the wind, passing by you.
5 hours ago