It is still not warm in San Francisco. May has gone but the May Grey remains. I need some heat on my bones to wake me up a little. I spend so much time asleep because of the autoimmune disease, but there is not much I can do about it. Days surrounding my medicine-days can be pretty good. I feel almost normal for a while, and that is marvelous. My hands vary between feeling unusable, leaving me unable to pick up or hold anything, and feeling better. I am in pain most of the time. The burning pain in my legs is uncomfortable, but it can be reduced by the medicine at least for a while. When I do wake up, I have to shift around to try and get comfortable, adjust my body to reduce the pain so I can sleep longer. I don’t so much toss and turn around as gingerly try and shift agonizing arthritic joints into a more peaceful configuration, holding my shoulder into my body to see if I can roll onto my back. I can’t sleep on my back, but I have to try, as it causes the least pain in the long run.
The Boy came up to me late last night and put his face on mine, hugging me gently. I am making a huge effort to live because I am still needed. I also love life. That is the Big Strange, me who has had a life that has been very tough, that ultimately has made me very unwell (survivors of extreme domestic violence have rates of serious disease, especially autoimmune disease much higher than their non-abused female peers), realizing that I love life! I would not have fought so hard to live it and survive it if I didn’t, I suppose, so it should not have come as such a revelation to me. I didn’t just survive for my child. I didn’t just survive out of spite. I didn’t do it to piss off Mr. Charming who still refuses to divorce me. I did it, at least partly because I held on to the possibility that there were better times ahead, that I might look out of a window and not see Tokyo where I was trapped being tortured, but instead a different landscape where I would be free and happy and content.
I found that landscape on the road in the 26 foot class C camper called Beastie, driving across America with my family and my friend-who-became-family for a while. I found it sitting by Minnesotan lakes. I found it sitting stoned in Washington State, in a campground in the summer, with the sunlight glittering off the water and the beauty of the trees and the sky and the campfires and the fact that for a while I had everybody I loved with me and they all loved me back in return. It was a jewel of a time. I had nothing, we didn’t have enough money for camping every day, so lived in parking lots and rest areas. We barely had enough so we could eat. My friend would line up outside the Salvation Army for food boxes, and I would clean hotel rooms for a little cash. We had nothing but each other, and yes, it was hard. The roof leaked, the tents got sweaty, the insects bit and the heat was unbearable at the height of summer in a tin can… but I was free, and I was mostly very happy indeed. I had hope. I had love. I had my people around me. I had music and a guitar to play. Oh my guitar! My beautiful Martin, gone now, but never forgotten! I had hands that worked and I knew how to make a mean campfire smore. My children were safer than they had ever been. We huddled up like people have always huddled up, round fires, telling stories and playing music to each other. Singing. Laughing. Dancing. Loving. Free.
I look out the window now, and what do I see? I see Freedom, my friends! Freedom! My body is giving up on me in various alarming ways. This connective tissue disease is not good and I hate to whisper it, but it will probably kill me in the end if the doctors don’t get there first. The doctors who acknowledged I was in pain, provable, horrible pain and then prescribe me a heavy duty NSAID which should not be given to people with bleeding issues, and can cause sudden heart attack and stroke in people not at risk from those conditions. There are things they can give for pain that will not kill you like that, not if you behave and are sensible, but oh no, we can’t possibly be having people feeling comfortable, can we! They might enjoy it! Bah humbug! I am glad I refused more chemo, which I was to take weekly for the rest of my life, not as cure but as management, I’m glad I refused another day of prednisone and stopped it while I could do so. I am glad I said no to potentially eyesight-ruining Plaquenil. I would rather be in pain, I would rather hurt than be made to feel worse and be killed yet another route by the ‘meds’ they gave me. As usual, I will go my own way, but my gosh, does it physically hurt…
At least there is my alternative medicine. I am going full hippy on this disease. Weed and a rather unusual medication program. I never thought it would end up this way, but back to freedom and what I see out my window today. I see a cold day, I see suffering, but I see a place that I love to be. How I adore San Francisco. I have never been happier anywhere in my life. I love this City, for all her myriad faults. The media is determined to spin a narrative that we are the new “Detroit” well this old “Detroit” is here to say, I live here, and yes, it has problems. The way it is run can be detrimental to those suffering most, and fail to address the real needs of the City as a whole, but the situation is so fragile and so complicated, but what remains at the heart of this City is a whole lot of heart and compassion. I hope not to see any more knee-jerk billionaire-pleasing actions like bringing in the National Guard and criminalizing junkies, or scapegoating undocumented people. That is not what this City is about. I believe we can turn this round. I actually believe we can find a way through the mess if we just use our hearts as well as our eyes. The suffering of San Francisco, of which I was and am one, need compassion and empathy.
I look out my window to early 20th century buildings, with ornate but crumbling façades. I look out to at least a few ‘nodders’ doing the fentanyl-fold. I look out to shouters and screamers and partiers and dreamers. I look out to trees and to walkers, some on the wild side, some on the sensible side, some of them crossing this way and that, wearing shorts and heavy jackets, the San Franciscan uniform born of our strange weather of four seasons in one day. It is not perfect, but I am happy. I was shown mercy, given medical care, and perhaps one day it will be worth taking, but for now, I think it will kill me quicker, and I don’t want that.
The sirens on the horizon shout out another crisis being averted or resolved. I almost recognize their patterns. I am happy to be part of the City, and find my last fragments of blissful freedom here amongst friends and family.
It is fitting that I found how to forgive, how to love, how to embrace peace and clarity, not wearing Sweet Jane’s leather vest, but with a flower in my short hair and a smile on my face. Smiling should never be against the law, but since when I have I had much use for that?