Pain, Autoimmune Disease and The Scary possibility of Not Caring

I have been battling the flu whilst working harder than I have since I was first diagnosed with a serious incurable disease. My legs give way, I am in constant pain and on top of that have been coughing up a lung for the past week. I can barely walk and have fallen over repeatedly as the autoimmune arthritis and nerve damage take their toll. My body, fighting against the flu, is also fighting against itself. I have an unruly immune system and right now it is flailing around wildly running like wildfire through healthy tissue and leaving me on the floor in tears.

My fingers feel as if the joints have large vicious elastic bands at the joints. They hurt all the time and it takes hours for them to warm up in the morning so I can use them. I drop cups and bags. I have no strength left in hands which did so much. The joints are swollen and ugly. I used to like my hands, but now they are gnarled and broken. The pain keeps me up at night and sends me into fits of dismay. Don’t drink. No pain pills from the doctors who push acupuncture like I’m dumb enough to believe it works enough for it to fool my brain and reduce the pain. No drugs. No nothing. Just the sting of cold sobriety alongside an excruciating disease which those I love can’t face that I have.

My friends downplay my suffering. The kid veers between seeing me hurting and falling and that making him cry, and a benign denial that I am not going to be around forever. It’s ok. At this point I will not stop doing things I love. I will walk in the park. I will watch the ships come in. I will write and laugh and dance using my stick like some unholy love child of Fred Astaire and Quasimodo. I will not let it stop me being me, even if I do have to live alongside pain.

I have tactics for dealing with being unwell. Mostly I ignore it. I slap lidocaine patches on hips that feel as if someone has dug a knife into the joint, and reconcile myself to having to use a stick around the house. Sometimes I end up on the floor because everything gives way and I lay there hoping the Boy does not find me before I am able to move again. Going outside can be nerve-wracking. I cannot fall over outside. Walking down California in the early afternoon, a few days ago I tried to walk past a family who had paused on the sidewalk. The man stuck his leg out and swiped my stick from under me, sending me toppling. I had done nothing, and it was not an accident. This man laughed loudly, his wife joining in while two nonplussed children looked on smiling. I asked him what on earth was he thinking. He continued to laugh like some sick hyena with a bad attitude. I despair of humanity.

Perhaps there is karma. Maybe there is justice. I don’t see it though. All I see are people who are barely people inside.

I simply push through the pain and this terrible flu and write. I have been working on a few big projects. Time feels short with so much left to do. I have become this strange being who is finally aware of time, and I don’t like what I see.

I love life. I want to live forever. I want to carry on living and loving and laughing and caring and writing about everything that is good…and the things which are not. I want to choke up words without worrying the mob will come baying for my blood. I have people I need to make amends with…and some I need to tell that I will never, ever forgive them. There are things which must be said, and I can’t leave unsaid yet I fear the telling. I have to clear some bad history from my childhood. I let too many people off the hook. They should look out…I do not feel like being kind. All I have is my words and I will use them like weapons.

I care. I have always cared. I care too deeply, that is my problem and my secret strength. I care about you. I don’t know you, but I care. I care about my friends…about the homeless guy that stands outside the abandoned cinema in my new neighborhood. But I have found my wider care slipping. I love and I love my friends and family absolutely….but the Big Bad World . . . in the words of Dylan, “I used to care…but things have changed.” I am dangerously close to not giving a fuck. I am out of here sooner rather than later, anyway, unless some miracle finds a cure for the incurable.

I fall on my words..my sword..I impale myself here. The final act is mine at my own bidding. I am finally free of giving the last fuck I had left to give. Pain will get you there in the end, in whatever form it finally takes. I look at myself in the mirror. Reflected back at me is someone I do not want to know. She doesn’t have long thick almost black hair and broad cheekbones. She is all angles and lines and her hair is so short it stands up on end with nothing that can be done to fix it. Ugly grey all over in stripes. I am losing my color. I am turning sepia. I am fading into the past of what used to be and what is now rapidly losing its flavor and texture. I am taking my place in the photo, staring out from a world that used to exist, where phrases like ‘never again’ meant something real and I believed them to be true. Now all I see is ugliness and I am part of it.

My hands were conquered over a year ago. My knees fell shortly after. My back is promising to crumble as soon as it can work out a way to stop me from preventing its downfall. My muscles are wasting away. I used to be a workhorse, I used to carry the weight of the world on my shoulders and laugh at the heaviness of it. The only weight that was ever worth it was that of my son. He was the only weight worth carrying and the only prize I have dragged out with me from the mire of the past. I should have raised armies, I should have raised broods! Lady McBeth was told by her husband to ‘raise men children only’ and I am her mirror. I can can summon up some of her inhuman unfeeling strength I might get to live and love and write a while longer, but the power of love and kindness can only carry a soul so long. I need to re-find my fire!

There is no sea that can wash these hands of the blood that has been drained out of me over the years. There is no outlet or overspill for the suffering. Now is the time of reckoning and to be frank, my dears…I don’t have the strength or time left to risk not giving a damn.