I have a finite amount of energy and health I can access on a daily basis. A trip to the shops costs me a couple of hours with my feet up. Going out for the day with my Boy costs an equal amount of time in bed. Going out to Dead & Co? I am still recovering days later. This disease has reduced my range. I have good days and bad days, sometimes when I have to take my medicine, I feel better, but dazed and that also means I am not very strong on my feet. I walk using a cane. I do have a nicer cane now, with a good wrist strap so I don’t lose grip on it, and that helps me not lose my balance and get around. I am very unsteady on my feet. My legs feel as if boiling water is being poured down them. The joints fill with heat, and the nerves misfire. My knees lock and fail to hold me up sometimes. I suffer from absolute exhaustion. More alarmingly sometimes I cough up mouthfuls of blood. It rises up into my mouth as I cough, bright red and fresh, and I stand over the sink spitting until it calms down. I know I need to get control over the disease when this happens. It happened again the day after the show, and upset me terribly. I have better days when the disease is not flaring up, and to be frank I am doing much better than I should be.
I am having a poem published in a print book anthology, which was is my good news from the day. It has not been published here at The Paltry Sum, and represents a lot of work and time that I have spent learning the craft of the poet. I am a poet. I can say it now. It does not please me or not please me. It simply is. I think I would be happier if I had more energy to spend on happiness.
I am having to up my doses. I see the rheumatologist again in a few days time. No doubt they will try and put me on steroids, chemotherapy and Plaquenil again. I will not do it. I would be dead faster if I did, the drugs allow me no quality of life at all.
San Francisco made sure I had healthcare. I am also being helped out long term with housing, hopefully that will be accessible if my mobility decreases further and I need more help than a stick. The mere concept of a walker or a wheelchair makes me sit and cry. I survived so much. I do not deserve this fate, but nevertheless, perhaps it is because I survived so much for so long that I am so unwell. Autoimmune disease is more prevalent in women who have survived domestic violence and is linked to high cortisol levels over a long period of time, but the fact remains that a person has to have that genetic quirk to develop it in the first place, and unfortunately I do.
The doctors will tell me to have ‘no stress’. That simply is not possible! How is it possible to make my life perfect so I am not stressed at all? I can meditate, I can take it easy, I can baby myself in every way, but I am still essentially constantly in danger. Unless someone marches in, makes me and my Boy not undocumented, permanently housed and I somehow always have enough money to keep us going then I am going to live a life of extreme stress. I survived an extraordinarily dangerous and devastating group of experiences and protected my family at the cost of my own body. I was beaten up for not just years, but decades. I survived rape. I survived broken bones. I survived what I would describe as multiple attempts to murder me, particularly the time when my husband smashed all the floor to ceiling windows around me, and I had to escape the house shoeless, with my children and run and hide while he tried to find me. When I returned later that night I came back to find police, ambulances, and the fire service with flashing lights and many service providers rushing around trying to find me and the children and deal with my husband. He did not go to jail. I was left alone with him in the apartment with the children after we turned up again.
That night of the broken glass I stopped my husband from jumping off the balcony and dragging me with him. When I broke free he was still intent on jumping, him leaning over the balcony face forwards, one leg over the rails. I talked him down. Soothed him. He had come home drunk and murderous, we had had no fight or argument, he just came home and went psycho, as he often did, taking out his upset and frustrations on me. I have been asked why I did not let him jump, and the answer is, I suppose, that I didn’t want his father, whom I loved more dearly than my own, to be devastated. I didn’t want the children to hate me because I let their dad jump, even if he was abusive, living with a parent’s suicide cannot ever possibly be easy. I did it because it was the right thing to do, and it almost killed me. If just one of those massive shards of glass had hit me in the neck or something along those lines, if he had dragged me over with him, if I had not managed to barge past him and get to the front door, if I h ad stopped to put my shoes on and put the children’s shoes on instead of carrying them and running barefoot, if I had taken the elevator not run down the stairs and out into the street, if I had not hidden and kept running, if the children had not co-operated with me… I would not be writing here, I would be dead. He was in the mode where it seemed to me as if he might annihilate the entire family. When I talked him down he turned on me and tried to kill me. I will never forget running down the street with the children and hiding behind a pile of tires outside a gas station garage and him walking by on the warpath. It is not surprising perhaps that I am now unwell with an autoimmune disease, but only that I am relatively sane all things considering, and that I managed to save as much as I could.
Now I am here I am broadly safe in the physical day-to-day sense of the term. San Francisco has got a little edgy and my block has deteriorated quite badly over the last year or so, but I love the City and I love living here. To be frank I don’t think I would ever want to live anywhere else. Home is not always perfect, but being perfect is not what makes it home.
I have wandered my entire life from the age of seventeen until now, in middle age and wondering where I used up all the time. Sometimes I think the only way I cope is to block out most of the memories and live in the moment. I am only human and living in constant reminder of everything I loved and lost is way too much for me to handle on a daily basis. Instead I bring out my past only to play when I write. I write to remember and I write to exorcise my demons. I write to remind myself of who I am, and where I have come from and where I have been. I have divorced myself from my self and it is a mostly amicable division, with visitation rights but a high price to keep the broken-down relationship civil and loving.
The woman that I am sometimes hates the girl that I once was. I was cocky and all swagger. I didn’t believe I could die, until the point where I tussled with the Fates on a daily basis trying to keep everyone alive and was convinced that staying alive was a tall order. I dig up old mistakes, old pains, old struggles and hate myself for the time and energy I wasted when I thought that both were infinite. Both time and energy are running through my fingers like sand in a hole. I feel as if my soul is an archeological dig, and I go disturbing the dead and the gone, the past and the possible futures that I threw away or let slip from my fingers. I rummage through time and space and things I cannot forget merely suppress for a while, and hold them up for inspection. Some things are just too precious to sully with my words, but time is short and it is time to chronicle all that I have loved and all that I have lost. There are things and people that I will not talk about directly. It simply hurts too much to do so. It is too hot to touch directly. It is still a nuclear-white-hot wound that will never heal. For what it is worth, I did my best. No, I am not perfect, but I didn’t bail and I didn’t hurt anyone and from the moment I became a mother I put myself last always. I had to cope with a lot of trauma, and as such I sometimes needed help to numb that which was too much for me to bear in that terrible moment of the present that has now past. So, yes, I drank. I did some drugs, but everyone was well cared for and I got a handle on it all as fast as was humanly possible. I was never degenerate, I was never neglectful, I simply did the best I could with the strength I had.
You see, despite it all, I am just a five foot tall woman. Somewhere between 95 and 120 pounds in my adult life depending on how close I was to having had babies. I was never a big or a physically strong woman. I had a wicked tongue and could talk myself out of trouble (and into it), I was feisty and furious at times, but all that I had going for me was my ability to withstand pain and suffering and shame. I pushed my body beyond the limits it was able to take, and now here we are! Here we are…I loved and I love and I do so with every fiber of my being, and I do not bail. I do not leave those I love behind, however much it costs me. The problem is I think I proved to myself that love is not enough. I don’t think my love was faulty, but it will only move mountains and not knock them down entirely. I am only human after all.
The medication is working to some extent. I am trying to get onto a trial which I believe will help me much more. Perhaps I can write some of this out and that will help relieve the pressure in my soul. I will never forgive myself for failing to the extent I did, even if doing any better would have required me to be a lot of things I am not and cannot be. It is so easy for others who have not walked in my shoes to judge me. It is so easy for them to say what they would have and not have done. I did what I did and to be frank, I didn’t do too bad, kids.
This old world needs a lot more empathy. We have lost it at the same time we gained information and connectivity. The world moves more as a unit now we have the ability to connect with each other remotely. It is both inevitable and a blessing and also something that the world was not ready for. The overwhelming shift of the world is not towards acceptance and kindness but rather that sick kick of feeling ‘better than’, ‘superior to’ and ‘correct’, whilst others who are not like us, not of our philosophy or personality type or whatever differences there may be are painted as ‘bad’. Humans are essentially tribal, we like moving as a group and being accepted by the herd. I was never much of a herd animal. That is not to say that there are not wonderful connections to also be made, and that the world is not new and amazing after all, but the good ones are few and far between. That is not to say we can’t make a difference. My darling Ruthie saved my life and saved my Boy too. I will always be beyond grateful, and have a heart full of love for her. She proves that exception to the rule, rule.
So my gears might be grinding and my body in a state of disarray, but I am doing my best to soldier on and find a path to whatever future awaits me. I am sorry I got unwell. I am sad. I am beyond distraught that I might not be around to continue to protect and serve and guide and love. I am needed, but perhaps I will be able to hold on until I am not needed any more. I hope so.
~D
❤️💔
🌹🌹🌹💖
You are always a lady to me!
That is very sweet. I am not very girly at all, but I try to have a bit of class…sometimes!