Found an article he wrote for The Lancet Haematology medical journal recently, November 2020.
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Life is a PAINting
by Hertz Nazaire
Sharing with someone what the experience of sickle cell crisis feels like is difficult. What is that moment when pain is at its peak? How do you explain how much impact pain truly has on your life? You would think that being sick so often, it would be an easier task for me to know exactly how to explain this feeling. I did not find my way to communicate pain as a child. I was fairly quiet on the subject and depended on my mother to advocate for me when a crisis arose. I did find my way though. Pain is not that simple to explain, it is an overwhelming experience that has many long-lasting effects on one's life experience. If this experience repeats as often as it does when you have sickle cell disease, finding a normal, peaceful path through life becomes a great challenge. Unfortunately, sickle cell disease is just the kind of disease that allows for hundreds of such experiences. I ended up using art to share my pain and help others understand this experience. Art is more than just words; it captures and says much more.
I do not remember the many hundreds of times I laid in a hospital bed fighting a war against the pain that my body felt at the time. I try to forget those moments. Suffering is never a good memory for the mind to keep around. I battle with those moments; I want to forget but fragments linger into post-traumatic stress. Sickle cell pain is such a strong and wicked level of suffering. What I do remember about my hospital stays are the shapes, colours, and shadows around me, all of which end up in my work. I remember the shades of blue and green worn by my care providers and the shapes and patterns on my own hospital gown. This is where my mind goes to escape the traumatic experiences of living with sickle cell disease. I depend on these little artful escapes to keep my mind aware of myself in the foggy opioid induced dream.
I became a painter not because I was gifted or talented, but because those colours and shapes provided me with an escape from suffering and dwelling in the pain. Art has made my life a smoother journey through the pain of sickle cell disease. I was always aware of colours and shapes of my surroundings, my mind was always curious and I wanted to draw and remember lines and shapes. Several questions linger through my mind. How are things connected and how am I connected to them in relation? Could science prove one day that I have suffered less than others because I loved to use those colours and shapes as an escape from my pain? It is not that I have not been damaged by living through such painful experiences. I would not be fighting a battle with depression and anxiety if I had not felt the painful effects of my disease. I have struggled, but I was always aware that there was a place I could go and feel another layer of life, a place where I could find a fragment of peace in a storm of pain.
Going back to my hospital gown, those little shapes, how they are structured, what they are saying to me. How am I feeling while I observe them, am I a little dizzy, do those shapes wiggle and shake, do they pulse with my pain? I become mindful of what my body is feeling, but I am somewhere else beyond my body meditating on how these little shapes came together on this fabric. I wonder who designed them and why. I do the same with the solid colours around me, the eggshell whites of the walls that surround me, the shapes and the shadows move. The pain is still there, it is still something to be very concerned about, a sickle cell crisis, a cycle of events that keeps on repeating. Anything can go horribly wrong during these painful crisis events. Doctors and nurses think I am here for the drugs. They think it helps the pain. The truth is, I hate these drugs, they are not really pain killers. I would call them mind killers to be more accurate. Is the only way to fight my pain to kill my awareness, my curiosity, my intelligence, or to shut down my brain so it can no longer process those pain signals from the nerve endings my body is sending it? It is a struggle, sometimes I am in pain but I stubbornly delay taking opioids for as long as I can stand the suffering. Those who care about me see it as a needless torture and think I should just go into that foggy emptiness and wait until the pain crisis is over. They do not understand what I am giving up. They do not understand that I die a little each time I forsake my mind, my curiosity, and my awareness to escape my sickle cell pain.
It is not that I think the drugs are not helpful. In fact, pain management is a gift to someone like me. The drugs we seek to help us through a crisis are the only thing left for us when the pain is at a level higher than anything imaginable that the human body could feel. During the worst of these times, when I enter what I call the nothingness, I am still aware of the fact that I took something that is blocking most of a really bad experience. In these times, I am not really alive anymore, I am not experiencing life, and everything is on hold until the medication wears off and a tidal wave of pain overcomes my body all over again. Then comes the next dose of medication and the cycle repeats. This is the lucky experience if you are at a good hospital getting great care; however, the truth is for most of us, most of the time, pain is not managed properly, and all you have is a long silent suffering. These bad times are when my mind seeks out those shapes and colours the most. Those are the desperate moments where the little shapes on my hospital gown become a world of curiosity and escape—the art that helps me to cope. That is what the experience of being in a sickle cell crisis feels like for me; a storm of pain, followed by seeking help and entering the nothingness in an opioid haze. When the effect of the drugs wears off, the storm comes crashing back. You cannot fear the storm too much, because if you do, you will want to live your whole life in that nothingness. A life without your curiosity, awareness, or mindfulness.
Art has helped me communicate my pain in a way I could not with words alone. I only have my experiences to share; there is something very human about the awareness of art.
Art has also helped me find my curious nature, intelligence, and awareness after the nothingness of my pain medication has faded away. Art can help you find who you are after that nothingness is left behind. I don't think you have to be an artist for art to be helpful through a life of chronic pain. You just have to be mindful and aware of shapes, colours, and connections. A few years ago, I published Finding Your Colors, a series of colouring books for adults to help them through the anxiety and depression I deal with every day because of the memory that lingers from painful experiences. You don't have to know how to draw to colour in some shapes. That is why I find colouring books to be a helpful tool.
Life is full of art and wonderful experiences that come from seeing, creating, or just being mindful that you are already part of it. I think art can help anyone connect to another layer of life, it is a journey, but it does not always have to be full of pain or a haze of nothingness. Your life is a painting in progress, what it says to the world around you, is all up to you.
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Smiles and Cries
. He's one of the original GAF posters, and he was still active recently, keeping up our SpaceX updates thread as well as participating in other discussions. I just noticed that he had stopped posting suddenly back in October. 
