I am an artist that must lie in bed, horizontally, 20 hours of every single day.
It wasn’t always like this.
I had 37 years in this life where my body was functioning as a normative bodied human being and eventually a dance-artist.
Perhaps this length of time as a normative bodied person and art maker, makes being a disabled artist harder and gives me more grief of life lost, or perhaps I am just grateful for having had that lived experience before being chronically ill became a full-time job, and the artmaking became what gave me even more joy than ever before.
What are my superpowers as a disability artist? What has being ill granted me of development and skills otherwise not familiar? How can, and will, I contribute to society, other artists, the world at large and create art that are authentic and strong from my horizontal perspective? You are welcome to join in on the Forum: “What is resilience in the post-covid pandemic for the artist? » after my performance of “Please Body Follow” during the MAP festival, Melaka in Malaysia 25th of August this year. (Press on red text for for more details.)
This sentence is dwelling in my mind, pondering, roaming about, not removing itself from the top of my mind. I heard the sentence as I was observing Tony Yaps digital workshop. I wrote it down immediately and I saved the document on my laptop titled with the same sentence, so as to not forget it.
Becoming, always becoming, always being, a new moment always coming. Me arriving into becoming. Memories meeting the moment of now, is exhilarating. The moment the memory meets the conscious mind is a new becoming. The memory stays with the body as it leaves the mind. The body never forgets. Yet there are new memories in the making and in the becoming. And the bodys library of memories makes the becomings more exciting than ever before. How exhilarating to be alive to experience a brand new day.
Resilience=the ability of a substance or object to spring back into shape; elasticity. (Googled explanation) I love the description of the elasticity, having to be elastic to be get back into shape. Not dogma, control, force or discipline, but elasticity.
As my back and neck are not showing me any mercy with their signals of pain of late, I surrender into their message to me: I have fear in my body. Its not rational fear, it is a fear from past pain and judgement, not founded in my daily life. Ok, so I feel fear of being too sick to do certain things I set to do, living with ME. And I am attempting to connect the dots from my past to see if there are healing to be done that can contribute to betterment in my ME illness, even just a little.
Nevertheless I have to surrender to the fact that ME is an illness beyond my traumas, yet healing my traumas can only better my life. Elasticity of spirit, listening and letting my environment be my teachers about myself, requires courage to feel. Within that space of fear and vulnerability is growth. I am scared and I am thrilled= I am alive and resilient. I am growing.
As the heat of summer is emerging, my body is slowly smiling in respons. Not just the sides of my mouth, but every joint of my body is allowing for more impulses from the external world. I even got a sunburn on my face, something that has not happened since 2010 to my recollection. Why and how come? I have more sense of harmony, and feed on having deep conversations with people I cherish. I have learned through the pandemic to appreciate people on a different level. People I am in contact with are my teachers about myself, they keep me accountable and make me feel alive. Unfortunately I have flare ups of symptoms in respons to being in the sun, leading to stronger brain fog and a shorter blogpost this week. So now I am back in bed, my body still smiling spiritually as my body loves the warmer weather. The flare ups are a reminder to keep smiling whilst still dancing at a snails pace; slowly. Accepting the ME illness limitations and insisting on enjoying life as it is.
My dreams during the night serves me with wisdom if I am willing to listen: I am at a green huge centre court with a game of tennis and there are hundreds of audience members. I am standing far back, higher up in the crowd and a doctor is standing in front of me, facing me on a slightly lower level, shouting diagnoses at me. As he says the name of each diagnosis, the letters of the disease is being projected with a turquois light on to my face. I am standing like a rock with no expression on my face . My face is bigger than in reality. The turquois projection with letters of medical diagnoses are falling downwards on my face, landing on my neck as fading tattoos.
I am reflecting on what my dream world is telling me:
Getting a diagnosis can be a bullet of judgement that hits you hard and injures you deeply. Unless it is given with compassionate care and a cure towards healing what can be healed. Once diagnosis is not who one is. I am not my diagnosis. Its only value is if it can be given coupled with healing and care. Whether the diagnosis serves any value and doesnt just ad injury to a broken body is a mutual responsibility between health practitioner and patient. I am not sure in my life how mutual this responsibility has been taken. I can only speak for my own part and I know I truly am doing my best to heal from the various diagnoses put on my being. Just the phrasing of that last sentence tells me something about my experience of being given a diagnoses, let alone live with chronic illness. Yet I find growth in my being through being awakened to appreciating the little moments in life. Living with illness I feel is what in itself has awakened appreciation within. Because I am willing to listen and determined to appreciate.
In August, I and my partner are going to the MAP festival in Melaka, Malaysia. Its my first time visiting Malaysia since Rimbun Dahan Arts Centre were so kind to host me for an arts residency in 2010. Going abroad has been too much for my ill body for a decade. After the pandemic has loosened its grip on the world; I will finally take the journey to share and consume art in a country I came to love. I strongly feel its the right time. There is a hesitancy in my enthusiasm, because it is hard to predict how my body will respond to the journey. At the festival I will share an art work that is part of the #millionsmissing campaign. The journey will contribute creatively to the slow process of further developing artwork in my #millionsmissing series.
Photo: Per Rutledal with Kristine Nilsen Oma “Blending in” with hidden places of Bergen in the slow process of developing part 2 of Karantena #millionsmissing with the support of Norwegian Arts Council and Bergen Municipality. I like the spiral that appears in the picture through my hips and back, and the arms are like claws in response to the spiral. The brick wall is angled in the frame as to fall down on me, and my worried facial expression is truly stemming from a concern of how the body will respond to me moving about after 6 months largely in bed due to ME/CFS
“You are a slow learner” was the sharp words from one of my respected choreography teachers long time ago. The sentence has stuck itself in my memory, and it used to be a memory of shame. The last couple of years the memory has resurfaced time and again, and I realize that if this teacher was correct in her perception, then being a slow learner was a compliment of a quality. The teacher certainly did not regard it as a positive quality, but I do. Now. I am not sure she was correct though, I think she could have re framed her statement with “You are a thorough learner” and it would have been more accurate. My approach to life is to investigate wholly and fully what is in front of me. Hence it makes sense to me to be in slow production without too strict time frames, even though I have been forced into working like this because of my ME/CFS illness. I realize this is a difficult thing for normative bodies to understand, absorb, relate to, and thereof collaborate with. But I urge you as a reader of my blog to embrace the slow process with me. Slowly processing has the possibility of providing even more joy, thorough work and wonder. Its a wholeness thing, as suppose to partial, that allows for true realizations that potentially has life changing impact. I invite any potential collaborator to get in touch. I hear people say they dont have time or money to take their time in processing, for me its not an option not to do this; being thorough, go slow, listen to the needs of the body, put the work aside for a while, let the work evolve slowly, listen to inner voices meeting the outside influences and make what is possible and present when ready cooked. The chronic illness I live with has forced this way of working, living and being in the world. Perhaps the choreography teacher was giving me an omen of what was to come in my life; a life of truly crafting the choreography of a healthy life in art. Something like this…..something like that.
With experience comes a certain fear of habit. A habit can be repeated, justified and cover over any insecurity known or unknown. Having people to keep one real and accountable can be of great importance. Having gone to cognitive therapy for over 10 year in my 30s, trained me in the ability to verbally express myself. It also became a lethal weapon for any person that stepped on my toes. Having a verbal tool and awareness doesnt in and of itself equates value. Fortunately I have within an endless need for development and new knowledge. I am never better than my last work, my last conversation, my last anything. Certain pains in my body have a tendency to reappear, muscle knots in particular at the back of my shoulder blades in particular. They like to escape any attempt to stretch or massage them out, they want to stay put and keep bothering me. Its rare when coming into mature age to have people that appropriately challenges you enough to keep you growing. Improvising never lets me down; its a tool for self reflection, artistic sharing and creativity. For a long time now I have been unable to dance physically as my body has suffered a long period of PEM after last years monthly performances for #millionsmissing and moving to a new flat. This fact contributes to the knots behind my shoulder blades rusting. The cold spring has not been helping and of course I can lay it all on my chronic illness, yet I desire to own my shit. I desire to grow, contribute and be vitally dynamic every day within what is my capabilities. My life isnt over, how can I keep growing further? I sometimes allow myself to complain and entertain my triggers in safe spaces and relationships, yet I find that this doesnt do me or others any good, so whats the value of it? The answer is that I am human. And I want to own my shit and keep growing. Sometimes getting older is painful. And I am not referring to superficialities or vanity externally, but looking at ones past and realizing that certain stuff I need to change about myself. Certain behavior doesnt serve me anymore. The traits of sensitivity coupled with sincerity and compassion is what I aim for. I hope it will smoothen the knots behind my shoulder blades. As I realize that sensitivity, sincerity and compassion also applies towards myself as much as towards any other person. Now the real work starts preparing for Karantena part 2 to be presented in December of 2022, moving along in slow production. Perhaps this process is a little uglier, more raw, real and unpleasant. If my health allows I plan to start weekly blogs sharing from the process. I cherish your attention. Thank you.
The time is always right. Always. As I was stepping down on my kitchen floor this morning, starting to make my morning smoothie, there was a ´svoosh´ sound underneath one of my feet. Bubbles and water started popping out of the floorboard. As much as I can appreciate the interesting sound of the floorboard meeting my foot combined with the wonderfully cute ´svoosh´ the sound makes, I realize this is not a thing that enthuses my spirit that much. Some things in life are just a pain in the arse. All I can do, and everything I can do, is to ask: What do I like about this thing happening right now? Time is. I can always deal with time as it is. I create the time, I am part of the time, and I am determined to enjoy my time. I am challenged not to stress about the inconvenience of a leak in the kitchen. And I accept that I have to make choices in regards to timing. One of them is accepting that I am not on time with this months planned live performance as much as a leak in the kitchen never comes conveniently at anytime.
Photo: Per Rutledal with Kristine Nilsen Oma We found a bench close to a disability parking spot up in the mountain in Bergen. This bench is a go to whenever health allows. I havent been able to dance much for months. I managed to sit on a bench and lean back for the camera.
Being robbed ones physical ability to affect surroundings is a life that comes with grief. An active fighting spirit is of paramount importance; to never give up. I cant be a victim in my own life, yet I am a victim in my own life. An oxymoron if I ever understood what that word meant. I call it karmasucked. I cant change my karma of being severely chronically ill by force, will, healing or medicine. (Believe me: I have tried!). I cant affect my life in any other way than mastering the symptoms as they appear; trying out every possible strategy that can improve symptoms. I realize most people dont understand or believe this reality to be true. I am being sucker punched by life. I am living in an isolated existence that could look very much like the trauma response of freeze, and you bet I have analyzed this fact for what its worth. Yet what comes to mind again and again is that actually; I am a victim in this fight. It is not my fault and I didnt cause this illness to happen to me.
I insist to engage in every possibly work related challenge that I can muster to keep evolving, learning, growing and experience life. I go into dialogue whenever my body allows, I use every morning to read when I have the capability to concentrate, and I keep on keeping on the fight not to be a victim. I am being karmasucked, the word appeared clearly in one of my night dreams. I cant change my life, only alter my spirit, and keep on making wise choices. Its unfortunate, yet I am not discouraged. I am in acceptance of what is as it is and I exercise gratitude. I choose to believe this life challenge of mine is exactly what my spirit needs in order to build a solid self that cant be swayed by anything.