***warning*** Update written post-treatment 4 (treatments which are going swimmingly by the way), while experiencing chemo-brain fog (been compared to a week at Woodstock rolling around in all the drugs ever invented, jumping from cliffs and then experiencing the hangover and bone-pain)…soooo… Philosophical and touchy-feely hippy trippy content to be expected.
Here it goes…
First and foremost I hope everyone is safe and well. These are indeed curious, changing times. Thank you so much for all the heartfelt messages I’m receiving asking how I am.
Obviously, I am concerned about the state of the world – lives, the environment, the economy and the future of work and art. And I sincerely hope things will change for the better for everyone.
I understand that the ones who care about me are extra worried right now. To be honest though – personally, the coronavirus has not changed my life much. I am of course taking all the precautions and wearing the face mask given to me by my doctor, using antibac and practicing social distancing.
Of course, there is the added risk of catching the virus, but uncertainty and getting used to weird new rituals have been part of my everyday life for the past three years.
Welcome to the Upside Down
Since 2017 everything has been upside down; my lifestyle, my health, work situation, not to mention the cash flow and social life. And I’ve had to be extra careful about everything, from who I see, what I do, what I eat etc, because of a very compromised immune system and general condition.
Since mid 2017 I’ve cancelled trips, most plans, have not been on proper holidays, have spent most of the time at home alone, counting the days, reading books to understand more. Thinking about my life and the world, hoping and working towards improvement.
I’ve not been able to earn like before, my newly started Ltd has had to be on hold.
My investors pulled back, my board members never officially boarded and are still on hold.
NAV (the Norwegian social security) gave me the minimum support possible, (the amount put my income below the poverty limit in Norway). I had not yet registered the insurance for myself as an employee of my company, as I found out I was sick again only days after my company was formed.
It was too complicated for NAV to combine what I earned from my freelance film existence internationally, combined with the public soft money support I got for my projects up until then. One of the reasons I wanted to create my own company was exactly to keep everything under one roof and make the cash flow and production smoother. In a hectic film and freelance daily life, lots of funds went through other companies and came in various shapes and forms and services and exchanges.
It all was too much for NAV to comprehend. Even the social worker at the hospital in Norway gave up after calling them several times. I was put on the minimum. I realize that as a Norwegian I am after all lucky to have been born into a system that works well for most people. But I fully understand the frustrations and despair I am hearing from my friends and colleagues now.
House of cards
Since 2017 I’ve had to cancel or postpone most of my creative projects. I’ve had to say no to new exiting clients (and old) and I have not known what my future is going to be like. (Which we never actually fully do anyhow).
I’ve had to get the same heartbreaking message three times, a little bit more severe and crazy each time. In 2017 I thought I was healthy, but I was sick with stage one and needed 3 surgeries. In 2018 I thought I was cured, but got sick with stage 3 and needed chemo, radiation and even more severe surgeries. In 2019 I thought I was cured once and for all, but was told I was incurable and that I was dying.
Some have asked me, on the back of the fundraising for my treatment, if I had not created a backup plan? Did I not know I would at some point need this much money for treatment? Some have asked me why I didn’t have a financial plan, or why I suddenly need this or that.
As the whole world is experiencing right now, it is kind of hard to plan when what you had planned for, and everything you built, crashes together like a card house out of the blue.
When because of a sudden disease or event, your life changes overnight. When all bets are off, and you know that your every move could tip your scale in one or the other direction… but even then it’s all out of control.
Dreams and nightmares
The apartment I was planning to buy is still just a dream. Working every day is still just a dream. Creating a family and a home is still just a dream. Looking normal while naked is still just a dream. Living a “normal” life is still just a dream. Being healthy is still just a dream.
Corona has actually not changed any of this for me. This crazy inside out upside-down existence has been my reality for three years.
Now, actually, I’m better than ok, I’m doing good. Allow me to explain:
When I got diagnosed, I was very alone in my shock. I did not want to tell anyone. When I did surgery in London, I had not told many people. I was insistent on making it through myself, without telling people or asking for help. I moved from a beautiful place and fun life to an awful, cheap apartment in the outskirts and just laid low until I was done with surgery, putting my life on hold.
When I got sick again soon after I was like, is there no end to this nightmare? I was angry.
I still had not told many people, but I included my close family and friends this time, and they were there for me like I had never imagined. By my side when I did chemo, cooking for me after treatment, taking me for walks when I managed and driving me to the hospital for surgery. Sharing their time, resources and love with me. So amazing.
I particularly remember the weekend I started losing my hair for reals. Two of my closest came over with food and two bottles of wine, plus my girlfriend’s man’s shaver. We had dinner and drank, talked and laughed and listened to music.
Then we turned up the music and my brave friend shaved my head. I felt so supported, lucky and loved, amidst it all.
But still. They left. To their “normal” lives. The day after I spent all day crying on the sofa. I remember getting messages and pictures from friends who were taking advantage of the last nice days of fall. At their family summer houses, quick city breaks with their partner, with their new boyfriends at a mountain in Norway or with their new babies or families picking berries in the forest.
I was there; bald, my body changed forever due to aggressive surgery, broke, single and alone feeling sick and reduced down to a mere shadow of myself. While watching my friends, exes and colleagues having babies, getting engaged, getting married, buying houses and cabins. Getting funding for their projects and traveling around with their films to festivals. I saw my positions slowly being replaced.
Love is the answer
For the longest time I was trying to maintain an illusion to the rest of the world that I was doing fine. For what? For who? Out of fear. Out of embarrassment that I had gotten sick. Out of guilt that I had gotten sick.
And the question that was doing gruelling turns in my brain is this; why did I get sick? And why did I keep getting sick?
At present, I hear variations of these questions from near and far regarding their changed situations due to Corona. Why is this happening to us?
What I found through my process is this:
1. When something is out of balance, disease is often a reaction.
2. We are all part of the same organism in this universe, and we are all connected. Our thoughts, words and actions affect everything and everyone, spreading like rings in the water.
3. The answer is Love. Self-love, love for everything living and existing, and particularly Love for our source of life, our planet.
Who’s fault something is, I find, is of less importance when a situation needs to be fixed. Finger-pointing, fear and guilt have never, as far as I’m concerned, solved anything or made anything better.
What, in my opinion, has improved my situation, is my own acceptance of that this is here and now and this is what I am going through.
When I, in December last year upon receiving the death sentence, called one of my closest friends, I said: I can’t take this anymore, I want you to take me to Switzerland and turn off the lights! Her loud and clear: “NO! We are getting through this, we will find a way”, set the wheels in motion and everything suddenly went from “impossible” and “lonely” to “possible” and “we are in this together”.
Through communication and team efforts, I was able to once and for all accept the situation for what it is here and now. And through that accepting, the gates opened up for me to receive the unconditional love and help and trust from fellow human beings.
Human beings who have put their trust in that I will be well. Who have given more than they could afford, no questions asked, to help pay for my treatment so that I can live. Human beings; friends, family and strangers who have offered me their homes, flights, their time, their skills, their positive energy, their resources, friendship and love.
This is why I can say today that even though the COVID-19 has made the world more complicated, my personal situation is much better than it was a year ago when I, at this time in March last year, was doing the radiation therapy after chemo and surgery.
Only when I felt my personal situation get so out of hand and I was at complete disarray about what to do, I opened up and asked for help. As a result, now I am here in New York, getting treatment in one of the best hospitals in the world.
As opposed to being alone, bald and sick, now I am surrounded (though mostly virtually at the moment) by people who care. I don’t feel alone.
I’m being treated with dignity and personal touch as a human being. Because of new technology, and very modern treatment I don’t have to feel so sick and lose all my hair and blow up like a puffy ribbed chicken like last treatment.
Because of the grace and love of my fellow human beings, I’m doing good. My situation has improved. And I have another chance.
Sure, I will have to start again in very many areas of life. But I strongly believe your capacity to adapt to a situation is your strongest card. Or as illustrated in Aesop’s Fables… You are the goose (your ability to create a living), not the golden egg (the job or funds you have had as a result). As long as I’ll be healthy and can create a new living, there will be no stopping me!
Please forgive me if I’m getting too philosophical. But I can’t help but wonder about the relativeness of things. I mean, I would literally be ecstatic if someone could wave a magic wand and all I had to deal with was a home office, my own children and corona. If I knew I could have children. If I could have my old body back. If all I had to deal with was finding new work. If all I had to deal with was financial.
I find it humorous now that I used to get upset about little things like a cancelled holiday or a project that was not happening. Let alone not being able to watch Netflix in Germany or getting the wrong Rose-wine at the bar. Hah!
Here and now
Now that pretty much every aspect of my life is different than I could ever have expected a few years ago, I have been forced to live in the here and now, be present and grateful for what I do have. And the more I notice the good things, the more good things are happening. So I have hope.
Here is what I’m hoping for, for us all, during these strange changing times.
I hope that we all manage to maintain faith that better days are to come. That all of us remember that we are part of one, and that even if tides are turning, we are, and always will be in the same boat when global things happen in this world.
I hope we manage to change our world for the better.
I hope for a world where our earth is being treated for what it is, and respected as our life source and a treasure with resources enough for everyone, when shared properly. A world where we think “we” instead of “me” when making decisions. A world where we choose not to close our eyes to the suffering of fellow human beings, animals and nature to capitalize on short term monetary gain for ourselves. Where lives are seen as more important than money.
A world where honesty, empathy, good manners and values are set higher. And where we see the truth about the people who are now keeping our society running: Nurses, farmers and food producers, grocery shop employees, cleaners, law enforcers and reporters. And everyone else who spends their days working hard so that all of us can be healthy, safe, informed, fed, and have clean and secure surroundings.
I pray for a world where everyone gets to experience love, kindness and friendship and that they are valuable and treasured individuals, important to and part of their community.
Through what people have shown me during my crisis, this is all possible. If all the people of the earth now gather around it, like people have gathered around me, and look for solutions, communicate their needs, share what they have and are there for each other, I’m convinced we can turn this situation into a lasting change for the better.
So yes. I’m doing good. Thank you. I’d like to end with the words of one of my favorites;
«The Times They Are A-Changin'»
Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’
Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’
For the loser now
Will be later to win
For the times they are a-changin’
Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’
Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’
The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
And the first one now
Will later be last
For the times they are a-changin’
Elisabeth Rasmussen is a video artist and film/TV director from the Norwegian Arctic circle, known for her international mindset and original creative flair, her documentary on Netflix («The Heart of Bruno Wizard») and internationally exhibited video installations. In December 2019, Elisabeth was told by her Norwegian doctor that she was dying, due to a recurrence of aggressive breast cancer. Her friends and family sent her (financed by this fundraiser) to NY, where she is currently being treated with great prognosis at a private hospital.