“We do not suffer from Parkinson’s, we live with it”
The last in our monthly series profiling WPC2019 bloggersREAD MORE
Anders M. Leines is on a mission to give Parkinson’s a ‘total makeover’ – one image at a time
Anders M. Leines – a video journalist by profession – has turned to the art of the still image to capture younger, ‘early-onset’ Parkinson’s patients in a series of portraits that are at once poignant and celebratory. As his exhibition This is Parkinson’s tours his home country of Norway, ahead of a visit to the US – and then hopefully more countries around the world – Parkinson’s Life speaks to him about his own experience of the disease, and why he’s so intent on changing the perception of Parkinson’s.
When were you diagnosed with Parkinson’s?
Six years ago, I just ran out of energy at work. My colleagues could tell I was struggling. After some months they asked our work doctor to examine me because I was no longer the same. He referred me to a neurologist. My wife had seen how my right arm was no longer swinging as it should, so I was more surprised than her to receive the diagnosis. I thought it would pass. But Parkinson’s doesn’t pass. That’s where the big challenge lies.
Has it affected your work as a cameraman?
I work at my own pace, more independently than before, with longer deadlines and less stress – and that’s important when you have Parkinson’s.
How important have your family and friends been in supporting you?
Enormously important. Annika, my wife, grew up with her father struggling with both multiple sclerosis and cancer, so unlike me she knows from experience what chronic disease can do to a family. Her father died when she was 17. Her experience with life’s challenges is of great value to our family now. The disease has brought so many wonderful people into my life. The people I photographed for This is Parkinson’s were, or have since become, close friends.
Why did you decide to embark on the photography project?
The idea is to give the image of Parkinson’s disease a ‘total makeover’. There is huge potential for better and more powerful storytelling within the Parkinson’s community. In medical textbooks, as well as in the media, people with Parkinson’s (PwPs) are traditionally depicted as tiptoeing, shaking and stooping seniors with whispering voices and a staring glare, imparting the impression of an apathetic or asocial person who lacks empathy and is uninterested in taking part in normal social interplay. This image is of no help to the patient as it fosters prejudice.
How does your exhibition challenge the stereotype?
This exhibition showcases proud people with their emotions and abilities, including self-respect and humour, intact. They are different from each other just like everyone else. Some have little children. They are young. They are vulnerable. They have dreams. They want action and they are willing to contribute.
Why did you decide to focus on those with early-onset Parkinson’s?
Firstly, it is something not many are aware of. Secondly, I myself am ‘young’. And thirdly their story is more powerful: they are only at the start of a long journey. These people and their families could have had such a different future if better treatment was available.
How did you choose your subjects – and how easy was it to find people who were willing to be photographed?
Finding the people was surprisingly easy. Especially the boys! The Norges Parkinsonforbund (the Norwegian Parkinson’s Disease Association) helped a lot. I was looking for people under 50. But ‘Mr Tattoo boy’ (Eivind, below) was just too good looking to be excluded!
What would you like to see happen as a result of the exhibition?
I hope to give courage to the patients and their families, to have an influence on the priorities of politicians, scientists and the medical community. I also hope that this campaign or similar campaigns will spread to other countries.
Why is it so important to you to show the exhibition outside of Norway?
I think the need for patients to stand up and give Parkinson’s a face is perhaps even more urgent elsewhere. Last year, I went on the Unity Walk in Luxembourg. Speaking to a representative from the Spanish Parkinson’s Association about my project she said, “We have no celebrities in Spain that we can use to create awareness.” I said: “But these are ordinary PwPs!” She replied, “Yes, but normal people in Spain don’t want to display their disease.”
Is there not so much stigma attached to Parkinson’s in Norway?
In Norway displaying illness is not so stigmatised as in many other countries, but I believe the international Parkinson’s community should be doing something similar to the exhibition. It’s about bettering the quality of life for people with disabilities in general. Changing attitudes. And that was one of the reasons why the (Norwegian) Ministry of Health decided to support this project.
What is the Parkinson’s community like in Norway in comparison to other places around the world?
We have a long tradition of promoting individual rights and values. The Parkinson’s patient community here has a stronger focus on young PwPs than what is common in most other countries and it’s paying off by benefiting the entire community.
If you’re interested in supporting Anders with his plans to take the exhibition to other countries, please contact: firstname.lastname@example.org
Since I became chronically ill I have felt greater integrity and confidence in my job as a family therapist. I allow myself to run in the sun confident that this is going to go well, and I allow myself to cry in dark despair and feel the depth of grief that the disease inflicts on me. I would have preferred not having had to talk to my children about illness, yet we experience love stronger.
Every time I get a little worse, I think: I don´t want this! I don´t want to spill my drink, fumble, or not be able to speak. I don´t want the fear. I don´t want to understand. Will not know, will not increase my dose, will not carry that damn green pill-box! I just want to be healthy, not sick, HEALTHY! Dear brain, you and I must fight and win. We must win. There is no alternative.
I stand still. Absolutely still. I want to move, lift my legs, get going. But I stand still. Down to my knees in syrup. The symptoms came a few years before the diagnosis. Somehow I had no speed with the toothbrush. Then came the drugs. But medication is difficult. If I hit it right, very few will notice I have the disease. When I don´t, I can barely get my pants on. And I am angry. Parkinson has taken away so much. And he is always looking for more, more, more.
On a good day, everything feels just about perfect. My workout is terrific. Self-esteem is top notch, I belittle the disease and I believe this time it will last forever. As I write these words I have just finished an 'off' period which lasted for two hours. Trying to sit in a chair, but just sliding down. The voice is barely audible, struggling to keep my eyes open. Vulnerable and touchy I don´t say much. Then suddenly the ache is gone and my spirit is high and life wonderful again. I feel like working out one more time before I go to bed.
My family also live with the disease, and probably experience it even stronger than me since it is absolutely beyond their control. The drugs have changed my behaviour in ways that are difficult for them. Since my recent DBS surgery, things are better. An implanted stimulator delivers electricity to the brain. When life brings you challenges it usually brings some possibilities too. For me it is important to look for those.
"Hold my hand properly! Your hand feels like fish-pudding," my husband said one day we were out walking. "You look angry, but your voice sounds happy," my daughter said a few days later. I am open and honest with the kids, and try not to scare them. But I'm afraid of not being a good enough mother, that I may not give them the memories they deserve. Fortunately, both me and my husband possess a well-developed sense of humour that saves us from many situations. It can often be a bit morbid. What the heck, as long as it results in a liberating laughter.
Anders M.Leines, 51
Photographer of This is Parkinson's
The last in our monthly series profiling WPC2019 bloggersREAD MORE
Our favourite quotes of the week from around the webREAD MORE
Easy-chew aubergine dish that’s high-fibre but low in proteinREAD MORE