If you read my post ranting about positivity and positive thinking, you probably know I’m not into inspirational stuff and stories that make it sound like it’s really easy to overcome our limitations and all adversity – and if you can’t do it yourself then you’re not worthy of any support or admiration at all no matter how hard you’re struggling.
That’s the reason I enjoyed this Huffington Post article so much. It’s about a series of self-portraits called Falling Into Place by Patricia Lay-Dorsey, who’s been diagnosed with primary progressive multiple sclerosis. It’s raw, it’s symbolic, not always pretty, but it’s interesting because it shows people those uncomfortable things many of us wish not to see or think about. It isn’t about self-pity and it isn’t about fake positivity. It’s life as it is, as some of us know it.
As soon as I learned about the Oceans of Hope project, I wrote a little post about it and followed the journey on Twitter waiting eagerly for the boat to reach Lisbon. They arrived on Monday 28th and are leaving Saturday.
Unfortunately I wasn’t able to participate in most of the activities they arranged along with our national multiple sclerosis association because I was working, but I managed yesterday to go to an informal talk with a neurologist and a nutritionist. Then the captain of the boat, Mikkel Anthonisen, who is a sailor and neurologist in Denmark, introduced the project and invited us to visit the boat.
I was surprised at how small the boat is, both from the outside and inside. My mother was with me and at a certain point she had to go out because she was feeling claustrophobic. There will be 6 people with ms on board for the Lisbon-Boston route, which will take a month with very few stops across the Atlantic Ocean. There will also be a doctor, a cameraman and two assistants on board, and everyone will take turns and do everything with no exceptions.
I told one of the crew members I don’t think I could ever do something like that. Besides the fact that I have no experience whatsoever with sailing, crossing an entire ocean will probably take large amounts of energy and strength that I definitely lack. I can barely carry my shopping bags when I go to the supermarket, I can’t imagine pulling ropes and carrying equipment and holding the wheel like they will do.
But I enjoyed the experience very much. Though I’m not into “inspirational stuff, like look-at-us-if-we-dream-we-can-do-whatever-we-want” I could definitely feel the good vibes and the excitement because everyone was in such a good mood. I was also very happy to meet and talk to some of the crew and other fellow MSers who attended the talk and visited the boat as well. I didn’t take many pictures because I was so engaged in the moment. They honestly didn’t turn out that well either, but here’s a little taste.
The official website for the project is keeping everyone updated. You can see the pictures in the gallery, read the latest news and also blogs by the crew members, and check in real time the position of the boat. I will be staying tuned.
Just found out about the Broken Light Collective, an online photography gallery for and by people living with or affected by mental illness. Absolutely stunning contributions there, I’m already following.
Oceans of Hope is a worldwide campaign organized by Sailing Sclerosis Foundation which will take place for over a year. This initiative aims to change perceptions about people living with multiple sclerosis by showing what they can accomplish when they can commit to active lifestyles.
The project Oceans of Hope is led by Dr. Mikkel Anthonisen, founder of SSF and MS specialist at Rigshospitalet, Denmark. He and other members of the crew, including people with MS, will sail around the world, carrying a message of hope and creating the opportunity for members of the global MS community to connect with each other. This initiative will stop at various locations and will host several events to help change perceptions and bring awareness to the disease.
The trip will begin in Copenhagen in the 15th of June with planned stops in Kiel, Germany, Portsmouth, UK, La Rochelle, France, and Lisbon, Portugal. After Europe, the ship will sail to Boston, Massachusetts, USA, where the biggest scientific event about MS, ACTRIMS/ECTRIMS, will take place, between the 10th and 13th of September. It will then continue to sail the world, with planned stops in Australia and South Africa, before returning to Europe for ECTRIMS 2015, which will take place in Barcelona, Spain, between the 7th and 10th of October 2015.
How To Touch A Hot Stove is a short documentary, narrated by actor John Turturro (Transformers, The Big Lebowski), which seeks to alter the way that people think about mental health. The film is a short documentary that considers the complex variations in human experience and differences in thinking, feeling, and perception. It identifies the new civil rights movement that has emerged to combat the marginalization of those with “mental disorders,” explores why that movement is more complex than other civil rights movements, and reveals the often disparate perspectives held both by professionals and those with lived experience — as it challenges audiences to go “beyond the movement” and make a difference.
Featuring Appearances by: Temple Grandin, Patch Adams, Dr. Oliver Sacks, Nobel Prize Laureate Dr. Eric Kandel, former First Lady Rosalynn Carter, Susanna Kaysen (Girl, Interrupted), Joanne Greenburg (I Never Promised You a Rose Garden), and others provide key insight. The collaboration of Dr. Anne Harrington, Professor of the History of Science at Harvard University, provides a compelling backdrop of the history of stigma.
Created by Lois Oppenheim, Ph.D., Alice Maher, M.D.
Directed by Sheryll Franko
Produced by Hot Stove Productions in association with Falling Awake Productions
So after writing about the Seeing MS project, I decided to play with the filters and see what would come out. These are my first two attempts at exposing the invisible disease. Head over to the site and vote for your favorites.
One of the most frustrating things about living with multiple sclerosis is that most symptoms are invisible and we appear to be well to other people. One day the entire world seems blurred – yet you’ll never know how I am seeing you. The other day I am so tired I can barely stand or listen to people talk – yet you’ll just say I’m not getting enough sleep. And how about those days when my memory took some time off and I can’t remember anything you told me? – you’ll just say I wasn’t paying enough attention, or worse, that I’m a bit dumb. And let’s not talk about those days when my balance is off and I bump into every other object in the room – then I’m just a clumsy little girl.
I feel ashamed of talking about my little handicaps because people will most likely eye me suspiciously and assume that I’m just trying to get away with responsibilities or work. I had a boyfriend who once suggested I was faking symptoms just to get attention and on another occasion he suggested I was using the disease as an excuse to get what I wanted. This kind of response makes ms patients feel isolated, insecure, misunderstood – and that’s hardly breaking news. If you research a little about multiple sclerosis, either online or the old-fashioned ways, you’ll find lots of people wrote about it.
For instance, Sandra Amor and Hans Van Noort wrote in their Multiple Sclerosis – The Facts that “symptoms may range from being almost unnoticeable to severe, and anything in between. In fact, quite a few people with MS do not show any clear signs of their condition at all to untrained eyes. Paradoxically, this in itself can be a cause of problems too. Family members and colleagues may sometimes think that complaints may be exaggerated, or even imaginary. Society can sometimes be quite impatient with people who need special attention but still appear to be largely okay from the outside, especially when they are young.” Allison Shadday adds in her MS and Your Feelings, “Unfortunately, society reinforces a stoic stance. We’re taught that it is better to keep our ‘complaints’ to ourselves. But the price we pay is isolation. Keeping up a good front inevitably makes us feel distant and misunderstood by others, rather than accepted and loved, as we so desire.”
But the truth is, most people don’t care enough to read or research. So when I found out about the Seeing MS project, I thought it was fantastic. The idea is to expose the invisible symptoms, by depicting them in an image. Nine photographers were invited to participate, and anyone else can submit their pictures as well. Where words fail, maybe images can help.