I’ve been aching for skin for some time now. It’s in my dreams, my daydreams, everywhere I look. It’s a kind of tepid pain, a longing, a long-distance call to a promise of a fleeting touch.
I’ve suddenly noticed though that I haven’t been paying much attention to myself lately. I’m not fit. I can’t get undressed. I’m not focused. I’m too all over the place, trying to be healthy without having a single clue of what that is, arm-wrestling with whatever that idea — ideal — means to the world and to me. I’m missing too many pieces to be good enough — impressive enough — at anything. And I don’t just want to be good enough at something. I want to be whole- some. I want to be perfect ‘cause in my mind that’s the only way I’m worthy of getting my hands on that skin — on any skin.
2014. I had one of the busiest and most intense six months in my life. Apart from my 9 to 5 job, I enrolled in a postgraduation course as soon as I was told I didn’t need surgery because of my endometriosis. I also decided to start this blog, my Twitter and I started developing ideas to raise awareness to several health issues. Then, in March, I was told it was my turn to take care of everything there is to take care of in my apartment building. I don’t know how it works in other countries, but where I live when you have an apartment every year someone new is appointed to manage the common areas. That includes supervising the elevators maintenance, the cleaning services, and whatever you may think of. On top of all this, let’s not forget I have to manage the symptoms of all my conditions. There were moments when I was under a lot of pressure and stress, and feeling exhausted. And I was scared too. When I was diagnosed with multiple sclerosis, I had gone through a prolonged period of stress, and then, when things finally settled down I had the exacerbation that led to the diagnosis. It’s like my body got so used to the stress hormones, that it freaked out when there weren’t any. Funny, right?
But I decided to take a well-deserved break anyway. A week away from my job and my neighbors. I took all my books because I have a paper I need to write for my course, but so far I haven’t done much besides sunbathing by the pool, taking long walks and eating and sleeping a lot. I get tired from swimming in the pool and wandering with my camera, but it’s the good and normal kind of tired at the end of the day that everyone gets. It’s not the kind of tired that I get during the rest of the year and that I associate with depression and multiple sclerosis. The “I’m sick” kind of tired is a feeling of physical and mental exhaustion caused by looking around and seeing no ways out, no possibilites – of being trapped.
On Monday I will go back to “normal” life, even though I don’t thing there’s anything normal in spending an entire day inside an office looking at a computer. I will have an ultrasound to check on my cyst, and I’m honestly a little worried about it, because I’m getting this bad feeling. Whatever happens in the second half of the year, I know one thing for sure: when I’m on vacation, no stress and no overwork equals no ms symptoms. And I’m going to enjoy every minute of it.
I started reading this book because a friend of mine recommended it to me, but at first I wasn’t sure I was enjoying it. After some years reading very technical books about similar subjects, I thought this book sounded like a collection of anectodes that only very lightly tapped on the tip of the iceberg. But Leonard Mlodinow had me when he explained why two Tylenols could actually ease the pain of social exclusion and even the pain of a broken heart.
Feeling curious? Leonard Mlodinow draws from the early beginnings of psychology and evolutionism and traces them until the recent birth of a new field called social cognitive neuroscience. That is to say, this new field studies how our conscious and unconscious mind process thought, and it does so through the use of brain imaging technology, which is very recent. They then apply their results to our social interactions, trying to figure out how conscious or unconscious the decisions we make in our everyday lives are.
The author compares the conscious and unconscious to two entire railway systems. “Each comprise a myriad of densely interconnected lines, and the two systems are also connected to each other at various points.” They both work together in a very smart way evolution-wise, in order to allow us to navigate fast and safe in a world full of dangers, challenges and information to sort out. Our conscious picks up the general picture and our unconscious fills in the gaps. It does so with the visual data, with our hearing and with our memory. “In each of these cases our subliminal minds take incomplete data, use context or other cues to complete the picture, make educated guesses, and produce a result that is sometimes accurate, sometimes not, but always convincing. Our minds also fill in the blanks when we judge people, and a person’s category membership is part of the data we use to do that.”
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I once printed and handed out this poem to my therapist, because I was so desperate from being incessantly misunderstood and misdiagnosed. It’s one of my favorites still.
Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.
Poor chap, he always loved larking
And now he’s dead
It must have been too cold for him his heart gave way,
Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning.
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.
For more information visit the official website