Health

‘Day by day’: Rare Disease Day 2015

Posted on by Mark Aldrich

“Day-by-day, hand-in-hand.” Today, February 28, is International Rare Disease Day, and “Day by day, hand in hand” is this year’s slogan. As slogans go, “#TheDress” might have received more attention today, but tomorrow the world will not remember this week’s Twitter trends and millions of people will still be living day by day with rare diseases.

Rare Disease Day was first established in 2008 by EURODIS, the European Rare Disease Organization. In 2009, the National Organization for Rare Disorders (NORD) in the United States joined the effort to educate the public. This year’s theme is “Living with a Rare Disease.” Some rare diseases are life-shortening, and even kill in infancy. All of them are life-altering.

Once upon a time, rare diseases were called “orphan diseases,” and, really, neither term alone quite conveys the concept. One rare disease may affect only a few individuals, making it something that is rarely seen; diseases and conditions that affect just a few people are sometimes viewed as research dead ends, “orphans” in drug and treatment research. The medical industry wants to aid the greatest number of people, and research money is hard to win for research into a condition that affects only a few thousand individuals.

Rare is not so rare, however. There are about 6000 rare diseases that are officially recognized as such; since each one affects (by definition) fewer than but up to 200,000 people per condition, some researchers estimate that 300 million people around the globe have a rare disease. That is about one in 25 people on the planet.

If you visit a restaurant tonight or go see a movie, a couple of us with a rare disease are hanging out with you. Hello.
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‘Despair has no wings …’

Posted on by Mark Aldrich

To be is to despair and to despair is to remember the thousand tightly missed connections and not-yet completed conversations that will reveal themselves eventually as never really begun. The Surrealists got despair, perhaps better than most. They adopted Existentialism’s finer frustrations and rendered them with comedy, joy, and horror in sometimes strange proportions.

The comedy of coincidence and the tragedy of imminent abandonment dominate their work. Everyone is always alone, and this fact is simultaneously hilarious and horrifying in Surrealist Art.

André Breton, the founder of the movement, defined Surrealism as larger than a philosophy, deeper than mere art, an example of pure reason. His definition was both narrow and enormous, and it left his fellow writers, thinkers, and artists with the notion that they either were or were not Surrealists, whether they thought they were or not. If you said you were, you probably were not. The Surrealists did not reside in a safe and amusing world interrupted by slightly sad moments and then dinner; they lived fully in a horrifying and hilarious existence that demanded full attention, especially to one’s unconscious.
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Sleep, Perchance to Zzzzzzzzz

Posted on by Mark Aldrich

We measure the quality of our day by the number of achievements we have. Number of documents published versus quality of work, or the number of times this week we beat personal commuting records to and from the office, or numbers of reps at the gym, or, worse, for those dieting, number of days without “cheating,” which represents even more harsh ways to harshly self-judge.
We live in a culture of Other Peoples’ Success and thus exist in a competition with others for more successes than them and yet better ones. This is because, as Brené Brown, a famous sociologist, points out, we live in a “culture of scarcity. We wake up in the morning and we say, ‘I didn’t get enough sleep.’ And we hit the pillow saying, ‘I didn’t get enough done.’ We’re never thin enough, extraordinary enough or good enough—until we decide that we are. The opposite of ‘scarcity’ is not ‘abundance.’ It’s ‘enough.’ I’m enough.”
I’m enough. Not “I’m good enough.” I’m enough. How hard that is to say, and to mean it to be about me, myself, and not you. It is even harder to embrace.— “Get Some Sleep Already,” October 24, 2014

I only remember my nightmares. Which means that either I do not have pleasant dreams at all (not the case) or that I have them all the time but they are unremarkable to me because I live my life under the self-centered guiding philosophy that the only life worth experiencing always feels like a victorious night at an awards ceremony, so I spend my waking life continuously happy and flinging thumbs-up signs at the world (not the case, either).
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