What’s Your Problem?

Posted on by Mark Aldrich

No one who asks the question, “What’s your problem?” is expressing an invitation to join them in the quest for a solution. It is a statement costumed as a question. In linguistics, this sort of accusation-posing-as-question/concern is known by a linguistic term that I have not researched. “Accusation-posing-as-question,” or APAQ works for me, though.

It is aggressively passive-aggressive almost approximately one-hundred percent of the time that it is uttered. The person speaking the non-rhetorical non-question is profoundly certain of one thing, is philosophically sure of this: That they are not now doing, nor have they just been doing, nor were they about to do, something that falls in the range between perplexing to annoying to criminal.
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‘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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Tales of Derring-Don’t

Posted on by Mark Aldrich

“Take my advice—I’m not using it.” I can tell you to keep calm. I might insist that you keep calm. But as someone who can introduce stress into the least stressful, sweetly innocuous, and even pleasant experiences in life, when I am confronted with the parts of life that others find truly stressful, I hunker down and find the effort deep inside myself to make them yet more stressful.

In one of my lesser achievements in the field of stress management, I gave myself a black eye while tying my shoes. These were boots with leather laces (I am not a cowboy) and such laces take a little effort to yank into position. While securing my “half-knot” on my right shoe, the length of lace in my left hand broke and I clocked myself in the right eye. At the time, I was 34 years old, not eleven.
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