"It's not a rare disease if you have it."
That's a saying I made up for Kevin Paul, the famed Swinomish singer and sculptor.
Kevin has an unusual form of cardiomyopathy, and his wife, Patricia, shared this information with me for Frog Hospital.
It helps to know Greek and Latin, because that is how they make these words.
Cardio = heart
myo = muscle
pathy = in a bad way
So cardiomyopathy means that Kevin's heart muscle is in a bad way.
The particular condition Kevin has is called Isolated Left Ventricular NonCompaction.
Each term can be explained:
Isolated -- because it effects only a portion of his heart.
Left Ventricular -- because it occurs in the Left Ventrical, which is the main pumping chamber in our four-chambered hearts.
NonCompaction -- because a portion of Kevin's heart muscle is spongy and not firmed up like it should be. This is the source of the problem and it is genetic.
NonCompaction of the heart muscle means that the original sponge-like character of the heart muscle, when Kevin was in his mother's womb, stayed that way. The sponge-like character is supposed to compact and become more firm as the baby grows and gets ready to be born.
This NonCompaction is rare. Fewer than one in 100,000 people have it, meaning that Kevin is probably the only person in the Skagit Valley with this condition.
It is suspected that cardiologists under-diagnose this condition -- that it is more widespread than one in 100,000m but, because it is rare, cardiologists might not recognize it.
But Kevin got "lucky." The doctors correctly identified his problem. They found that his heart was pumping at less than 50 percent of its capacity. He takes medication now, which has improved his circumstances, but the underlying NonCompaction cannot be reversed.
I saw him just a few days ago. I drove by his house and he was sitting out in the front yard in a lawn chair. He gave me a big wave and a smile -- a sign of better spirits. At least he knows what he has and how he can deal with it.
Kevin sings for everybody in LaConner and tells jokes all day long. That's why so many people love him and pray for his better health.
Because it's genetic, Kevin and Pat had their daughter, Kathy, checked out with an echocardiogram and found that she's perfectly healthy. But Pat said, "there's a long history of people dying young from heart problems on Kevin's father's side of the family."
Strawberries. Mike Riley of Conway is the first grower in the Skagit Valley to have strawberries for sale. He's first by a mile. He had several flats on display at the Rexville Store and they sold out in two hours. "I wish I had a hundred flats -- I could sell them all," he said.
The bigger growers will have their berries for sale in a week or so -- things are very late this year, and we need sunshine right now to put some sweetness into the berries.
Grow your own. The newspaper reported a dramatic increase in the sale of vegetable seeds for home gardening. Yes-- if you want your food to be local, you can't get more local than your own back yard. It's not hard to grow a hundred pounds of potatoes, or 25 pounds of onions, or a bushel of green beans -- I've done it.
Stay home this summer -- grow a garden. Tell your kids if they don't help they won't eat.
We're all Partners. Last week I met a young female person carrying an infant and she introduced the male person with her as her "partner." I answered, "Well, I guess we're all partners," and they both smiled.
What is "partner" supposed to mean? I know husband, lover, and boyfriend because they are words rich with association and meaning. But a partner can be anything, and anything is the same as nothing.
Frog Hospital takes a stand against such meaningless terms as "partner." The treasure of life is meaning. Our language and culture depend on a common or shared meaning. These meanings evolve over time in a collective process.
Okay, so here's a test question: What do poets and lawyers have in common? ....... Give up? ...... It's words. All laws are made of words. All poems are made of words. Words are the writer's tools, be it a law or a poem. So when I dispute the usage of "partner" it's because it matters. Not that my own view will prevail, but it still matters.