July 5, 2011
1999, my daughter Katrina was finishing her second year at Harvard and looking forward to volunteering her summer in an orphanage in Nicaragua. She looked ahead to an active fall, an internship in Sweden for the US State Dept., and more world travel. Since then her friends have graduated from college, some are getting married and many are living in various parts of the world. But not my daughter.
Katrina came back from her missions trip sick and has been sick ever since. In the last years we have been to many doctors, paid a lot of co-pays and spent a tremendous amount of time waiting. She has been through scary procedures, painful tests and examinations of all kinds. We have met doctors who are thoughtful and those who are rude. We have met people who have gone out of their way to help and those who have gone out of their way to hurt. We know a lot of things she doesn’t have and a lot of doctors who don’t talk to each other. Essentially the doctors know there is something wrong with her but they don’t have any idea of exactly what is wrong or how to fix it.
Katrina can be sitting in a chair and her heart rate will suddenly jump from 85 to 145 for no reason. Things are better with the medications she’s on but her heart can still race unexpectedly, her balance is off, her vision is blurred, her hands hurt, her muscles spasm, and her glands and organs feel swollen. Her head is hot and her hands are cold. And every few weeks (months or days) her body will ache, she won’t want anything to eat, and she will be extremely sensitive to light and sound.
Three years ago, she could do one big activity per day. She could choose between taking a shower, going out to dinner or going for a walk around our cul de sac. At present, she can’t even do one big activity. Next, she could use a walker on a very good day. Now she uses an electric wheelchair to get from her bed to the bathroom to the hospital bed in the living room.
She has a first rate mind and lots of ideas but her hands hurt when she types, her face hurts if she dictates or talks, and her eyes don’t focus long enough to read for any great length of time. She battles boredom in her head but it’s a constant challenge. In her present condition she can’t return to school, get a job or live by herself.
There are two conclusions I’ve drawn from Katrina’s experience. One is don’t delay adventure. I suppose it wouldn’t be surprising to say based on my experience that you shouldn’t encourage your kids or yourself to try new things. Stay home and be safe. But I’ve come to the opposite conclusion. Life is a fragile and limited endeavor; take every challenge you meet because you never know when it will be your last.
The other conclusion is that bad things happen independent of us. I am absolutely convinced that God doesn’t send us bad things (that’s not His personality) but He does help us turn the bad we encounter into good. As Romans 12 says “take the offense: overpower evil with good.”
So I recorded a CD to overpower evil with good. I went back to my love of singing (I had a voice scholarship to Eastman when I was young and foolish). Now that I’m old and foolish it was fun to do some more singing. I called the “Katrina’s Christmas Wish” because it is Katrina’s wish that people know that God is good, loves us, and is proud of us. And there is no better expression of God’s love than Christmas. It should remind us that even when really bad things happen and your entire life is redirected, God is good. With charts by Emmy-winning Richard Putnam and great licks from guitar stylist David Johnson, I sing some of my own songs and some classic carols. We recorded it in North Carolina to give you a “country” tour of Christmas.
More recently I’ve added another CD: “Professor Tangen’s Great Gospel Tour.” It’s a brief history of American gospel music. We follow the preachers, peddlers and singing groups as they travel across America. At each stop they run into new music styles. Gospel music in the US began with spirituals and “field holler” songs but soon encountered blues, jazz, and more modern styles. I sing some of my own songs and added some twists to old favorites. The album features jazz pianist Mark Davidson’s arrangements.
Katrina suffers from a disease of unknown origin. It impacts nearly every part of the autonomic nervous system. The disease currently goes by the name Chronic Fatigue
Immune Dysfunction Syndrome (CFIDS). This is an unfortunate name because it often trivializes the situation. Fatigue makes it sound like that feeling you have after jogging around the block and the muscles feel tired. CFIDS is more like taking chemo or having the flu all the time. It should be called the Overwhelming Exhaustion Disease Which Makes Your Whole Body Shut Down.
For more information, visit www.cfids.org.