Posted on 09 September 2011.
Kris Galle, age 70, of Cedar Springs, has ALS—better known as Lou Gehrig’s disease. Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. nerve cells (neurons) waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one’s own.
Kris and her husband, Bob, 81, are battling the disease together. To cope with her illness, Kris has been writing about what she is going through—but with a touch of humor. Her sister Sidney brought in some of what she has written in hopes it will bring a smile to the face of others who are caring for a family member.
“Kris is one of the funniest people I know,” said Sidney. “As we learned the art of humor in our upbringing from the joy of life’s experiences, this gift has flowed through us to our children…We hope it is healing.”
By Kris Galle
There once was a lady who had her home decorated just the way she wanted it. Kind of comfortable Victorian. Lace, flowers and fern. China cabinet, beaded shades and pictures. Lots of pictures. The oak coffee table held magazines and an actual cup of coffee. Then I got sick. Soon my perfect room became a dumping ground for machines, miles of tubing and “things.” The sofa became my office and we added a second coffee table, different size, wood and height. They became my desks.
My desk now holds magazines, Kleenex, box of bills, two computers, a bell, horn, whistle, remote, phone, sunflower from Marge, smiley cup of pens, matchbox Lamborghini from Ethan, stone from Lisa, cross Evan made, an angel medallion, a book and the nebulizer mouthpiece. Underneath is a wipe-off board and three boxes.
To my right are the nebulizer machine and a huge three-foot oxygen condenser with 15 feet of plastic tubing. The nebulizer only has about 18-inches of plastic tubing. In front of me is an IV pole with gravity bags for the feeding tube. That has six feet of tubing. Plugs and cords everywhere.
My walker has a seat filled with my snacks. Chex Mix, Lindt chocolates and animal cookies. The power chair is on my left. Around my neck is the stunningly lovely medical alert. The box it’s connected to is on the counter. We have eight smaller canisters of oxygen stored in the bedroom. The ramp has a racing stripe down the center so I keep my chair centered. Next to the bed is a machine with a mask and water container with two hoses to wear when sleeping. There is another wheelchair in the truck.
The medical equipment is taking over. How do I recreate the Victorian look? Doilies on the power chair? Pictures and flower hanging from the IV pole? Lace skirts on the machines? The most irritating is the miles of tubing and cords on the floor. If I stand at the top of the stairs and close my right eye, I can see the pretty side of the room. If I close my left eye, I can see my office side of the room.
When you get sick, it’s not just the illness you battle, but the changes it brings to your everyday life. The perfect coffee table doesn’t matter. What matters is that we had another one to put next to it. And one of my favorite things on the table? A picture of Lisa’s big toe giving me a thumbs up from the beach. That’s what’s important.