...and Squigy was in the Bathroom

This week, a special and dedicated group of people have converged on Atlanta to take part in the annual conference for the National Multiple Sclerosis Society. MS is a nasty little disease where the bodies' immune system engages in night time raids against healthy cells in the neurological system. The range of symptoms seems almost unlimited sometimes including weakness, fatigue, pain, loss of motor function, blindness... the list goes on but does not get prettier.

Not unlike compassionate conservatism, no one is really sure what causes it, or how to get rid of it. The slightly technical explanation is this: nerve strands in the brain and spinal cord are covered with a protective layer known as the myelin sheath. The attacks cause damage to the sheath, which leaves scarring. Sometimes the damage can go so deep as to cause nerve damage. Either way, the damage impedes the electrical responses or pathways that the body uses to process feeling and sensation.

Think of a section of electrical wire. Now take your handy dandy Leatherman and strip some of the plastic/rubber coating away. The exposed wire can short out the rest of the system. Rather than blow a fuse and wait for the electrician, when this short occurs in the human body, the things stop working, like legs, hands, eyes... In many cases the short is transmitted, or experienced, by the tinglies you get in your ass when sitting on an airplane for 6 hours. Or it gets transmitted into pure, unadulterated pain.

When speaking to groups, I prefer to liken it to taking a bite out of a jelly donut (it is supposed to be a visual trick, an excuse to eat a jelly donut). When the doughy outer layer is gone, the tasty fruity middle is exposed and after a while becomes useless (unless I have been drinking a lot, and there is no pizza and anything goes then).

There is no cure yet. The drugs approved by the FDA are all designed to slow or to halt the progression of the disease. Right now, all the approved meds are also in the form of shots, which just sucks.

Already this week, we have seen Fox News' own Neil Cavuto. Aside from surviving cancer, which I didn't know, Cavuto has MS. Beating me to the punch, and perhaps of interest to greybeard, Cavuto has written a couple of books now which share some pretty powerful stories about how we focus too damned much on finances and money, and do a huge disservice to our families and to ourselves. Adding both of those to my Christmas list...

One of the stories that Cavuto recounts is that of Dave Landers, who we all affectionately know as Squigy from the Laverne and Shirley days. Landers had MS for 15 years, hiding it from virtually everyone, so that he could keep his Hollywood career. Now, he is a scout for the Seattle Mariners. Landers wrote a book about his experiences with MS, "Fall Down Laughing". I lived in nearly complete denial for a year after I was diagnosed with MS. It was Landers book, his humor, and his perspective, that helped pave the way for my own personal acceptance of how my life had been changed.

I saw Landers in the bathroom first morning of the conference. He was shaving, he doesn't get around too well, and he didn't look quite as good as I remembered. I have been so consumed with job and family and the right now, I have not been as reflective or as introspective as I once was. I react, rush to beat deadlines, speed to the airport... in a very short time I had forgotten what a huge impact this man had in my life. It took me hours to process and to remember that. So I missed my my opportunity to tell him thanks. I will just blame it on my instinctive desire not to accost strange men in a public bathroom.

There have been many inspirational stories, and I will try to put up more about this over the weekend.

Outside events sucking my attention away from the conference, have forced me to be a bit more reflective and introspective. I am falling back into the same type of rut now that I did before the diagnosis, I am sacrificing time with my family for other things that I tell myself is best for my family. After the diagnosis, I ramped up all my old motivations and desires, trying to live life to the fullest. I am realizing now, living life to the fullest means quality, not quantity. I am doing so many things with so little results, working more on adrenaline than focus, justifying instead of being accountable, so many things that push me closer to... Formerly Living.