Friday, May 28, 2010

It Really Was Diff'rent Strokes

Gary Coleman died today, and if you haven't said, "What'choo talkin' 'bout, Willis?" at least once in his honor, you just don't care.
                        Gary Coleman, Feb. 8, 1968 - May 28, 2010

It was an "intracranial hemorrhage" that ultimately claimed him at the tender age of 42, but if you can believe all the tabloid reports and your own eyes, life hadn't been a painless experience for Coleman in quite some time. I met him, briefly, many years ago; he was pleasant and seemed gracious enough, but you couldn't escape noticing the incredible sadness in his eyes.

You may also know that Gary Coleman fought a lifelong battle with kidney disease. He suffered from a condition known as focal segmental glomerulosclerosis, the illness that ultimately stunted his growth at 4-feet-8 and resulted in two kidney transplants during his life. At one point, it is said he needed four dialysis treatments a day in order to survive.

I guess I'm feeling particularly close to him today because of that. And I'm so very thankful that kidney care and dialysis technology has advanced so far in such a short time. I'm sure Coleman endured pain and misery that I can't possibly imagine because the science wasn't in existence to treat him better just a few decades ago.

This could be why some friends who haven't seen me in a while find it difficult to suppress their shock when they discover that I still look relatively healthy. Mentally, they may be using Gary Coleman as their template. I have a tremendous support network, from my wife, Karen, and my family, to the doctors at Carle Clinic and my amazing nurses at DaVita, all working to keep me looking and feeling this well.

We're not all that different, Mr. Coleman and me: both African American, both adopted, precocious kids born in the Midwest. I'm older, but we're of a generation. But life's a funny ol' dog, ain't it? I realize that Coleman's lot in life could just as easily have been mine. Diff'rent strokes, you know?

Rest well, Gary.

Tuesday, May 4, 2010

The Fool on the (Capitol) Hill

I cannot tell you what a thrill and honor it was to return to my home state of Michigan last week and speak at the State Capitol in Lansing as part of the annual Diabetes and Kidney Day ceremonies Wednesday, April 28. Many and sincere thanks to Sally Joy (isn't that a great name?), public policy consultant for the National Kidney Foundation of Michigan, who extended the invitation, and to all those who worked so tirelessly to make the day of advocacy and awareness such a ringing success.

I must admit, I was a bit off my game for this event. I have gained so much weight over the past year, a combination of bloat from my Peritoneal Dialysis fluid exchanges and not being able to exercise as I'd like because of post-gout weakness in my feet, that I discovered my favorite suits no longer fit. I have always been a firm believer that clothes make the man and bolster one's confidence for public speaking. On this day they made me less like Cary Grant and more like Oliver Hardy.

In the main this is a day for spirited and heartfelt lobbying. Michigan residents who suffer from diabetes- or kidney-related illnesses and the people who work on their behalf go face-to-face with state senators and representatives to plead for no further budget cuts in programs that improve prevention and management of these terrible diseases. Everybody knows the state of Michigan is flat busted, and every lobby has its own ox to gore, but state funding for kidney and diabetes programs has been cut from $4 million last year to $2.5 million this year, with further cuts proposed. We would like someone else's ox gored, please.

Another topic of great concern is passage of Michigan House Bill 4878, the Care for Students with Diabetes Act. Children with diabetes require management of their condition 24-7, yet Michigan has the second-worst ratio of school nurses to students in America. Parents of kids with diabetes told alarming stories of having to move their children to different schools and make frequent trips from their workplace daily because of teachers and administrators who wouldn't accept the responsibility of caring for their kids and wouldn't let the kids manage their blood glucose level themselves. Bill 4878 would ensure that students who are capable of self-managing their diabetes be allowed to do so and demand that someone on every school's staff be trained in providing routine diabetes care, but to date the bill hasn't received so much as a hearing in the legislature.

Geez. It's for the kids. Write your representative and politely ask, "Whuzzup wit dat?"

The great irony to me is not that I was in Michigan advocating support for diabetics and fellow kidney sufferers even though I no longer live in Michigan. The irony is that I might still be living in Michigan if my wife Karen's superior health insurance hadn't prompted me to relocate to Illinois for coverage. When Sally Joy read my first-person story, "Best Foot Forward" in HOUR Detroit magazine, she invited me to speak despite my Land of Lincoln mailing address. While in Lansing, I sat next to a Grand Rapids attorney, Greg Prasher, who kept saying I looked familiar. Turns out he was the catcher for the softball team I played on when I worked for the Grand Rapids Press 30 years ago. More irony, "small world" variety.

I won't bore you with the entire transcript of my talk – I'm not sure I'd want to read it again myself – but I will say this is the first time I've been to Lansing without catching so much as a glimpse of Sparty. I remember my first visit here several years ago, working on a cover story for the Eastern Michigan University alumni magazine about state legislators who were EMU grads. I stepped inside the Rotunda, pushed the elevator button to go upstairs for my first interview, the doors opened and – there, standing inside the elevator in full green-and-white battle regalia, was Sparty! What does one say to a college mascot in an elevator, anyway? I do remember he wasn't much of a conversationalist.

Some excerpts from my Lansing remarks:

"I drove the 400 miles from central Illinois to be here with you today because Sally is very persuasive, and because I feel that passionately and that strongly about what you're doing here today."

"It's not easy to walk up to a state senator or representative, no matter how passionate you might feel about an issue and say, 'HEY! I want to talk to you about this! Diabetes and renal failure are important, and we're not spending enough on education or awareness or prevention to impact our population.' But you have done it. You've come here today, you've grabbed them by the collar, you looked them in the eye and you told them what you had to tell them. You should give yourselves a round of applause."

"I have learned so much today. I have been inspired. I feel like the man with no shoes. It's pretty easy to get down about your condition and feel sorry for yourself, until you hear some of the stories of overcoming and triumph today from people who have endured so much more than you have."

"Having this disease impacts every facet of your life. It has changed the way I eat, the way I bathe, the way I dress, even the way I sleep."

Speaking of eating, I couldn't resist the opportunity to include a playful, impromptu jab at my hosts after walking through the lunch buffet line at the House Office Building. "I couldn't help but think, 'My dialysis nurse would have a heart attack if she saw me here!'" I told the audience, many of whom knew where I was going. "All this cheese and tomatoes and spinach salad and black beans and lunch meat, all these things I'm not supposed to eat. You know, there is a pro-kidney diet, and I explain it to people like this: Anything you used to can't eat that anymore. I did, however, enjoy the onions and green peppers."

I got a laugh, but I also overheard Sally Joy talking to the head of the dining service after the event and suggesting that in future Diabetes and Kidney Days, they may want to review the menu a bit more carefully.

That was the greatest irony of all.