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 like...you 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.

But What a Face

I cannot stop chuckling over the unbelievable irony of the past few months. Thanks almost entirely to the unseen exposure of this blog, I have been offered some amazing opportunities that never would have occurred were it not for my crappy kidneys. Who knew that another small burst of quasi-celebrity would come my way in the midst of my midlife crisis, all because of Stage IV kidney failure?

In a few weeks, I will be testifying before the Michigan Legislature at the state capital in Lansing, putting a personal face on the topic of "Chronic Diseases in High-Risk African American Populations" for the National Kidney Foundation of Michigan's annual Diabetes and Kidney Day. I've pretty much polished the outline of what I'm going to say.

"I'm sick! Support us sick people with greater funding!"

The irony here is not so much that I don't live in Michigan any longer, although that is pretty funny; this speaking engagement was offered and agreed to some time before my move to central Illinois. The irony to me is that I could not have a kidney transplant performed in the state of Michigan now even if I wanted to. My current health insurance won't cover it. That's a point I'll be certain to mention during my little chat.

Then in early May, I have been asked by the folks at Baxter Healthcare Corp., the company that manufactures and delivers my dialysis supplies, to be the guest speaker at their quarterly employee meetings in northern Illinois, read a few entries from this blog and leave 'em with a little snappy patter. Guess campaigning for an invitation really works sometimes, eh? (See the "Cancel the Tour Guide" entry of Feb. 10.)

Baxter is really doing this first class. They offered to pick me and my Karen up in a company car and drive us to the meeting, put us up in a hotel the night before and pick up the tab for dinner after the event. Pretty snazzy. Originally, when they extended the invitation, I thought it was going to be sitting around with a handful of workers in the Baxter coffee room and engaging in some clever small talk. "Oh, no," explained Trisha, the Baxter senior marketing manager. "This is the quarterly employee meeting. There'll be hundreds of people there, the corporate executives, teleconferencing...."

Oh.

My patter had better be snappier than I thought.

But the real kicker of late is my selection as the "Male Face of Kidney Disease" for DaVita, owners of the dialysis centers that coordinate my care. DaVita launched a new Web site a month or so ago on behalf of their awareness-raising Kidney Run/Walk events across the country. They wanted to humanize the affair and selected three women with kidney disease to tell their stories in the online forum. Apparently, they were having trouble finding a man to help balance the presentation.

"Would you mind if we told your story on the site?' the DaVita marketing people asked me. Again, they never would have known that I, my crumbling kidneys, YouTube or my Little Home on the Prairie even existed if it were not for someone turning someone at DaVita headquarters onto "Just Kidneying." What a world, this Internet!

So I'm on the site, putting my manly face and personal story on the cause and effect of kidney failure. You can see the page here. When I informed my Facebook friends, always a supportive bunch, some suggested it was way better than being the Male Face of Incontinence, or Erectile Dysfunction. Jimmy Doom, a Detroit actor, writer and one of my favorite people, opined that as long as the role didn't involve wearing a mascot's costume, how bad could it be?

Others have suggested that maybe I should find a mascot's uniform. Hey, what are they saying about my face? If I can find a getup in the shape of a kidney, I'll let you know.

Mr. McFarlin Goes to Washington – Sort Of

I was shocked to say the least to receive a call Wednesday afternoon from Sally Joy, public policy consultant for the National Kidney Foundation of Michigan. Although we have never met, Sally knew way more about me than I did about her due to the first-person account of my crummy kidneys in the current issue of HOUR Detroit magazine.

(If you haven't seen the article, you can read half of it online at Best Foot Forward. HOUR only posts half its stories on the Internet during the month the magazine is on the newsstand to bait you into buying it, those sneaky rascals.)

Anyway, apparently the article has made me this year's poster child for kidney disease in Michigan, which I find the height of irony because my new medical insurance in Illinois won't pay for the tests needed to keep me on Michigan's donor list for a possible kidney transplant. Sally asked if I would consider appearing before the Michigan Legislature in Lansing next April 28 as part of the Foundation's annual Diabetes and Kidney Day.  

"I'd like you to talk about reducing risks for diabetes, high blood pressure and kidney disease by making smart choices about lifestyle behaviors," she wrote in a confirmation e-mail, "and taking the medications you have been prescribed that manage the health conditions you may have. Of course, a good dose of 'your story' intertwined is mandatory!"

Oh, that shouldn't be a problem. I KNEW there was a good reason to do this blog! I'll have my testimony in Lansing written, rehearsed and polished to a high gloss repeatedly before April rolls around.

"Is it going to be anything like Mr. Smith Goes to Washington?" Karen asked. "Probably," I replied, "but I promise not to filibuster, cheese off the legislators or pass out in a dead faint before I'm through."

The end of Sally's e-mail gave me an unexpected dose of hope as well. "Best of health to you," she wrote. "I hope that in April 2010 you're still living with a stable creatinine [level] and un-hurting feet. – Sally, kidney failure 1985 and a working kidney transplant since 1986."

Twenty-three years with a transplanted kidney? No wonder her name is Joy.