Sunday, December 23, 2018

Jerome and the Tiger: A Holiday Tale With a VERY Happy Ending


Detroiters Jerome Espy and Bert Tiger Whitehead: Linked for Life
This is a story about a real Christmas miracle.

Or another great reason to go to church.

Or maybe a lesson not to believe everything you've heard about lawyers.

Mostly, though, it's a story about my friend, Jerome Espy, and the priceless, incomparable December gift he has been given through the most unexpected of givers.

And I'd like to think that in some teeny-tiny way, I helped.

You see, I often refer to myself (half) in jest as Kid Kidney or the Kidney Kounselor. That's because I frequently feel like the go-to authority for anybody who has a question about kidneys, dialysis or transplantation. It's an honor, but a heavy responsibility, too.

Since I was a member of the media in Detroit for decades –– "world famous in Detroit," as a Motor City friend used to describe it –– I was encouraged to describe my personal journey from Stage IV kidney failure to a successful organ transplant in publications like HOUR Detroit magazine. And since I remain fairly active in the renal and transplant communities, especially in Illinois where I now reside, I field calls and messages from friends and strangers across two states.

Frightened, confused, disbelieving calls.

Such was the case in 2014, when I received a call from Jerome. We had known each other professionally in Detroit for many years through his work as a top media spokesperson for Comcast, Blue Cross Blue Shield of Michigan and other corporations. He had received "the diagnosis," was preparing to go on dialysis and reached out to me for advice and support.

Ecstatic to help. If you know anything about my kidney experience, you know I loudly sang Jerome the praises of peritoneal dialysis (PD), the at-home option I was given and the treatment I credit with saving my life. (If I had to go into a dialysis clinic five hours a day, three times every week, I guarantee you I would not be here today.) 

Much to my gratification, Jerome chose peritoneal dialysis, too. "I've been doing the big PD for three-and-a-half years now," he reminded me. "It became my new normal."

And it might still be his normal if he and his wife, Muriel, hadn't decided to attend a birthday party for their pastor last March 10. "I remember the date because it was a day I wasn't feeling particularly well," Jerome remembers. "I was debating whether or not I even wanted to go, but we had been invited."

Jerome wound up sitting next to an attorney named Bert Tiger Whitehead IV, a men's group leader at the church. They hadn't seen each other for quite some time. When dialysis beats you up physically it's almost impossible to hide the pain, so the conversation quickly rolled around to his health status. 

"I let him know what was going on, told him I was waiting for a kidney," Jerome says. "Without skipping a beat, he said, 'Well, man, if I'm a match I'll give you a kidney.'"

After Jerome picked his jaw out of the dinner salad and thanked Whitehead, reality set in. Those in need of an organ donor know all too well that the compassionate, knee-jerk reaction of many people is, "Hey, I'll give you one of mine." Then they think about the inconvenience, the complications and the pain. Most don't follow through.

However, any man known throughout southeast Michigan as Tiger isn't likely to be lyin' about such a  serious, life-changing offer. Not only did Whitehead follow through with his testing, but he did so ...well, ferociously.

And as it turned out, Tiger was a perfect blood and tissue match. 

Now some of you may say, "What luck that Jerome went to that affair even though he didn't feel like it." "What a coincidence he happened to sit next to a man who offered to give him a kidney." "What good fortune that of all the people in Detroit, Whitehead just happened to be a perfect match." But c'mon, man: it's Christmastime. Even if you don't believe any other time of year, give Baby Jesus and His Dad some props for this, OK?

The transplant could have been performed months ago, but since surgeons would even tell Gandhi to lose some weight before an operation and because Tiger's law practice would fall into a normal slowdown around the holidays, they chose to have it done now. Besides, that gave Whitehead's daughter, Bekah, time to set up a GoFundMe page to help defray post-op expenses for both men, a campaign that blew past its target goal within a month but always can use additional contributions. 
Jerome, Heading Home. (Facebook photo)

On Wednesday, Dec. 12 at the University of Michigan, the Great Exchange took place. Tiger was released (unleashed?) two days later, Jerome the day after that. No complications, no signs of organ rejection or failure. Hallelujah. Both men are resting comfortably at home now, celebrating the Christmas season with family and dear ones.

I don't suppose Jerome and Tiger would mind me excerpting and reposting some of their comments from the GoFundMe page here. And even if they did, I'm doing it anyway. It's not as if either man can chase me down at the moment.

Tiger: "When I learned of Jerome's life with this illness, I just thought that if I could help, I would. God has given me excellent health, and I am glad to share that blessing with my friend, Jerome. I hope Jerome lives a long and healthy life with his new kidney."

Jerome: "My quality of life changed dramatically since I found out I had End Stage Renal Disease (ESRD) and was going on dialysis. Before I was diagnosed, I was living a full and vibrant life. I was working in my own business, able to travel and enjoy friends and family, and make it through the day with a modicum of energy. 

"My diagnosis changed all that.

"Having chronic kidney disease is horrible on my body and my energy levels. Dialysis is not normal. It is anything but normal. Throughout the process, my wife, family and I believed solidly that God was going to make a way for me to return to a normal life. 

"Even though I have seen a number of friends die of the same disease over the time I have been on dialysis, I believed the promise God gave me. I stood strong on the Scripture in Psalms 118:17: 'I will not die but live, and will proclaim what the Lord has done....'

"I don't believe in coincidences, but I do believe in divine intersections. This relatively common birthday party turned into an uncommon miracle for me and my family. To someone who doesn't understand, four years on dialysis may seem like a long time. But in the scope of what God has planned, He had a divine plan put in motion already on March 10.

"It takes a special person to give part of their body to someone else. And I am eternally grateful for the gift Tiger and his family are giving to me. 

"This transplant is going to change my very existence. It will change my overall health, my outlook in general and my focus on life. My God, through Tiger, is saving my life. And I know I will never forget the gift that is being given to me or the idea that there is purpose for God extending my life."

Jerome told me he has been "going around and thanking everyone who had anything to do with helping me along the journey." (Myself included. I'm honored.) He's in the process of finishing a book about his journey. And, like me and many people who have experienced the miracle of an organ transplant, he's looking to give back and become involved in the transplant community. 

"One of the first things I saw when I began this process was the Transplant Games," he says. "I made up my mind that night I was going to set my sights on competing in the 2020 Games at the Meadowlands. It's not a competitive thing, it's just the idea of being able to do it. I know I'll do cycling. I used to swim quite a bit, but I haven't swam in four years. So maybe swimming, and some track and field events as well."

Whatever Jerome attempts, I hope he wins a medal. He deserves it. In fact, both he and Tiger deserve Espy awards.

Sunday, November 18, 2018

HAPPY TRANSPLANTIVERSARY TO ME! (I Didn't Forget This Year!)

Can you even imagine ever forgetting your own birthday?

I have. For several years, I'm embarrassed to admit.

My second birthday, that is.

Anyone who has received the miracle of a kidney transplant, or donated one of his or her organs so that a fellow human being might live, knows exactly what I'm talking about.

Sunday, November 18, marked the seventh anniversary of my kidney transplant at Barnes-Jewish Hospital in St. Louis. My second birthday. Because when I remember how miserably sick I was suffering from Stage IV kidney failure, how dependent I was on the short leash of dialysis, and how my entire body, mind and spirit seemed to gulp from the Fountain of Youth after my surgery scars healed, for me the transplant really was like being born again.

My amazing wife Karen – or "Bewee," for "BestWifeEver," as she is widely known online – was my absolute rock through more than two years of daily dialysis, medical tests and consultations, depression, weakness and disappointments. Together we decided to name my lifesaving new arrival Cheyenne, in part after the donor, in part because my transplant felt like the hero who arrives to save the day in one of those old-time Westerns.
Bewee and Me, Moments After Awaking With Cheyenne.

My kidney came from a six-year-old girl – yes, you read that right – who went to school one day completely healthy, suffered a brain aneurysm on the playground and died on the spot. I can't begin to comprehend the depth of heartbreak, disbelief and devastation her parents must have felt during that time. Yet somehow they mustered the courage and selflessness to ask themselves, "How can our child's brief life benefit others' lives?"

I am beyond thankful that they did. Because not only was her kidney a perfect match for me (your ideal genetic match is not always within your family, contrary to conventional thinking), but thanks to the God-given marvel that is the human body, over the course of a year or so her tiny kidney increased in size within me to accommodate the needs of my (much) larger frame.

Cheyenne not only prolonged my life, she renewed my faith.

However, just as time heals all wounds, it also fades difficult memories, especially when the good times feel so good.

For the first few years post-transplant I viewed 11/18/11 as the most important day of my life, more important even than my actual birthday. (June 15, in case you want to circle your calendar). But year after year of outstanding medical reports –– my creatinine level currently stands at 0.9, a boast only other kidney people truly appreciate –– reductions in my medications, a totally unrestricted diet and an overall sense of well-being could have lulled me into thinking I was a normal healthy person.

In which case I would be a fool.

If that really were the case, would I still be taking two types of anti-rejection pills every single day, or still be required to have my blood drawn every month to check on my kidney function? Would Cheyenne continue to kick or ache every so often, just to remind me she's not original equipment? (Hey, she's only 13, and adopted; she's at that rebellious, awkward age.)

I'm thinking not.

Yet on one recent Nov. 18, I received a four-word text message from Bewee that sent chills through my body.

It simply read, "Happy Transplant Day, Darling!" 

It shocked me, because I had completely forgotten about it.

Does this mean I've become complacent? Uncaring? Ungrateful?

No. I like to think it means just the opposite.

In my view, I have been given a seven-year extension (and counting) on this amazing experience called life. I know that by all rights I should not be here, and every morning when my feet hit the floor I am thankful for one more day. Before my kidney disease and transplant, my focus on every day was never that sharp. That was when I was taking life for granted.

And as I weave through the renal community, attending board meetings for The Renal Network ESRD Network 10, representing the National Kidney Foundation of Illinois, volunteering for Illinois Secretary of State Jesse White's "Life Goes On" initiative, visiting dialysis clinics, talking to kidney patients who are struggling on dialysis or post-transplant, I believe God is using me and my communication skills to offer information and encouragement to others. I guess I've become an advocate.

I'm a living example of what standing on the other side looks like. And I'm determined to remain active in that role for as long as He lets me.

So it's really not that I forget my transplantiversary. It's that the exact date becomes less important because the commitment is ongoing. I would prefer to celebrate what I'm doing than what has been done to me.

However, the first thing I saw this Nov. 18 was a text message from my dear friend, the internationally known evangelist (currently pastoring a church in my mother's hometown of Stone Mountain, Ga., like that's a coincidence), Richard Allen Farmer.

"Happy Transplant Day," it read. "Seven years ago today you were given a new lease on the building that is your body. I am glad you're alive, so you could be my friend."

Awww. So I couldn't forget this year if I wanted to.

Not one day do I ever take Cheyenne, my beloved little lodger, for granted. She wouldn't let me. However, as in all relationships, it's not enough to just think about how much your beloved means to you. You've got to express it as well.

So Happy Second Birthday and Transplantiversary to you, Cheyenne. To us both.

And many more.

HAPPY BIRTHDAY, CHEYENNE! (Hey, I Didn't Forget This Year!)

Can you even imagine ever forgetting your own birthday?

I have. For several years, I'm embarrassed to admit.

My second birthday, that is.

Anyone who has received the miracle of a kidney transplant, or donated one of his or her organs so that a fellow human being might live, knows exactly what I'm talking about.

This Sunday, November 18, marks the seventh anniversary of my kidney transplant at Barnes-Jewish Hospital in St. Louis. My second birthday. Because when I remember how miserably sick I was suffering from Stage IV kidney failure, how dependent I was on the short leash of dialysis, and how my entire body, mind and spirit seemed to gulp from the Fountain of Youth after my surgery scars healed, for me the transplant really was like being born again.

My amazing wife Karen – or "Bewee," for "BestWifeEver," as she is widely known online – was my absolute rock through more than two years of daily dialysis, medical tests and consultations, depression, weakness and disappointments. Together we decided to name my lifesaving new arrival Cheyenne, in part after the donor, in part because my transplant felt like the hero who arrives to save the day in one of those old-time Westerns.
Bewee and Me, Moments After Awaking With Cheyenne.

My kidney came from a six-year-old girl – yes, you read that right – who went to school one day completely healthy, suffered a brain aneurysm on the playground and died on the spot. I can't begin to comprehend the depth of heartbreak, disbelief and devastation her parents must have felt during that time. Yet somehow they mustered the courage and selflessness to ask themselves, "How can our child's brief life benefit others' lives?"

I am beyond thankful that they did. Because not only was her kidney a perfect match for me (your ideal genetic match is not always within your family, contrary to conventional thinking), but thanks to the God-given marvel that is the human body, over the course of a year or so her tiny kidney increased in size within me to accommodate the needs of my (much) larger frame.

Cheyenne not only prolonged my life, she renewed my faith.

However, just as time heals all wounds, it also fades difficult memories, especially when the good times feel so good.

For the first few years post-transplant I viewed 11/18/11 as the most important day of my life, more important even than my actual birthday. (June 15, in case you want to circle your calendar). But year after year of outstanding medical reports –– my creatinine level currently stands at 0.9, a boast only other kidney people truly appreciate –– reductions in my medications, a totally unrestricted diet and an overall sense of well-being could have lulled me into thinking I was a normal healthy person.

In which case I would be a fool.

If that really were the case, would I still be taking two types of anti-rejection pills every single day, or still be required to have my blood drawn every month to check on my kidney function? Would Cheyenne continue to kick or ache every so often, just to remind me she's not original equipment? (Hey, she's only 13, and adopted; she's at that rebellious, awkward age.)

I'm thinking not.

Yet on one recent Nov. 18, I received a four-word text message from Bewee that sent chills through my body.

It simply read, "Happy Transplant Day, Darling!" 

It shocked me, because I had completely forgotten.

Does this mean I've become complacent? Uncaring? Ungrateful?

No. I like to think it means just the opposite.

In my view, I have been given a seven-year extension (and counting) on this amazing experience called life. I know that by all rights I should not be here, and every morning when my feet hit the floor I am thankful for one more day. Before my kidney disease and transplant, my focus on every day was never that sharp. That was when I was taking life for granted.

And as I weave through the renal community, attending board meetings, volunteering for Illinois Secretary of State Jesse White's "Life Goes On" initiative, visiting dialysis clinics, talking to kidney patients who are struggling on dialysis or post-transplant, I believe God is using me and my communication skills to offer information and encouragement to others. I'm a living example of what standing on the other side looks like. And I'm determined to remain active in that role for as long as He lets me.

So it's really not that I forget my transplantiversary. It's that the exact date becomes less important because the commitment is ongoing. I would prefer to celebrate what I'm doing than what has been done to me.

However, the first thing I saw this Nov. 18 was a text message from my dear friend, the internationally known evangelist (currently pastoring a church in my mother's hometown of Stone Mountain, Ga., like that's a coincidence), Richard Allen Farmer.

"Happy Transplant Day," it read. "Seven years ago today you were given a new lease on the building that is your body. I am glad you're alive, so you could be my friend."

Awww. So I couldn't forget this year if I wanted to.

Not one day do I ever take Cheyenne, my beloved little lodger, for granted. She wouldn't let me. However, as in all relationships, it's not enough to just think about how much your beloved means to you. You've got to express it as well.

So Happy Second Birthday and Transplantiversary to you, Cheyenne. To us both.

And many more.

Friday, August 10, 2018

O Brother, Where Art Thy Heart? Wish I Could Get You a New One

Family Reunion: My Brother Lonnie, Sister Jacqui (Umi), and Me.  
I'll wager even most of my closest friends don't know that I have an older brother.

There are at least two very good reasons for this.

One, to the best of my recollection, none of my friends have ever met him.

And two, I was raised as an only child.

I'm sure those explanations require their own explanations, but before I get to that let me get to this: my brother, Lionel – or Lonnie, or Limabean to his besties – is in desperate need of a heart transplant.

He was diagnosed with congestive heart failure two years ago and currently is on the transplant waiting list at Spectrum Hospital in Grand Rapids. Even when a match is found, however, he still will need additional funds to pay for the hospital expenses and medications his insurance will not cover.

So a GoFundMe account has been established on his behalf in hopes of raising at least $10,000 for his medical bills.

Click here for the link to Lonnie's GoFundMe page. Please give if you can, and generously. Any amount at all is deeply appreciated. And as always, I would never ask you to do something I wouldn't do myself.

And do you find it bizarre and incredible, as I do, that two siblings should grow up to both need organ transplants –– for different organs? What is that, bad blood? Weak cells? Damaged DNA? Whatever the cause, I only pray that my brother may find an organ donor as perfectly matched and life restoring as I did.

And soon.

Which kind of brings us back to where Mr. (Lima) Bean has been all my life. Now, I don't know if this story is completely accurate, but it's the one I was told growing up:

Lonnie and my sister, Jacqui –– better known as Umi (OO-mee) to practically everyone in and around Muskegon, Mich., including her 19 grandchildren and eight great-grandchildren –– were very young when our father walked out on them and my birth mother, Josephine. Only Josephine wasn't technically my birth mother at the time, since she was still pregnant with me.
Lonnie and Jacqui. Notice who's not in the shot.

Josephine could barely afford the two kids she had, much less a new rugrat. And while I stand foursquare in favor of a woman's right to choose, I am sooo thankful she made the choice she did, else I would not be here telling you this story. Rather than flush me away, she delivered me and almost immediately put me up for adoption to a wonderful older couple in tiny Spring Lake, Mich., about 15 miles from Muskegon. These were the McFarlins, my Mom and Dad, and a better set of parents you would be hard-pressed to find.

(I never knew my birth father. Wouldn't recognize him if he came into my office right now and poked me in the eye. Although if he tried, since he'd have to be pushing 90 these days, I'm pretty sure I could dodge him.)

Now, here's where a curious thing happened. Because our two towns were so close, and because the McFarlins knew Josephine's parents, my maternal grandparents, very well (that's kind of how the adoption was arranged, practically through a handshake deal), I grew up knowing my birth family, unlike many adopted children. Indeed, we often gathered together to share birthdays, holidays and other special occasions. And for about a week every summer vacation, we would alternate: I would go to Muskegon and stay with Josephine and Jacqui, or Jacqui would come to Spring Lake and visit with us. When you're a little kid, you can't have enough people loving you.

Where is Lionel in all this, you ask? Well, Lonnie was the oldest sibling, the man of the house, and I don't know how much time he spent playing with Jacqui growing up but I know he didn't much have much tolerance for a bespectacled little nerd who showed up once a year, baby brother or no. And Spring Lake was way too slow for his speed. Like most kids, he much preferred to be in the streets, running with his boys, than babysitting some intruder.

So I didn't see much of him. I totally got it. But I remember my "vacation" weeks in Muskegon as terrifying. Josephine was a single mother and had to go to work every day, leaving me in the custody of Jacqui and Lonnie. They weren't what you'd call homebodies.

They had to take me with them, and I recall being left in alleys, stores, strange houses full of people I didn't know...for sheltered Little Jimmy, who'd rather be reading a book through his Coke-bottle glasses or watching cartoons in the living room.... I may still have PTSD.
My brother, Lonnie, today: Take heart. 

But now that we're all old folks, I've grown to respect Lonnie a great deal and the man he's become. He absolutely loves to hunt and fish (how can we possibly be related?), and can no longer fully pursue his passions. His quality of life, indeed the joy of life itself, has been seriously curtailed by his illness and reduced activity level.

My brother has a good heart, emotionally speaking, but the original equipment in his chest is failing him. He needs a new heart, quickly, and the ability to afford all the ancillary equipment and supplies that a transplant requires.

Again, here is the link to the GoFundMe page to support Lionel. Please give if you can; any amount is appreciated.

I know you may not know him, but I do. And he's a good man.

Saturday, July 28, 2018

Remembering The Day That Alan Trammell Changed My Life

No. 3 is Now No. 1: Tigers Legend Alan Trammell. (Ezra Shaw/Getty Images)
On Sunday, July 29, at about 2:32 p.m. or so EST, Alan Trammell will be inducted into the National Baseball Hall of Fame.

Finally.

But Alan Stuart Trammell has been a Hall of Famer in my book for a long, long time before that. 

Not just because he is undeniably the greatest shortstop in the history of my beloved home (state) team, the Detroit Tigers. Not only because of his .285 lifetime batting average, 185 home runs, four Gold Gloves or six All-Star appearances. Not because he spent his entire 20-season career in Detroit, or because he led the squad that brought a World Series championship to Motown in the Roar of '84, capturing Series MVP honors in the process.

No, Alan Trammell will always be a hero to me because of a brief, easily forgotten, on-field exchange at least 35 years ago that impacted me so dramatically that I believe it altered my basic outlook on life.

Perhaps I should explain.

But first, please understand that Trammell and his double-play partner, Lou Whitaker (whose omission from Hall of Fame consideration is nothing short of criminal, IMHO) were my Boys of Summer. We were young, ambitious men at the same time in life. I still vividly remember that iconic (in Detroit) photo of the fledgling double-play combo, side by side and grinning like kids at a carnival, just called up from Toledo and preparing to make their major league debuts together on Sept. 9, 1977.

Tram and Sweet Lou were more than just extraordinary ballplayers I followed every day of baseball season on radio, TV or in person; they were contemporaries. We grew up in Detroit together. So when my friend Larry Kaplan, who was then one of the city's best-known freelance photographers, told me he had wheedled an extra media pass for Tiger Stadium and asked if I wanted to join him on the field during batting practice, of course I said no.
This isn't the "iconic" photo, but you get the idea. (Getty Images)

Are you kidding? 

At the time I was working as the pop music critic for The Detroit News, which at the time was the largest evening daily newspaper in America. I had interviewed countless rock 'n' roll icons face to face, been backstage at hundreds of concerts, but nothing had geeked me up quite as much as this opportunity. Now I was grinning like a kid at a carnival.

The shifting sands of time have pounded my brain to the point that I cannot remember the date or the opponent, but I recall it was a day game and I'm guessing it happened sometime in 1983, the year before the Tigers magical championship run. I completely remember the look and feel of the Tiger Stadium grass beneath my feet, the tingling sensation all over my body. Sportswriters do this every day. I felt like I had been granted special access to the Taj Majal.

The first player we saw on the field was Trammell, casually waiting his turn in the batting cage. Kaplan walked me up to him and asked me, "I guess you know who this is, huh?"

I was trying to be cool, but if I'd had an autograph book with me I totally would have made a gushing idiot out of myself. I was so awestruck it never occurred to me to ask the photographer with cameras around his neck to take a picture of the two of us. I may have stuttered.

Then came the moment. "Jim is the rock critic for the News," Kaplan explained. 

Alan Trammell's face brightened. His eyes opened wide. "Rock critic? Really? So, do you go to all the concerts? Do you go backstage? Do you get to talk to the musicians? Who have you seen lately? Who do you like?"

Suddenly, my hero, my baseball idol, is peppering me with questions about my job and how I did what I did. I was shocked! I'm sure I blurted out answers as best as I could, but this unexpected role reversal caught me totally by surprise. After a few moments, Trammell and I shook hands and Kaplan walked me away. 

I think I needed the assistance.

That encounter, while just seconds long, left me with some valuable insights I've kept to this day:

• No matter what your job may be, there is somebody out there who thinks it's really cool.

• Don't take your work for granted.

• Be gracious to others, especially when you can detect that they're nervous.

• Even a momentary encounter can change somebody's life – for better or worse.

• Strangers may only meet you once in life. Strive to leave a great first impression.

Back then I'm pretty sure my ego was inflated beyond all logical proportions. For a guy from little Spring Lake, Mich., to work his way up to becoming music critic at a major daily newspaper, in his home state, and a person of color at that...I probably believed my feces had no odor. But then for a man I believed could be justified to feel that way, to treat me like he did for those few moments...decades later, I've never forgotten it. I still use those principles today as I travel the country on speaking engagements and stand as an advocate for kidney disease prevention, peritoneal dialysis and organ transplantation. 

As big a baseball freak as I am, I never have had the urge to travel to Cooperstown, N.Y., for a Hall of Fame induction ceremony. I seriously thought about going this year, but I also work as a wedding officiant these days and accidentally scheduled a vow renewal ceremony in Chicago this weekend.

Rats.

Jack Morris, the dominant right-handed pitcher of his era and a longtime Tiger as well, also is being inducted to the Hall of Fame on Sunday. It's a well-deserved honor. But even Morris admits now that back in his heyday he was kind of an ass. Wonder how my outlook on life might have changed had I met him first?

No, if I was in Cooperstown this weekend it would be for Tram and Tram alone. I am there in spirit. 

Thanks for the memories, Alan Trammell. All the memories.

Saturday, April 28, 2018

I Oughta Be in Pictures? For a Cause as Great as This, of Course!

Before we begin...to all my besties, acquaintances, and anyone else who knows me as a proud native son of Michigan, I apologize in advance. But please allow me to explain.

What you're about to see on this embedded video may give you pause to believe I have turned my back –– and the sweatshirt that covers it –– on the Great Lakes State. Nothing could be further from correct. I was born in Muskegon, raised in Spring Lake, summered in Grand Haven, matriculated in Holland, and spent the majority of my adult life in Detroit. The blood that courses through my veins is Pure Michigan.

However, in the video you're about to click, you will see Jim McFarlin clad in (I can hardly bring myself to write it) a University of Illinois hoodie. While it's true I have lived outside of Chicago for the better part of a decade, I assure you I have not crossed over to the dark side of the Big Ten Conference.



This was clearly a "when in Rome" –– or in this case, Champaign-Urbana –– situation.

You see, I am a member of a committee called Life Goes On Champaign, an outgrowth of legendary Illinois Secretary of State Jesse White and his passion to increase the number of Land of Lincoln residents who register to be organ and tissue donors. White's obsession was fueled when his sister received a life-saving kidney transplant many years ago. And since I received the identical miraculous gift in 2011, I'm a big fan of the effort myself.

(For more information, go to LifeGoesOn.com.)

Since April is Donate Life Month (you did know that, right?), White and his people unveiled a new ad campaign and video highlighting the fact that as of January, 16- and 17-year-olds are permitted to register as donors in the state of Illinois.

Liz Hager, White's wondrous right-hand woman and our committee chair, connected with a delightful University of Illinois undergrad named Bridgette Rasmussen who volunteered to help produce a separate public service announcement on behalf of Illinois Student Government, specifically for the U of I Union. It would alternate with the official Life Goes On PSA and air continuously throughout the Union, to be seen by thousands of collegians.

Since I am one of the few men on the committee, and by far the biggest ham in the room, I happily volunteered to participate.

Because it was going to be shown exclusively on campus, I decided to dress the part for the video shoot. All right, yes, I was sucking up...but for a good cause!

I donned my orange-and-blue-on-gray Illinois hoodie –– the only piece of Illini apparel I possess, and I only wear it to work out, I swear! –– and drove to the university's creative services office for the taping. I would be joined by my fellow committee members, Lauri Umbarger and Robyn Deterding.

Now let me say at this point that I enjoy many things about growing older gracefully, but total loss of memory is not one of them. I elected to run a few quick errands before driving to the U of I studio, ensuring I would arrive early for our 4 o'clock taping.

That is, until I casually glanced at my calendar while stopped at a red light. The taping was set for 3 o'clock! I forgot! Instead of being comfortably early, I stood to be nearly an hour late!

I raced to campus, found a parking place several blocks away –– looking for parking at a major university in mid-afternoon can bring a grown man to tears –– then ran to the studio, arriving flustered and out of breath. My only saving grace was, as I knew from experience and hoped in this instance, that video shoots almost never start on time.

Thankfully, I was right. And by the grace of God I was scheduled to be the last person taped, which gave me time to right myself. The script, loaded onto a TelePrompTer, was simple and straightforward, which meant I could read it slowly and give it some sincerity. I wasn't half bad, if I say so myself, but you be the judge.

Apparently, the video crew thought so. When we were finished, the director stared at me and asked, "Have...you...done this before?" I explained that yes, I used to do some voiceover work in Detroit and hosted shows both on TV and radio.

He asked for my business card.

Wouldn't it be a hoot if volunteering to play a part for a cause I feel so strongly about led to getting some paying work as well? Talk about paying it forward!

But hey, like they say: Life Goes On.

Saturday, December 2, 2017

Make a List of All You Do. The Results Might Surprise Even You!

Micheal and Me: With the Amazing Micheal Turner
CHICAGO – Recently I was here to attend the annual meeting of The Renal Network ESRD Network 10 Board of Directors, on which I am proud to serve as a patient representative.

The Renal Network is a not-for-profit organization tasked with monitoring the quality of dialysis care in Network 10, which covers the state of Illinois. (There are 18 such networks nationwide, all under the direction of the Centers for Medicare and Medicaid Services (CMS), responsible for every U.S. state, territory, and the District of Columbia.) I've been affiliated with Network 10 in one form or another almost since my kidney disease and I moved to Illinois in 2009.

I am one of two patient reps on the board. The other is a gentleman named Micheal Turner, of whom my admiration knows no bounds. He's the Real Deal, a true believer, a warrior for patients' rights. Sometimes I'm almost jealous of Micheal because he still has such an active, caring, hands-on role in his dialysis clinic. He rallies and organizes his fellow in-center hemodialysis  patients, acts as liaison between patients and staff, follows up on grievances.

Then again, being as fully engaged as Micheal Turner means I probably would be on dialysis again.

Never mind. You go, Micheal. 

Typically speaking, neither he nor I get to do a lot of talking at these board meetings. It's not that we aren't valued, as has been the case at some other meetings I've attended where nephrologists, dialysis nurses and other health professionals look at patients as a necessary evil, or at worst, an annoyance to be patronized. It's just that Network 10 has undergone some major structural changes the past few years and much of our time has been spent in organizational details, rewriting bylaws, that kind of thing.

Not this time. A few days before the meeting, our executive director, Bridget Carson, emailed me and said she would like to begin the agenda with a "patient rep update." It would be an opportunity to introduce the new board members – and many of the old ones, I'd wager – to who we are and our activities outside the boardroom.

And give us a chance to speak, too.

Open a Magazine and See Your Face? Cool, But Creepy. 
So the night before, in my Chicago hotel room, two extraordinary things happened. I picked up the latest copy of CS (Chicago Social) magazine, one of those glossy local publications found in every Windy City hotel room and one for which I write, and much to my surprise found my little brown mug staring back at me from the contributors' page! Magazine deadlines are so far in advance that I'd forgotten I had even written a story for that issue. That'll wake you right up!

The other thing was, now completely awake in my cool, quiet room, I actually had time to think about all my kidney-related activities and jot them down in advance of my meeting moment.

In addition to sitting on the Network 10 Board of Directors:

• I'm a "subject matter expert" in the area of patient mental health for the Florida-based National Patient and Family Engagement Learning and Action Network;

• I remain involved with the National Kidney Foundation of Illinois (NKFI); I will be delivering the keynote address December 2 in Champaign for their seminar entitled, “Living With Kidney Disease and Transplantation;”

• I served a two-year term as the ESRD (End-Stage Renal Disease) patient representative for the state of Illinois. Yeah, the whole freakin' state. While largely a ceremonial position, the title allowed me in the front door at many dialysis clinics throughout the state, where I got to meet and talk to dialysis patients of all stripes;

• I completed the training to become an ambassador for Gift of Hope, the organ and tissue donation network for Illinois and northwest Indiana;

• I'm the acting secretary for my local NKFI Champaign kidney disease and transplantation support group,

• And, of course, when time, topic and energy combine, I still maintain this blog, which played a major role in allowing me to win the Robert Felter Memorial Award from The Renal Network in 2011 for outreach and information to the kidney community.

I say all this not to strain my shoulder by patting myself on the back. It's just that sometimes when you're running the race, you don't stop to notice how far you've traveled. I really had no idea about how many renal-related activities I was and am involved with until I took time out to write them down.

I still prefer the personal touch myself. Over the past five years or so, I've become sort of Kid Kidney, medical advisor to friends and acquaintances far and wide. Many of my younger years were spent with people who rocked hard and partied harder, and it seems all our bodies are breaking down about the same time. 

I'll bet I field at least three calls or messages a month from old buddies, people they've referred, even total strangers, who have just been diagnosed with some stage of kidney disease and want to talk about dialysis and transplant options. "They're just scared," comes the usual explanation. "They know you've been there before." I'm honored by their trust. I always advocate peritoneal dialysis (PD), the option that saved my life.

Of course, that option is not always available. Not long ago I received a call from a dialysis nurse I know. She had a patient – we'll call her Sally – who was on the verge of ending her hemodialysis treatments. She lived alone, and she had grown tired of the draining three-times-weekly clinic visits, securing transportation, the physical and emotional highs and lows. She was ready to pack it in. "Could you just come and talk to her?" the nurse asked.

What the heck could I tell her? But I met Sally during her next dialysis treatment. "I'm not here to tell you what to do," I began. "I just wanted to meet you and talk." 

Sally said she couldn't do PD because she couldn't handle the equipment and heavy boxes of fluids by herself. She was retired, and tired, and just didn't see any future for herself. We talked for 30 minutes or so; actually, I probably did most of the talking. As I left I handed her my business card and invited her to attend one of our monthly support group get-togethers. I left feeling like I had accomplished nothing whatsoever.

Two days later, I received a call from the dialysis nurse. "What did you say to Sally?" she asked enthusiastically. "The whole session, she kept saying, 'Jim said this,' and 'Jim said that.' She seemed like a totally different person."

I'll never get board of meetings like those.