"What I have stinks, but that’s what I have to deal with"

I discovered that the line of people, bundled against the chill of the February wind, was longer than I expected when I opened the church’s door. But I should have known better as the man remembered on Saturday had touched more lives than he could have ever imagined.

Greg Winn lost his battle against a brutal form of Alzheimer’s far too soon. He was just a month and a half shy of his 60^th birthday. Not even 60 years old. Everybody thinks Alzheimer’s is just an “old person’s” disease. It isn’t. Early onset Alzheimer’s robbed an incredibly vital man of an amazing life. Yes, 59 is young. It’s very young.

I met Greg in 2006 at the Alzheimer’s support group for newly diagnosed clients and immediate caregivers. This was that magical group of folks I’ve written about before, this amazing collection of individuals who let me into their private world so that I could educate more families and the public about the wrath and pain of Alzheimer’s.

At first, I didn’t understand why Greg was there. He was a kid to me. I thought at first he was the son of a parent with Alzheimer’s, but no, he was the one with Alzheimer’s, often accompanied by at least one of his devoted sisters, all in search of answers to “why?” and support. There were few answers to “why?” but there was an abundance of support.

Before the start of the October 2007 Memory Walk, which it was called at the time, Greg and I took advantage of the warm fall day to sit down and talk about what he was facing. I wrote in my book about Alzheimer’s:

“Greg is that stereotypical perfect picture of health and vitality. He exercises regularly, eats properly, is hard-working, intelligent, generous, a dad, brother to six siblings, in his early 50s and savoring life with great enthusiasm every day. He has everything he wants and something he doesn’t want … early-onset Alzheimer’s.

“Attired in running shorts and shoes, Greg prepares to lead the crowd at the annual fall Alzheimer’s Association Memory Walk. The gorgeous sky and hot sun make it more like summer than autumn, and that brings out hundreds of supporters who vow to walk for those who can’t and those who are here in spirit only. They all have a common goal: end Alzheimer’s disease.

“You’d never imagine that behind the stylish eyeglass frames and beneath the closely trimmed haircut is a man who’s battling early-onset Alzheimer’s with every source of energy he’s got.”

Greg told me that he had a good life working in Chicago as an accountant, never missing a day of work. Then he noticed some memory problems that were beginning to affect his work. His doctor referred him for an MRI, where the technician told him, “Take it one day at a time.” He laughs at that memory before his world flipped upside down with the diagnosis.

“One day at a time … That’s all I do. What I have stinks, but that’s what I have to deal with. I’m reconciled with it. This is my plight. This is what I have to do. I still get up every morning, still work and drive. That may be a problem at one point. I’m sure it will be. Other than that, I’m doing good, I‘m in great shape, I’ve got a great family. When the news came down, they were all around me. No ifs, ands or buts. They got me down here.”

That support system included four sisters and two brothers, who grew up in a tiny house where the girls shared one bedroom and the boys the attic. After the memory symptoms snowballed, he admits he couldn’t deal with it and moved back home to be close to family.

His siblings offered substantial emotional, physical and financial support as he copes with unexpected life changes, having to find work that didn’t tax his memory skills too much. It’s not the most exciting job in the world, but “I’m doing something.”

Despite everything, he says, “I couldn’t be in a better situation.” Is it hard for him to ask for help?

“I haven’t got to that point yet, but I probably will sometime. Nobody knows. It’s just the circle of life. It’s a tough thing not knowing what’s going to happen or how fast it’s going to go.”

A few months earlier, he had traveled to Washington, D.C., to offer testimony on the need for additional funding and to show the world that Alzheimer’s does not claim only the elderly. “Just get some money. That’s what we need. I feel like I’m contributing something. I feel like I’m helping some people …”

Greg was certainly not the voice or face one would expect to help kick-off the annual walk as the growing crowd listens …

“My name is Greg, and I was diagnosed a year and a half ago.” He pauses. “Hold on. I’m having a Greg moment here and need to stop for a moment.”

“It’s okay,” a female voice calls out. He smiles.

“I have to deal with this every day of my life. It’s tough, but I don’t dwell on it. I’m doing the best I can, and I’ve got a great family. They’re helping me tremendously, and I can’t thank them enough. I’m doing all right now, but I don’t know what the future holds …”

Several of Greg’s siblings cheered him on from the crowd, so proud of their brother who had refused to hide from the world and who had vowed to make a difference any way he could.

I can still hear and see that moment, which seems so long ago, yet was like yesterday. I was teary-eyed then and on Saturday, when I sat in the filled church for a celebration of Greg Winn’s life.

While absorbing the meaning of those two very different occasions, I reflected on my own life mission as I comprehended how well Greg had accomplished his. He put a real face on Alzheimer’s and it’s brutal toll and worked so hard to draw more attention to it. And I was so blessed to know him and help tell his story in my book.

I also realized that I had accepted a calling that would lead to more moments like this, falling in love with so many individuals who would lose their battle against Alzheimer’s. I have and will shed many tears and suffer heartache at loss, but I wouldn’t change what I want AND need to do. I’ve also lost stroke, cancer, traumatic brain injury and brain tumor-brain cancer survivors who had won special places in my heart as I’ve allowed their stories to become part of me.

My soul is constructed stronger because of each of these moments and individuals. I follow one of my firm beliefs: Tissues are cheap; human relationships are priceless. I just keep stuffing my pockets and my heart …

You won the race, Greg! 

The privilege was all mine, Jim Maloof

My fingers have been poised above my keyboard frequently in recent days as I try to describe the heartache after learning of the passing of former Peoria mayor Jim Maloof, a local institution and someone with whom I had a unique and special relationship since we met in 1985.

It seems like yesterday when I stood in line for more than an hour at St. Mary’s Cathedral to give Jim and his family my sympathy after his wife, Trudy, passed away in 2001. Jim got off his stool and walked with me to Trudy’s open casket. As he took my arm, he thanked me for being someone very special to Trudy, a compliment I had carried deep inside me for a decade.

Trudy was one of the most generous and kindest women I had ever known, but she stayed out of the media limelight. She let Jim soak up all the attention, which fit his outgoing and entertaining persona well. I had the privilege of being the only reporter she “allowed” into her private world to do a story on the occasion of the couple’s 50th wedding anniversary in 1991. I was gentle, yet persistent, in trying to win her over, and someone Trudy had come to trust in my role as managing editor of the weekly newspaper.

I remember that June day so well when she and Jim invited me into their home. Like the perfect hostess, she offered fresh lemonade and wanted to make sure I was comfortable. It took her a little while, but she warmed up to my questions as the three of us engaged in conversation, laughed and even wiped a few tears.

This was also an opportunity to see another side of Jim Maloof, whose boisterous public face softened when he talked about his blood family and the countless families he and Trudy had adopted in their never-ending crusade to defeat childhood cancer through the miracle of St. Jude Children’s Research Hospital. We talked for more than two hours, and I absorbed every word and emotion.

Jim and Trudy loved the article when it appeared a few weeks later. To me, it was more than a story, but a bridge to a deeper personal connection with the family. A few years later when I became a freelance writer, Jim and Trudy were being honored at a benefit, and I was asked to do the research and interviews. It was a huge undertaking but one I relished.

A while back, I ran into Jim, and he asked what I was doing. I said I was focusing on books that deal with brain-related injuries, illnesses and diseases because there was such a need for more understanding and help for individuals and families. We had a lengthy and emotional conversation. Hugging him as I left, I added a few more topics to my book “to do list.”

Jim, I haven’t forgotten our heartfelt talk. The education I’ve received in recent years working directly with families coping with Alzheimer’s, stroke and brain injuries has laid a firm foundation that has better prepared me for other tough topics, especially the one I pledged to you that I’d fulfill. I wasn’t ready when we talked, but I am now. And I know you’ll be right over my shoulder to growl, “Get ‘er done!”

I love you, Jim Maloof, and everything about you … from your trademark stubbornness to your habit of breaking into song … from your passion for cheerleading to your compassion for those who need the most help … from your warm embrace to your command to “Get outta here!” when the conversation was over.

While you’re singing and dancing in heaven, be sure and give Trudy my love. And Jim, please don’t interrupt while God is talking. Give Him a chance to get a word in, too!

Caregivers, you are NOT alone

Hey, caregivers, you are NOT alone!

I recently met a woman whose husband has been diagnosed with dementia. She said he would forget something after a few minutes.

I said, "Yes, that often happens."

"Really? Nobody told me."

She said he misplaces things all over the house.

I nodded. "Yes, that happens all the time."

"Really? I had no idea."

She said he often refuses to shower or change clothes.

I explained that they may think they've already just showered no matter how much you deny it. Plus, many folks with dementia or Alzheimer's often forgot personal hygiene, because that part of the brain that reminded them of daily habits is no longer functioning. It's often part of the disease.

"Really? I thought I was the only one dealing with this."

The woman looked at me and tears filled her eyes.

Gently rubbing her back, I reassured her that she was not alone, that millions of other families face this and MANY other challenges every day. She smiled, relieved to know she wasn't completely adrift on an isolated planet.

And I was reassured that my life's mission to educate families is NOT in jeopardy. No matter whether it's Alzheimer's, stroke, brain injury or other catastrophic injury, illness or disease, many families are still not getting the information from the medical community that they need to survive the everyday emotional and physical challenges.

So, my job is secure to keep passing along the news that caregivers are not alone in their worries, frustrations and seemingly endless questions. It's okay to vent, inquire and even challenge the rules. That saves more lives than you can ever imagine …

Freedom and a lot of faith

I celebrate every January 7 as the anniversary of my "freedom," the day I was fired from my job as managing editor of a weekly newsletter.

It was a job that was literally killing me. I couldn't sleep or eat and was exhausted. The stress was wicked and threw me deeper into tunnels of depression. I wasn't a very good wife and mom during those final months of 1991, and my husband and son deserved far better than I was giving them.

I learned the hard way that NO job is worth endangering your health or peace of mind. But I was too afraid to step away on my own. My boss did it for me.

Sometimes we think we'll never recover from a traumatic event like that. However, sometimes it turns out to be the best thing that ever happened to us. I can vouch for that personally.

Occasionally we need a good kick in the seat of the pants to move forward in life. Life is all about moving forward and learning from the past. I needed a new direction, new purpose in life, but had no idea where to find it until I stopped long enough to "listen." I could do nothing else but "listen" to the voices and messages I had been ignoring a long time.

I've talked to many individuals, both survivors and caregivers, who have or are coping with brain-related injuries, illnesses and diseases. Many have shared that life took on a whole new meaning and purpose when the injury, illness or diagnosis happened. A job loss may not be life threatening, but the emotions can be the same no matter how our "planned" world is knocked off its axis.

Sometimes we are forced to stop, focus, plan and look deep within ourselves, and not just "deal" with everyday life. And when we do, we may hear music that we've never pay attention to before. We may feel the pulse of our own body when we tune out everything else.

The biggest lesson I've learned in the past 21 years is that we all need to create our own "freedom" from what is detracting us from really LIVING. It also takes a great deal of faith in ourselves and a higher power, whatever that is for you. The survivors and caregivers who have that duel faith are the ones that seem happier and more appreciative of the new life they're living, even if has numerous challenges.

Yeah, I know you've heard it a million times, but it's true: we are much stronger than we ever give ourselves credit. What new "freedom" are you going to seek on YOUR terms?

A mission of turning empathy into action

I've had a number of people ask the origins of my business name, "Turning Empathy into Action."

About a half-dozen years ago, I was searching for something a little more interesting than the "Write Away" I'd had since starting my freelance writing business 21 years ago this month. I examined what I was doing at the time and the bigger question of "why?"

As a writer all my life, I realized that I was delving deeper into how people interact with other, especially during challenging or traumatic times. I was captivated by the emotions and words individuals share and don't express when those human connections are needed the most. I also found myself becoming more interested in educating the public on how they can better assist individuals and families in crisis situations.

Two words, "empathy" and "action," kept repeating like a scratched record in my brain, and what emerged was a clearer definition of my life mission: how to turn empathy into action. And voila! A title was born!

I turn empathy into action by interacting with individuals and families who have endured life-threatening and life-changing experiences, especially related to the brain. They teach me much about their everyday challenges, and I do my best to educate other families, the public, and even professionals on how they can better understand and meet the unique needs of those facing brain-related injuries, illnesses and diseases, many of which can take a devastating toll.

The brain became my focus because it's the least understood and the most important organ in the body. I'm not a medical professional: I'm an expert observer of human needs and interactions. Along the way, I've discovered that the emotional challenges and pain can often be as or more damaging and paralyzing than the physical outcomes. And it's often the most overlooked aspect.

I'm determined to turn that sad fact around. So, you can see that's a BIG life mission, and I embrace it more every day.

Go out and turn some of your empathy into powerful action. It's not hard to change a few lives. It's the best feeling in the world. I guarantee it!

Back on the blog trail again

I took a detour from this blog for the last year and a half. My internal GPS decided to go on a merry-go-round ride rather than hit the real road.

Well, I'm back and eager to blog again about the subjects closest to my heart, brain-related injuries, illnesses and diseases that take a huge emotional toll on individuals and families. My life focus wasn't distracted; just my mind and fingers were for a while.

I can't believe it's been a year and a half since my father-in-law, Pepaw, died from what we thought was Alzheimer's. We learned something different, that I'll explain more about later.

I've become more immersed in working with stroke survivors and caregivers at more than 40 Retreat & Refresh Stroke Camps www.strokecamp.org all over the United States.

I've now committed myself to learning more and educating the world about the unique challenges of traumatic brain injuries (TBI).

I've fallen in love with photography as much as I adore words. I'll be sharing some of the images that have not only captivated me but transformed me at the same time. I better understand that sometimes it's best to just observe with open eyes, ears and hearts to better comprehend and help heal the "human condition."

So, keep in touch. I'm glad to be back on the blog trail again …