More than a Memoir

Patins - picture 4 copy 2Lori’s Lessons is a memoir and it isn’t.  While it does tell the story of Lori Patin’s life and of her long battle against Parkinson’s, that is not really what it’s about.

In a nutshell the story is that after fifteen years of Lori vs. PD, Parkinson’s was winning.  Lori lay in a coma.  Her family and friends thought the best they could hope for was for their sweet wife/mother/friend to come home in a wheelchair with a nurse.  Instead she is playing golf and dancing.

Parkinson’s does not go into remission.  Except for Lori.  Seventeen years after being diagnosed, she is better than she was twelve years ago.  Recognizing that she has been blessed with a miracle, Lori believes God wants her to do something with her story.  She wants other people to know how she did it.  She wants to inspire them to believe that they can do it too because she did.

Not that she is promising remission.  Her doctor, Michael Rezak, MD, PhD, is a nationally known Parkinson’s specialist.  He has seen nothing like it before and knows of no other example in the literature.

And Lori’s story is not just for Parkinson’s patients.  It is for anyone who faces a major challenge.  The principles she uses to fight PD work against other all-encompassing problems.

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Lucky me

The Patins and I wanted to meet.  They wanted to figure out if I was the one to write Lori’s story.  I knew I admired Lori’s struggle against Parkinson’s, but did I want to spend a year of my life writing about it?

When we first met, Bob very wisely decided that we should not get together on either of our home turfs, but on neutral territory halfway in between St. Louis where I live and Chicago where they live.  He calculated the distance between the two cities and divided it in half.  The closest city to the halfway point was Normal, Illinois, home of Illinois State University.

Between the time that we made the date in Normal and the day we arrived there, my daughter was diagnosed with epilepsy.  I was still reeling from shock. A teacher had contacted us to tell us about staring spells, but then she had a full out grand mal seizure.  What did this mean?  Would she be safe?  How did she live her life with this disease?  How could I help her?  She was at the worst possible age to receive a diagnosis of epilepsy.  She wasn’t a child so that I could manage her care.  She wasn’t an adult who would take a reasoned approach to managing it herself.  She was a teenager, rebellious, pushing the limits.  She kept saying, “I just want to be a normal kid.”  Doing some of the things normal kids do is very, very dangerous for someone with her condition.

And then I met Lori and Bob.  How lovely she is.  How much they care about each other.  How much her struggle mirrors my daughter’s.  How much Bob’s struggles mirror mine.  It was fate that brought us together at this critical time.  Like Lori, I can say from the bottom of my heart that I am a very lucky person within a very unlucky situation.  Her story has enlightened my life.

At first I didn’t want to write Lori’s Lessons

The idea of writing about fighting a dread disease did not particularly grab me.  Still I agreed to look into it when, a dear friend, the closest thing I have to a sister, called to ask me about doing so.  She forwarded Bob Patin’s email saying people had been after his wife, Lori, to write about “her fight with Parkinson’s,” but Lori wasn’t up to the task because of her disease.  I didn’t think I wanted to dedicate a year of my life to her story, except that something about Bob’s parting sally intrigued me:

It isn’t really a story of Parkinson’s but a story of fighting anything thrown at folks and the kind of attitude, help and processes that all combine to deal with any challenge. Parkinson’s is just the platform for the story.

At Bob’s suggestion, we met in Normal, Illinois, a neutral location halfway between St. Louis where I live and Chicago where the Patins live.  I thought, Here is someone who understands the importance of signifiers.

That day the things the Patins said inspired and intrigued me.   In the future, their words would change my life.

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Lori told me: “I am a lucky person within an unlucky situation.”  Lucky? to be struck by this cruel fate?  She went on to say, “The best thing is how it has pulled my family together.”  The best thing?  There are other good things about Parkinson’s? 

Bob said, “This disease is a teacher, and both Lori and I have surely struggled with some of the lessons, but we have learned the hard ones.”  A disease teaches you?  He also told me that Parkinson’s “is a precious gift that I could not have anticipated.”  A gift? this terrible debilitating disease?

How deeply they care for each other.  Lori’s Lesson’s is not just her story, but it is their story.  Lori said, on learning she had PD, “My first reaction was: I was scared for Bob.”  Not for herself?   Bob doesn’t just say how much he loves her, he washes and blow-dries her hair every morning.  Lucky lady.

The book would be much more than their personal struggles.  Lori said, “I have a feeling God wants me to do something with this.”  Bob said he believed their story has “An intent, a purpose, it’s meant to be.  We are being shaped by something more powerful than we know.”

I am so blessed to know the Patins and to tell their story, especially meeting them just as I was faced with my own terrible, medical challenge.

Lori’s Lessons: An Overview

When Lori Patin first received her diagnosis of Parkinson’s at age fifty-five, she wanted to cry until she died. When she made up her mind to fight the disease, her husband and caregiver, Bob, took a stand beside her. InLori’s Lessons, author Carol Ferring Shepley tells the story of the Patins’ love throughout the course of the disease and how it affected their lives.

But this memoir is about much more than Lori’s struggle against Parkinson’s disease, a progressive, incurable, degenerative disorder that affects the central nervous system. It’s also the story of someone who has faced a terrible challenge, met it head-on, and refused to concede. In the struggle, she has learned vital lessons about life itself.

Lori’s Lessons 
shares how for fifteen years, Lori fought relentlessly, but in the summer of 2011 she lay in a coma. At the time, Bob thought the best he could hope for was to bring her home with a nurse. Thanks to a miraculous remission, however, today she doesn’t even have tremors.

Offering inspiration and hope, Lori’s Lessons presents a 360-degree perspective on how Lori attacked the disease. She has taken many pharmaceuticals, but the two strongest drugs in her regimen are hope and faith.