The wheel of life

Lori and I talked a great deal about how she thinks about fighting Parkinson’s. She fights it with her whole life – mind, body and soul.  While that is a very hard concept to wrap the mind around, the best way she could make me understand was the metaphor of a wheel.  All of her efforts combine to crush down on her enemy with the rim of this wheel. Every spoke of the wheel contributes to the crushing power of the rim to fulfill Lori’s goal of living a full, normal, joyful and healthy life.  Lori’s wheel has five spokes: medicine; friends and family; caregivers; exercise, diet and sleep; and attitude and spirituality.  The beauty of this metaphor is that all five spokes work together.  There is no hierarchy; each spoke is as important as all the others.

My daughter who is training to teach yoga was really taken by this metaphor. She explained that yoga teaches a wheel of life broken into eight parts.  It is important to have all eight parts in balance.  Although Lori talks about five parts, there are really eight. One spoke is friends and family, another exercise, diet and sleep.  If you separate those, Lori’s wheel has eight parts too.

Moreover, Lori’s eight-fold wheel has parallels with the yoga wheel. For the yoga wheel’s recreation, Lori’s wheel has exercise.  For community, Lori has friends.  For health, eastern and western medicine; for relationships, family; for personal growth, attitude; both have spirituality.  They differ in that the yoga wheel has career and money while Lori has diet and sleep. That is quite a substitution.
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Just Begin

MandalaStarting is always the hardest part of writing anything.  I had this great, inspiring story, but how to tell it?  I was lucky enough to spend lots of time with the Patins.  I got to stay at their house and interview their daughters.  I met their closest friends and their pastor.  I had pages and pages of notes, tape-recorded interviews, research on Parkinson’s and memories of times spent together.  A mass of material.

How to give it form?  How to present it so it grabbed the reader and didn’t let him down until he finished the book?

Over the years, the Patins have come up with a coherent method to fight their enemy, Parkinson’s.  It is so coherent that it translates to any major life challenge.

Yet I was certain this was more than a how-to book.  Lori ‘s story is so much richer than a step-by-step guide to holding P.D. at bay.  She is so modest that she would never presume to tell people how to change their lives.  She offers up the details of her struggle hoping that people will think: If she can do it, so can I.

It wasn’t just a memoir either.  While Lori’s life story is integral to the book, it is not just about Lori’s life.  Organizing the material along the timeline of Lori’s life would hide the real meaning of this story.

And then I had to include the lessons.  Lessons kept coming up again and again.  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.  The harder they are, the more we learned to team up against the challenge.”

How to combine all these themes?  The best way is to get off to a good start and set the form.  I thought and thought and decided to write the way I would tell a friend.  I kept coming back to an idea Lori told me early on: she thinks of a wheel when she conceptualizes her fight against Parkinson’s.  So I started off by setting the story straight, the way I would to a good friend, and then began to write about the wheel of Lori’s life.  The lessons just fell into place along the way.

Lesson 20: Why Me?

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Sometimes I have a down day when I struggle with the many responsibilities of caregiving.  Then I feel sorry for myself because my life seems consumed by my new duties.  It is not a pretty way to feel, and I am not proud of myself when I indulge in self-pity.  Ordinarily exercising lifts my spirits if I feel a little down, but recently I had a cough that kept me out of the gym.  I had to find other means of chasing away the blues.  So, I turned to the lessons in the back of Lori’s Lessons and then spent some time talking to a friend.

I draw great comfort from Lesson 20: The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it.  He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me?  What did I do to deserve this?”  They have to set that aside and move on, for themselves as much as for you.  Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.

            I feel so small and petty when I feel sorry for myself, but reading that every caregiver goes through this comforts me.  Also I found the advice about not repressing these emotions very helpful.  Pretending these emotions don’t exist could be destructive.  If I deal with them, I will be able to move on.

So I spoke with a wise friend and told her about my emotional struggle.  She lost her mother a few years ago and took very good care of her while she was dying.  She told me it was often painful, but now she is so glad she was able to be present for her mother at that point of her life.  The experience has deepened my friend and given her many tender moments to reflect upon.   I felt so much better after being reminded to consider the beautiful times my mother and I have together.

A Holistic Attack on Parkinson’s

I did a Google search of holistic medicine because so many people have told me that Lori Patin’s approach to Parkinson’s seems holistic.  Dr. Google taught me that holistic medicine focuses on the whole person, not just the malady.  Holistic health is a way of life.  It addresses not just the body, but also the mind and soul.  All work together for health.  Some practitioners actually mention ‘love’ as part of their therapy.

If ever a person takes a holistic approach to Parkinson’s disease, she is Lori Patin.  I have often said Lori’s story is a love story because she and her husband, Bob, love each other so.  With that love underscoring every aspect of her treatment, she explores all possible means of supporting her body’s natural healing systems from medication to exercise to prayer.  Lori made a contract to fight to the death against Parkinson’s disease.  She lives that contract every minute of every day, even in her sleep.   Because Parkinson’s causes REM sleep disturbances, she addresses this by practicing good sleep hygiene and maintaining a consistent bedtime of nine p.m. To keep herself at peak functioning levels, she needs to be asleep at least eight, preferably nine hours.Lori and Bob

Lori uses her mind to heal her body when she relies upon Western medicine and Eastern medicine as well, attending seminars and studying the literature looking for new treatments.  Lori feeds her soul and her mind when she enlists the aid of friends and family in her struggle.   She seeks out their company, sharing her joys and fears with them, and thus draws strength from the bond. Together with her sleep regimen, Lori lives a judicious lifestyle to keep her body healthy by exercising for hours every day, doing strength training as well as tai chi and ballroom dancing for balance.  In addition, she eats thoughtfully and maintains a gluten free diet.  To enhance wellness, she takes acupuncture, deep tissue massage and Feldenkrais® treatments every week.  She engages a deep spirituality to maintain her health.  Yet her faith is very personal.  She told me, “As for reading the Bible, I can just as easily sit and look at the flowers in my garden and pray because something miraculous happened after I put a seed in the ground.  They are miraculous to me.  To look at them is to pray.   I pray all the time.”

Under attack by this ruthless opponent, Lori Patin fights back in every possible way – body, mind and soul.   She doesn’t have the option of running away from Parkinson’s.  So she meets it head on with every resource in her arsenal.  And the best weapons Lori has are hope and faith and her amazing positive attitude:  “Hope for the best; plan for the worst; and have faith that there are forces at work that are with you and forever on your side.”

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.