A few days ago I received an email from Lori and Bob Patin asking for advice. With a book signing coming up, they wanted suggestions for brief remarks. I thought about what I would say: the most important thing about Lori’s Lessons is that it is inspiring. Lori put it in a nutshell when she said “This happened to me for a reason. I have a feeling God wants me to do something with this.” She made this statement on her way home from visiting her doctor who had just told her that he had never see such improvement in a Parkinson’s patient nor did he know of anything like it in the literature.
Lori is a humble person so I do not expect her to tell the audience that her life story is inspiring. Perhaps Bob can say it for her.
I know countless people whom she has inspired, myself among them. As I have struggled to give care to my daughter with epilepsy and my mother with Alzheimer’s, I have reread both Lori and Bob’s words. Their example lifts me up and helps me do what is best for my mother and daughter and for myself. Sometimes I feel sorry for myself, but it helps to hear Bob acknowledge that all caregivers do. His advice also helps me remember to do good things for myself as well as for Mom and Mimi.
To set out to inspire others seems a heavy task. Yet, when I looked up the word in the dictionary, inspiration is also light. In my favorite Merriam-Webster from the 1920s, the first definition of inspiration is: “the act of breathing in.” The second meaning is: “A supernatural divine influence on the prophets, apostles or sacred writers by which they were qualified to communicate truth without error.” The third meaning is the one we most commonly associate with inspiration today: “Act or power of exercising an elevating influence upon the intellect or emotions.”
From the first two definitions, I understand that inspiration should be as natural as breathing and that it comes from the divine. So it is both light as air and heavy with sacred responsibility. Lori’s inspiration is both of these as it elevates us intellectually and emotionally.
There is nothing I like more than a good night’s sleep. Lately that pleasure has eluded me. I am so concerned about my mother’s safety that I lie awake with my stomach in a knot. She has recently been diagnosed with Alzheimer’s so I know that her condition will get worse. Now she is very confused but still with us. She is living in her condominium – which is large, about 4,000 square feet, with four nurses taking care of her. She can never be alone. The nurses are all kind and conscientious people. Two can redirect Mom when she is upset about something, but two cannot handle her. I receive frequent calls and texts about problems. I visit and call and comfort her when she does not know where she is. She likes two of the nurses but wants to get rid of the other two, which she cannot do. I think even she realizes that, as confused as she is.
Her specialist told her she needs to move to assisted living arrangements because she will be safer where they are trained to deal with the exigencies of Alzheimer’s. She said she will think about it but does not want to go. Finally four days ago, she told me she did want to go because she does not want to have nurses anymore. In the assisted living facility, she can live on her own since nurses at the facility will check up on her. Then the next day she told me she changed her mind. She remembers little but remembered that.
I spoke to her primary doctor whom she admires and respects. When she visits him in two days, he will tell her she needs to go to assisted living. Hoping she will listen to him, I have arranged for her to move the next day. I know it will be very difficult: I will have to move a lifetime into three rooms. Dealing with Mom’s emotions will be worse.
No wonder I cannot sleep just when I need that balm most.
Once again, I turn to Lori’s Lessons. I read a quote from Aeschylus that Bob relayed to me: “Even in our sleep, pain which cannot forget falls drop by drop upon the heart until, in our despair, and against our will, comes wisdom through the awful grace of God.”
Then I read on. Bob said, “You can be angry about this stuff or you can change yourself to accept it. It is your choice. You can let it bother you or you can accept that it is simply Parkinson’s. Anyone thrown into this type of problem needs to become a ‘challenge-adjusted’ learner. This means you re-examine your assumptions and honestly assess reality and re-make the plan for each new set of circumstances. If you hold to the old plan to confront new challenges, you’ll just compound the emerging problem.” If I substitute Alzheimer’s for Parkinson’s, Bob is talking to me. Thank you, Bob.
Lori Patin brings so many wonderful qualities to her struggle against Parkinson’s – strength, persistence, determination. Still the quality that impresses me most is her attitude. Now attitude is a very difficult quality to pin down. The best way I can describe Lori’s attitude is to show a great example – her attitude towards hallucinations, a common side effect of Parkinson’s meds.
“One funny thing was that I started having hallucinations,” Lori told me. “I know that sounds really quite odd that I find those funny, and my family certainly was not laughing, but I wasn’t scared at all. I would get to talk to my father who has been dead for years or to my brother who lives in Ohio. Or I would see lots of animals, dogs, coyotes, even a zebra. Once I told Aly that she was in the living room delousing a zebra. You have to laugh at that one. These hallucinations weren’t transparent; they had form and shape and were as three dimensional as you or I. They didn’t scare me because I knew they were hallucinations, partly because it wasn’t logical to have my dead father in the family room or a zebra in the living room and partly because I just knew it was not real.”
Lori’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.
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.