Six months after my daughter Mimi was diagnosed with epilepsy, we finally had a breakthrough. I had told a friend, Barbara, how Mimi was struggling with the limitations of her condition. She just wanted to be a normal teenager – which means doing a lot of things that can cause her to have seizures. If she had been a little girl, I could have disciplined her to act within the limitations of epilepsy. If she were an adult, she would have the judgment to do so herself. Unfortunately, discipline and judgment are not teenage virtues. Barbara had a friend whose daughter, now in her late twenties, had come down with epilepsy as a teenager. Barbara put us together.
Talking to someone else with epilepsy was a revelation to Mimi. She heard this lovely young lady talk about how difficult it is to have seizures. How embarrassing. How she would be afraid of having one whenever she went to a party. She talked about going out and drinking and then having a seizure the next morning as the alcohol wore out of her system. She was so open with Mimi. Mimi hung on her every word. This young lady now only drinks one beer at a party and gave Mimi examples of witty comebacks when people ask why she isn’t drinking. Mimi walked away standing taller than I had seen her in a long time. For perhaps the first time, Mimi could see herself getting a grip on her condition.
Yesterday I had lunch with Barbara. I hope I was able to return the very great favor she did me two years ago. Someone very dear to Barbara also has seizures. I was able to share our experience with the drugs Mimi has taken. I hope it will help.
I reread Lori’s lessons. Two have made a very great difference in my life. The first is to be very honest about your condition. Lesson 8: Own and accept your situation. Don’t deny full ownership or lie to others about it. Being honest with yourself about your challenge allows you to confront it rather than to hide which just wastes time, energy and resources. Being honest with your friends draws not scorn or isolation but sympathy, prayers, resources and ideas to support your fight. You will be amazed at the forces that come your way if you just share your story. Because I was open and honest about what was going on with Mimi, Barbara could throw us a lifeline.
The second is to seek out friends and communities that will nurture you. Lesson 9: Seek out communities that will nurture you. Communities are an extension and reflection of the family and they enhance life. Belong to a community and it will celebrate with your joy and commiserate with your pain. You need the members of the community for support, and they need you as a good example. Expect to be responsible to and for the community, just as it is responsible to and for you. Isolation is a killer and inclusion is a savior. This applies to everyone, not just people struggling with medical conditions.
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.
Two weeks ago I had that dream, the dream that’s most people’s worst nightmare: speaking in front of an audience. (At least I wasn’t naked.) In fact, I woke up feeling great. I had been worrying about what to say and my dream told me. I awoke knowing just how to write my speech. It seemed like a miracle to have my dream do my work for me.
Lori, Bob and I were scheduled to speak about Lori’s Lessons at the Book Stall in Winnetka May 4. I so wanted to do a good job for the Patins that nothing I wrote seemed good enough. The dream dispatch was a gift from my subconscious. It didn’t come as word-for-word text, but as a message to be straightforward, to tell why Lori’s story is so great and to say what a privilege it has been to tell it. This may sound obvious now, but it wasn’t before my subconscious gave me the dream.
I am a great believer in the power of the subconscious. When I was in college, I procrastinated about writing papers. The night before they were due, I would read through all my notes and then get a good night sleep. When I woke up, I would sit down at the typewriter and type my paper like magic. While I slept, my subconscious organized all the material, figured out what was most important and tied it all together.
My main problem with speaking about Lori’s Lessons was getting started. I usually open by telling of the blessings the Patins have brought to my life. Between the time that we set up our first meeting and the time we met, my daughter was diagnosed with epilepsy. Lori’s story, her wheel of attack against her disease, has helped me teach my daughter how to stand up to her neurological disorder. Bob’s words of wisdom about caregiving have inspired and strengthened me as I care for her. My daughter gave me permission to tell her part of the story in the book, but I knew she would not want me to discuss it when she was in the audience. That caveat had blocked me from writing the talk I wanted to give. My dream straightened me out: I didn’t need to tell my story.
I love a book by Rollo May entitled The Courage to Create. In it, he said: “The value of dreams…is not that they give a specific answer, but that they open up new areas of psychic reality, shake us out of our customary ruts, and throw light on new segments of our lives.” You just have to be ready to receive the message.
I did not aspire to be a caregiver, but that is what I have become. I have balked and struggled, but I want to do my best to help two women, one very young and the other very old.
Last year I became a caregiver for my 17-year-old daughter when she was diagnosed with epilepsy. Two days after we got back from dropping her off at college, my 92-year-old mother had a stroke, and later a heart attack and a bleeding ulcer. Now I am taking care of my dear mother too.
From Lori and Bob, I have learned that caregiving is a love story. She says Bob reminds her of the gospel song: “He walks with me, and he talks with me and he tells me that I am his own,” even though this of course refers to a much greater love and power than the human. You give care for someone because you love her or him. You take on the task rather than delegating it because this is not a job. It is life.
Caregiving is a dance where the person giving care and the person receiving it wrap their arms around each other and move in time together to the music. Bob says that it is important for the person being cared for to respond with love. “You must love the people who love you. Their love and care demands reciprocity. You can’t just expect or demand or even accept their love and care without convincing them that you love them back. If nothing else, just tell them.”
The dance of caregiving is not a grim duty. The caregiver both gives and receives joy, as does the person being cared for. Lori advises: “Make constant ‘deposits’ into your energy bank accounts with hugs, sunrises, and laughs. They will allow for big withdrawals when you get hit with the unexpected.”
in my next blog.
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.