Enjoy essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Wednesday, March 23, 2016
Psyching Out MS
A psychologist uses his professional skills to face
down fears about a life-altering diagnosis.
BY PAUL ROBINSON, PhD
Up until my 64th birthday, life was rolling along. I had recently retired from teaching psychology at North Central State College in Mansfield, OH, after a satisfying career. I enjoyed riding my bike, swimming, hiking, and gardening in the summer and skiing in the winter. I considered myself in near perfect health, despite some minor tingling, numbness, weakness, and rigidity that I dismissed as inconsequential.
Then, three days after my birthday, I awoke completely exhausted. I could barely get out of bed and move around. I immediately called a doctor friend, who connected me with a neurologist at the Cleveland Clinic. After undergoing a magnetic resonance imaging (MRI) scan, blood work, and a spinal tap, I was diagnosed with multiple sclerosis (MS).
I was stunned and initially depressed. MS had never been on my radar. I had imagined biking, skiing, and hiking well into my 80s. Now, I wondered how soon I'd be in a wheelchair. As it turned out, my fears were far worse than reality. After a round of corticosteroids to reduce the inflammation and unsuccessful trials of eight medications, my neurologist and I decided to halt all drugs until otherwise indicated. To this day, 10 years later, I am still not taking any prescribed medication though I occasionally experience bouts of rigidity,
pain, burning, fatigue, and minor balance problems. My case puzzles my neurologist, who says that although I have the clinical and biological
signs of MS, my case does not quite fit the normal pattern of the disease.
But I still find myself battling distressing feelings about my future. Fortunately, as a professional psychologist, I have a few strategies that help me cope.
First, I monitor the comments I say or think to myself. So, for instance, if I find myself saying "I can't" when it's time to go to the gym, I'll challenge myself to at least try and remind myself that I'll feel better if I exercise.
Next, I count my blessings—the love and support of family and friends and relatively good health. I even consider the ways my condition has improved my life—it has invited me to slow down and appreciate the beauty around me. It has made me more mindful and purposeful in my daily life. It has increased my compassion and empathy for others.
I also monitor my emotions. When I catch myself feeling sad or sorry for myself, I acknowledge that it's normal and natural to feel this way, but I'm careful not to get stuck in self-pity or anger. I realize that there are no guarantees in life and that my challenge is to meet and accept life as it is and not as I wish it to be.
Time for Reflection
Finally, I reinforce these practices with prayer and meditation, which deepens my sense of inner peace and equanimity. I also help counsel others with chronic health conditions. I encourage them to be kind to themselves without being too indulgent and to welcome the lessons that come their way. MS may damage the body, but it doesn't have to damage the spirit.
Paul Robinson, PhD, a semi-retired psychologist, lives in Mansfield, OH, with his wife, Lana, of 53 years.
Friday, February 5, 2016
For years she kept quiet about her disease, but today the author speaks often about epilepsy.
By ANN MARIE GILLIE
I had my first convulsion when I was 3 years old in 1972. Before I started nursery school, I had a seizure that left me paralyzed on my right side. I had to drag my right leg when walking and do daily exercises to get my muscles strong again. I was prescribed phenobarbital and my parents were told I would be paralyzed permanently and have a speech impediment and learning disabilities.
To everyone's surprise, I regained the use of my right arm and leg within the year and never had any speech or learning disabilities. By the time I was 9, my seizures had stopped and by age 11, I was off all medication. Finally, seizure free.
Then in 1990, just when everything was going as I wanted—I had my own place, my own car, a job—the seizures came roaring back. I was devastated. Once again, I was back on medication, which often had intolerable side effects like depression, weight gain, and low self-esteem. I had always been a happy, vibrant, and energetic person, so this was like hitting a brick wall again and again. Eventually, I found drugs that both worked and had tolerable side effects. I even stayed on them during my pregnancy and never had one seizure. After my son was born, the seizures returned.
After years of working with the same neurologist, I decided to try a new one. During the first visit, he asked me if I'd ever been considered a candidate for surgery. When I said no, he arranged for me to meet with a neurosurgeon who placed electrodes on my head to determine from which part of my brain the seizures originated. A week later, I was told I was eligible for surgery. The surgeon explained that I had mesial temporal sclerosis (MTS), which is scarring of the inner portions of the temporal lobe. It can be caused by head trauma, lack of oxygen, brain infection or by something unknown. In any case, MTS can cause a form of temporal lobe epilepsy.
Three months later, I was wheeled into the operating room for a surgery that would change my life. The enormity of the operation didn't really hit me until after it was over. Called a left selective amygdalohippocampectomy, the procedure was eight hours, including prep and intensive care afterwards. I stayed in the hospital for six days where I had to learn how to walk again and refresh my memory with word and number exercises, as if I were in elementary school again.
Now, 13 seizure-free years later, I'm still talking about my experience with epilepsy and my surgery. Helping others is my passion and I know that with my personality—someone who isn't afraid to talk about her experience—I can help others with their epilepsy.
In 2012, I was asked to be an epilepsy advocate for Canada to help spread awareness of the disease. I also established a support group on Facebook called "Life after brain surgery. Epilepsy needs to be talked about." My goal is to speak at seminars, conferences, and forums, to add a patient's perspective to help others understand the disease and the type of brain surgery I had. After years of being silent about my disease, it's all I want to talk about now.
Ann Marie Gillie is the author of Let's Talk about Epilepsy (Outskirts Press, 2012). She lives in Spruce Grove, Alberta Canada, and is the mother of three sons.
Wednesday, December 16, 2015
After her mother was diagnosed with dementia, the author created new ways to celebrate the holidays.
BY COLLEEN BOYLE
My memories of childhood Christmases are sharp. I can taste the yummy treats, rejoice in the carols sung in harmony out in the cold, savor the late supper after Christmas Eve Mass in front of a roaring fire, see the smiling faces of family and friends around a well-stocked table, and feel the happiness that comes from surprising someone with the perfect and unexpected gift.
In every scene my mother looms large. Honoring those memories of her after her diagnosis of dementia was challenging, especially as her disease progressed and she no longer recognized me. But with a little forethought and a nod to simpler times, I was able to create an experience that proved to be a gift to both of us.
Instead of a big, ornately decorated tree, I placed a little Norfolk Island Pine with one red bulb hanging from a red ribbon on the table next to the chair in which she watched television. She was delighted. I skipped the complicated and fancy dinner that took hours (and several bottles of wine) to prepare and bought a box of rich German pastries reminiscent of those my mother fell in love with while serving as a nurse in the Army in World War II. We shared them over cups of coffee—mine with a dash of sugar, hers dosed with Ativan.
Dozens of extravagantly wrapped gifts would have crowded the little pine tree, so instead my mother and I wrapped several small items with pretty paper I had brought. Minutes later I handed her one of the presents and watched as she opened it, eyes as bright as a child’s. She was thrilled with the bottle of hand cream and smiled contentedly as I rubbed it into her hands and arms.
Attending Midnight Mass was out of the question—too intimidating for my mother—so instead I brought one of her favorite Bing Crosby CDs and we hummed along to “White Christmas.” Then we quietly sang a few notes of “Silent Night”–a moment as sacred as any I have felt in a cathedral.
Since my mother couldn’t leave her assisted living home without becoming agitated, I had delivered the holidays to her. We repeated this simple tradition until her death, and each time was as special as the first. Some celebrations lasted only 30 or 40 minutes, but that was enough time to smile, laugh, and share a snack. Those memories of Christmas with my mother in her last few years are as sharp and deeply cherished as those of my childhood.
For more information about celebrating the holidays with someone who has dementia, read “5 Tips for a Joyful, Inclusive Holiday” and “Holiday Gifts.”
Colleen Boyle is the author of Mary's Gift: A Caregiver’s Journey of Love, Loss and Connection, a memoir of a mother’s decline from dementia and a daughter’s efforts to care for her. She lives in Denver with her wise and supportive husband.
Monday, September 28, 2015
BY ALAN G. CUMMINGS
It is a sunny day.
It is not.
Imperceptibly, the air density changes;
So slight, like a faint breath, it changes.
A slight shadow appears, almost unnoticed.
But it is.
Laughter echoes in the hallway;
Stopping quickly, silence fills the void.
Like cat feet on cotton, there is no apparent movement;
Yet it is moving, deep inside you; it is moving
And you know it
Tightness slowly surrounds
Fear is tangible, touchable
When confronted it diminishes
But at a cost
Depleting, challenging the core
Standing in the swirling sunlit breeze
Blood strength surges forward,
Turning into the breeze
To face another day
Grabbing this strength
Holding on, leaning forward
Leaning forward into the wind
Alan G. Cummings is a semi-retired attorney in Washington, NH, where he enjoys hiking, skiing, and producing maple syrup. His wife died of amyotrophic lateral sclerosis (ALS) in 2011 and both his mother and sister died from Alzheimer’s. He has two children and three grandchildren.
Monday, September 21, 2015
The author gently encourages a woman with MS to nurture her spiritual self.
BY SISTER KAREN J. ZIELINSKI, OSF
“Hi, Karen, this is Carol. Dr. G said I should talk with you about my MS.”
I was surprised by the call. When the doctor had asked me if I would speak to Carol, I had happily passed along my phone number—two years ago! Carol, it seemed, was finally ready to talk.
I’ve had multiple sclerosis (MS) since 1975, so I figured Carol was looking for advice on how to handle fatigue, the best ways to prepare for travel, and how to manage symptoms. Maybe she would ask about the challenges and side effects of medications, injections, and physical therapy. But as we talked, I realized that she knew all that. And she knew where to go for any additional information: her doctor’s office, her local MS Chapter, or the National MS Society’s website. She was very knowledgeable about what she had to do to stay healthy while living with MS.
So I wondered: Why did she call me?
As our conversation continued, I realized she was searching for spiritual wholeness in her life. She wanted to engage on a deeper level—heart, mind, and spirit—with the ups and downs and uncertainty of living with MS. She told me, “I’m just not at peace.”
After our initial conversation, we continued to talk on the phone over the next several weeks about how spirituality can lead to healing.
I encouraged Carol to broaden her definition of spirituality beyond the realm of religion. She could express it through a love of nature or the arts, or a belief in the common good or in the importance of family or a community—any activity that offered the opportunity to reflect on the meaning of life, the importance of relationships, the afterlife, and her place in the universe.
Carol was intrigued by the idea of a spiritual transformation, especially if it helped her health and healing process, but she didn’t know how to start. She had grown up attending church services with her family, but in her adult life she wasn’t much of a churchgoer. “I don’t even know the words to say, or what I should do now,” she said.
I encouraged her to seek out people who could help her honor her own sense of the sacred, such as a trusted chaplain, minister, counselor, rabbi, elder, or wise friend, who could suggest books, people, and places that might help her on her spiritual journey.
In subsequent conversations, Carol began to discover that journaling helped calm her anxieties. She liked the exercise of writing her thoughts and feelings in a notebook while sitting in her favorite easy chair. I suggested she put a candle by the chair and play calming music to turn it into a sacred space—and to think of her writing as a sacred activity. She loved the idea and started visiting that space each day, to “be still” and write.
As she practiced this ritual, she said she felt stronger spiritually and had more interior energy to manage her illness.
Like Carol, I have found that through prayer and meditation I respond to the challenge of MS with more equanimity. I cannot change my disease, but through contemplative practices, I can coexist peacefully with it.
Karen J. Zielinski, OSF, a Sister of St. Francis of Sylvania, OH, was diagnosed with MS in 1975. Her book, Hope and Help for Living with Illness (Franciscan Media 2012) deals with health and spirituality. She also lectures on chronic disease and coping strategies.