Enjoy essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
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.
Thursday, September 17, 2015
The author doesn’t let her diagnosis of Parkinson’s disease keep her from living life to the fullest.
BY DEBRA CALLAWAY
Seven years ago, I joined the ranks of the one million people in the United States who have been diagnosed with Parkinson's disease. I was devastated. I had watched my robust dad wither and die from complications of Parkinson's in 1999, and I immediately pictured myself doing the same. However, when my neurologist explained that I might not experience any truly debilitating symptoms for as much as 20 years, I realized how out of proportion my concerns were. Why should I fret about something that might happen 20 years from now?
Right then, I decided to start focusing on today. I was still teaching at the time and had two more years before retirement. With the right medications, I got my tremors under control and was able to complete my 30-year career. Once I retired, I biked across America with three girlfriends. (Two husbands drove sag.) In eight and a half weeks, we biked more than 3,000 miles, from San Francisco to Yorktown, VA.
Shortly after completing that ride, I heard about an organization in Arizona called PWR4Life that promotes specific exercises to remediate the symptoms of Parkinson's. I've gone to their week-long retreats the last four years. With good treatment, effective medication, and lots of exercise, I'm continuing to enjoy a full life.
When I was in my thirties and forties, I ran marathons in Hong Kong, Paris, New York, Chicago, and Boston, and even competed in the Hawaii Ironman triathlon. I ran up Pikes Peak in the Rocky Mountains a number of times and hiked the Grand Canyon rim to rim eight times.
I can’t do these things today. My knees are bad, and I just don’t have the strength and stamina. Am I sad over this loss? Yes, but I also realize how fortunate I am to have had these opportunities to begin with. Now, instead of thinking about the things I can no longer do or might not be able to do in the future, I focus on the things I can do today--go for a walk or a bike ride, paint, read, write, play tennis, or swim. I can play with my grandkids or make love to my husband. My mantra is, “Do as much as you can for as long as you can!”
It’s a mantra I try to share with others. Don’t throw in the towel on life. Don’t stay indoors because you’re afraid of falling or embarrassing yourself or “looking funny.” Our lives are not over. Let’s not proclaim our deaths prematurely.
The poet Dylan Thomas urged his dying father, “Do not go gentle into that good night. Rage, rage against the dying of the light.” I would urge people with Parkinson’s to do the same. Don’t stop living before you die. Whatever you can do today, I urge you to get out and do it. There are new experiences to be had, new people to meet, new accomplishments to revel in. Don’t stop living before you’re dead!
Debra Callaway lives in Kansas City, where she spent 30 years teaching English in an alternative school. She and her husband and four children lived in China for two years, where she taught English as a second language in a rural village. She was diagnosed with Parkinson’s disease in 2008.
Wednesday, September 09, 2015
The author and her husband used to be globetrotters. Now that he has Parkinson’s disease and she’s his full-time caregiver, she’s learned to turn a trip to the supermarket into a holiday.
BY PHYLLIS BEARDMORE
During our 53 years of marriage, my husband, Bud, and I have taken some pretty spectacular vacations, both alone and with family and friends. For our 50th anniversary in 2012, for instance, we cruised around the Greek islands. As a schoolteacher, I had taught Homer’s Odyssey for many years, so I was particularly fascinated with Greek history and myth. Another time we took our grandchildren and their parents on a cruise to Bermuda; I’ll never forget my delight in watching the three generations interact while snorkeling.
In the fall of 1992, Bud was the head lacrosse coach at the University of Maryland, where he guided his team to two national titles in 1973 and 1975, a feat the school has not repeated in 40 years. In 1992, one of his trainers noticed a twitch in Bud’s little finger and stiffness in his right arm as he walked across the field. Our family doctor quickly suspected Parkinson’s and referred us to a neurologist, where we received the official diagnosis. Bud was 52 years old.
Despite the diagnosis, Bud and I maintained an active life and even continued to travel, if only to our beachfront condo in Ocean City. As the disease progressed—Bud has dementia and uses a walker—and travel became impractical, I co-opted the word “vacation” for another purpose: to describe the regular breaks from caregiving I take for myself.
Phyllis and Bud with their granddaughter, Hunter, a lacrosse player at Shepherd University. Image courtesy of Phyllis Beardmore.
The first one begins around 6 am, about two hours before Bud wakes up. I sidle out of bed, get dressed, and quietly leave the house to walk to our local Dunkin Donuts for coffee. Then I head to the grocery store to pick up a few items. The check-out clerks always greet me with a friendly smile. “I see you’re on vacation this morning!” they say. “How is your husband? Please tell him we asked for him!”
When I return home, I wake Bud around 8 am, as he starts his medication routine at 9 am. I help him out of bed and he makes his way to the bathroom with the assistance of his walker. I then help him dress for the day—jogging pants, a loosely fitted jersey, his socks and special shoes, which help his balance so that he’s less at risk for falls. By 9 am, Bud has taken his lift chair to the living room and eats breakfast with me while we watch the morning news. After that, he usually takes a nap, which is probably a side effect of his meds.
That signals the start of my second vacation—to the local community center, where I recently joined a jazzercise class. During the hour-long session, I escape to my “happy place,” dancing away all my worries and stress.
Sometimes after lunch I take a different vacation: a 45-minute loop around the neighborhood with a friend, whose husband happens to have multiple sclerosis. Caring for people with neurologic conditions gives us a connection and something to talk about during our walk. During that time, Bud usually naps, especially if he’s eaten and is settled in one place. When it’s sunny, he sits on our porch.
In the evening, I sometimes vacation with my interesting and eclectic group of condo neighbors, who meet every afternoon before dinner for wine and fellowship. When I’m able to join them, they say, “So glad you could get away for a vacation with us!” And as I sip from my glass of wine, I pretend I’m in the Bahamas with an umbrella drink in my hand.
To “escape” from my duties as a full-time caregiver sounds negative, but calling it a “vacation” puts a bounce in my step and a smile on my face. Just like the trips Bud and I used to take, my daily vacations refuel my mind and heart and allow me to cope with the daily demands at home.
Phyllis Beardmore lives in Anne Arundel County, MD, where she was a school educator for 46 years.
Thursday, September 03, 2015
A moment of truth in a public speaking contest boosts a woman with dystonia’s confidence.
BY CAROLYN BOLZ
Carolyn Bolz with her Toastmasters trophy. Image courtesy of Carolyn Bolz.
On a Saturday afternoon in March 2014, I waited nervously outside a small auditorium in Riverside, CA, with a group of fellow participants for a local Toastmasters speech contest. The thought of speaking in front of strangers made my palms sweat and my heart race. Why was I doing this? I thought—especially since it was more challenging for me than it is for most people. I have dystonia, a condition that causes my voice to tremble or come out so raspy or squeaky that no one can understand me. Sometimes, I can't speak at all.
I first started having symptoms, including breathing, balance, and coordination problems, when I was in elementary school. As a teenager, these symptoms worsened, and by the time I was in my twenties, people often stared at me. “What's wrong with you?” they would ask. “Why are you doing that?” I was embarrassed when strangers pointed out my unusual movements—shaky hands, leaning to the right when I walk, occasional spasms on the right side of my body, and head tremors—or commented on my unique voice.
Then, a year ago, a friend mentioned how much her husband enjoyed being in Toastmasters, an international organization that helps people improve their communication and public speaking skills. I was intrigued. Would this teach me how to modulate my voice or boost my confidence in the face of strangers’ stares and comments? Would it release my inner ham? After all, I wasn’t completely unfamiliar with a stage. As a bilingual elementary school teacher, I played piano and accompanied my students as they sang onstage during monthly assemblies.
Curious to find out, I visited a nearby club and gave an impromptu “icebreaker” speech, which is how first-time members introduce themselves to the group. I was nervous but felt a great sense of accomplishment after I finished. The club members were so encouraging and supportive that I decided to join Toastmasters, and even signed up for an upcoming public speaking contest in my area.
As the date drew near, though, I began having second thoughts. How would the judges and the audience react to my symptoms? What if my voice came out squeaky or raspy, or worse, didn’t come out at all? Despite these misgivings, I decided to go ahead.
That’s how I found myself outside the small auditorium with my palms sweating and my heart racing. One at a time, we would be called inside, led to the stage, and introduced. Then the master of ceremonies would give us a choice of two questions and we would be allowed two minutes to respond.
When it was my turn, the emcee said, “It's time for March Madness! Which team do you think will win this year? Or, what makes you mad?”
As the clock began ticking, I blurted out, “I don't know anything about sports!”
Then an idea came to me. “But I'll tell you what makes me mad,” I said. “It’s when people stare at or make comments to those of us with neurologic disorders.
“I have dystonia, which looks like cerebral palsy,” I continued. “Recently, I was eating lunch with my friend Paul. The waitress couldn't understand me, so I had to point to the menu to order. I needed a straw to drink my soda, and when my meal came, it was a struggle to get the food into my mouth. I was embarrassed. I told my friend, ‘Everyone is staring at me because I have dystonia.’
“Paul glanced around the room, then nodded. ‘Yes, everyone's looking at you, Carolyn,’ he agreed. ‘But they're not doing that because you have dystonia. They're looking at you because you're pretty.’”
Paul’s perspective was something I had never considered before, and I was overwhelmed with gratitude toward him for sharing it. Even if I didn’t believe it was true, I appreciated his saying it, and found it both encouraging and comforting.
The audience members listened closely to my story and seemed to sympathize with my struggles. When I related Paul’s comments, I heard a loud, collective sigh across the auditorium. I think the men and women who heard my short speech that afternoon were pleased that my story had a happy ending. At the end of my speech, the audience burst into enthusiastic applause. As I left the stage, people came to congratulate me and shake my hand. I couldn't stop smiling as I returned to the stage to receive my first-place trophy.
In fact, even though I gave the speech over a year ago, I still hear glowing comments about it whenever I attend a Toastmasters event. Just last Saturday, a woman approached me and said, “Carolyn, the speech you gave last year was very touching. Your friend must be a wonderful person!” Of course, I agreed. Paul has the gift of encouraging others and making them feel good about themselves.
That boost in self-confidence encouraged me to participate in several more speech contests. I even won first place at a “Tall Tales” contest, where I recited a poem, accompanying each line with humorous movements and facial expressions. Several times during my speech, I had to pause and wait for the audience to finish laughing before I could continue.
People still stare at me, but it doesn't bother me much anymore. I’m no longer ashamed of having a neurologic disorder, thanks to my friend Paul’s support and my many positive experiences with Toastmasters.
Because of my symptoms, public speaking is often difficult, but it also brings me the greatest joy. It’s one of the few times I forget I have a physical handicap and just concentrate on giving the best speech I can.
Carolyn Bolz is a former bilingual elementary school teacher in the California public school system. She belongs to several dystonia groups and has a passion for helping others deal with this difficult diagnosis.