The Speak Up blog features essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
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.
Monday, August 31, 2015
BY CRYSTAL LYON
I met you several years ago
Not knowing it was you.
You crept in so very slowly,
I truly had no clue.
You started stealing little things
You thought I would not miss.
Like how to control my hands and arm
That’s how you started this.
Did you care how doctors looked at me
Saying no answers could be found?
Did you know the looks of ridicule
Or how crazy I would sound?
Silly things like ringing ears
And making my eyes blur.
I never thought I’d ever hear the words
“Progressive, there’s no cure.”
You slowly try to take my balance
My strength and even my mind.
I speak and have to search for words
But some I just can’t find.
There’s pain and burning in my muscles
Rigidity in my limbs.
I can fight this with medications
But I’m at the mercy of your whims.
You love to bother me at night
Keeping me awake.
You’re incredibly relentless
You just take, and take, and take.
Some days you steal my energy,
I’m so weak that I could cry.
How I wish you hadn’t chosen me
Yet I will not question why.
I wish I could outsmart you
It’s my body and mind you seek.
Yet you are always here with me
Every day of every week.
You do not care who I am
A wife and mother of three.
Stealing all my dopamine
You keep on robbing me.
These medications tame you
But will never take you away.
I swallow pills every four hours
Just to keep the disease at bay.
But you don’t really have me
To this you must resign.
My life won’t be defined by you
It’s you I’ll redefine.
Crystal Lyon lives in Lyon Mountain, NY, with her husband and three children. She helps spread awareness about Parkinson’s disease through the Michael J. Fox Foundation and is a passionate member of Team Fox.
Thursday, July 23, 2015
BY ERIC S. SMITH
My life was changed when I found out
I had an incurable disease
My future was reworked for me
As quickly as a sneeze.
When I was told
A panic began to grow
To flee or fight—which would it be?
Down which path would I go?
I knew that this was now
A diagnosis that would not lift
But faith and love and medication
Have truly been a gift.
What brought about this rotten curse
Has been a blessing, too
I live each day, a gift from God,
To help me see this through.
But even with all the pleasant thoughts
Of how each day is spent,
Early on, it wasn’t easy
To face what all this meant
My being was invaded
By an unseen cruel control
And now my life is sometimes like
An actor in a role.
Without my drugs I’d be a mess
My life would be so bleak.
But I’ve been blessed with humor and love,
And that has spelled relief.
Outwardly, I may seem fine
I might look fit and trim
But in my body illness reigns
Foretelling a fate quite grim.
But I will fight and hold my ground
And never stop the war
Against this blight of Parkinson’s
And hope there’ll be a cure.
Tuesday, June 30, 2015
The author finds clever workarounds for the inconveniences of myasthenia gravis—and reflects on his good fortune.
BY JEFF PALMER
I haven’t had a drop of alcohol in 20 years, but one morning in December 2013, I felt like I’d been on a major bender. I couldn’t open my right eye more than halfway, and over the next week I had recurring bouts of double vision. I visited the doctor, who told me the vision problems could be neuritis related to my diabetes.
I’d taken my initial diagnosis of type 2 diabetes in October 2013 very seriously, making drastic changes to my diet and lifestyle, cutting out salt and sugar, eating better and less, and skipping the late-night snacks. Just one week after making these changes, my morning blood sugar levels had dropped to within the normal range for non-diabetics, and in two months I had lost 30 pounds. I’ve since lost 20 more.
So it seemed strange that these new vision problems could be due to my diabetes. My doctor sent me off without answers, saying I should follow up if the vision problems didn’t disappear. And they did, for a while.
But then, six months later, I had trouble chewing. After a few bites, I found I couldn’t get my upper and lower teeth to connect. Like the double vision, it persisted intermittently for nearly a week. Even squishing blueberries in my mouth was a struggle. The jaw weakness also caused me to slur my speech. I went back to the doctor with these new complaints and was referred to a neurologist. Subsequent blood and nerve shock tests confirmed something I had already suspected and feared: I had myasthenia gravis (MG).
I was no stranger to MG; my dad was diagnosed with it in his mid-eighties, the last years of his life. Medication helped his symptoms but weakened his immune system, so he became highly susceptible to germs and infection. He passed away after a bout of pneumonia. While myasthenia gravis is not always hereditary, children born to parents with MG may be genetically predisposed to it.
I’ve mostly learned to work around my symptoms. For instance, rinsing my mouth or gargling can be difficult, so I stock up on Listerine breath strips. Sometimes I’m unable to close my eyes completely, which is most frustrating when I’m trying to sleep. Donning an eye mask helps, and I try to ignore my nightly resemblance to the Lone Ranger. (I’ve already modified his battle cry: “Hiyo, slumber!”)
One of the most disturbing side effects of MG is that I still occasionally develop slurred speech. When this happens, it can be difficult to convince panicked listeners that I’m not having a stroke! But I’ve learned some tricks; avoiding words with S’s and Z’s helps mask the problem, for instance. For years, my all-purpose interjection was “Sonofabitch!” Now I go with “Holy mackerel!” instead.
At 62, I’m stronger and in better health than my dad was when he was diagnosed. I take medications that have improved my chewing and speaking and eliminated my most alarming complication, difficulty swallowing. I’m thrilled that I can once again chomp up the almond in an Almond Joy. I’ve managed this disease as conscientiously as my diabetes. I downloaded information and learned all I could about the condition from the Myasthenia Gravis Foundation of America. I even underwent treatment with a series of infusions of intravenous immunoglobulin, which helps stabilize the immune system. This treatment could send my condition into remission for weeks, months, or more. So I remain optimistic.
One evening, I successfully navigated some Chinese food—crispy beef with steamed rice—with little effort. I taped the fortune that accompanied my end-of-meal cookie to my pill sorter so that I see it every day: “Find release from your cares, have a good time.”
Jeff Palmer is an editor and writer in Massachusetts, where he enjoys going to the beach, candlepin bowling, music—although he doesn’t play an instrument—and acting.
Tuesday, June 23, 2015
When secondary-progressive multiple sclerosis forced the author into a wheelchair, she gained a new perspective on the disabled community.
BY LORRAINE WASCHER WOODS
The first 54 years of my life were unremarkable. I earned a college degree, married and divorced, raised two children, and had a rewarding career as a teacher. I traveled and volunteered, was active and outdoorsy, and felt lucky to be able to share life experiences with family and friends.
That changed when I was diagnosed with multiple sclerosis (MS) at age 40. I had unsettling symptoms like falling for no reason, numbness in my arms or feet at odd moments, fatigue, and a painful, squeezing pressure around my torso (what patients call the “MS hug”). I fought hard to keep these symptoms at bay and to keep others from developing for as long as possible. I even thought I could beat the disease.
In truth, I was terrified of becoming disabled—which, for me, conjured up images of faceless people in tattered clothing with hungry expressions slumped over in duct-taped, battered wheelchairs on the south side of Chicago, near the suburb where I grew up.
But there was no denying that MS had dropped me into a strange, foreign place that held no room for my tennis racket, my skis, my road bike, and my hiking boots.
Still, I fought my disability, devising convoluted workarounds for my increasing limitations. When my unsteady legs required a cane, I hid behind the boxy cart on wheels that I used to carry my books and supplies at the school where I taught, gripping its waist-high handle for support. I thought I could push the scary, progressive, debilitating effects of MS out of my life, just as I was pushing the cart down the hallway. When my legs got so weak that I could no longer walk between classrooms, I got a scooter to propel myself around campus. Students and staff would joke and ask if they could hop on. It was all good-natured fun, but I hated the attention, hated being treated differently.
I’d been brought up to be self-reliant, independent, and able to accept challenges, but now I felt withdrawn, disconnected, and afraid. I felt like less of a person. My despair increased when my MS progressed to the point where I needed a wheelchair. I was face-to-face with my worst nightmare: I was officially disabled.
It took years, but I slowly grew to accept this new normal. Connecting with others who had MS was an important first step. From conversations with others in similar situations, I realized I was better off accepting my reality than fighting the invisible monster of MS. And a strange thing happened: The more I accepted my limitations, the more liberated I felt. Refusing to use a wheelchair kept me indoors, where my world was safe and easy but narrow. But embracing the wheelchair expanded my world—and my perspective.
I was embarrassed that I had ever tucked the “untouchable” disabled into a corner of my mind, as if they didn’t exist. Now, I’m a passionate advocate for people with disabilities, determined to show the able-bodied how they can help people with disabilities instead of standing by helplessly—or worse, ignoring them, as I once did. I hope stories like mine can stimulate meaningful conversations about uncomfortable topics or silence the hushed conversations I sometimes hear, for instance when I’m transferring from one chair to another and my legs collapse and I fall clumsily to the floor.
I want to make a difference in the lives of the disabled, and I believe I can do that by accepting my place in this strange new world—and championing its value to others.
Lorraine Wascher Woods, a retired Los Angeles public school special education teacher, was diagnosed with relapsing-remitting MS in 1993 and secondary-progressive MS in 2008. She currently lives in Seattle.