The rumors started a few years ago.
It all began when they had seen her struggle to get to the car.
It was not a pretty sight.
Swaying from one side to the other, Jennifer stopped to take a breath and regain her balance. Her brain was telling her body to walk upright, with that strong, steady gait she had always been so proud of. But somehow, that message didn’t reach her muscles because she kept on waddling like a duck.
As she looked down, she realized how uneven the sidewalk was. Every tile that was sticking out turned it into an obstacle course.
She stopped again and looked at her neighbor’s porch. A shadow quickly moved away from the front window.
When she finally reached the car, she had to hold on to it, to stay on her feet. Jennifer opened the door and swung herself into the driver’s seat. When she drove away, she already felt exhausted, and the day had barely begun. She wondered how well she would do at the audition.
The people next door were old school. They didn’t say much, and when they did, it was usually behind her back. Much of the world was a mystery to them, and yet, they acted as if they knew everything.
For one, they thought that Jennifer was lazy, because she hardly ever left for work in the morning. They had no idea that Jennifer had a state of the art voice-over home studio equipped with ISDN and SourceConnect.
Secondly, they were pretty sure that Jennifer was faking a handicap. One day, they had seen her walking with a cane. The next day, she seemed to be totally fine. Besides, she looked great. Sick people usually don’t look that good.
Perhaps Jennifer was feigning disability to get money from the government. How else could she afford the mortgage? After all, she had no job and people abuse the system all the time.
The neighbors also knew something else: Jennifer liked a drink or two. That would explain the swaying and the stumbling on the sidewalk. In short: Jennifer was a jobless, lazy drunk who shouldn’t even be driving. She should be ashamed of herself!
THE STAGGERING TRUTH
This week is MS Awareness week, and like many other people who suffer from multiple sclerosis, Jennifer was gearing up for the annual Walk MS event in May. She needed sponsors for the walk and she decided to stay close to home. Jennifer loved to bake and had an idea: she would go door-to-door with her delicious home-made cookies and raise funds for the event.
As the oven was heating up, she thought back to the last meeting of her support group. That night, they had discussed the many misconceptions surrounding MS.
Larry, the facilitator, warned everybody:
“When it comes to a chronic illness like MS, if it’s not visible, it does not exist. In other words: as long as you’re not in a wheelchair, people tend to think that you must be doing alright.
Some folks think that MS is the result of a poor diet or negative thinking. In other words: you’re basically doing it to yourself. Eating healthy and an optimistic attitude alone could solve the problem. Wouldn’t that be lovely?
As you know, many MS symptoms are silent. Different people have different symptoms and some of them come and go. There’s poor coordination, fatigue, vertigo, visual disturbances, tremors, spasticity, weakness, slurred speech, unstable walking, sensitivity to heat… do I need to go on?”
POLLING THE PEOPLE
“When they surveyed people in the UK about MS last year, almost half of the respondents couldn’t name a single symptom. Others believed that MS was contagious or inherited and almost always fatal. None of that is true. Mind you, the people that were interviewed were from a cross-section of the population. They weren’t exactly uneducated.
So, on top of suffering from a nearly invisible autoimmune disease, people with MS also suffer from these myths and misconceptions.”
At that point, Carlos interjected. He had been a flight attendant for many years, until MS had him grounded.
“I always tell people: Even though I have this disease, it’s not who I am. I’m still the same person. I don’t want your sympathy. I want your understanding.”
Have you ever wondered what it feels like to have MS? Singer-songwriter Kristie Salerno Kent was officially diagnosed in November 1999. She made a short film about living with MS. Please take a few moments to watch it. I think you’ll like her approach. Depending on your computer, you might have to turn the volume up a little:
Let’s pick up Jennifer’s story where we left off. Her scrumptious chocolate chip cookies were ready and wrapped with an orange ribbon. Within the hour, she had sold almost her entire batch to the people on her block, and there was only one house left: the neighbors. On her last legs, she rang the doorbell.
“What’s up with you?” asked the neighbor. “It looks like you were hit by a truck.”
“Oh well,” said Jennifer. “It’s the fatigue. I’ve been going door-to-door to sell these cookies for the MS Walk…”
“I know exactly what you mean,” interrupted the neighbor. I get tired too. We all do. Just get some rest and you’ll be okay. Why are you selling cookies? Did you join the Girl Scouts?”
“It’s for people who want to sponsor my team for the MS Walk in May. You get three for a dollar,” said Jennifer.
“MS… that’s what Michael J. Fox has, right?” asked the neighbor. “He looks fine to me. Saw him on the Olympics a few weeks ago. Once an actor, always an actor.”
“I believe he has Parkinson’s,” said Jennifer. “I raise money for Multiple Sclerosis.”
“I’ll tell you what,” said the neighbor. “I just gave money to those poor people in Haiti, and I’m sure you’ll make someone else happy with these cookies for Multiple… whatever it is. Right now, my pizzas have arrived.”
As Jennifer walked back to her house, the guy from Domino’s made his delivery.
“Sir, that’ll be $18.98”.
“Here’s twenty five,” said the neighbor. “Keep the change.”
Paul Strikwerda ©nethervoice
MS is a chronic, unpredictable neurological disease that affects the central nervous system.
Approximately 400,000 Americans have MS, and every hour someone is newly diagnosed. Worldwide, MS affects about 2.1 million people. Even though there is no cure, there are now FDA-approved medications that have been shown to “modify” or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms.
The National MS Society is the largest nonprofit organization in the United States supporting research for the treatment, prevention and cure of multiple sclerosis. Approximately 83% of Society income is devoted to research and service programs that enhance the lives of people with MS and their families.
Every spring nearly 300,000 people unite across the country to participate in Walk MS. All walks have an accessible route so people of all abilities can participate. Funds raised support the Society’s research and services programs.
*Source: National MS Society
PS Are you ready for my most popular article ever?
Thank you for sharing Jennifer’s story. I thought you had installed a webcam of my life for the past two years. I was diagnosed with a neurological disorder(unfortunately mine does not have a name)in ’08. I can totally identify with Jennifer. Same deal cane one day walker another walking normally etc.
I am getting into VO because of this and because I like acting as well as the flexibility. I am sorry I can’t donate something but I will be praying that you will reach your goal. If there is something else I could do, please let me know. Blessings:)
Paul Strikwerda says
Thank you for your kind words and for your prayers, Christine. As you probably know, it can take years and years before an MS diagnosis is reached. Specialists aren’t even sure it’s one particular disease, because there are so many symptoms and people who suffer from it. The National MS Society helps people, even if they haven’t been officially diagnosed.
I wish you well, personally and professionally!
Chris Mezzolesta/Voiceguy1 Communications says
Thanks very much for the post and for your efforts Paul. My mother had a full-blown attack of secondary progressive MS in 1977 and has never been the same since. Up and walking/talking one day, a near-vegetable the next. Of course at that time few knew what MS was and it was assumed she had a stroke since she was paralyzed on one side and lost the ability to talk and swallow. So we unavoidably learned about MS over the years. Only recently am I seeing MS awareness increasing out in the mainstream, and wish that medical research was not as equally far behind. But efforts such as yours help to propel it along – and while it may not be in time for my mom to walk or talk again, it might help people such as the son of one of my high school friends who was diagnosed a couple of years ago. Thanks again very much.
Paul Strikwerda says
Hi Chris, I’m really sorry to hear about your mom. It must be hard to see the person you love being affected by this cruel and mysterious disease.
There are many reasons why MS-awareness is developing (too) slowly. Apart from Montel Williams and Phil Keoghan, there aren’t too many celebrities that give MS a face. If people can’t identify with a cause or a celebrity, it is less likely that it will appear on their radar screen.
Secondly, because symptoms vary from person to person and from day to day, MS is not one of those diseases that can be explained in a sentence or two. I’ve often noticed that even health care professionals and people working for social services don’t get it. That’s why I love what Kristie Salerno Kent did (see her YouTube video).
We live in a culture of “seeing is believing”. What we don’t see, does not exist. My wife has MS, and when she happens to have a good day, no one would be able to tell.
If my wife would get a dollar for every time someone told her: “But you look so good!”, she would be one wealthy woman.
I’m glad I can use the platform of my blog to raise MS awareness. However, awareness without the funds to tackle this disease, is not going to bring a cure any closer.
People might be more understanding of your mother and of my wife, but goodwill is not going to pay for the brilliant researchers they need, to end MS. Sympathy won’t pay for wheelchairs, scooters and therapy. Donations do.
Speaking of donations… here’s an update on my “Giving a Voice to MS” campaign. So far, about 200 people have looked at (and maybe even read) this article. Before it was published, I had raised $25.
If you look at the fundraising thermometer on my Walk MS-page today, you’ll see that nothing has changed. Perhaps I should start selling cookies instead of offering free voice-over narrations…
Paul Strikwerda says
Good news: my fundraising thermometer is up to $75! I’m still far away from my $1500 goal, but any amount counts!
Paul Strikwerda says
Thanks to a generous donation from Dutch voice-over colleague Arno Lubbinge, I’m now at $125. If you feel that my articles have been in any way helpful to you, please consider showing your support by making a donation today. Any amount, no matter how small, will make a BIG difference!