Her 15 year old son Tyler Huneault has Sialidosis, a very rare enzyme disorder from which few children survive more than a couple of years. This disease has left her sweet, smart and engaging son with a skeletal malformations, multiple bone fractures some requiring surgery, end stage kidney disease, lack of coordination, tremors, and coarse facial features(yet he is handsome), flat nasal bridge, puffy eyelids, enlarged gums and tremors. Right now, he is the only child living in North America with this branch of Sialidosis disease! However, there was a boy named Alex from Poughkeepsie NY with Sialidosis who was 20 days younger than Tyler. The families had many visits with each other up until Alex succumbed to the disease at age 6. In the world, at this time, there is only one other known child with infantile onset Sialidosis and that is Mia who is 5 and lives in Germany.
Tyler has been on national TV trying to raise awareness and money. Through a fundraising event, a very young girl named Emily heard of Tyler’s story and wanted to help raise money for research. She had a garage sale too. Her kind act was in turn picked up by a real estate company who featured her story at an inspirational breakfast in Florida….where hundreds of strangers to Tyler donated over $25,000 in cash on the spot towards Sialidosis research.
The garage sales continue yearly and are attended by hundreds raising $25,000 each year. Both Tyler and Emily a make public appearances. To date, Tyler and Emily have raised over $350,000 for McMaster University where they are researching the disease.
When flying to Disney Land on a Make A Wish trip, Ida spotted a celebrity. Through the flight attendant, they sent a note to him about Tyler’s desire to get a photo together. The celebrity waited until the plane emptied, then walked back to their seats for a short conversation and photo op.
I really wanted to meet this young pioneer who inspires so many. When Ida invited me back to her home after the conference to join her family for dinner, I enthusiastically accepted. I sat down near Tyler on the carpet. He was wrapped in a yellow sweater his grandma had knitted and we immediately connected like we had been old friends.
He play-acted a comedy scene with his mom. His dad fed him dinner and patiently waited in between in each mouthful claiming it teaches him the patience he needs for hunting when he is perched quietly up in a tree awaiting the deer or goose.
I had a front row seat for ‘Gratitude,’ witnessing how humor, sweetness, and cherishing family moments far outweighs the challenges of physical limitations.
This commercial by Fifth Third Bank tells a compelling story. They are not selling bank services. They are selling their passion to make a difference through STORY. No better vehicle to engage listeners and be memorable than through a story. It certainly worked with me! It’s a story about a healthy active woman diagnosed with cancer but survives well due to effective care from well-funded research. They are donating $150 to SU2C with every new client.
How is your business using story to be memorable, engage listeners and inspire trust? I’m an expert in crafting story for this purpose. Let me help you!
Canada is a huge country and not too populated so they open their doors to loads of people from all corners of the world who are young enough to add to the work force and hopefully add to the population by starting a family there.
My taxi driver from downtown Saskatoon to the airport told me his story about coming to live in Canada from his home on a farm in the north of India. He is a computer engineer pursuing a masters degree in computer technology. He knew no one in Canada. When he arrived at the airport, he called the number of a man who was supposed to help him get settled. The man did not pick up his phone. He sat at the airport for a while thinking about what he would do. A man approached him and asked if everything was OK. He explained that he doesn’t know how to begin his life in Canada. The man said he knew of two men looking for a third to share an apartment. He called and the place was still available. The man was a taxi driver and drove him there. To pay his way through school, he too became a taxi driver and the two are still best of friends.
Two years ago, after my lecture for the National Oral Health Conference in Huntsville Alabama, I grabbed some dinner at the hotel restaurant. When I went to pay my bill, the server told me it was taken care of. I inquired by whom. I walked over to the ‘lady over there.’ Shelly Spoeth, currently a VP at Hager Sharp explained that she wanted to do a kindness for the kindness I shared by telling my story. We became fast friends.
Today, Shelly’s company @HagerSharp sponsored my presentation, ‘Ignite the Power of Story,’ at the National Conference on Health, Communications, Marketing and Media. The theme of this years CDC’s conference is “What’s Your Story?” Attendees share stories to build awareness of their programs, solicit new funding, and educate the general public about healthy living. Stories are a tool for effective communications and they wanted to sharpen their storytelling tools.
Networking. Meeting new people. You never know how a little kindness can change worlds!
“We were engaged 35 years ago, but never married. Now, we are engaged again,” explained the couple sitting at the next table at the restaurant. I started talking to them when the server rolled the cooking table over with the ingredients to prepare my favorite dessert in the world, bananas foster, which is served flaming. Why not include the only other couple in the restaurant eating at 10:30PM right beside us.
“Now that’s a story. Why didn’t you marry 35 years ago?”
“Two friends of mine told me he got back together with his x-girlfriend. I came over to his house with a bat. He was drinking that night with friends and wouldn’t come outside to confront me. I wasn’t about to marry a man who was going to cheat on me. I went back home and never wanted to see him again.”
They both married other people. She was divorced in 6 years. Working on a submarine helped the longevity of his marriage. But ultimately, as he puts it, “I just didn’t get along with her boyfriend.”
When he was discharged as a disabled vet for requiring to live the rest of his life with a colostomy bag, and left his wife, he looked up his old flame. It didn’t take more than a couple of dates for them to realize they were meant to spend their lives together.
He no longer cooks for the submarine he worked on for two decades. Now, he cooks for his fiancee.
As we got up to leave, I wished them a long life together of good health and happiness. Oh, and then I asked them their names. Sharon and Tommy.
When I meet a person, I’m anxious to know their story. What do they stand for? How has their life experience shaped them? I met Samantha through this article in Business Insider and her story is worth telling. She is a professional hugger. She hugs people for $60/hour and makes $7200 a month. Soon she is opening a retail shop where she will certify Huggers in a 40 hour course. Oh, the stories she must hear! I’ll bet her next venture is to write a book about her hugging history! Samantha created a business cuddleuptome to meet one of her own needs: to be hugged, loved, accepted after being out of a relationship for 13 years.
How are you meeting your own needs in your line of work?
A story not silenced. When I spoke to this radio interviewer, I heard words are slightly slurred and others annunciated with a struggle. Very quickly into the conversation, I got past the struggle and heard the strong vice and smart mind of this man who has a passion to improve the world by being an example himself of overcoming big time limits. Christopher Powell interviewed me for 30 minutes on his Overcome Your Limits radio show about surviving stage IV tongue cancer. I could tell I was speaking with someone who understood the trials and tribulations of turning adversity into opportunity.
Chris was born with cerebral palsy. Despite his limitations, he began working out and left the wheelchair behind. He graduated from the University of Maryland in mathematics and is the director of a mathematical learning institute. He has even become an avid runner! Chris is the beneficiary of a recent technological advancement called Dragon NaturallySpeaking 10 which aides him in completing written tasks and allows for more independence in his overall life.
Chris inspires all who know him to move past your limitations and focus on your gifts! He has many….but just look at that smile and you can tell for yourself!
A story not silenced. She was raised by a single mother in upstate NY. She was a ‘good kid’ and stood out as a great dancer. By age 12, she knew she was gay and became outspoken about her discovery, causing unmanageable friction in the house. In this day and age, there are still parents who just can’t figure out how to accept their children for who they are and build on that uniqueness instead of having that nagging unrelenting feeling that they are ‘not what they imagined.’ What does a child do when she knows she isn’t loved and accepted? She breaks rules to prove she has power and worth. In this case, she stole bikes and fought with other teenagers. This single mom working a couple of jobs couldn’t handle any diversion from the well-behaved, grade-passing, obedient child, and moved her to a foster home.
This is a strong-willed child who didn’t accept government and parental demands about where she is to live. So, she ran away, many times. Finally, she asked to be moved to a foster home for gay youth, and this is where the turn in this story begins. Good for Carolyn – ask for what you want and need!
Once she was among young people who understood her and she them, she used this power and emotional stability to build on her unique talents. What a beautiful thing! If only all children had the chance to feel accepted, unconditionally loved, and praised on a regular basis for their unique talents, this world would be a happier, more productive place!
Her success story continues with dancing for people on the subway. My favorite line in the NYTimes article where I read about her, is the sign she displayed while dancing on the subway: ‘I’m all by myself — please show your love, not your anger.’ Once again, she is asking for what she needs and wants.
Within a couple of months, she joins a dancing crew. Then, another. Then, she starts her own dancing crew! She began getting jobs dancing at birthday parties and bar mitzvahs, and now has a roster of about 35 dancers to call upon. She receives Facebook messages from dancers all over the world sending video auditions for entry to her group.
So, what do we learn from this 20 year old success story? Ask for what you want. Accept children for who they are. Build self-esteem through praising the unique talents in a child.
Her name is Carolynn Clarke AKA Boogie. I’m going to look for her when I next visit Dr. Urken whose office is on Union Square right near where she and her crew, ‘The Raiders of Concrete’ dance.
“In my heart of hearts, I wanted to do the right thing, but selling drugs was easy. Everyone was doing it. I mean, I’m not using that as an excuse, I made my own decisions. But I grew up around these Robin Hood figures who would sell drugs, then buy supplies for kids who were going back to school, or pay rent for an old woman who was about to get evicted. All my friends were doing it. It almost seemed fashionable. I never felt proud of it. I always thought I’d transition to a job with the Transit Authority, or a job like this– something I’d feel good about, but instead I transitioned to jail. I did six years. When I got out, it was tempting to go back to the easy money, because everyone around me was still doing it, and I couldn’t get a job. But luckily I found an agency that helps ex-cons, because there aren’t many companies looking to give people a second chance. I’ve had this job for a few years now. You know what product I’m selling now? Myself. Everyone around here is my client. Times Square is a drug to these people. And I’m picking up all the trash so that they can have the full Times Square experience.”
A friend recently walked in memory of a young woman who took her life. I saw this poem and slightly adapted it to remove the religious tone. Those who fight suicidal thoughts may find some comfort in this poem:
A Higher Self
In this moment I choose to recognize that there is within me a perfect Self.
A Self that is not weak, but strong.
Not limited, but unlimited.
Not faithless and scared, but all-knowing, all-loving.
I have been playing with the toys of death and weakness.
I have been playing at sickness and addiction.
I have been playing at violation of myself and others.
But I desire to play the games of death no more.
In this moment, I ask to be released from my destructive thinking.
Turn my pain to peace, my fear to love.
May I feel the abundance of life’s magnificence.
May I feel the powerful love sent to me from the people in my life.
I look up to heaven and ask for light.
I step out of my childhood into my adulthood,
out of my weakness into my strength,
out of my small self into my renewed self.
Adapted slightly from Marianne Williamson, Illuminata
Sign up for our e-newsletter and receive "11 Free Tips on What to Say - What to Do When Someone Is Ill."