Connecting through Storytelling

By: Matt Cavallo

When I was first diagnosed with multiple sclerosis, I was afraid. I didn’t want anyone to know that I had this potentially disabling disease. I was afraid to tell my boss for fear of losing my job, and I was afraid to tell my friends because I didn’t want them to think of me differently. I started pushing away the few people in my life who did know what I was dealing with, because I was afraid of them seeing my condition progress. This included my wife. I was stuck in a deep depression. For all intents and purposes, my life post-diagnosis was being spent lying in my bed watching daytime reruns.

This all changed when my neurologist at the time in Boston asked me to come out and speak at a patient event. She wanted me to tell them the story that I had shared with her about how I got my dog. I was nervous. Not only had I not been telling people about my MS, but now I was going to be up on a stage talking to a big group of strangers about an intensely personal struggle that was raging inside me. That night came, and it changed my life forever.

In an instant, surrounded by a group of my peers living with multiple sclerosis, I realized that I wasn’t alone. By sharing my story that night, I felt a weight lift from me, as the people around me opened up and started sharing their story, too. I was no longer ashamed, embarrassed or depressed that I had MS and was not the man I used to be. Instead, I felt empowered and was embracing the opportunity to connect with others on the most personal of levels, united by this MS tie that binds us.

Sharing my story has opened up doors to places that I had never dreamed of before. It has taken me from coast to coast, putting me on TV, exercise DVDs, newspapers, radio shows, and even onstage in Las Vegas. Had I given up on myself back when I was diagnosed in 2005, I wouldn’t be living these dreams and ambitions that I never knew I had. While there have been many personal accomplishments since my diagnosis, it is always the personal encounters that I value the most.

This is just one example of thousands I have experienced on my journey:

At a restaurant next to the Savannah airport on one of my recent trips, I sat down next to a man who I would say was probably in his twenties. I turned and looked at him and asked, “What is good here?”

“Try the Tybee Island, and you can’t go wrong with a burger,” he replied.

I took his advice and complimented him on the local beer recommendation as we started talking. He was a pipefitter on a job assignment from South Carolina. He was missing his wife and little boy, but still had some time left on his job.

“What brings you to Savannah?” he asked.

“Storytelling,” I replied.

He was intrigued by my answer, so I explained to him that I go around to hospitals and talk to doctors, nurses, therapists, and other clinical staff about the patient experience-and that I also speak to patient and caregiver groups.

“So,” he says, “what kind of doctor are you?”

“I’m not,” I replied, “I’m a patient. I tell them the story of how I got my dog.”

He was captivated and wanted to hear the dog story. So, I told him the story of my symptoms, that I lost my ability to walk and go to the bathroom on my own, and how my diagnosis of MS led to my wife getting me a dog for my birthday, and ultimately my promise to walk him every day. I told him that it had been eight years since then, and I have still kept my promise. I could tell by the look in his eyes that he needed a story like mine on that night.

My food comes, and I order another beer. We go on to talk about the kids. He settles up his tab, shakes my hand and pats me on the back.

“It was great meeting you,” I said. He returned the sentiment.

I finish my burger and beer, then I ask the bartender for my bill. She turned and looked at me and said, “That man that just walked out paid for you and the tip.”

My jaw dropped. I wanted to thank him and say that it wasn’t necessary. I ran out to the parking lot, but he was gone. I couldn’t believe that a complete stranger, a kid in his twenties and someone who had never heard of MS, would surprise me with that selfless gesture. All I did was share my story with him.

Encounters such as this have reinforced to me the power of storytelling. Your story is your power. Many of us living with multiple sclerosis get stuck in the same depressive rut that I experienced when I was first diagnosed. When you are able to open up and share your story with others, you will realize that you are not alone. Each one of us living on this planet has some cross to bear. Ours just happens to have a name: MS. Sharing may make you vulnerable, but you’ll also find that when you open yourself up to others, you truly see the good in people. To the stranger in Savannah, thanks again for the burger and the beer. I will pay it forward.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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I’ll Meet You on the Internet: Social Media is the New Support Group

By: Jeri Burtchell 

When I was young, I would roll my eyes whenever Dad began a sentence with “back in my day.” Whatever he was about to reveal was sure to be irrelevant now. Times change and one generation’s “cutting edge” becomes passé to the next. And now, when I reflect on my early life with MS, I find myself sounding just like my dad.

Back in my day, Jeris blogwhen I was diagnosed in 1999, I didn’t have a computer, let alone internet. If I wanted to find out about my condition, I had to go to see my neurologist. Who else had the answers? There was no Google to ask, no “Web MD” to consult about symptoms.

Back in my day, if you wanted to connect, you went to a real support group and talked to one another face to face. We weren’t sitting in front of glowing screens connected to typewriters, pouring our souls out to faceless strangers. I would have laughed at such a prediction much the same way my grandparents would have reacted to the concept of television.

With every new iPhone release or tablet launch, technology is evolving, redefining our relationships and how we interact. In a way, I am melancholy for a time when “social” meant playing board games or telling stories round the campfire. Not to worry, though, no doubt there’s an app for that.

But then I consider how the internet has empowered the chronically ill, and technology is easily forgiven for its domineering takeover of everyday life. Housebound no longer means isolated. Loneliness is banished by the wi-fi connection.

From blog posts like this, to message boards, to Twitter and Facebook, we are all interwoven now, able to instantly respond to what we read or see. We exchange ideas, comfort each other, help each other find answers, soothed by the reminder that we don’t battle this disease alone.

From the time I blogged my clinical trial back in 2007, I saw firsthand how my words, launched into cyberspace, connected me to others: a pure and unbridled connection of thoughts. They weren’t clouded by self-conscious worries of how others might perceive me. And let’s face it, who doesn’t love going out of the house “virtually,” not having to worry if your clothes match or hair is brushed?

In fact, I’m sitting here in my bathrobe at 4 a.m. writing this blog post, connecting with you on my terms, at my time. It works both ways since you are reading this at your convenience, on your terms — and maybe in your jammies, too. The freedom and control is undeniable.

No matter if you are a ballerina who can stand en pointe or your soul does a dance from a chair … we can all fly free here, expressing ourselves online.

For a time, I thought my internet MS social circle was all I needed for support. Then I had an opportunity to be a patient speaker for Novartis, sharing my Gilenya experience with others. Interacting with group after group of MSers around the country, I was honored to meet new people, all so different from me, yet we all have MS as a common denominator.

That face-to-face connection allowed me to hear the inflection in their voices, read the emotion in their eyes–something the internet has yet to replace.

I am no longer a speaker for the drug, but I was so moved by that experience that I started a support group in my county. I was hoping to bring that personal connection to those in my community who are living with MS. So, I have come full circle and realize interacting in person is still an important piece of the social puzzle. Nothing can take the place of a real hug from someone else who “gets it”. No amount of emoticons can compare.

But when you live in the sticks, or your condition makes it hard to get out, the MSers of today have something we didn’t have–back in my day–people who know exactly what you’re going through and they’re only a keyboard away. The internet is full of support.

Sometimes I wonder what Dad would think of us connecting on the internet. I’m fairly certain that if he began his reply with “Back in my day” it would probably end with “I couldn’t have imagined anything as empowering as this.”

References:

http://www.gilenyaandme.com/

http://www.healthline.com/health-slideshow/multiple-sclerosis-support-groups#1

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

 

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