Linda Black

I have always been fascinated by the concept of story, intrigued by the broad scope of it.  How we speak, paint, sculpt, reenact, or retell in some tactile way significant events in our own lives and those to which we bear witness, and how our stories evolve and become woven into the fabric of our collective history. It seems that the old adage everyone has a story doesn’t quite cover it.  We each have many stories and we have cousins of stories – those we may come across that become part of our own lexicon.  My love of story has been the impetus for many of my life choices, certainly among them, becoming a journalist.

It’s why, in my early career, I left my Ontario home and got a one-way ticket to the Virgin Islands, where I landed an associate editor job with Portside, an unusual magazine with the niche market of crew of cruise ships with Caribbean ports-of-call. More recently, in 2010, I launched a beautiful world†culture and lifestyle magazine called AVALON, which I published for three years. Now I’m the editor of a wedding magazine on Martha’s Vineyard called Island Weddings. While it has infused my career as a journalist, my insatiable pursuit of story has also fueled my two lifelong loves of travel and culinary arts. And it inspired exploration of other storytelling forms such as spoken-word poetry and screenwriting. And thanks to narcolepsy, I have a rich and vivid dream life from which I’ve been able to draw every step of the way.

Yep, I’m using thank you and narcolepsy in the same sentence. Navigating life as a person with narcolepsy can be difficult. It’s challenging to fit into the 9-to†5 box of the working world, for example. And it can be potentially dangerous, like if we slip into a hypnagogic hallucination crossing a busy street. But I have come to believe that narcolepsy is a gift. One that can be burdensome, but a gift nonetheless. I see it as a different way of being in the world, as part of my story. Where we PWNs find some things difficult that others take as a matter of course – like wakefulness – we are also gifted with heightened awareness and other abilities, especially our ability to move easily between the waking world and dream world. Some people spend their lives seeking entry to the deep well of dreams. We come to it naturally.

My dream life infuses every aspect of my waking life, how I think, how I parent, how I heal, how I am in relationships, how I cook, how I work. I believe our dream selves are as valid, as essential as our waking selves and have a lot to offer our more judgmental and rigid waking personas. My dream self is my own higher guide, my teacher. That’s the premise behind every workshop I facilitate, and especially the Dreaming Your Story workshop, where participants are encouraged to explore their dreams, to write them, and to use them to shine a light on their waking lives. I take that premise, too, in the Talking Sticks workshop, where participants are encouraged to value their own stories, and to share them, and to give the gift of listening to others. (I’ll be offering both workshops at our Mile†High Dreams conference in Denver.)

In honor of one of our fellow PWNs, Sharon Smith, who brought so much to our community and who will always be part of our shared story, 5% of proceeds from all the Dreaming Your Story workshops I facilitate (anywhere, anytime) will go to the Sharon Smith Scholarship. The scholarship was established by Narcolepsy Network to help send financially challenged PWNs to the annual conference. (Dreaming Your Story and Talking Sticks workshops at the conference are, of course, free to all attendees but I’ll have a donation jar out if you’d like to contribute to the Scholarship.)

Please visit www.alltheirlives.com to find out more about my film project and my workshops!

Melissa Patterson

My name is Melissa Patterson and I am Narcolepsy Network’s new Outreach Coordinator. I was diagnosed with Narcolepsy with Cataplexy about 10 years ago, in the spring of my freshman year of high school. Sometimes I joke that I slept through freshman year, but to be honest, I had probably been symptomatic for a couple of years. I am tremendously grateful for my parents’ never ending support, especially my dad, Dr. Mark Patterson, who is a Pediatrician in Roanoke, VA. The fall after I was diagnosed, he flew out west to the annual NN conference and the ideas and knowledge he brought back really helped with finding a treatment combination that worked. I feel especially lucky to benefit from my dad’s medical expertise, but I’m also grateful for his involvement in NN as a volunteer and board member. Most recently, he started a brand new fundraiser, the Annual Narcolepsy Bed Race in Roanoke, VA, which is a different and entertaining twist on a fundraising walk/run. I am also deeply grateful for my Mom, Deborah Patterson, who would move heaven and earth to help me. She has spent hours and hours wrangling with schools, insurance companies, the DMV, and doctors’ offices, on top of dealing with my sleep-deprived, newly-diagnosed-and-full-of-attitude teenaged self, and looking back on it she should probably be nominated for sainthood.

After I finished high school in 2007, I moved on to the University of Mary Washington where I earned my B.A. in Sociology. I started graduate school the next fall, and in Dec. 2013 I graduated from George Mason University with a Master’s in Public Policy. After all that school, I am very familiar with academic accommodations for students with narcolepsy, and I’ve created several resources for students that can be found under the “For Students† section of the NN website. Helping other families and PWNs successfully navigate the educational system is one of my personal goals as a NN member and volunteer, and I look forward to continuing to help other PWN as Narcolepsy Network’s outreach coordinator.

Right now, I am working on a handout about dealing with narcolepsy for elementary school students and would love to get input from any parents or kids who have advice, questions or anything else to say. Other recent efforts to raise awareness about narcolepsy include talking to medical students about the condition and my diagnosis, attending the FDA panel on narcolepsy, and of course, attending the most recent NN conference in Atlanta, GA. I also helped out my dad with the Second Annual Narcolepsy Bed Race, and appeared in the Roanoke Times’ newspaper coverage of the event.

In addition to the work I do for Narcolepsy Network, I am also an amateur artist and jewelry designer. You can find me on Etsy and Facebook as Halfdreaming Jewelry and Art (ironically, the name predates my narcolepsy diagnosis), and I am always interested in connecting with other creative and artistic PWNs. Other hobbies include horseback riding, singing and creative writing.

Finally, I am truly thankful for Narcolepsy Network and all the wonderful volunteers and NN members. Together, they have made Narcolepsy Network and wonderful resource for PWN, whether they have just been diagnosed, or have years of experience managing the condition. The conferences are a fantastic opportunity to meet other PWNs and a great source of information and support for family and friends as well. I am really looking forward to being part of the Narcolepsy Network staff and helping them continue their valuable work.

 

Danielle Brooks

Success isn’t just about what you accomplish in your life it’s about what you inspire others to do. – anonymous

My name is Danielle Brooks. I am 17 and a junior in high school. I have an older brother Austin who attends Georgia Tech and a younger sister Gianna who is in 7th grade. My parents Chris and Diana are always there for the three of us. They encourage my siblings and me to follow our dreams, do our best and pursue what we believe in everyday. I am convinced that it is this encouragement, which inspired me to determine shortly after my diagnosis that I would not let this illness define who I am, but instead it would make me a better stronger person. I knew God wouldn’t give me something I couldn’t handle. A short time later, I found “my† C.S. Lewis Quote and I took it to heart†¦.he wrote “Hardships often prepare ordinary people for an extraordinary destiny.†

As most of us have probably done, after my diagnosis, I scoured the Internet. I have to say, it was hard to stay positive. There are many, many heart-wrenching stories out there. However, I did see one beacon of light that I seemed to really grasp on to. It is Julie Flygare’s running of the Boston Marathon. She called herself the REM runner and given what I was going through, this seemed really important to me. You see, I am a competitive swimmer. I thought to myself, I could inspire the world with my swimming. My brother even nicknamed me the “Nautical Narcoleptic.†

Three years later, I am doing much better in my swimming but I am still a long way from inspiring many folks, yet alone the world. (Give me a little more time; I am still working on it.) I have tried to be an outspoken advocate for Narcolepsy. I talk to students and faculty at school, neighbors, news reporters, my other doctors, even during sporting events, pretty much anyone with ears.

Because of my chatter, I have met two wonderful young ladies (ages 11&12) who have recently been diagnosed with Narcolepsy. They inspire me to do more and I hope I inspire them that they can have a balanced workable life with good grades, sports and friends.

Somewhere along the line, I realized the arrogance of thinking that I can inspire the world alone. Don’t get me wrong; I am not going to give up. But, I have realized that I needed help and that I cannot be afraid to ask†¦

So†¦I am asking YOU! Help inspire the Narcolepsy WORLD with me! Send me your inspiring story of how you are “Succeeding With Narcolepsy.† Are you a Doctor,  Lawyer, Singer, Dancer, Teacher, Mechanic, Community Volunteer, Sky Diver, Lion Tamer, Nurse, College Athlete, or Aspiring Athlete? Are you a Student on your way to success and greatness? Tell me about it. Did you run your first 5K this year? Tell me how and why you did it. Are you a great Mom, Dad or Partner with Narcolepsy or helping someone succeed with Narcolepsy? Tell me your story of winning. WE ALL WANT TO HEAR IT AND IN FACT THE WORLD WILL TAKE NOTICE AND BE INSPIRED. Trust me, you don’t have to be the best at anything, I just want to hear your story of success and no success is too small.

Visit  www.Succeedingwithnarcolepsy.com, and read about famous people with narcolepsy who have gone before us. In addition, we also have “Soon to be Famous People with Narcolepsy,† like you and me.  Eleven people have already shared their success story. Trinity, one of the little girls I mentioned above, is on the site. She was named the Gatorade Player of the Game at the county Basketball Championship. We have doctors, students, artists, an engineer, and even a real Antarctic explorer. I want to post your “Succeeding With Narcolepsy Story† to inspire others. It will reach someone at the right place and right time to make a difference.

Finally, I want to thank Narcolepsy Network for all the great work they do the and for letting me tell my story and sharing my site with you.

Sincerely, Danielle Brooks

 

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