15 minute read
ONE TOUGHT MOTHER
PAT FURLONG
BY CHRISTINE PIACENTINO
I am thrilled to introduce the Rochester Woman Online community to one of the most empowering people I know. I began navigating the hard and rocky trail called Duchenne MD 24 years ago. Early in my journey I met Pat Furlong the founder and president of Parent Project Muscular Dystrophy (PPMD). I received a call from Pat on a cold wintery day in Rochester. She invited me to the PPMD conference. The conference convenes parents, physicians, and researchers from around the world. Pat is nearly 6 feet tall and thinks as fast as she walks. I must race to keep up with her. Her knowledge and leadership provide hope to many families like mine. Pat’s two sons Christopher and Patrick lost their battle with Duchenne in their teenage years. Today Pat continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world. Pat also has two daughters; her perseverance is in honor of her two sons who continue to motivate her efforts.
Can you tell us a little bit about yourself? I had no intention of being part of the Duchenne community this long. When we started PPMD in 1994, I naively thought we would have a cure and I would be spending these years with my sons and daughters and a ton of grandkids I would spoil rotten.
When my sons were diagnosed in 1984, I went to the library to find everything I could on Duchenne. This was before the internet. We’re talking microfiche and a card catalog! My husband and I are both medically trained – he’s a retired family doc and I was in nursing – but Duchenne was something we might have covered
in a half-day course on neurological diseases if that. It was hard to find a community, to build an army to fight this horrible disease. We needed to unite all the families that, like ours, felt alone.
What is the biggest achievement in Duchenne since PPMD has been founded? There are many things I could talk about here to include research, care, policy the words Impact, influence, and change. But the most important is perhaps that we have formed a COMMUNITY. We have found ‘our US’- a community of stakeholders with a common goal.
Looking back through years of PPMD is there anything you would have changed or do differently? It is difficult to look back, but the one thing I might have wished for is to have long-term vision. While PPMD, which suggested ‘parents’, a longer view would have been more inclusive of all stakeholders in the field – parents, people with Duchenne, Becker, females with dystrophinopathy, sibs, friends, academics, clinicians, companies – every single person or entity that was or could be interested in moving the field forward, improving both quality of life and life span and develop therapies that would change the trajectory for all.
In 2010 the New Yorker did a story on you entitled “Mother Courage”; how did it feel to be the inspiration of an article in the New Yorker Magazine? We all have so many stories and I think we learn so much from story. I felt incredibly honored when the New Yorker reached out to me. John Colapinto was assigned to write the story and I was at once comfortable that the story would be both honest and respectful.
I was most grateful that a publication like the New Yorker would feature Duchenne. From the day of diagnosis when we would hear people confusing Duchenne with MS and others suggesting they had never heard of Duchenne, we wanted to spread awareness, to have others learn and hopefully to impact a number of areas – primary healthcare, where the diagnosis is often missed and for patients, the diagnostic odyssey taking years; for academics with interest and others who could be recruited; for policy makers to take notice about the need to invest in Duchenne and rare diseases; for companies to learn about Duchenne and commit people and resources to develop therapies and for the whole world to stand up and take notice.
What is your greatest superpower or strength? In my head, it is the wish for magic which never, ever goes away. Often, I hear the echo of my father, often frustrated with my behavior growing up. He would say, YOU CANNOT ACCEPT THE WORD NO and YOU WILL ARGUE with GOD HIMESELF. At the end of the day, two things come to mind. The first is resilience. I have fallen on my face more times that I can count, and I suspect I will continue to fall or misstep. There are times when I think ‘walk away, this is too hard’. And then I close my eyes and see my wonderful boys sitting in their chair and smiling, carrying so much that comes with the diagnosis and never, not ever complaining. The second is persistence.
I continue to dislike the word NO, but have added additional context, and that is WHY because I have learned that understanding the WHY piece enables additional questions or workarounds if that means something positive could happen, something could change or move in the right direction.
When most people start a Non-Profit to help cure a disease for a family member, it becomes overwhelming, and they give up. What is drives you to keep fighting? It is easy to give up. Research takes time, people and money and often good ideas go right into a wall. It is frustrating to watch someone you love decline.
The devastation of the diagnosis, the grief and sadness you feel, the wish to change places and the knowledge that time is the commodity, the exchange rate for progress. For me, Duchenne is equal parts – frustrating, painful, fascinating from a scientific perspective. Still, to this day, when walking on the track and watching the soccer team practice, my internal discussion is around ‘this is how muscle is supposed to work’ and to that end, want to better understand and be one of the spokes in the wheel of progress. The lesson we all need to take to heart is that it is HARD, but worthwhile to be part of something bigger than yourself and for the person you love, to continue for them, with them and for all others along the way.
To join the fight to End Duchenne please visit https://www.parentprojectmd.org/
GET YOUR CON ON
BY TAMMY VREELAND
Not what you may think. In this case, I’m talking about a “CONvention”. Now you may wonder, how does this tie into National Holidays? But to be fair, National Holidays are not only something to celebrate but also something one can actually do, when you can’t think of anything else for the weekend!
And you noticed I said “weekend” so we’re not talking business conventions! There are other conventions out there and one of the first thing that comes to mind when you hear a “Con” is perhaps ‘Comic Con’ but did you know there are other types of cons?
Now, before you roll your eyes and think - ‘so not for me’! Give me a chance to tempt you into trying it!
First, what is a con? A con is a gathering of people with common interests. Or, so you would think. Personally, I never had an interest in going to a comic con because simply I’m not into comic books, superheroes, or let alone dressing up like one! So, I figured I would not enjoy it.
But let’s nip that preconceived idea in the bud and explore the alternative ...what to do for the weekend? This is exactly how I discovered the wonders of a con! We were bored, and I saw someone post on Facebook that they were going to the NJ Horror Con in Atlantic City.
Not understanding what it was, on the spur of the moment we hopped in the car and saw for ourselves. We did not know what to expect, but I like scary things, so that was a start. Plus, how could we go wrong? It’s in Atlantic City! Plenty of parking, lots of good food and the boardwalk! Now our boring weekend suddenly became something exciting!
But what to wear? We had no idea! We opted for the safe course of looking normal. Nervous that we’d look like the newbies we were, we bought our tickets at the door (which we were fortunate we could) and ventured in.
Yes, there were people dressed in horror theme costumes but there were just as many not - which put us right at ease. No longer did we worry about them all pointing at us and screaming... ‘not one of us’!
In fact, it was so laid back and friendly, it made us want to be a bit more involved! There were professional cos players such as Mike McManis with the Disturbed Cosplay from Jenkintown, PA who is the amazing Frankenstein behind me in the picture! Then you have the very talented Shelby VanValk who helps design some of his costumes and comes up with amazing ones for herself! I admit, we were a little timid to approach the celebrity’s tables at first because we weren’t sure if we had to pay to talk to them? However, we quickly realized they loved talking to us as much as we did them! Sure, you could buy their photos signed or possibly a photo with them, but no one ever pressured us to buy anything. The option was ours to take home a memento from them (which I admit I couldn’t resist) and most took credit cards! Whew!
But that’s not all! We realized there were actual viewings of Indie movies, included in the price! You could come and go, as you please. In fact, there were lots of events going on! Costume contest, awards, photo events all happening throughout the weekend!
Among all of that, you had other tables where Directors, Authors and Podcasts were on display. We instantly became hooked! So much so, that the very next New Jersey Horror Con, I too became part of it and have a table of my own.
There were Deadly Grounds that had ‘coffee to die for’. Gemini Crow for hot sauces and jerky. And so many other vendors anywhere from new toy ideas to strange oddities. The vendors alone seem to put on a show of their own!
Then there was the euphoria of meeting actual movie celebrities! There I was, talking to an actress I saw on the big screen when I was in High School! Trying desperately not to be too star struck, her and I had a very normal, pleasant conversation. Meanwhile, inside my head I’m going oh my gosh, oh my gosh, wait till the girls hear about this! And let me tell you, what a rewarding event for me! Not only was I able to display my books, sign my books, but actually interact with the very people I had always wanted to write for! To hear their thoughts and ideas, what they enjoyed reading. It all gave me more insight, to help me write my future projects.
And did I mention you can bring kids? At first, you my shudder at the thought of bringing kids to a ‘Horror’ Con. And yet, there are quite a few things the kids will enjoy and actually know. Often you will find Ghostbusters, Spaceballs and even Beetlejuice there!
I too have a display of my children’s book ‘Urie learns about Halloween’. Which in fact, it almost feels like a Halloween for adults, giving you the chance to get dressed up right along with your kids! And as I say in my children’s book - Halloween doesn’t have to be scary but spooky is fun! All costumes are appreciated and enjoyed.
Many times, when I am telling people about the con, they had never heard or thought about going. Before you know it, they start either planning for the whole family to go or an awesome weekend with their friends. It’s an event that is so easy to make an enjoyable weekend!
In fact, with October coming up, maybe we could look at a couple National Days to put us in the mood for the big New Jersey Horror Con that is coming up on November 12th, 13th & 14th! October 17th - National Holiday - Pay Back A Friend Day - What a perfect way to pay someone back with a surprise weekend to Atlantic City for the New Jersey Horror Con!
October 31st - National Holiday - Halloween - Of course, we all know what day this is! But, this year did you have an awesome costume? Just think! You can wear it again for the New Jersey Horror Con!
Although I may be partial to New Jersey Horror Con, I quickly came to realize I needed to give other cons that I thought I’d never want to go to, a chance. And I am so glad I did! Because what you quickly learn is the people going to these events - no matter what con it is - are out to have fun and socialize! You find yourself caught up in their whirlwind and before you know it, you are enjoying it just as much! So, remember November 12th, 13th & 14th is the New Jersey Horror Con located at the Showboat in Atlantic City, NJ - and yes, I will be dressed and even have a table of my own! Come on down and see me! We can talk horror, or perhaps my children’s books or even about this article here.
Meanwhile, you will also get to experience a con, one that is trusted and true presented by Ryan Weber for several years! And honestly, something different to do on a weekend. But be careful, once you go we may hook you into coming back, for we welcome all to become ‘one of us’!
Check out their website at www. newjerseyhorrorcon.com they have events in Pennsylvania as well!
THE STORY YOU’RE TELLING
BY RAQUEL WALKER
Seek the puddles, ponds, lakes and streams in life where uncomfortable emotions reside. Seek them out that you may understand them, observe them and if far too often you endure the fortunate misfortune of falling victim to them. The goal, always, is to observe, learn and heal. Yet after the fall, you must reason with yourself to rise. These emotions are the tributaries of the ocean that is the soul. The clarity of which is improved each time you settle in to do this work.
INTUITIVE GUIDANCE
I first began to consciously seek a greater understanding of my existence at around age 15. I was such a bookworm, and as I find the time to read once more I recall easily the joy of sinking into a book that simply seemed to understand me, or excite me page after page or led me to far away places I dream to explore in person. Books have always been the gateway to the soul for me. So it is fitting that one of the most influential books, and maybe the only book I recall the title of with little to no effort from my younger days is “The Seat of The Soul” as I sit rereading my original copy I am giving attention to the areas I highlighted. The thoughts I extracted to guide my younger self.
I am in awe of my younger self, she has done an amazing job carrying and passing the torch of my soul.
My teenage self got it done, ok! Before heading out on vacation this week I complained to myself about how tired I was. With such attitude, self determination and power my teen self replied, “no you’re not, this is what you wanted. This is what you have worked for.” I stopped in my tracks at the clarity and strength of her presence.
THE STORY YOU’RE TELLING
I chat with a client during what I call a table talk session recently. These talks usually occur with intention during reiki, they may authentically form with any service if that’s the way the client engages.
This client wanted to understand why so many negative responses were attracted to them. As they talked about a recent incident I began to observe the pattern of words. I can’t x, I don’t have y, I never z. The story that we retell, it is simple to perceive that it is just a story of the past. However, I have personally experienced through doing this work within my marriage, you continue to experience what you continue to create. Storytelling is a process of creation. Each time you tell the story you also engage those emotions. Your emotions are a powerful tool of creation or manifestation.
We are in a stage of growth collectively where it is necessary to stop. Stop reacting in the way you always have. Observe that you are feeling, question those feelings, imagine yourself as an art exhibit musing over the intentions of the artist, the medium used etc. Become curious about your emotions and get that they are not about the trigger or the other person. They are about you, parts of yourself that are asking to be seen by you.
GROW ON THE GO!
No captain goes to sea thinking that they will never make it to shore. Endure your journey with confidence and joy. Take it at your pace and be as patient as possible with yourself. Think of your emotions as water on the deck of your ship. It can’t all stay there, you must work to clear it, know where the breach is and mend it, maybe you are passing through a storm, you don’t anchor into it, get through it. This is life, we grow on the go. It is my dream that every person, women especially, possess an unshakable awareness of their inner strength, their higher self that calls them deeper into the ocean of the soul. Follow your guides and understand your purpose. Everything else is a distraction.
