Today's blog is going to be a very personal one for me. It is the first of a series of blogs that will explore the neuro-muscular disorder, Friedreich's ataxia.
According to the Friedreich's Ataxia Research Alliance, FA is: "A debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood".
Symptoms include:
- loss of coordination (ataxia) in the arms and legs
- fatigue - energy deprivation and muscle loss
- vision impairment, hearing loss, and slurred speech
- aggressive scoliosis (curvature of the spine)
- diabetes mellitus (insulin - dependent, in most cases)
- a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)
However, the focus of my blog today is not solely on FA. Today I get to write about my hero, Sara Marie Ferrarone, who happened to have FA.
Sara has been my best friend since childhood, and has hands down been the most influential person in my life. She is also the person who inspired the founding of Arts Connect International. Everything I do in my life is a direct result of the love that Sara gave me, and the strength, courage, and laughter she bestowed upon me in the twenty-six years we were lucky enough to have her on this planet.
Today, I am going to share a narrative I wrote on October 7th, 2013. As you'll read below, Sara loved birthdays, and October 7th will always be hers. 2013 was the first year we all celebrated her birthday since her passing. This narrative, correspondingly, is from Malawi where I was living at the time. In October, 2014, we again celebrated Sara and her life with the launch of Arts Connect International in Boston.
It was a real honor to raise our glasses in celebration of Sara's life this October, standing in a room full of inspiring artist leaders and change agents who are actively working to make our world a more inclusive place for all.
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Title: Sara Marie Ferrarone
Date: October 7th, 2013
Preface
October 6th, 2013
When I think of Sara I remember her laughter, it was contagious. When she really got going her head would fall backward, her mouth agape baring all teeth, the sound becoming almost inaudible while her abs contracted as if she were trying to earn a six pack before summer. Her arms would fall to the sides of her wheel chair, opening up her chest and shoulders to join the dance. Her blue eyes would reflect the child-like joy of these moments, the innocence that will be Sara Marie’s for eternity. After endless moments of this joy she would gasp deeply for air, a bellowing sound building from the depths of her gut would fill the air yet again, and all in attendance would break into laughter once more. This session would repeat itself until we were all red-faced and crying tears of joy with uncontrollable force.
One of the most beautiful parts of Sara was how often she graced all of us with this laughter. Truly, it didn’t take much to get her going. When I realized this during the early days of our friendship, I intuitively took it upon myself to spark this laughter whenever possible. It was far too beautiful to keep it contained. I’m sure that some laughs she granted me over the years were out of sympathy- as best friends do. However, I like to believe that she genuinely found as much love and passion in that laughter as I did.
Sara comes from a family that lives for laughter, so it was easy for me to find a second home with the Ferrarone family, even if I ended up being the subject of that laughter on a regular basis. Despite living with an incredibly difficult neuro-degenerative disease; Friedreich’s Ataxia (FA), Sara was determined to live life to the fullest and met adversity with laughter.
Sara was a goody toe-shoes and I often played the role of “rebellious angel” on her shoulder. I’m sure we thought we were more rebellious then we actually were, but none-the-less, we were a force to be reckoned with when together. We have so many stories as a duo that upon finishing elementary school; when we threw a pool party for our teachers (thank you Brenda Gibson for humoring us and playing all of the games we planned), the teachers gathered and shared stories of our time at Jefferson Road Elementary. Carol Schwab (our principal) told a story of us walking down the hall together in first grade. Sara had leg braces at that point in order to support her while walking. On this particular day Sara was wearing rainbow-colored suspenders, all the rage in the 90’s. We walked alongside one another; I held her suspenders to make sure she was supported, both of us laughing endlessly. We were meant to be quiet while walking in the hallways, but clearly an exception was made that day.
In so many ways Sara and I continually switched the role of who wore the suspenders and who held the other up. We were a team, we were destined to be together, and in many ways we created natural accommodations for one another. We loved, supported and protected one another, even when we went through the peaks and valley’s of puberty, the awkwardness of middle school, surgeries for Sara’s spine and my knees, the drama’s of high school, my moving 2,000 miles away to live in Colorado, break ups, her finding and falling in love with the love of her life, Kody (when I had to share the soulmate spot for the first time), and eventually her death last November.
The hard and yet outstandingly pure and emotive aspect of our friendship was the knowledge that our time was in many ways limited. We had no idea how many minutes, days, years or decades we would have, but we did know one thing; we loved each other unconditionally. Sara will always be my first soulmate, and she set the bar extremely high. There is not a day that goes by that I don’t think of Sara, missing her laughter, her courage, and her love. As I celebrate her birthday, October 7th, here in Malawi I am reminded of all of the beauty in our twenty-one years together, and her twenty-six years of life. I am also reminded of the utter pain and ache brought by her absence in this world. She accomplished so much in such a short period of time. She will forever be the paragon of living life to the fullest and loving unconditionally.
There is still so much for me to learn from Sara, and the same is true for the world. It is because of Sara that I am who I am today, and that I am where I am today. It is because of Sara that I was inspired to take this path. It is through loving Sara, and being loved by her, that I have come to live. To infinity and back- Happy Birthday my best friend, soulmate, and love, Miss Sara Marie Ferrarone. I will celebrate your birthday, and life, with courage, laughter and love.
Sara Marie Ferrarone
October 7th, 2013
Sara was an adrenaline and adventure junkie. This took myriad forms over her lifetime, including: getting lost while sipping on slurpees and listening to spice girls on our driving excursions, riding every roller coaster at Darien Lake Amusement Park (twice), flying in a prop plane, getting tattoo after tattoo, racing around the lake at full speed in our motor boat, riding her enormous horse at EquiCenter named Rayne, traveling across the country to visit me in Colorado, and then out to Las Vegas for an FA conference, and then off to Italy for a family reunion. Point being: nothing ever stopped Sara from living life to the fullest, least of all her FA.
Honoring her commitment to adventure I felt the best way that I could embody her spirit was to find a challenging adventure in Zomba. Considering the physical ache in my feet and arms from newly acquired blisters and sunburns, I do believe I was successful. I am currently sitting at Packachere, munching on toasties (aka grilled cheese and tomato) after completing 7.5 hours of hiking. The first 6 hours were spent chasing after my guide Austin on the Zomba Plateau, where we raced from: the fire tower (Naumbe), to the highest point (Mlumba), onto the Emperor’s and Queen’s views, the Changwa Dam (which as legend has, has haunted water), the small and big waterfall, and finally the trout farm before returning to Ku Chawe for some much needed water. I then spent another 1.5 hours stumbling down the plateau where the sting of my sunburn became apparent, as well as the soreness of gluteus maximus.
I got worked, and it was amazing. There is something so meditative about long hikes like this one. The combination of adrenaline, nature and exploration is intoxicating. During these times I have been able to connect with authentic “flow”, a concept that is owned by Mihaly Csikszentmihalyi. “Flow” describes the meditative principles of creativity, where an artist is hitting his or her “sweet spot”, so to speak. I’ve found this “flow” during three activities in my lifetime: skiing, long hikes, and making art, particularly handmade paper. When hitting “flow” I find myself both relaxed and aware. I’m able to see thoughts approaching my consciousness and then I have the choice to interact or allow them to melt away.
Today my conscious self had little space or tolerance for thoughts outside celebrating Sara’s life. Everywhere I turned I saw glimpses of her: yellow and purple wild flowers growing next to one another, purple crystals from Mulange, and butterflies flittering around constantly. There were several images and experiences that also connected me immediately to the Ferrarone family, including: rocks and flowing water that look identical to the family cabin in the Adirondack’s, friendly dogs for Maya, John and Laura, several scenes that would have Margaret rolling in laughter, and even a trout farm for Bob and Kody. 8,000 miles away from home, and Sara brought her entire family to me today. I’ve never felt so loved and held while being completely on my own.
In Sara’s eulogy I wrote that the greatest gift she gave me, and all of us, was the connection with one another. She built community, and clearly continues to today. I’m not a religious person, but I do consider myself spiritual. There is no question that Sara and I were connected spiritually today. I feel confident that come October 7th every year we will continue to connect with one another, honoring and showing love to one another as we always have. Happy Birthday sweet Sara, I love you.
Call to action: Do you have important information around disability and/or specifically FA that you want to share with a wider audience? Do you or a loved one currently live and/or struggle with FA related issues? Do you work in research, advocacy, prevention, treatment or care? We want to hear from YOU! Write to us today: 7dresses@artsconnectinternational.org to become a featured blog writer. Another way to get involved is to wear the color of the day in solidarity. Take a picture of yourself in the color of the day and Tweet it @ArtsConnectInt, tag us on Instagram @ArtsConnectInt, or send it to us on Facebook.
About 7 Dresses 4 Health: 7D4H is a year-long arts and health education campaign lead by visual artist, Marian Brown, in conjunction with Arts Connect International. The objective of the campaign is to promote inclusive community practices through adDRESSing health artistically and collaboratively. To learn more about the genesis of the project, read Marian’s New Year Blog.
About today's look: All of the dresses for 7 Dresses 4 Health were designed and sown by Kim's Fashion Design. Love the look? Visit Kim at 100 Huntington Ave, Boston MA 02116, call her at (617) 267-9299 or email her: info@kimsfashion.com. Mention 7 Dresses 4 Health for a special discount! This picture: Red for HIV/AIDS, was taken by Candace Walker Photography. Candace does exceptional photographs, check out her work today!
Campaign Update (2017): All 7 Dresses 4 Health blogs were migrated from a former site, so the sharing analytics are inconsistent from when they were first published. We apologize to our guest bloggers, and readers, for this inconvenience. That said, the campaign garnered an average of 5K hits per blog, over 500,000 readers throughout 2015! Additionally, the average number of shares per guest blog was over 150x on social media (through Facebook and Twitter). Thank you for making this incredible campaign possible - and for all that it was for so many. With gratitude, Marian & the ACI Team
