Spotlight On Those Who Love Us: Marian Brown

My life has been blessed with incredible women, and my future sisters in law are no exception. I first met the Ferrarone family when I was 16. I was volunteering at Sunshine Rotary Camp - a special week for kids and young adults living with Muscular Dystrophy.  Each counselor was assigned to one camper and, although I never worked one on one with the girls, we developed a unique bond over those years. I was immediately drawn to their strong, beautiful sprits. Little did I know, they'd soon be part of my family.

Laura (21) and Sara (24)

While each of the Ferrarones have enhanced my life, they've also introduced me to a slew of amazing people. Marian Brown, for example, has been Sara's best friend for the past 19 years. She is a bright spot in all of our lives, and although she and Sara live far apart, distance is no match for this awesome duo. They are truly each other's chosen sisters and I love seeing them together. 

We're all better for knowing Marian, and today's spotlight will underscore that. Sit back, relax, and get ready to read about two remarkable women and the power of friendship.

Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.

My best friend in the entire world, and my biggest hero, Sara Ferrarone. Sara was diagnosed with Friedreich's ataxia (FA); a progressive neuromuscular disease when we were finishing kindergarten. Her younger sister; who I consider to be my adoptive little sister, Laura, also has Friedreich's ataxia. Laura was tested for FA, and subsequently diagnosed, immediately following Sara's diagnosis (so Laura was two or three when she was diagnosed). Maya, the wonderful woman who keeps us all updated and educated via this blog, is engaged to Sara and Laura's older brother, John. So, the girls are her sisters as well. 

Friedreich's ataxia is an autosomal recessive genetic disorder. This means you must get a copy of the defective gene from both your mother and father. So, it's onset is birth, but depending on the exact gene you get the progression of the disease can differ. About 1 in every 22,000-29,000 develop this disease. Family history of the condition raises your risk. It is a very rare disease, and mainly affects the muscles and heart. 

Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions. Symptoms generally begin in childhood before puberty. 

As a child, I always described FA to friends as the following: It's like there is a small monster sitting on your spinal column that slowly chews away at all of the cords that lead to the rest of the body, i.e. your neural pathways, so that it becomes difficult for your body and brain to effectively communicate. 

If you'd like to know more about the actual disease and medical implications please click here.


What is your relationship like?

Every day I feel so blessed to have Sara and Laura, and the entire Ferrarone family in my life. I could not ask for a better group of people to call my second family, and to love eternally. Like all relationships that start in childhood, my relationship with Sara has evolved drastically in the 19 years we have known one another. Today, our relationship is centered around laughter. For the past seven years, I have lived 2,000 miles away in Colorado, so our main modality of conversation is emails. I wait anxiously as I open my gmail account hoping to hear from Sara. I find myself smiling as I get to read a page into her life. Today, she swims, horseback rides at Equicenter, bakes the best cookies in the world, makes scrap books for those she loves, and just brightens the world with her presence. When I come home to NY in the summer for a visit Sara always has epic plans set up for us. Last summer we spent countless hours at her cabin in the Adirondack Mountains making crafts, watching Glee, and talking about the woes and realties of life. We also went out venturing in their off roading four wheeler - quite the adventure! I'm not sure if Sara has recovered from my driving yet! I long for my adventures with Sara, and the wisdom and love that she brings to my life and all of the lives of those who know her. She has a fantastic child-like sense of wonder about the world, and a sensitivity to others that is unparalleled.

This summer, while visiting I had the privilege of meeting her new boyfriend, Kody. Kody works for a wheel-chair company, and they met when he came over to their home to repair her chair a few months ago. Kody’s involvement in Sara’s life has opened a whole new chapter for her. My boyfriend, Jon, also visited from Colorado. We had a great time at the lake house, and - like always - I smiled endlessly from listening to her belly laugh. Sara seems the happiest now I have ever seen her, regardless of different health ailments that bother her daily. 

Twenty-years later, I still remember the day we met on the bus like it was yesterday. There she was: long blonde hair, welcoming smile. Like always she had matching braids, and fantastic over-alls that were all the rage in the early 90's. Even at five, I could see there was something different about this young girl. When she spoke to you, she looked right in your eyes with her piercing blue gaze. She talked about her animals at home, about her parents, and her brother and sister. She was utterly aware of the world and the people around her. Just like today, her love and passion for the world were evident. Just like today, her understanding of the world was much greater then I could or will grasp. I got off the bus, running all the way home so I wouldn't forget her phone number, 586-5867. It's hard to believe it, but I think I internally recognized that day that I had met one of life's greatest gifts- a soul mate of sorts. The past twenty years between us has been nothing short of tremendous. The amount that Sara has taught me, and continues to teach me daily; about patience, honor, virtue, humor, love, confidence, overcoming obstacles, and countless others, will stay with me long beyond my days here on earth. 

Sara and Laura both currently live with their parents, in upstate NY, where they each have full-time aids. Their mother, Margaret, retired in order to spend more time with her girls. They also live with Belle, their gorgeous black lab and George, Sara’s ice chasing cat. 

Has your relationship changed in any way following their diagnosis? If so, how?

Honestly, I don’t feel that our relationship changed following Sara or Laura’s diagnosis. I was accustomed to being around people with chronic illness (my mother, Dr. Susan Taylor-Brown is a social worker whose academic focus was on HIV/AIDS related issues). It was  simply another aspect of life, that we would adjust to. 

Our elementary school principal wrote a story about us at our fifth-grade graduation. She talked about us walking down the hallway together. I was holding Sara’s suspenders, making sure she didn’t fall. We were laughing, simply enjoying the time with one another. That seems to be the way it’s always been. 

What has been the most difficult part of coping with your loved one's illness?

The most difficult part of coping with Fredrichs ataxia has recently been the difficulty in communicating. Sara and I have always generally understood each other, but it is becoming increasingly difficult for her to speak, and for me to understand her. Thankfully Kody and Sara seem to have it down pat, so he is able to fill in a lot of the gaps, as is Margaret and Jackie (Sara’s aide who has been with the family for many years). Still, part of what Sara and I love the most is getting out on our own- the two of us, and that is when the communication piece becomes more difficult. Thankfully, we type to stay in touch when we are apart, and we are adapting new strategies to be able to talk more effectively in person. Sara is just such a brilliant young woman and I want to hear everything she has to say. 

The other difficult aspect of the disease is the progressive nature of it. The changes seem small over time, but when you look at the mile markers along the way it becomes difficult to swallow. I have been so lucky to have both Sara and Laura in my life, and there is not a day that I do not feel that way. When Sara and I were in third grade, our parents were called into a meeting. The teachers were concerned that Sara and I were too close, and that it would eventually be detrimental to both of us as we grew up. I looked at my mother (she retells the story, it seems to have escaped my own memory) and my teachers and said, “We all only have one life to live. We are all going to die. Isn’t the price of loving someone eventually losing them? We need to enjoy the time we have with one another. Don’t take us away from one another”. 

Where do you get your strength?

Sara & Laura give me strength. Margaret and Bob (their parents) give me strength. Maya and John (the girls’ brother and sister-in-law) give me strength . My parents and family give me strength. My belief in a life well lived, in the power of laughter and love, give me strength.

I am able to process love and loss by connecting with my family, and also through doing my own cathartic art. I make sure to step back when needed, but also to be 100% present whenever possible; to remember that every moment truly is a gift. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

Just remembering that every single day that you have with that person is a gift. It's difficult for all of us to constantly stay in the present, and in order to love someone with chronic illness, it's really crucial to. Planning too far in advance leads to upset as plans often have to be adjusted, and are difficult to make. Looking in the past can be equally as difficult as it make us sometimes focus on the losses over time as opposed to the triumphs of today. If it's possible to focus your attention on the present with the people you love, there are no added expectations, plans, losses, gains, failures- you simply are able to love and be with them. Sometimes with chronic illness, our biggest gift can simply be the time we have with those we love. 

Also, set up a much needed support network for both yourself and the people you love. We are human, and we can't do it all ourselves. Loving people with chronic illness is difficult at times, and you need to make sure that you have someone there to give you the equal support that you are providing those you care for. 

 If you could send one message to all the medical professionals in the world, what would it be?

Medical professionals- I appreciate and 
respect all that you do. Hopefully technology and research will reach a point where we understand these chronic diseases and illness more completely so that in return, the future can be a bright one for both those affected by the disease and illness, and those that love them. I believe in your ability to work miracles, I have to.