A Personal Essay About Disability Written By My Personal Hero

The word “disability” is a pretty effective one, as far as words go. It manages to convey both a technical definition (“lack of adequate power, strength, or physical or mental capacity; incapacity”) as well as a general sense of the lack of glamour or romanticism found in the world of disabilities. Additionally, and perhaps more to the point, it is a buzzkill. Frequently a conversation-stopper. Experience has often led me to wax philosophical about the reasons behind this sort of discomfort; for example, perhaps it is the fact that we tell children not to stare or ask questions that gives them a poor foundation for later on as “don’t stare” becomes “don’t look” which becomes “don’t see.” Maybe it’s because we as a society are preoccupied by both body image and quick fixes and disabilities are an affront to both. Or perhaps most likely of all it is because disabilities present a minority status that is more objectively negative than others – it is in many ways both an identity and a regrettable situation that people cannot be sure how to react to. Regardless of any or all of the reasons, it is an aspect of myself which I have frequently wanted to leave behind and dissociate from, but it’s still a constant and undeniable shaper of my life, relationships, and outlook. For better or worse, it’s with me all the time.

Maybe it would be best to start by describing exactly how it affects me physically. I have nemaline myopathy, a form of muscular dystrophy (which is actually a group of diseases, not a disease itself). It is a rare genetic disorder that affects the shape and distribution of protein in my muscle cells, making it more difficult for them to develop and grow. This results in significant weakness in my skeletal muscles: legs, arms, face, trunk and lungs, but not in smooth muscles such as in my eyes, heart and internal organs. Although in one sense the disorder has only one effect (muscle weakness), this in turn creates many others such as skeletal deformations like scoliosis, some looseness in my joints, difficulty in doing things such as walking, breathing and enunciating, decreased ability to fight off diseases, and difficulty putting on and maintaining weight. This last one might seem like a bonus to anybody who’s seen ten minutes of commercials in the last twenty years, but in this case I don’t think you could argue that I really got lucky. I have the same difficulty gaining weight that others have in losing it, and I think it probably invites similar insecurities, comments, and obsessions with calorie-content. The slowness with which I have to eat plus the intense effort it takes to move around means that I burn up calories much faster than I can replace them. Additionally my low muscle tone extenuates my thin appearance. 

Although it was apparently clear that there was something different about me when I was born, I wasn’t diagnosed until I was about eighteen months old. This was because nemaline myopathy is rare enough that it’s not on the standard gamut of tests. I sometimes wonder if finally figuring out what the deal was wasn’t just a little bit anticlimactic in some ways because once you know what it is, there isn’t much you can do about it. There’s no treatment or medicine or anything for it, just eating right (as well as often), exercising and trying not to get sick… probably the least exciting or original medical advice ever given. Still my mom (always my most active caretaker and advocate) took all the precautions she could think of, including signing me up for physical, occupational and speech therapies and biannual specialist doctor’s appointments just to keep an eye on things. 

Mary & her mom

As I got to be old enough to go to school, she had some more tough choices to make. She had to consider things like the stairs in my school and on the bus, the physical roughness, social insensitivity, and potential germy sickness of the other kids, the danger of the playground and gym class, the weight of doors, backpacks, and books, as well as the length of the school day and the understanding of teachers and strangers. I tell you all this to make it clear why she chose to have me attend school with a full-time one-on-one aide. This is a necessary explanation because for quite a while I was unwilling to make the concession that it was an indicated need, at least to start with. Not that I can truthfully say having an aide really bothered me at first. As a five-year-old I knew there was something different about me compared to other kids, but I didn’t think about it much more than that. I think one of the most interesting things about children in general is their acceptance of whatever their experience is as the definition of normal. I mean on some level I knew that other kids could do things I couldn’t and I could see that they didn’t have aides or anything, but I accepted that without too much question. It was what it was. 

But despite this, the feelings of being smothered, separated and uncomfortable because of the presence of the aide grew over the years and especially once I left elementary school for intermediary school (in my district this was grades 4-6). Maybe I should explain that a one-on-one aide is an adult hired by the school district to accompany the student everywhere on every school day. It gets old. This was true even when I had a good relationship with my aide, which I frequently did – I had the same aide from third to eighth grade; we became very close and still get together over breaks. I was always pretty clear that it was the general fact of the aide, and not the individual person, that drove me nuts. What an aide does depends on what the student needs, and in many ways, I didn’t need much. I never needed extra help with school work and have always had an aversion to situations in which I might get pummeled, such as crowds and dodge ball games. But the presence of an aide often made people think I needed more help than I did, like when some teachers assumed the aide helped me with my tests and homework.

As I got older and developed more of a social consciousness, I began to notice that other people, teachers and students alike, behaved differently around my aide. The aides were, after all, adults and therefore authorities. People would address questions and statements regarding me to my aide in front of me. Not “what’s your name?” but “what’s her name?” Substitute aides were the worst. For “confidentiality reasons” which I still don’t understand, the school district could or would not give substitute aides any information about me besides my name. They understandably had no idea what sort of disability I had and many assumed an intellectual or developmental one. When I was in middle school one who had made this mistake introduced herself by saying sweetly, with her hand comfortingly on my shoulder, “My name is Mrs. Feely, can you say ‘Mrs. Feely’?” We did not become friends. Others who better understood the situation were still worried about leaving me alone for any amount of time, including when either of us had to use the bathroom, because they were afraid that if something happened to me in that time they would lose their job or incur a lawsuit. This sort of thing, combined with teachers thinking I got help with my work, was the most frustrating thing of all for me. The best way I can think of to describe it was that I felt like it negated me in some way. I felt like I did not get credit for the things I could do, like my school work, handling a trip to the bathroom or five minutes alone, so sometimes I felt like less of a person.

But these were just the worst days and many positive things did come out of my years with aides. For example, I learned to view the small society of school in a critical way. By this I don’t mean judgmental, although I’m sure that was sometimes the case, but rather questioning: What did people think of me?  What made them think they knew anything about me? Were they right? Did I do the same thing to them? I couldn’t articulate all of these questions or their answers but they were the sort of considerations that came to build some of my world view. Looking back, it’s really not surprising that I became an anthropology major. Being somewhat socially separated from others but very interested in them enabled me to see both them and myself in a different way. I realized that if I assumed that people were judging me, I was actually judging them. I needed to cut people some slack and allow for the standard awkwardness and life complications experienced by everybody.  

I finally won my campaign to lose the aide in tenth grade, so my last two years of high school were a solo event. At first it was surprisingly nerve-wracking. I was jittery that first day of eleventh grade, the same way that I feel before a plane takes off: in theory I know that everything is fine and this is where I want to be but I can’t shake the feeling that this couldn’t possibly work. But it didn’t take me long to embrace my freedom. I was thrilled to have to ask for help when I needed it, instead of always having it there when I didn’t want it. I’m really glad I had these two years of independence, especially because I think otherwise the first day of college would have been literally overwhelming. Now I’m able to really appreciate my freedom without being too freaked out by it.

As much as I learned about the general concepts of identity and human interaction and the specifics of disability through my school experiences, I think I would still be lacking had I not attended summer camp. From the ages of seven to seventeen I went to the Muscular Dystrophy Association (MDA) Summer Camp for a week out of every summer. Unlike the aide situation, which I was initially accepting of and grew to resent, I intensely did not want to go to MDA camp at first. I wanted to go to Girl Scout camp like my big sisters, even though I never especially liked being a Girl Scout. That wasn’t really the point. The point was I didn’t want to go to cripple camp where you sit around and talk about cripple things all day, I wanted to go to big girl camp where you… I was never really clear what you did there. All I knew was it was probably way cooler than MDA camp. I just couldn’t believe that something could be both fun and disability-related. Fortunately I lost that argument (which I know is hard to believe with my intractable logic). 

Me & Mary getting
ready to zip line!
MDA camp, 2008

What I found there, the first year and every year after, was a broad range of people that I would otherwise never have had the privilege to meet. I found people who handled their disabilities with such grace that you could never say they were impaired. This was the case with my friend Maya who was a counselor at camp and now one of my best friends. She does not have MD but rather a rare form of arthritis that frequently causes her intense pain as well as a host of other complications. Even so she meets every day and every person with liveliness and warmth, not just in spite of her pain, but even because of it. I don’t think most people would blame her if she were bitter and resentful, but she holds herself to a higher standard and instead finds in her pain a source of compassion for other people. She literally inspires me to try to be a better person. 

Me & Mary at
MDA camp, 2003

Meeting people such as Maya has also helped me keep my own problems in perspective. I met people with other forms of MD who could not walk, feed themselves, breathe independently or move their arms. Every year, MDA camp offered me a whole new context through which to view my situation. Instead of the deficit model I often encountered at school, where the focus was frequently on what I could not do, camp was a different playing field altogether. Since everybody there had disabilities, it was like they canceled out and we could all just be people. I realized that I was not a victim, and in some ways neither were people with more severe disabilities. Especially not when they have such strong minds, hearts, and personalities. 

On the flip side, I also met people who I did not think handled their disabilities as well. There were some who used it as an excuse not to engage in life, limiting themselves more than anybody else could have. Some seemed to consistently view all their problems as stemming from their disability, and to firmly believe that if only they could walk, or walk faster, everything would be better and they would be happier and more complete people. Yet how often do we meet people who are unhappy, dissatisfied or frustrated, even with their own bodies, despite their miraculous ability to walk? Clearly this, or any other “quick or easy” fix, is not the answer. I came to realize there are not so much disability problems and able-bodied problems, just human problems, experienced in different conditions and to different degrees by everybody. In other words, there really isn’t much difference between me lamenting my inability to jump or a friend lamenting her inability to look like Catherine Zeta Jones. Both are virtually unattainable and, even if attained, largely unhelpful. 

It’s impossible to know how my life would be different had I been born in a different body, but I think that being in this one has enabled me to meet people and learn things I might not otherwise have encountered. Although it’s easy to say this, and difficult to live it and appreciate it every day, I know that I have plenty to be grateful for. But this is not a Lifetime movie. Having a disability is not like overcoming an obstacle and moving on, it’s something that must be met and dealt with everyday. Yet even so, I think the experiences I’ve had and the people I’ve met have made it possible for me to make some progress in how I deal with it. It is a part of me but not the sum total and focus of my life.

Is it clear yet why Mary is my hero? If not, you can take a look at her spotlight from last year...


Love,
Maya

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. 

Finding Myself; Finding My Best Friends

The Beatles once told us that "love is all you need", and I tend to agree. That's why I choose to write about living and loving with chronic illness. Whether you're chronically ill or perfectly healthy, it's vital to nurture love in all its forms: love within our families, love between friends, romantic love, and love for the world around us. In my eyes, it's everything.


Of course it's all about balance, and for most of my life I didn't have it. I was the definition of a "bleeding heart", reaching out to anyone and everyone who sought my advice. I was deeply impacted by their struggles, but truthfully it also made me feel needed.  At the same time, I clammed up about anything "negative" in my own life. I suppose it just felt easier to focus on my friends' "normal" problems (stuff like bad grades and boy trouble) than my rare health condition. After all, my problems weren't going anywhere, and who could relate to them anyway? This was also a reflection of my self worth (or lack there of). Since I couldn't do many things like the typical college student, I already felt like I had several "strikes" against me. At the very least, then, I could be the "listener." Meanwhile, I wanted nothing more than unconditional love in my own life, but I had no idea where and how to find it.

It took getting sick to realize that I simply couldn't sustain these relationships, especially without getting much in return. The majority of my energy (or whatever was left of it) needed to go toward fighting my disease. I gave myself permission to stop hiding my reality, and those "friendships" that felt so one-sided? It turns out that they were. When I wasn't able to be the upbeat Maya they had always known, they faded away. During a time when I needed friends more than ever, they were nowhere to be found.

After college, I vowed only to invest in a special few; people who deserved my love and would offer it in return. Thanks to therapy and lots of soul searching, I realized I needed to let go of my fear - fear of rejection, fear of abandonment, fear of someone saying something dumb about my health. Only then could I be ready to pursue the "right" relationships. As always, my family gave me tremendous strength during this time, reminding me that I deserved only the best. 

As I made this transition, I focused on the most important relationship of all: the one I had with myself. I learned to cherish my own company, and even took myself on several "dates." (Before you laugh, go ahead and try it! For starters, you'll never fight over which movie to go see). As my self-esteem grew, I believe it helped attract the right people into my life. Finally I knew what I deserved and I began asking for it.

It wasn't long before I started cultivating new friendships. Although I still secretly feared overwhelming them with my problems, I was honest from the start. This time around, I knew myself and believed I had much more to offer than constant optimism. To my surprise, they truly wanted to listen... so I kept talking. As I maneuvered through my worst flare yet and struggled with even the most basic tasks, our bond only grew stronger. Through sickness and through health, they loved me for me. When I finally dared to be myself, these are the friendships that rose to the top; people who wanted to celebrate my successes and catch my falls. As sick as I was, I had never felt safer or more content in my personal life.

If I've learned anything from these experiences, it's that love shouldn't be given away freely. Okay - if we're talking in a biblical sense (as in "love thy neighbor"), we should all offer our help and compassion whenever possible. However, when it comes to our personal and enduring relationships, we have the right to be picky. Love - in its truest form - is special and asks something of us. Investing in any successful relationship takes time and energy...two things that are limited when you're living with chronic illness. If we learn to view our energy as a precious commodity (essential to loving, caring for our health, and everything else in our lives), then we'll be more mindful of how we spend it. Ultimately, it all goes back to the "golden rule." If we give a piece of ourselves to the people in our lives, it's critical that they know how to replenish our energy when the time is right. In love, as in life, balance is everything.