Appearance Diversity: Jess's story. "People still stop on the street to stare at me, and to make comments about my physique."

I used to mentor this amazing young woman at the hospital. Jess is one of the smartest, caring people I've met. She is an incredible writer and I am so glad she's shared her appearance diversity story today. Jess blogs at Kisses from the Fight - you have to go read more of her writing. 

I took her to see Rick Guidotti in 2012. When he took her photo, she just blossomed. What I didn't realise that day was the impact that Rick's presentation had on her. It was a combination of seeing others with her condition and Rick's way of making everyone feel beautiful that made her blossom.

Jess has Marfan Syndrome. February is Marfan Awareness Month  - so it's very timely she shares her story. Meet Jess. 

“In other words, I would be giving in to a myth of sameness which I think can destroy us”
~ Audre Lorde.

"Had you asked me, I would have given in. I would have pleaded with you.

Allow me the gift of sameness. I do not share the sentiments of Lorde; it is difference that will be my undoing.

But that is the uncomfortable truth of my life. The premise of being someone like me is that you must never be granted a choice in the matter. I am but an anomaly, a lack of intention lovingly spat by my parent’s genomes. One in five thousand; these are the chances of being someone like me. And by being someone like me, what I really mean is that I am the person nobody else wants to be.

My name is Jessica Marshall. I am 22 years old and studying Psychological Science. I live in Ballarat and I am Mum to a golden retriever named Willow, the love of my life who is all paws and no common sense. My eyes change colour in the sun, and I cannot sing. 

I also happen to have Marfan Syndrome.

Marfan Syndrome is a genetic disorder which affects the connective tissue. Blood, bone, skin, muscle and organs lay splayed and wanton, teasing for the trauma that is a direct consequence of having faulty Fibrillin. (For those that are not medically minded; Fibrillin is the glue of the body. It’s kind of a big deal).

I am the elastic girl, the Gumby, the walking rubber band. Marfan Syndrome affects every person differently. There are different mutations, different severities. It is thought that I have my own mutation, licked and stamped with my own unique fingerprint. I could explain the science behind it, the reduced life expectancy, the aortic dissections, the 6 foot plus heights and bones where fat should rest. But you would be none the wiser as to the reality that is my life. Instead I shall tell you the truth.

When I wake in the morning I spit my lungs into the basin and scrub the mucous down the sink, a consequence of multiple pulmonary nodules (Have you ever heard a more attractive description?). I will place whatever joints have dislocated in the night while I slept into their respective hollows. Tablets will be swallowed in tens, and I shall try to stay awake past ten am. Uni classes will be attended and I will ask someone to open the doors. There will be three rests as I walk to my car and finally when it is time to rest for the day, I will gasp as the blood regurgitates backwards into the valves of my heart.

And so it goes.

When Carly initially asked me to write a piece for her blog about appearance diversity, I sat frozen, fingers hovering above my laptop keys. I did not have the right. What six foot, size six blonde truly did? I imagined you, the reader, shaking your lobes from left to right. You would tell me. Find another story, another piece. This is not yours to own. I told Carly this and she replied “I remember what you said to Rick Guidotti”.

Two or so calendars ago I attended The Other Film Festival with Carly, and during the day I took my seat along with many others to listen to a presentation by Rick Guidotti. As Rick’s slideshow presentation of his work filled the screen, I began to realise that I was watching a slideshow presentation of myself. Of course I wasn’t, not really. But it was the first time that I had ever seen portraits of other people with Marfan Syndrome.

And they were wonderfully and beautifully flawed.

At the conclusion of the presentation Rick encouraged people to speak. Sick and mucous nestled in my mouth in equal measure, and my hands shook as I clasped onto the microphone for a false sense of courage. It had taken me 20 years, but it was time to tell my story.

There was the day that I walked down the street, fourteen years, blue shorts and matching eyes. A group of males wound down their window and for a moment I allowed myself to believe that they would wolf whistle. Instead they threw a milkshake at me and called me Spider Woman. 

High school was a combination of having “Anorexic Slut” shouted at me across the locker rooms and being told by friends not to cross my legs because I looked disgusting.

My proud parents sat through dance concerts (In which I showed minimal talent, but they beamed regardless) and were confronted by other parents wanting to know why they didn’t feed me properly.

There were the doctors who accused my parents of abuse, and threatened 9 year old Jess with a nasogastric tube unless she started eating properly. 

There was the day that Daddy took me to the beach and I wore my first ever bikini with pride. An entire jetty came to a standstill to point at the bones within their midst. As I sobbed, Daddy told me that when I was 18 I would be paid thousands to walk catwalks. Two years later I was in a wheelchair, my catwalk forgotten.

There was the Uni class I walked into to find the entire class discussing my body, too much limb, not enough flesh. I still remember how hot my cheeks felt.

I could go on of course, fixate on all that I was led to believe. But years in an Eating Disorder program have helped me to understand that their thoughts and opinions never mattered quite as much as my own. The irony that their comments about my emaciation led to me developing an Eating Disorder is not lost on me. Much of society encourages the idea that despite being different, we are all the same, and that we are all beautiful. But this is not true. I am different. I am the mutant, the anomaly, the woman who truth be known, was never societies idea of normal, nor beautiful. I do not need to be the same, and if I were to go back and speak to thirteen year old Jess who sobbed in front of her own reflection, I would tell her that she did not need to be beautiful in her sameness, or beautiful at all to make it in this world.

I am in my fourth year of University and have a GPA of 6.8 out of 7. I have founded a not for profit organisation which supports adolescent girls living with Chronic Illness. I date, I make love and I fall out of love in quick succession, not always in that order. People still stop on the street to stare at me, and to make comments about my physique. My condition is progressing, and I may never have children. I will be monitored for the rest of my life to try and predict, and prevent, my aorta tearing in two. I spend Saturday mornings drinking coffee at dog socials, and I do not remember normal.

Perhaps you are 13 year old me. Perhaps you are 40 year old me. Chronology aside, the hot shame of believing that you are somehow less because of appearance diversity feels all the same, regardless of the age of your bones. You may not be sameness and you may not be beautiful.

Look at this photo of me being photographed by Rick Guidotti.

Now tell me that you still want sameness."

Click here for more information about Marfan Syndrome.