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. 

A Sydney adventure - guest post by Sydney Shop Girl

My regular readers will breathe a sigh of relief to know that this is the first post in November that does not feature Darren Hayes. And my concerned commenter can rest assure that I haven't drowned in my obsession (I will address that perception when I'm not so busy living a Hayesless life this week). This is a story of the other things I did in Sydney. Mostly eating and drinking. Fact.

Tonight's post is a guest post by the equally lovely and beautiful Sydney Shop Girl. When In Sydney I was privileged to spend an evening with her and Sandradee from St Frock. It was a gorgeous night harbour-side, and as I sat eating and drinking extravagantly, I realised I was in the company of two smart, funny and strong women, who have overcome such adversities. I admire them a lot, and I am so glad that we are friends. 

Sydney Shop Girl wrote this post on her blog so brilliantly I wanted to reproduce it on my blog. (It's actually lazy blogging - I am still in a food coma from my Sydney eating, and asleep on my feet from my Darren Hayes OBSESSION. Actually I am about to prepare for a pretty big week ahead. Got stuff to do). Take it away, SSG!

I'm a bit of a nanna when it comes to going out on a Friday night after work.

I like catching an early evening bus because they're usually pretty empty city bound and I get a seat and some piece and quiet whilst I listen to my BBC podcasts and try not to smudge my dramatic evening makeup.

This usually means I get to my destination early enough to have a soothing cup of tea before pre dinner drinks.

Soaking up the atmosphere outside Jamie's Italian on Friday night.  As you do.

And I also have an older persons dislike of queuing for dinner.  Or in the case of Jamie's Italian on Pitt Street (really hard to find actually), lining up in the the line to wait for the chance to have dinner.  Apparently, if you get to the start of the queue I was in, you get to wait 2 more hours for dinner.  7.30pm on a Friday?  I think not.

Luckily, Carly and S, who I was meeting for dinner felt the same about all the waiting.  We met, turned on our heels and walked to the Opera Kitchen, which is a relatively new development in the concourse area of the Opera House.

Where good food, seats and a bit of quiet came our way pretty quick smart.  We were blessed with perfect weather and clear skies.  The Sydney sky line at night always takes my breath away.

We decided to sample dishes from a few outlets at the kitchen, starting first with Kenji.  Kenji Nishinikagawa was originally the sushi chef at Koi in Woolwich (one of my favourite local haunts and I'm so sad it's now closed) and this sushi kitchen at the Opera Kitchen is his latest venture.

I'm cursing the decision to try and take photos in total darkness but I had no other choice.  The photo above was meant to be of our bento tower which was served high tea style.  We also each had a bowl of miso.  This wasn't overly salty but lacked a strength of character.

The top layer was an assortment of vegetable, prawn and calamari tempura. The batter was crisp and the vegetables had bite to them.

Underneath was a platter of mixed sushi and sashimi.  I was pretty impressed with the freshness in a 'food court' setting though the flavours were not as delicate and refined as at Koi.

The final layer was sashimi.

It wouldn't be a Friday night amongst friends without bubbles.  For me it was also a celebration of surviving a rather long and draining week.

I think Miss Chu will forever remind me of Carly, S and K (who was unable to join us on Friday).  We met earlier in the year at the original Miss Chu in Darlinghurst and now here we are at the Opera Kitchen ordering a few of our old favourites.  Unfortunately, they were all out of rice paper rolls.  I can safely say that this outpost of Miss Chu's is every bit as delicious as the mother ship.

The pork dumplings were juicy and well seasoned.

The 3 of us all eyed the final duck pancake.  But alas, there could only be one winner of a second serve.

There's always room for a bit of the 80s on a Friday night and we had our flash back with a prawn cocktail from the Cloudy Bay Fish Co.  It was deluxe.  The dressing wasn't fluorescent pink or too thick and there were plentiful prawns and a crisp vibrant bed of greens and red onion to boot.

We still had so much to talk about after all that food that ending the night with a dessert stop was the logical next step.  S and I managed to sweet talk (love the unintentional pun) Carly into going to Guylian for dessert.  Carly isn't the biggest chocolate fan but we convinced her that there would be non chocolate items on the menu - macarons, danishes and the like (or at least we thought we'd seen these foods at Guylian the last time we checked).

We needn't have worried.  Once we entered the chocolate coated world of the Guylian Cafe (link to menu) at Circular Quay, Carly decided that she'd bat for our team just this once.  We ordered a tasting plate which included a hot chocolate that our waitress kindly offered to divide into 3. In hindsight I wondered how 1 person alone could finish a hot chocolate as well as the array of desserts that accompanied it.

The hot chocolate is served with a Guylian chocolate seahorse at the base of the cup.

Then someone with a steady hand like S pours hot chocolate over the seahorse and you stir the 2 together.

It was heaven and a little goes a long way.  Carly was impressed.  Here she is modelling the Diva replica of the Duchess of Cambridge's sapphire engagement ring.  We were both lucky to get ours as they sold out at full price at practically every Diva store in Australia.  Apparently Kim K's version is now going for half price.  I might investigate this during the week.  Carly, if you want me to pick you up one, please let me know ASAP.

Yes, that's the tasting plate.  The scoop of vanilla and berry ice cream was delicious actually.

A cup of chocolate dipping sauce with strawberries and a selection of beautifully decorated cakes.

I am pretty sure at least one of them was a chocolate sesame cake, another a chocolate mousse cake and the pure pleasure cake with almond in it.  There were also chocolates.  There was too much choice.  The orange gold flakes scattered on the plate looked gorgeous.  If I wasn't so full I would have tried them too.

What more can I say?  Here's to friends, food and Friday nights!

Expectation of wealth - guest post by Kylie Ofiu

 "So when you gonna get a real job son
And buy a little real estate?
If that means living someone elses life
I guess we’re gonna have to wait
Another day"
~ Bob Evans, Hand Me Downs

Lots of people expect me to be more financially advanced than I am. Owning a house. A better car. And a yearly holiday. In my dreams. 

Money expert Kylie Ofiu from Aspiring Millionaire wrote this guest post for my blog. Enjoy!

These days the pressure to be incredibly successful and wealthy is enormous. Pretty much anyone can become a celebrity it seems with reality TV being churned out like never before. It seems everywhere we look other people are living rich fantasy lives which puts a lot of pressure on those who are living on a more average wage. 

It seems the pressure to keep up with the Jones’ is worse now than ever before because what everyone else has is thrust in our faces all day every day. At any given time online, on TV, through social media websites, radio and magazines we can see what everyone else has and is doing and it can make us feel like we are missing out, that working more and earning more money will solve all our problems. 

What is interesting though is if you look past the lifestyles to the real lives of the really rich such as Warren Buffet he lives in the same house he bought years ago and has always lived a modest lifestyle, yet he is one of the richest men in the world. The book The Millionaire Next Door discusses this in detail, how most real millionaire do not live the lifestyle we expect millionaires to have. 

The pressure of trying to keep up with the Jones’ is unrealistic. Most people cannot afford the fancy cars, new clothes all the time, the mansion and unfortunately throw themselves into a lot of debt in order to live this way. Yes, some people can afford it, but it is often at a great sacrifice to family life. 

There is nothing wrong with aiming higher and striving to succeed or dreaming about being financially successful. The problem comes when it is done with a negative attitude and a general dissatisfaction with your life. 

If you look around the world, there is so much poverty and homelessness that if you have a job and somewhere to live, realistically you are financially successful. It is estimated that ¼ of the world’s population is homeless; over half the world’s population live on less than $2.50 a day. If you have more than that you are successful. 

If you are looking to be financially successful you more than likely are. If you are looking to be financially successful as the Western world sees it you can be, but it is not easy. It takes either a lot of hard work to create something worthwhile or that will sell to the masses; a qualification in a highly specialised field or you need to find a way onto a reality TV show. 

It all comes down to your personal view on financial success. Would $60,000 a year be successful for you? If so, that is doable with many careers. You might need to study and work a while to achieve it, but it is achievable. Would you prefer $150,000 or more a year? If so, again it is achievable but what you gain in money you may lose in big taxes and often a loss of family and social life. Most doctors and lawyers who are on the six figure incomes have to work 70+ hours a week so they often well and truly earn their income. Also when you are on that sort of income you are taxed quite handsomely. 

In order to determine if you are successful or not you need to define what success is to you. Once you know what it is to you, it is easy to see if you are headed in the right direction or if you need to make some changes. Sometimes in order to earn the big money you will need to study for years, move town or even country and often work long and hard. But if that is what you want, go for it. Nothing is stopping you. 

The reality of it all is that you can change your situation, you just need the drive and motivation to do so, which is what most people lack. Decide what it is you want, make a plan and go for it. I am a big believer in the power of positive thinking and aiming high, but also understand not everyone shares my view.  

Kylie Ofiu is author of 365 Ways to Make Money. Her blog www.kylieofiu.com is where she shares what she is doing as well as ways to make and save money. 

Guest post at Edenland - I choose happiness

I am guest blogging at Edenland. I have an enormous amount of respect for Eden as a writer and of course, as a person. She is tough and articulate and not afraid to take the piss. It's a privilege to be writing for her.

I wrote about my choice to be happy while living with ichthyosis, and the negativity received from another person with the illness. Here's a paragraph:

I have chosen a good life for myself. I could have sat at home hidden away, covering up, being ashamed. It's been suggested that I do. But I've worked hard at my own integration. I've had the support and encouragement from my parents. I've shown everyone I've encountered that I CAN. The road hasn't been smooth. I've experienced judgement, loneliness, fear, heartbreak the desire not to have ichthyosis, bullying and physical pain. But I've just gotten on with life, despite the bullshit. Nothing has been handed to me, nothing has just fallen into place. I've worked damn hard to prove that I am not just a red face. 

Go over to Eden's blog and read all of my guest post and check out her amazing writing. I wrote about her on my blog a few months ago. Praising her of course. I will be seeing her next weekend at Blogopolis - and I can't wait!

Thanks for having me Eden :)

20 Something Bloggers blog swap

I have been a member of a few blogging communites for some months now. These communities are a great way of reading new blogs, meeting new bloggers and gaining exposure for your own blog. One of the blogging communities is 20 Something Bloggers. Today is their blog swap, where members of the community are paired up and swap blog posts. The topic of the blog swap is Action. What will you do next year that you've been putting off for too long?

I have been matched with Saumirah McWoodson who has written a guest blog entry below. I have checked out Saumirah's blog and she seems like a very intelligent, mature and driven woman. Her blog is focused on her transition between college (university) and adulthood. She writes very well and like me, explores herself through words. Here is her biography:

Saumirah McWoodson is an entrepreneur and blogger from the San Francisco Bay Area of California. She graduated from the University of the Pacific in 2009 with a Bachelor of Arts degree in psychology. Recently, she founded her own dance program, called Dance Daze, and she is looking forward to being part of its growth and the positive impact it will make. Saumirah is passionate about dance, education, working with children, entrepreneurship, and writing.

Thanks for writing, Saumirah! (You will be able to view my guest blog entry on Saumirah's blog soon.)

Blog swap: Delving into myself

Hi Everyone!

My name is Saumirah McWoodson, and I blog at SaumirahLikesArt.com. As a member of 20-Something Bloggers, I'm writing this blog to participate in my very first blog swap! The topic they've given to us, which I like, is: "Action. What will you do next year that you've been putting off for too long?"

After giving this topic some thought, I've finally decided how I want to phrase my response. Next year, I want to delve into myself. In other words, I want to actively pursue getting to know myself. I've been flirting with this idea for a while, but I've never actually committed to it. However, I feel that the time in my life has finally arrived where such an undertaking is mandatory if I am going to continue developing into the person I want to become.

I feel like I grew as a person during college, but that it was just enough growth to get me to the point where I am now. Besides, I know my growth wasn't really intentional. Looking back, I think I just sort of adapted to my situations and surroundings. Next year, I don't want to merely adapt. I want to be proactive about getting to know myself, finding out what makes me tick, satisfying my needs, and being the person I want to be at 23.

The past 5 years have been busy for me. I spent 3 years studying at my undergraduate university, studied and worked in Europe for a year after that, came back to the states and worked in Virginia and Southern California, then went directly into a graduate program in New York City. In the past few months since I've been back in California, I've started my own business and discovered how much I miss the identity I had as a university student.

In the new year I plan to gain a better understanding of what exactly it is that I'm currently missing in my life and fill each of those voids. For example, a few days ago I realized that it's not actually the tests and quizzes I had when I was a university student that I miss, but the thrill and adrenaline rush of working my butt off each week to successfully accomplish the goal of receiving a high score! I had never previously considered how important regular, short-term goals are to me until now. Short-term goals give me a daily sense of purpose, and purpose is something I've realized I can't live without. So in part of my exploration of who I am as a person and providing myself with what I need to remain happy and to continue contributing positively to society, I will be taking on activities such as discovering what type of short-term goals satisfy me in the ways I need to be satisfied.

Though this task I'm setting in front of myself is something I believe I've been consciously or subconsciously avoiding for some time now, I suppose I'm a bit excited that I've finally accepted my mission. I'm also excited to discover all of the wonderful things about me that I may not have been allowing myself to see. Within a year's time, though, I hope to be able to see myself more clearly than ever before.

Enough about me, let's talk about YOU for a minute: Raising Ruby

Welcome to the Enough about me, let's talk about YOU for a minute series on my blog. It's to celebrate my birthday and blogiversary week. Each day until and including 15 December I will feature a guest blogger who I admire. I hope you enjoy the series as much as I did collating it.

Christine Gillow is my first guest blogger celebrated in the 'Enough about me let's talk about YOU for a minute' birthday-blog-week. I am so thankful and honoured she took the time to guest blog - I love how she writes.

It's strange that I didn't actually know Christine's name until last month, although I've been reading her blog, Raising Ruby almost all year. I knew the blogger as 'Ruby', an adorable labrador service puppy in training, and 'sister' of Kiva. 

I don't remember how I found Raising Ruby but I remember the night I did - I was captivated by the blog full of pictures of a then baby puppy. Retrievers always make me squeeeee. That night I read every entry dating back to when Christine and her husband first received Ruby to raise. And I commented on almost every entry. I have followed Ruby's journey ever since. 

I love Christine and her husband's dedication to the job of raising a service puppy. They are so aware of a service dog's importance to a person with a disability. Their blog has raised my awareness of what the importance of service puppy raising is to the community.

If you are in Australia and want more information about raising a service/seeing eye puppy, you can visit the following websites:

Guide Dogs Victoria

Assistance Dogs

Aware Dogs Australia

It was interesting to read just how clever dogs are, and also to know that puppies are puppies, no matter how serious the task is for them to focus on. This video is one of my favourite things on the blog. It is delightfully cute. And funny!

Christine and I have been leaving comments on each other's blogs, and exchanging emails and tweets. I love this friendship we have made. When Toby and Jazz died, I received beautiful condolence messages from her. It is comforting to know that someone else understands just how much a dog means to a person, and how difficult it is when they die.

Ruby has graduated to 'college' now. I've never patted Ruby. Or met Christine. But this entry moved me to tears. It is a bittersweet moment letting the beautiful puppy that you have taught and loved go to the next stage in their journey. I am really excited to think about the difference that Ruby will make to someone's life. She will be their best friend.

 

Guest blog by Christine Gillow: 

Raising Awareness for Service Dogs through Blogging

Raising Ruby chronicles the life of a Colorado service puppy in training, Ruby, on her journey toward becoming a service dog for an individual with a disability.

Last July, a 10-week-old service puppy in training joined our household and I considered blogging about our experience. "It would be a great way to track Ruby's education," I said. "But blogging is a big commitment," I debated. "I'd love to give the gift of her puppyhood to her future partner," I countered, "and maybe potential service puppy raisers would find our blog helpful as a resource."

I still wasn't convinced. "If I start writing about Ruby, well…I'd absolutely have to see it through. Be very disciplined and dedicated for the next year and a half, no matter what else is going on. Can I do that?" I looked down at the puppy and the computer, both in sleep mode in my lap. I continued arguing the case loudly with myself, when my newspaper-reading husband across the room pounded the gavel. "Do it! Of course you can!" His enthusiasm beckoned mine, so as I began raising Ruby, I began Raising Ruby.

A tiny yellow Labrador Retriever/Golden Retriever mix puppy, Ruby was beyond adorable as she barreled around our home and ventured on her first public outings. We shot hundreds of photos those first few weeks (impossible not to) and I wrote about our training adventures. I knew at least my mother was reading my blog and I figured maybe a few out-of-town friends were getting a kick out of it, too.

I wasn't entirely new to blogging. I had started a blog in 2005 and enjoyed posting for a few months until life got hectic with a move out west. More recently, I had been following a lot of blogs on a wide range of subjects. But I was blogging Raising Ruby without a supporting Facebook page (still don't have one!) and without a stat counter (at first), so it was a big surprise to realize that people were beginning to follow us as well! In September '09, we were named a "Cool Dog Site of the Day." By early autumn, comments were popping up from new friends and fellow bloggers, emails were arriving, and then a well-known style and fashion editor tweeted about us. In November '09, that same fashion editor, Liberty London Girl, wrote a blog post on Ruby and our international traffic grew. Google’s “Blogger” named Raising Ruby a "Blog of Note" in March '10 and this summer, we were nominated for a 2010 Petties Award for Best Cause Related Blog. 

I have volunteered for service dog organizations for many years, but through Raising Ruby, I've been able to work toward raising awareness for service dogs by reaching areas I never would have otherwise. Ruby and I met hundreds of people on our outings in daily life and countless more via the blog; there is no better ambassador than a puppy to help people understand the challenges that individuals with disabilities can face. Our little Roo has progressed to Advanced Training now, and if she is ultimately placed as a service dog, I'll be thrilled to present her partner with the story of the sixteen months that Ruby spent by my side. Having such a detailed account of our time together is a gift that lives in my heart as well.

Even though Ruby has moved on, the friendships I've made through Raising Ruby continue. Last winter, I woke up one morning to find my inbox full of thoughtful, kind, and funny blog comments, all from a young woman in Australia. Carly had been suffering through a particularly painful evening thousands of miles away, but somehow she had found our Roo to keep her company. She let me know that she had read Raising Ruby start to finish that night; I was very touched and so glad she was able to find some comfort through the antics of my little yellow service puppy. Carly wrote a beautiful piece about Ruby in February and consequently, some of her many loyal followers in Australia and around the world became Ruby’s fans, too! Since our first "meeting," Carly and I have kept in touch through our blogs and correspondence and if she and I were ever to meet in person, I am quite sure we would immediately share a bottle of wine and a lot of laughs!

Happy Birthday and Happy Blogiversary, Carly! Ruby and I thank you for helping us raise awareness for service dogs; your contributions and support were such an important part of our journey. I look forward to sharing in your journey for many wildly successful years to come!

http://servicepuppyruby.blogspot.com/