Claire Barnier -Creating Beauty out of Chronic Illness

Welcome back to the ‘Meet my Peeps Guest Series’.  Today on the blog, Claire Barnier, Melbourne milliner extraordinaire, ex-medical professional, social support network administrator and vintage babe, is going to share with us her passion for millinery. Sometimes, passions grow from gardens fertilised through hardship.  Claire won’t dwell on her health issues in her piece below. In her writing and her life, she prefers to focus on the things that bring her joy.  Here she is, a girl I have great admiration for.  I give you the ubertalented, Claire Barnier:

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Hi there, my name is Claire, I’m 30 years old and I have Dysautonomia.  I also have Ehlers Danlos Syndrome, Common Variable Immune Deficiency, Endometriosis and Adenomyosis.  Taken individually my medical conditions are not nice, but could be relatively manageable. All together they are not much fun at all.  They like to impact on each other and no one condition likes to be forgotten about for long.

My health has been pretty crappy for as long as I can remember but I always recovered, eventually, more or less.  Then 11 years ago (exactly 11 years ago this month) I got sick and pretty well stayed sick.  I had my biggest break from it for a year when I finished studying nursing and began my graduate year but the stress placed on my body from shift work and frequent infections pushed me over the edge again.  By the end of that year my body decided it had had enough of being pushed to the limit and crashed big time; I am still waiting to recover.  If I had known then that I had an immune deficiency my choices may have been different.  If just one of my ENT specialists had thought to check my immune function in all my 20+ years of struggling with chronic and recurrent sinusitis I might not be where I am now; sitting on the couch in my pajamas writing on my computer like I have most days for the last 2 months since I came down with this latest sinus infection.  But ‘what if’s will get you nowhere.

Instead, I focus on what I can do. Being out of action so often through the years has forced me to stay in touch with my creative side; to stretch my imagination and find things to keep myself entertained when I haven’t been able to go out as much as I would like.  So I have dabbled in a few different things; some, like sewing and millinery, have stuck while others haven’t quite so much!  Basically I just love to make things.  I love making things so much that I recently decided to start a blog about it!

I took up Millinery two years ago when I tried out a short course at CAE (the Centre for Adult Education) run by Lynette Lim of Love Lotus Millinery.  Before the course was finished I had decided it was my new passion. My new friend Nikki and I signed up for an information session about a year-long Millinery course at a Melbourne fashion school to be taught by Serena Lindeman.   The course gave me the key to enter a world I had previously only glimpsed through the keyhole. Subsequent classes with Serena at her studio have helped me explore this world even further.

True Millinery is an art form and Milliners are artists.  They make wearable magic out of felt, straws, plastics, silks and fabrics and many, many other materials.  When it comes to millinery the only limit is imagination; even gravity can be defied (and frequently is!).  Milliners create jaw-dropping sculptural masterpieces, practical but beautiful everyday pieces, delicate flights of fancy that steal your breath away and everything imaginable in between.  Millinery is an art for those in touch with their imagination (Australian milliner Richard Nylon is a great example of this) and Australia is a fantastic place to be studying it – we have some of the best Milliners in the world and many are willing to share their skills with those who are eager to learn.

Millinery requires patience.  I thought that living with chronic illness had taught me patience but boy was I wrong!  Illness taught me a form of reluctant acceptance; patience is something quite different.  Hand blocking felt with scalding hot steam and stretching it down over the block again and again to get the perfect, even fit or blocking straw with squirts of sprayed water – making sure the grain is even and the shape is smooth, sculpting freehand and seeing an imagined shape come slowly to life in your hands, wiring a brim and then covering that wire, tooling each individual petal of a silk flower with heated irons and then assembling the flower petal by petal and hours of hand stitching – all brings a new meaning to the word ‘patience’.  And then there’s the muscle pain!

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Millinery also requires dedication – particularly when it comes to time and finances.  Once you begin to learn about hats you increasingly appreciate the work that goes into what you see around you and gain a better understanding of worth and quality.  Millinery materials don’t come cheaply; neither do the tools it takes to make a hat or the know-how; it all takes its toll on your wallet.  Hats take time to make, so much time – more time if they are made well and of course the more intricate the hat design the longer it takes to make.  Very quickly you see that charging $500+ for a well-crafted hat doesn’t seem so ridiculous after all.

Millinery also takes its toll on your hands, more so in the beginning, but then your hands get tough, just like your mind gets tough from its lessons of patience.  You learn to work through the pain, frustration and the countless stabs from needles and pins because you know that when you finish you will have made something beautiful that you can look at with pride (or never want to see again and gladly pass on to its new owner).

Learning Millinery has taught me a lot and brought so much joy to my life – and of course new friends!  I have met some lovely, creative and highly talented people through Millinery.  One of the other things I love about Millinery is there is always something new to discover; a new area of expertise, a new technique, a new material, a way of doing things you hadn’t thought of before and there are so many places to learn around Melbourne.  We are truly lucky here.

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You can find Claire’s blog here and her millinery website here.  Go say Hi!

Sarah Phelps: Through a Child’s Eyes

Meet my Peeps Guest Series: I met Sarah some time last year.  When I first met her, I had no idea what a great writer she was.  She was often present in online conversations and I remember wondering how she managed the caregiving role for her unwell husband at the same time as dealing with her own illness. Aside from her illnesses, Sarah is a  talented musician and bright spark.  I didn’t know she was a writer until she responded to my Letter to Dysautonomia post. We began corresponding and she got hooked by the writing bug!  This is the first of Sarah’s guest posts.
How do you see yourself?  Sarah is looking at herself through the eyes of others…

 

Picture of Sarah Phelps with a quote "When people look at me they see a helathy twenty-five hyear old girl riding around on the footpath on a mobility scooter meant for old ppeople.  They don't know the truth.

I broke my ankle in early 2009. I wish I could say it was from something exciting, like a jet skiing accident. But I was just walking around my room, tidying up. I sat on my bed to grab something from the other side; it only took a few seconds. When I stood up, one of my legs was completely numb. I didn’t realise until I had taken a step, placing all my weight on it, and there was a sickening snap, my ankle twisting at an unnatural angle as my leg crumpled.

Because of my EDS* getting around on crutches was very difficult. Trying to move my bodyweight around using just my arms = dislocated shoulders. My broken ankle and torn ligaments also meant I couldn’t drive, so I was stuck at home. A sympathetic couple from my Church stepped in and gave me a second hand mobility scooter. It had belonged to their elderly mother, but she’d just moved into a nursing home, and so no longer needed it. It was all mine. It was a bit embarrassing, but kind of cool to ride him around.

He was red, my favourite colour. I named him Wally.

It was pretty easy for people to see why I was riding Wally. I had a big cast on one leg, and a pair of crutches tucked under one arm. I got lots of grins and thumbs up. “What a clever idea,” people would say. “That’s heaps better than trying to get around on crutches!”

Eventually, my ankle healed. I could drive again. Wally got tucked away in the shed. Everything was back to normal. But slowly, my health continued to deteriorate. Eventually, I had to surrender my license. I wasn’t well enough to drive anymore. We sold my car. And I was stuck at home again.

After a while, Wally came out of the shed. I started using him to drive around the block, taking the dog out for a run to stretch her legs. Later I began driving him to my parents’ place, to visit them. Eventually, I progressed to taking him grocery shopping. I’d park him outside the store (he’s not an indoor model – he’s quite wide), do my shopping, then load him up with groceries and ride home. I got quite good at packing: I could fit a whole trolley-load of groceries on there! I was so proud that I could do the shopping by myself, instead of having to drag my husband down to chauffeur.

But I noticed something different. I didn’t have a big cast on my leg anymore, or a pair of crutches tucked under my arm. People no longer smiled at me. They frowned. Even if I made eye contact with them, gave them a friendly smile and cheerily said “good morning”, they didn’t smile back. They muttered under their breath. They made rude remarks about my weight. They pointed and laughed, and mocked me.

And I felt ashamed. I was no less disabled than when I had a broken ankle. In fact, I was more disabled, as it wasn’t just my ankle that was broken; it was my whole body. But my disability was invisible, is still invisible now. When people look at me, they see a healthy 25-year-old girl riding around on the footpath on a mobility scooter meant for old people. They don’t know the truth.

At first, it would really hurt when people made fun of me, or made rude remarks while I was down the street. But my two younger sisters changed my attitude. They were 9 & 11 years old. They loved to sit on the floor of the scooter and ride around with me, their legs resting on the plastic wheel arches. My youngest sister actually thought that this was what the wheel arches were designed for, so that Grandmothers could drive around with their grandchildren, and the kids would have somewhere to put their legs! Their enthusiasm for my cool scooter helped me to be less self conscious, even when they weren’t with me. When people stared and pointed and made rude remarks, I’d imagine my sisters were with me, with big beaming smiles on their faces as I drove them around.

My sisters grew into young adults – they wouldn’t fit at my feet on the mobility scooter anymore (even if they’d wanted to continue being transported in that way, which I highly doubt!). But when he started kindergarten, my nephew started riding with me instead. Every Monday during the school term I’d pick him up from the bus stop in the afternoon and take him back to my place, on my scooter, for piano lessons. He thought it was the coolest thing. He would sit high and proud on my lap, with his bag at his feet, and do a royal wave to everyone as we went past, like he was some kind of king riding away in his chariot. Awed voices of other school children would follow us as we rode away: “Whoa! Look at him! That’s so cool! How come he gets to ride on that thing? That’s awesome! I wish I got to ride on one of those!” It made me smile, every single time.

Since his brother also started school, the schedule has changed, and it’s been a long time since my nephew has ridden with me (his Mum now drops him off at my place and picks him up again afterwards). Without the frequent reminders of childish excitement about my scooter, I find myself having to work harder not to wither under the stares and snorts of derision as I ride past.

Recently, I passed by the local football field on my way to the store. It was early evening, and there were several football teams that had just finished training, and were also headed back downtown. That meant I had to pass a line of about forty fit, healthy, testosterone-fuelled guys. They were all young adults, about the same age as me. The snickering started down the end of the line and progressed to pointing, hooting and yelling. I wanted to ride my scooter into a hole and disappear. But although my knuckles may have been white from clutching the handlebars so tightly, I sat up straighter, gave them a cheery wave, and then proceeded to tune them out.

Eventually I got past them all, and was left alone to ride through a lovely part of the park. Trees, grass, flowers, birds. I took deep breaths and tried to ignore what had just happened. What I knew would keep happening as long as my disability was invisible. I rode down to the footbridge to cross the river, and found two boys sitting on the edge, fishing. They looked about 10 years old. They looked up as I came onto the bridge, and one of them called out to me.
“Hey miss!”
Inwardly, I cringed. “Yeah?”
“Is that your ride?”
“Yeah, it’s mine”.
“It’s pretty cool!”

For a second, I looked down at my scooter again with my adult eyes. The stuffing is coming out of the seat, and one of the handlebars is chewed up. The scooter is dusty, and rattles and whines noisily when I use it. And worst of all, it’s meant for old people – and I’m not old. But then I looked back up at him. His eyes were wide and sparkling as he beamed at me with an enormous smile. And I couldn’t help but smile back.

“Yeah, it’s okay. Thanks.”

He went back to his fishing, and I kept going, contemplating my scooter through a child’s eyes again, and smiling.

xx Sarah Phelps

How do you deal with it when people treat you differently because they can’t see your invisible illness? Personally, I wish I could just always shrug it off, but I have to confess that it does wear me down over time.

* In addition to Postural Orthostatic Tachycardia Syndrome (POTS), I also have Ehlers-Danlos Syndrome (EDS). One of the most frustrating symptoms of my EDS is hypermobile ligaments. Ligaments are the things that are supposed to hold your joints in place. But mine are super stretchy, and let my joints just kind of go wherever they want. That means frequent dislocations and subluxations (semi- dislocations).