Remember when I said I’d be sharing with you, my favourite creative people? Here’s the first!
I met Jane when I did the ‘Confidence is Beautiful’shoot for Euphoria Design. She works for the marketing company who devised that project; Identify Marketing. In her own time, she is Jane of Jane Makes Hats. She and I bonded quickly over our physical similarities, it’s not every day I come across someone tall like me, same age, same shoe size, same colouring! But we differ greatly when it comes to knitting talent! It’s been lovely getting to know her. One day, I told her I had been oogling her amazing hats on instagram. We we got talking about them. I told her how long I have been looking for the perfect Rachie hat, eye-colour-green, soft and slouchy. She said, let me knit it for you! And she did. I adore it so much! Here it is. And here she is, because keeping Jane a secret would be too mean. You are welcome!
Q: Jane; your hats! Every one is a work of art. As a beginner knitter I have enormous respect for your skill, before we even talk about your talent!
Please tell us how it all began?
Well thanks! It’s a subject dear to my heart – my skills were passed to me via a very patient Nana and Mother. My Nana was an amazing knitter, her tension was so tight she often bent the needles (I still have some of her wonky needles in my collection to prove it). My sister and I had matching knitted poncho’s we would wear with pride and we always received compliments on them. My Mum still knits and donates loads of wee teddy bears to charities all around the World and NZ (St Johns in Pirongia just received a bunch for the sick kids who ride in the ambulance).
Each person I knit for inspires me. I hear their story, I find out what they want, and I get so excited about each project. I loved creating your hat Rachel, you wanted a hat that matched your eyes (and personality). I still get nervous when I deliver the finished project – I want people to love them!
I find out what the recipient wants, I go through my massive stash of donated wool (given to me from Mum’s, Nana’s and Great Grandma’s), and scour the shops for the perfect yarn. I usually create a pattern from scratch, so the maths skills come into play. I knit at night to wind down from the day.
I like small projects as my attention span is a wee short, I have 5 projects to complete then I want to make a few squares for my blanket. I like to make squares from the wool of hats I have created for people, it’s like a happy memory blanket.
Q: You once told me, when talking about Moss stitch, that it was “fun”! Is challenge or difficulty a motivating factor in your knitting? How important is the fun factor for you?
I do like nutting out a pattern, This week – for a new challenge – I offered myself up to be a test knitter for a talented knitter in the States. It was for this amazing pair of cable gloves, I re-did that first glove about 10 times because I couldn’t figure out the pattern (I usually just create cable without a pattern). I eventually googled it, slapped my forehead at how easy it was, and made a fab pair of gloves.
The Dinosaur Hats, they take a long time but are so exciting when they are finished. So far I have made 3 for boys, one for a baby girl (not yet born) and one for a cool lady in Wellington (I just loved that she saw the baby hat and said “I can rock a hot pink dinosaur hat with multi-coloured spikes”).
Q: How important is having a creative outlet for you and why?
My job is creative and I love it, but I think doing something with my hands and producing something with love is so important. I like to give every baby born in my circle, a new hat as a gift – I really can’t explain why, but I have done it for around 10 years. I really want to pass my skills onto the next generation and love the craft movement. These skills are not lost, they are being used and re-invented and cherished – it makes me smile and think of my Nana and her wonky needles.
My writing mojo has been off leash lately. It’s gone and done a runner.
I’ve been sick in the more ‘regular’ sense of sickness. One run after another of yucky bugs, bacterial and viral. My third round of antibiotics. It’s nothing compared to how I was before; could be worse. Blah. Still feeling like a germ ball. Thankfully, I’ve had the internet to keep me entertained. Some of my friends on social media post awesome things. Entertaining, political, thought provoking things. Some of the bloggers I read wrote some great stuff this week too. This resonated with me so much. And when I’ve felt too yuck for all of that thinking, there has been that old internet comfort of window shopping for… shoes! Looking at shoes, dreaming of shoes. I have developed a bit of a passion for shoes, probably due to their scarcity in my big-footed-girl-world.
It’s not an interesting thing, but I do love them. So anyway, there I was browsing shoes, in my congested, mouth-breathing, heavy lidded state when I passed a pair that had a style name I recognised; Lexie. The name of one of my son’s fantastic karate senseis (I wonder what the plural for sensei, is?) Lexie is a dignified, wise and fascinating person who is teaching my son so much more than karate. We think she’s great. I saw the Lexie shoes. I fired off a quick and first-world-shallow message to her facebook account, something along the lines of ‘saw these shoes and thought of you.. tee hee’. And as happens with Lexie, within a few sentences, we were discussing the bigger issues in life. Education is topical today because ofthis article. We agree that something needs to change in our schools. At the end of our quick exchange, she sent me something I HAVE to share with you.
Please watch. Share. This. All the yes. This is exactly what is needed so we can extract the human race, our beautiful, creative, questioning, thoughtful selves, from becoming, as Welby Ing so elegantly put it, “…a ballet of Pavlov’s dogs”.
Disobedient Thinking. Intellectual Disobedience. Don’t just sit there, think something. Ask something. Something all your own. Or something that piggy backs off something someone else thought. Something to transcend shoes and religion and educational beaurocracy. Because being creative really is the most beautiful precious thing we can do. It’s how problems get solved.
I was never taught that my own disobedient thinking was a “precious thing” but I did learn it. It was the pathway to my independence, to mental freedom. It was the harbinger of self-knowledge and self-acceptance the beginning of discovery. Ing is so right. I value this precious gift, in myself and in all the children I have ever taught.
I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.
We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin. Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.
I am always impressed with Christine. In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful. Carefully groomed, well dressed with such a warm and lovely nature. She always has a bag full of occupations to keep her busy. Yet, she makes time to chat, to ask how things are. She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses. She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too. You probably see one of my sources every time you look in the mirror!
Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful. Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum. If you can’t, visit them online.
Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere. Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you. So affirming. And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.
I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive. If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter. I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow. A lesson I need to remember more often.
Get Outdoors or Bring it In
Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek. Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature. If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished. Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible. Take a look at my photo series from Be Couper: How to Just Be. She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.
Reading, listening to audio books and watching television series or movies will take you places! Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes. Libraries usually have a good stock that you can order. Sometimes even online! The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.
…because laughing raises your endorphins and happy hormones can’t help but leave you, happy! Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly. Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny. Tell them to people. Recall funny memories and tell them to the kids. Friends. The nurse. And when you laugh, make it big! Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.
Chronic Illness teaches us so much. We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer? A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA. Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes. Chop the veggies in your bedroom or set-up on the kitchen floor. Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them. Because being generous is one of the ways that human beings become happy. If you can’t give of your energy; you can give of your heart.
Find Your Thing
All of these strategies are things I have observed in people I admire with chronic illness. Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too. It’s helping me overcome, every day. Ask me about it! I have an online course recommendation! 😉
Whatever methods you employ, don’t give up. There are always, ways to overcome.
Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?
…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha. Stand Tall.
NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!
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:
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!
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.