Rare Disease Day: Poland Syndrome

| Lois Blackburn

I have a photo of me aged about 16. A black and white portrait; head and my naked chest. There is no smile, no pout, instead a penetrating stare directly back at the viewer. Look closely and the photo reveals my lop sided breast, a result of Poland Syndrome.

Puberty hit me at 10/ 11, quickly revealing differences in the way I was growing to the other girls. For me my Poland’s meant only one breast, the easier end of this rare congenital disease. For others the condition is evident from birth, with missing or undeveloped chest muscles, or/and the shoulder, arm and hand might be involved.

Like many other people with Poland Syndrome I had no idea of what it was, or why I had it. In puberty I even wondered if it was my own fault- my nipples had itched as they developed, I worried did I itch them to much? (The nipple on the flat side looked broken up)

Comfort, the Breast Quilt. Work in progress, various artists

My mum knew about my lopsided breasts, and was supportive, it was just the way I was. Primary School was a different thing, I was teased, songs were made up about me, I was made to feel other, different, a freak.

My mum managed to find me a cone shaped foam insert for my bra, I went to a secondary school where nobody knew me, and somehow I managed to disguise myself and my breast. The teasing was for different things now!

Aged 15, I was in a relationship with my first proper boyfriend. Like every boyfriend since I don’t remember him flinching or reacting oddly when he saw me naked. Boyfriends/partners have shown curiosity, but have never been rude. Sadly I know of some women with the condition today who are worrying about how their partners are going to react when they see them naked.

Work in progress. Comfort, the Breast Quilt. Lois Blackburn 2023

It’s difficult to pin down how the condition has affected me as I’ve grown up. As a late teen and in my early 20s, I consciously revealed my whole body on a nudist beach in Cornwall, a bit of a F*** you rebellion. But it was a complex relationship with my body, like so many people I’ve never had a good confident sense of body image.

In my late teens, a doctor explained that I could have a breast augmentation operation for the affected breast to even them out. It wasn’t until my mid 20s until I decided to find out more. 30 years later, just before Christmas I had my 5th breast operation. Somehow I didn’t take on board when I had my first operation that the implants wouldn’t last for ever- I guess when your in your 20s, ten to fifteen years seems a long time away. My first 3 implants were silicon and saline based, when they end their lifespan the first thing I knew about it was a ruptured implant, shown up on a breast scan. The silicon escapes from the chest, and moves around the body, and can be quite uncomfortable, some people are worried and campaigning about the potential health issues of silicon implants and are having them removed.

Recovery after 4th operation, removal of capsular implant, replacement implant, and breast lift on other side.

Two of my implant operations have resulted in capsular contracture, when a tissues capsule forms that is hard and dense, it’s painful and distorts the shape. Just before Christmas I had my first fat transfer breast augmentation, I will have a follow up operation later this year. It’s the first natural looking and feeling breast I’ve had on that side.

I’ve managed to breast feed both my children on the unaffected breast, in fact one of the surgeons explained that I was born with twice the normal milk ducts in that breast, strangely and wonderfully preparing my body for breast feeding.

‘Milk ducts’ work in progress for Comfort the Breast Quilt. Lois Blackburn

In all of the years of operations I only remember once a surgeon mentioning that I might have slight Poland Syndrome, and that was a passing comment. Thanks to the Poland Syndrome charity PIP, awareness and support for people with this rare condition is slowly improving. Through the organisation I can now say with confidence that I have Poland Syndrome, and even meet for the first time other people with the condition.

My own story inspired my current art project, ‘Comfort’, that investigates our relationships with our breasts. In every workshop I do, I share my story of Poland Syndrome, each time I do, I feel less embarrassed sharing something I’ve hidden for so many years. Around 100 women and teens will create embroideries for the Comfort quilt, and the quilt will be exhibited in a tour later this year. Each participant and audience member will go away also knowing about the condition. In turn, they can spread the word of the condition, share a bit of comfort to a friend or family member who couldn’t put a name to why their breast hadn’t developed… and feel a little less alone.

Work in progress, ‘Comfort, the Breast quilt.’ Various artists.

The Ladies, knockers & Jugs

| Lois Blackburn

I don’t usually come to arts and crafts groups- but I thoroughly enjoyed this one. I normally feel I can’t do anything, I haven’t the confidence… I think it was you Lois, you’re proper down to earth- I’ll definitely be coming back.

Linda

Yesterday was my first ‘Comfort’ The Breast Quilt, workshop session with the Women’s Group at the organisation Back on Track Manchester. Back on Track is a Greater Manchester Charity that enables people to make positive changes that last. The support adults experiencing multiple disadvantages.

The staff and volunteers at Back on Track put everyone at ease, the environment is friendly, relaxed and supportive. You feel safe, a little safe haven in the bustling city of Manchester.

My priorities for this first session was to start to build trust, create a safe space for us to talk freely, and aim to engage everyone in the creative activities. Being kind to ourselves seemed particularly important as the subject of Breasts can potentially be very triggering, and the double whammy that the act of creativity can make us feel vulnerable and revealing.

Our group of 10 supported and encouraging of each other both in conversations and artwork. Like my session with the New Mills Women’s group, our conversation about breasts was broad, at times shocking, sometimes funny. In both sessions we covered such subjects as Breast feeding, first bras, back ache and other physical discomforts from having large breasts, to breast surgery, unwanted touching, abusive comments and teenage anguish. There were many examples of low body image, with one women explaining she had never been at peace with her breasts. My hope is that whilst making these artworks, and talking in openly and honestly in these supportive environments, that we can all start to think a bit differently about our breasts, perhaps in time even come to love our boobs. If nothing else, I seem to have had a good impact on relaxing the group…

I could fall asleep listening to your voice, it’s so calming.

Anon

We did it!

| Lois Blackburn

Thank you so much everyone who donated to the ‘Comfort’ Breast Quilt project, I’m thrilled to say we hit the target of £500! I’m so touched that 29 people have been inspired to help me work with vulnerable people.  

I’ve loved reading the wonderful comments people left when they donated, here are a few:

“I have worked on other projects inspired by Lois. I am fully committed to her work.”

“I took part in a previous project with Lois and benefited greatly from it so I am delighted that I can help give someone else the chance. Also in memory of my Mum’s boob which she misses after surgery to remove breast cancer.”

“I am really excited to contribute towards this wonderful project. I was lucky enough to breastfeed both my children into toddlerhood. It transformed the first months of our parenting, brought us together and made life so much easier. Boobs are amazing!”

“Such an inspirational piece”

This morning I met with some of the women from New Mills Women’s Group, who have just finished their pieces for the quilt, here they are:

Thanks so much to each and every one of you

If you have requested a fabric pack for yourself or a friend, I’ll be in touch soon for order details. I can’t wait to see what you make! 

“T*ts up, heads high – let’s do this.” Colette. 

Thanks again, all the best

Lois

Crowdfunding for Comfort

| Lois Blackburn

A huge thanks to everyone who has supported the project ‘Comfort’ so far, we are over half way there to my target of £500

Yesterday was the first ‘Comfort’ quilt making workshop, with a Women’s Group in New Mills, Derbyshire, it was a big success. 

“Thank you so much for today. I left feeling so much positive energy and relief to have told my stories.”

Alison

We shared lively stories, drank tea, eat flapjack, and started creating artworks. The topics included sexual harassment, breast surgery,  the joys and frustrations of breastfeeding and a coming to terms with our body image. 

“This session was brilliant, so lovely to meet you Lois. I’m excited to see all the finished work.“

Liza

Each member of the group went away with parcels of fabric goodies, and lots of enthusiasm for completing the work- illustrating everything from Breast feeding to ‘disco boobs.’  I can’t wait to pick the finished work up in two weeks.

In case you’ve missed it, I’m Crowdfunding to allow me to to send postal art packs with everything you might need for creating a piece for the Comfort quilt, posted direct to your home.  You can order your own pack, whilst at the same time raising money for me to give free packs to people facing financial barriers to these creative opportunities. 

If you know of anyone who might be interested in joining in the project, please do share my Crowdfunder the more people joining in, the richer and more exciting the art will become. My Socials are:  Facebook and Instagram

Thanks again everyone.

All the best

Lois

George Street Bookshop, Glossop, artist residency

| Lois Blackburn

Are you interested in finding new uses for un-loved or damaged books?

Have you ever fancied having a go at making a hand fan?

Fan making is on the ‘Red List of Endangered Crafts’, at serious risk of no longer being practiced in the UK. During my artist residency at George Street Bookshop, Glossop, I want to share my love of books with my passion for making these beautiful, functional, art objects, through a series of drop-in workshops and an exhibition of fans made during the residency.

I will work with you to upcycle books, from the Bookshop or your own book collection. We’ll take books apart, fold pages, use covers for fan sticks, cut, collage, wrap, manipulate… Inspiration will come from the books themselves, plus origami and fan making techniques from history, and around the world.

Three of my residency days will focus on the Menopause, inviting you to share your own stories, responding to my fan collection or creating your own menopause fan. 

All days 10am to 4.00pm (with short breaks) Days themed as follows:

  1. Tues 4th Oct, Manipulating paper. Taking apart books to use page paper and cover, investigating simple origami techniques, creating simple paper fan shapes to take home
  2. Sat 15th Oct, Connections. Investigating different ways to join paper; folding, gluing, pinning, stitching…
  3. Tues 18th Oct Imagery. Using favourite books as inspiration, investigating different ways to illustrate, eg. Collage, drawing, printing… To create a simple design for fan
  4. Sat 5th Nov Hot flushes and other Menopause symptom.. Lois will bring in her collection of fans and invite women to share their stories of the menopause, with the option of being recorded as part of a short artist film
  5. Fri 11th Nov Create your own hand fan for the menopause, or just for fun
  6. Tues 22nd Nov Hot flushes and other Menopause symptoms.. Lois will bring in her collection of fans and invite women to share their stories of the menopause, with the option of being recorded as part of a short artist film
  7. Sat 26th Nov Manipulating paper. Using book page paper,  investigating simple origami techniques, creating simple paper fan shapes to take home
  8. Tues 13th Dec Creating and sharing take home creative packs. 

Summer School 2023

| Lois Blackburn

Salvage: Transform

I’m thrilled to announce I will be one of the tutors at the Textile Study Group Summer School 2023.

The focus of the Summer School will be on salvaging and repurposing a wide range of materials. You may choose to work with a personal collection, finding inspiration in found objects, you could find new life in old materials or you might be drawn to work with discarded materials and the principles of fan making to explore ideas.

Your enthusiastic and experienced tutors will encourage and support you in finding new stories to tell through your work.

Dates – Monday 17 – Thursday 20 July 2023.  ( 4 days)

Tutors – Lois Blackburn, Julia Triston and Shelley Rhodes

Further course information and Booking Opens on the Textile Study Group website from – 27th September

Design Wall, Lois Blackburn

The pungent smell of Hawthorn

| Lois Blackburn

Day 2. Hawthorn also known as Maythorn or Whitethorn.

I set off on my morning forage full of expectation, the joys of spring, Ron tangling me up in his lead. I was after Hawthorn, not difficult to identify. You can eat the young leaves, berries and flowers- but personally I wouldn’t bother, its flowers are slightly almondy, slightly marzipan flavour- but not in a pleasant way. The leaves, very slightly nutty, but rather unpleasant. However they look really pretty!

And I’m not giving up, the Hawthorn is a circulatory tonic, and useful remedy for anxiety, stress and panic- and hurrah the traditional chosen alcohol for tincturing is Brandy- that’s worth a try!

As for the drawing- I enjoyed doing it, but next week will try with a different paper- this one is strangely spongy, the ink/paint does weird things. It’s very early days, so I won’t be to critical about the quality of my drawing. The subject matter is completely out of my comfort zone, so practice, experiment and play is what’s needed.

I’m off to the Co-op to buy a cheap bottle of brandy, tinctured hawthorn.… more on that in a few weeks.

Foraged

| Lois Blackburn

My drawing skills are very rusty, it’s been a long time since I sat and drew just for myself. I’ve been focusing on the doing rather than the outcomes, and enjoying every minute of it. Being able to loose myself in the paint, pencil, line, texture. Todays painting is just a tiny starting point, on what I hope will be a year long project. And writing about it, going public, I hope will help keep me committed, as I know it will be a bumpy ride ahead.

I’m aiming for a collection of 50 foraged plants. So that’s roughly 1 a week, a whole year of foraging for edibles and botanicals. My inspiration? Spending so long working on illuminated manuscripts for A Book of Ours, falling in love with medieval botanical drawings, such as the Tractatus de Herbis (ca.1440 my love of Elizabethan textiles, I planning to bring them all together in one big art piece, a follow on piece of my quilt Blood, Sweat and Tears.

So here I am, day one.

Walking to dog the other day I started chatting to a man gathering leaves to add to tea. He introduced me to ‘Jack by the Hedge’. I tried it, it’s delicious- with a flavour of mustard and garlic, with a bitter edge.

Both the illuminated manuscripts that have been so much part of my life recently, and the Elizabethan embroidery, mix foliage with imagery of animals, beasts, insects. For the first page of my sketch book, a dead goose. Near where I foraged the Jack by the Hedge, sadly lies a shot dead Canada Goose. Life in the country…

Next week, maybe dandelions? nettles? hopefully not more dead birds.