Invisible

Over the last couple of years or so, I’ve been pondering how to move my textile work on to the next “level”. Since December with the end of my Experimental Textiles course looming and now with a gap before I start my new course at the Windsor School of Textile Art, I’ve been spending more time thinking and researching.
You see, questions such as “How do I find my style? my voice?” and “How do I get my art out there?” and more importantly “How do I know my work is ‘good enough’ or better than ‘good enough’?” “Should I find a mentor? Where do I find a mentor?!”  are running through my brain. It’s rather distracting I have to say, having all these thoughts whirring around!
I’m sure I am not the only one with these queries, in fact, I know I am not.
This blog post isn’t going to tell you how to answer these questions – sorry…. I’m still finding my way and trying to figure the answers out myself.
There are many articles out there such as this post by Alisa Burke or this series of posts by Leni Levenson Wiener. All offer good advice, all discussing how they found their way, their voice. All valuable and I’ve appreciated every one of these articles.
But… I still  felt and still feel stuck. I’ve asked and asked questions, I’ve read everything I can get  my hands on to try and understand what I want to achieve and how to get there. I’m pushing myself, I’m pushing my work but … I’m not “there” , I don’t feel I have reached a point where I can say “yeah, this is where I am trying to get to, this is my ‘voice’ ” Perhaps ‘that’ point is actually unobtainable and all those artists that I think are successful still feel  the same way as I do?
A comment that has come up a few times recently is “You need to use what is inside you. you need to choose something that means a lot to you, that you are passionate about, that you have message you want to tell the world about”. A YouTube video showing Comedian Michael Jr popped up in my social media quite some time ago with a message along the same lines and I found it quite powerful – in fact, I wrote the message down so I could see it  everyday:
“You may know your WHAT  but do you know your WHY?
When you know your WHY then your WHAT has more purpose.
Why is your WHAT important? What makes you do WHAT you do? WHAT is your WHY?
If you know your WHY then your WHAT has more impact because you are working towards your purpose. Your WHY is your purpose”
I know  my “what” and I’m narrowing it down from a broad sense to a more specific area of “what” BUT, I’m struggling with my “why”. I could carry on making textile art in a general sense, just doing it because I enjoy it as a hobby and there nothing wrong with that, nothing at all. But I’d love to take what  do a step further and everyone I speak to, every article I read talks about having a passion, a message to convey through your work. What are my passions? Well I have a lot of things I’m really interested in and  feel passionate about.
For example I’m a book addict, I love to read and it’s rare I don’t have a book on me wherever I go (easier now we have electronic books that store neatly on a small device not so easy growing up when I walked everywhere with a heavy book – if not in my bag, it was in front of my nose as I walked.. surprised I didn’t walk into more things!). I love fantasy and science fiction. Best book ever growing up was Enid Blyton’s “The Magic Faraway Tree” and a current fave is Erin Morgenstern’s “The Night Circus” (not read it? you must!)
But when I sit and list all these things none really inspire me, Surely if it’s a passion that has a message I want to tell everyone, then is should not only jump out at me but hit me in the face?! Should make me jump up and down with all sorts of feelings? Well, sort of, but you get what I am trying to say!
All this is whirring around in my head. I’ve also had this other idea, sort of on the edge of my mind for, oh, over a year now. It’s never made any progress, I’ve never put it down on paper or anything like that. It’s just sat percolating over and over (I’m an introvert.. thinking, thinking and yet, more thinking is something I’m very good at! Have you gathered that from this epic post yet?!). Recently a good friend of mine, who I met on the Experimental Textiles course, made a comment. She, very roughly, said that we were on a journey. The course was ending but our journey wasn’t and she felt in some respects that we were taking a sideways step – off the course which took us in one direction and moving on in a slightly different direction. This had me thinking (again!) not just about my journey as an artist but my journey through life and how the statement related to my life’s journey having to take a sideways step at certain points. This is where my word “invisible” comes in – remember I used this word on a half-day workshop with Julia Tristan about “using text in Textiles” (see last post).
But, before I go on too much, I need to tell you a bit about me..
I have Fibromyalgia, it is a complex and confusing condition with no cure. The literal translation is “pain in the muscles, ligaments and tendons” but Fibromyalgia is much more than pain and presents with many other symptoms that vary from person too person. I’m not going to go into detail, this isn’t a medical blog, there is lots of information available if you wish to find out more. But this post on The Mighty gives a very good insight into what it is like to have Fibromyalgia. I’m not telling you this for sympathy, bit of acceptance and understanding in the world for all with chronic invisible conditions would be nice but, I don’t want sympathy. I’ve come to terms with having Fibromyalgia and am working on making a life for myself with it.
Oh! There was that word – Invisible. That is right, Fibromyalgia is one of many conditions that is invisible. To look at me, you can’t tell how much pain I am in or how exhausted I feel or see any of the other symptoms I have. I look “normal”.
Fibromyalgia isn’t my only invisible condition. You see, I am deaf. I was born with a progressive hearing loss, by the time I was in secondary school I had a moderate-severe hearing loss. By the time I did my A-levels, it had progressed to severe and by the time I had my second baby, I had lost the hearing in my left ear completely and had a profound loss in my right ear. When my children were 6 and 4 years of age, I had an operation for a cochlear implant. A cochlear implant is a electronic medical device that replaces the function of the damaged inner ear, it works by doing the work of the damaged parts of the inner each to provide sound signals to the brain. A cochlear implant helps people who have a moderate to profound hearing loss and receives little or no benefit from hearing aids. I still use a hearing aid in my right ear but that just helps me have awareness of environmental noise, I hear very little, if any speech in my right ear. I hear a lot more than I have for years with the implant but I still miss a lot of sounds especially speech. I am still deaf.
Now unless you know me and I’ve told you, you wouldn’t know I’m deaf. Or if you suspected I had a hearing loss, you’d probably assume it’s very mild. I don’t look deaf (no, I don’t know what a deaf person is supposed to look like either..), I don’t “sound” deaf (because I had a progressive loss and used hearing aids, this allowed me to hear speech sounds when I was learning to speak) and I’ve learned to “blend in”, I’ve learned to manage as best I can. That doesn’t mean I don’t struggle, that doesn’t mean I hear all that is going on –  I don’t, I miss a lot.  I don’t, for example, listen to the radio as understanding speech takes a lot of concentration and even then, I miss over 50% – imagine listening to your favourite show and constantly missing half of the words. It’s even worse when there are lots of people talking – all those different accents and ways of speaking, lots of noise.. argh! Workshops with lots of people talking? I miss most of it. When the tutor is talking, I focus on what they are saying. Someone butting in with a question – I miss the question and have to figure out what the question is from the answer. If I’m sat at a table with you and lots of people are talking, I have to choose whether to concentrate on what I’ve attended the class for or trying to follow the conversation. I tend to focus on my work. The comment “you are quiet” comes up a lot, probably standoffish too but I’m not. I can only focus on one thing and I choose too focus on the workshop – that is what I’ve paid money to do, I’m happy to talk to you during breaks or after class though! I could go on, but I’m sure you get the gist.
But like I said earlier, deafness and Fibromyalgia are invisible parts of my life.  Both have affected my life in different ways at various points and have caused me to change my journey. I’ve also faced – like every deaf person, persons with Fibromyalgia or any other invisible condition – judgement from those who don’t know. Comments such as “you don’t look deaf” err what does deaf look like?? or “c.a.n y.o.u r.e.a.d m.y. l.i..p.s” usually with a hand across their mouth (that one usually elicits lots of in my head swearing) or “you are too young to have pain” OK, tell that to my body will you, don’t think it got the memo. Or there are the judgement looks when they see me taking pain medication etc. We’ve all judged at some point. Anyone who say’s they’ve never judged someone are liars. But really, adults should know better. If you don’t understand, why not ask? Why judge those who are already having life affected and make them feel worse, why not show some understanding and support?
Unless someone tells you about their -invisible- disability, how would you know.....
While pondering over all this, I decided to start on this idea that I had had. I’d been thinking about ribs – human ribs not the barbecued sort – and how my Fibromyalgia was causing costochondritis pain, a pain that made me feel like someone was trying to pull my rib cage away from my spine and breast bone – and I’d got this idea in my head of ribs with red lines of pain coming between the bones. It made more sense in my head than in words! I started playing around with sketches and cutting out designs etc in my sketchbook when DING! I suddenly realised I had a why! a message I wanted to get across.
You see, working  on my idea allowed my brain to do what it does best, think. Here I was trying to figure out this idea, thinking about my why and pondering this comment about a change in our journey when I started to understand a message I  wanted to convey – my why.
I’d started off wanting to show how Fibromyalgia feels or can feel but the more I thought how to do this with textiles meant my idea was changing, evolving. I started thinking about invisible conditions, my own, the ones that affect people I know and invisible conditions in general. My mind is whirring away with ideas.
My word is INVISIBLE.
My message is: invisible  – that doesn’t mean it isn’t there, it just means you can’t see it. Invisible can affect all of us whether from birth or later in life.
Invisible could be deafness, vision problems, fibromyalgia, depression and other mental health issues, heart disease, coeliac’s, crohns disease, diabetes, osteoporosis – to name just a few. According to the Care Quality Commission, nearly 1 in 3 people in England have a long term condition and many of those are invisible.
ONE IN THREE.. that’s a lot of invisible.
I’m well aware my message may change as I go along my journey or perhaps I’ll have other messages that I wish to share as well. Journeys change as you go along the path and I’m good with that.
Becca x

 

2 thoughts on “Invisible

  1. YES. Invisible. I have bipolar disorder, just badly enough to take medication since 1996, just badly enough to know I was ‘different’ since my early teens, just badly enough to work hard at trying to look/act/be/think ‘normal’. At 54, I’ve finally accepted that I’ll never be ‘normal’. And, at 54, I’m very happy NOT to be ‘normal’. What is normal anyway? it’s a societally-induced way of acting/responding/being that is different from place to place, generation to generation. My word is Normal, with a subset of Invisible. Thank you for this post!

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    1. I like that “Normal with a subset of Invisible” – there is no “normal” as we are all different so perhaps we need a different phrase to describe those considered “normal” ?! xx

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