Overcoming Adversity: A Rare Disease Artist

Hi, my name is Gems Godfrey. Firstly I am a Mother of two teens Harry 19 & Amber 17, & a soon to be Wife to my partner Steve.

I am 37 & a self-portrait artist & photographer.

My primary styles are abstract/contemporary/fine art nude portraits.

Working mainly in natural light, my works are mostly black and whites & monochrome based.

But, I haven’t always been creative in this way, you see my work is based on my own documentation of this MD journey I have been forced to take due to living with a life-limiting, disabling, degenerative disease.

I was diagnosed in my late 20’s with Limb-Girdle Muscular Dystrophy causing my muscles to become weaker & also become peg fed via a tube into the small bowel. Due to dysmotility of the smooth inner muscle which is responsible for digestion.

My shoulder & hip girdles are weak, along with my arms & legs & core muscles. This overtime has spread out to my distal muscles & facial muscles. Therefore I am now a powerchair user.

I haven’t always been a photographer or seen myself as an artist, in fact, before my diagnosis, I used to work in a neurorehabilitation department for the NHS. Muscular Dystrophy meant I had to give up my job. Which I loved, so naturally at the time, I was distraught.

A little while after being deemed medically unfit for work & following a period of depression, I decided to get a camera & slowly over a few years taught myself to take photos.

At first, I saw photography as a hobby to fill the days where I once worked, I didn’t expect to keep going with it but as I experienced more progression with the disease, I started to document my journey by taking photos of my body in nude form as a way of expressing myself.

I was very aware of feeling out of control of my situation & I wanted to gain back some control, self portrait fine art photography has helped me on my way to doing just that.

I wanted to document the changes & if it could help anyone else going through a similar situation, especially in regards to body confidence & attitudes surrounding this. Then I quickly came to the conclusion that it would be a worthwhile & rewarding project.

I found it helpful to document the struggles, the trials, pain, isolation & heartache which I was personally experiencing with this disease; As well as the achievements, lessons in body confidence, building on acceptance with the constant changes in abilities & at the same time creating a space to feel freedom no longer confined by my disease.

My photographs have all been driven by events surrounding my diagnosis, my daily life, my mood, my grit & determination…

I found artwork has helped those in similar situations to myself by being able to talk about & approach these issues that we, in general, are often scared to discuss & speak out about. For fear of being labeled as negative.

If labels are to exist then I wish everyone to label themselves as beautiful.

Because everyone is.

Using art in photography is my way to reach out to the viewer, the art collector, galleries, curators, creatives, fellow photographers, models, mental health advocates & most importantly to fellow MD sufferers & to everyone who is living with a life-changing condition.

Making unique art using my own body to tell a story & raise much-needed awareness at the same time is now so ingrained in me.

Mental & physical challenges for a disabled person are an everyday occurrence.

It is so important that we show others they are not alone.

The physical challenge of creating art is actually to find a method that works for you personally & then constantly having to adapt & build on that method or set of methods to enable yourself to continue to create & produce your vision.

As Muscular Dystrophy is a progressive disease, I find my photography setups are always changing & I am always having to adapt to find a way to get results.

Mentally this can be exhausting, but the rewards are extremely worth it.

The advice I would give to anyone out there in a similar situation to myself is to not give up on yourself.

There will be days where you can’t physically do a task & you need to rest, then listen to your body & take that rest, but as long as when you feel you have a little more in you to be able to physically achieve something, no matter what that is. Whether it is washing your face, preparing a meal, or starting a project in something you love, whatever it is, just don’t give up on yourself.

One of my favorite quotes

“Strength is upping your game,
When you want to give in”

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