When the Multiple Sclerosis Society (of Great Britain) asked me to pose naked for the acclaimed British artist Melissa Mailer-Yates, I didn't know what to say.
I'm not pretty.
I'm not tall.
I'm certainly not slim.
I don't have good skin.
I always look tired (I always am tired).
For about three seconds I panicked.
I wanted to say 'yes'.... I know a once-in-a-lifetime opportunity when I see one.
But me? Naked?? Couldn't the MS Society ask me to do something a little less...challenging?
There are some opportunities you know you should grasp with both hands before they get away from you.
So I said 'yes' before I could say 'no.'
And here we are, four months later. Naked before the world.
I knew this project was going to be an emotional roller-coaster ride. It hasn't disappointed...
I decided to make a record of my experience by writing a blog.
I've written this blog for women with MS everywhere. The point of almost everything I do is to promote understanding of what it's like to live with MS.
When the MS Society approached me with the offer of being painted by Melissa, we talked about a title for the project. 'Strength Through Beauty' was suggested. I found this title difficult to relate to. I don't want to get into a debate about what makes a person physically beautiful, but I do believe that beauty is in the eye of the beholder. A person can be physically beautiful, but behave in an ugly way. Likewise, plenty of beautiful people have walked the earth, perceived as beautiful because of the things they did and not because of the way they looked.
I don't consider my body a friend. At 19, it turned against me and it let MS take it over. My body has always been prone to being overweight. My face is not pretty. I've always felt 'attractive enough,' but I do not feel strength through beauty.
But turn those three words around - Beauty Through Strength - and I think we get a bit closer to describing the way a woman with MS experiences life, her sensuality and herself.
I've met many women with MS in my life. Some show no outward sign of the condition. Others are - in the most extreme sense of the word - physically crippled by it. What is moving about these women isn't the sorrow or pity that you feel for them, but the realization that these women that are trapped in bodies they can't control.
Spend a few moments talking to any woman with MS, and whatever physical disability they might be contending with that day will fade into the background, and you will forget that you're talking to a woman with MS and realize that you're simply talking to a woman.
When the physical aspect is gone, you will find yourself face-to-face with a woman who is embracing life, who is not beaten, who has all the sensuality that every woman has. Our bodies are just a shell. Our bodies are not who we are. For me, it's our strength as women that makes us beautiful. Beauty Through Strength.
I started an online community, "Jooly's Joint," of people living with MS. Being able to build and be part of an online community made up of members of my ‘tribe' I have been able to step away from the ‘medical' model of disability, sickness and impairment and to rediscover and share my sensuality. My body is not who I am. As my body declines I can flourish.
Beauty Through Strength shows that I have used the Web to transcend my medical condition and have realized the woman that I was always intended to be and always can be.