Sore yet so thankful. Online connection - it's a cheer squad.

 

I was so very sore yesterday. It felt pretty awful. My legs were throbby and weeping and inflamed. I don't know if you know what it feels like to have sore skin. I can't even really explain. It's like my skin is hot and damp, and my limbs are heavy. It feels like my skin is torn. It feels like I can't remember what it's like to not feel pain.

I went to work for a few hours, because a few hours is better than not going at all, and then I went home to bed to sleep. I had an oil and salt bath. And I rested some more. It hurts.

However, I keep saying it, but I feel so lucky for this life! Even during the sore times.

This morning, I'm flying to Sydney to the 100 Women of Influence Awards. I'm worried about flying when my legs are so sore - lucky it's a short flight. I plan to rest up in my hotel room instead of exploring the city this afternoon. Maybe get a manicure if I feel up to it. And then, it's the awards night, a time to dress up and celebrate the way women are changing the world. So excited!

On Monday I was contacted by some former teachers of mine to tell me I will presented with a plaque and my photo hung in the Murray High School 'hall of fame' at the end of the year.

I'm even more excited to be able to talk to the students about appearance diversity and acceptance, and about finding your tribe - a message so important for those who feel alone.

That event will be the first time I've been back to my high school in years. I went on stage to accept various awards, but I'd never spoken to my peers. I always imagined that if I did, I'd be laughed at. Sniggered at. Not paid attention to. Come December, I will have trepidation. School was not a good experience. But it's such a privilege to have a small moment now, as an adult, to address my school. The students aren't my contemporaries, but it will feel like I'm talking to the class of 1999. I've got so much to say.

I just can't believe the life I've created for myself. As Darren Hayes sings, who would have thought it could be this amazing?

-

Being online so much, and being connected to so many people affected by Ichthyosis, I see so many people who uncertain about their future. It's hard not to take these on as my own worries. I want to let people know they're not alone. I am always quick to welcome someone and offer them an ear - or set of eyes - if they want to talk (or tell their story on my blog).

I understand that parents (and patients) grieve for a life that could have been. I know how hard it is. I know the not knowing. Wondering whether life will ever be 'normal'. Feeling as though they are, or may be, missing out. Resenting the cream and skin that gets everywhere. I've been there. My parents have been there too. I maintain that life with Ichthyosis will be hard, but it can be amazing, if you let it.

I can't promise that it will happen soon, it might take years of feeling lonely and like an outcast (like I did). And it can be physically painful. I don't mind looking different, but what I'd give to have pain free skin. I get it.

When I was laid up in bed yesterday, elevating my legs to reduce the pain, I saw a post from a mother. She worried that her child was missing out, that she would face rejection because she's not like other kids. It saddened me. I wrote back, telling her what life has been like as an adult with Ichthyosis. I said:

I can tell you that life with Ichthyosis is hard, but it can be wonderful. I never feel life I've missed out on things...Things were hard for me, especially at school, I faced a lot of rejection. But they did get better. Your daughter is different to other kids, but she's not missing out if she has the love from her parents and family and friends, and the encouragement that she can do anything she wants to (even if it's a little differently to how others do them). Physical appearance is not the defining feature. What's important is a kind heart, inclusion and good values. If your daughter has these qualities, I am sure she's well on her way to making some strong friendships.

And then a woman who also has Ichthyosis wrote about how she is married with two grown up kids and works as a neuropsychologist. She said "life is what you make it". Yes it is! My friends Hunter and Bailey perform concerts together to raise awareness and funds for Ichthyosis. Mellissa, who I met in San Francisco, is about to have her first baby. Little Evan goes to preschool and LOVES it. Katie is studying to be a nurse, she's recently interned at an African hospital. Jeff is a Cub Scout leader, teaching children life skills and values. Larisa is a teacher. And baby Mason loves to get into mischief. These friends, and many others, are just going about their life, being ordinary through extraordinary circumstances.

This connection we have through the Internet brings a world of support that - sadly - many people never get in person. It's a chance for us to shine, to tell our stories and be ourselves. And we can lean on each other. This online connection is an empathetic cheer squad, a band of security guards ready to tackle any bully we're faced with, a fan club, a mirror to make us see how worthy we are.

When I read stories of little girls being bullied in a dance class because they look different, or little boys being excluded and called names, I leave a message for their parents to pass on, telling them how amazing they are.

Every day I am grateful for the support I get, and I am so glad to see it given to others in similar situations too.

While sometimes people might see me as unrealistically positive, or a little too chipper considering I'm in a lot of pain, or too enthusiastic to want to tell my story to the world, I will continue to let parents and patients know that life with Ichthyosis is hard - it's so damn hard and sometimes it feels like my skin is on fire - but it's amazing.

-

I made this video last year. I hope it gives you some hope.