Since being with Adam, I’ve come to see what it means when someone truly embraces my skin condition and my appearance. He doesn’t look past or love me in spite of the way I look. He doesn’t accept or tolerate – those terms are condescending and suggest someone has to accommodate a disability. He loves me. He loves all of me, and all that I leave behind.

Adam calls me his flaky strudel. He once told me that he finds pieces of my skin in his pockets, allowing him to carry me with him. He looks at me adoringly, with whatever face I’ve got on. In the morning, his beautiful face beams at my just woken up face – taut with yesterday’s skin. I’m feeling my least beautiful and he looks at me like I’m a supermodel. When my new face is on and I’m feeling good about myself, he’ll say, “you’ve got something on your face. It’s beautiful.” And my heart melts. Every time.

I imagine it would be such a lot to get used to – dating then living with someone who sheds so much skin, whose skin is a combination of dry and oily all at once and who’s always feeling some element of pain. I admit to being high maintenance – merely because of my skin, which is out of my control. This high maintenance usually involves me being too hot or cold or itchy or sore. But Adam has stepped up – feeling my body for a temperature (or just a chance to cop a feel!), pulling skin from my hair or ears, and never complaining how much of my skin and cream ends up on him. He’s here for me in sickness and in health. Ichthyosis causes incredible self consciousness in the patient, and it seems intrusive for those around us. I say that with absolutely no apology, though. (More about that in a future piece from me.)

I was reading a blog post by a blogger called Mom of 4 is Tired on the weekend. I immediately sent this passage to Adam, saying that the blogger could have written this about our relationship.

“Who is telling you that your body isn’t the ideal?

Only people who don’t really matter. Only people you don’t know. Only that same voice in your ear that is telling you you ‘re not a good enough mom or worthy of a raise or shouldn’t go back to school or wear that dress. Are they invested in you? Are they worth believing?

Who is telling me, telling you that your body is exactly right?

Only the man who lays down to sleep with you every night. Only the one person who sees you naked every day and would throw down whatever he is doing to meet you ANYWHERE, ANYTIME for a quickie.”

This passage resonated with me so much. A year and a half ago, I’d have resigned myself to a life of singledom, that I’d never experience this true love. Now, I am so lucky. Adam wants to touch me when I feel least desirable. He looks at me in wonder – no matter how I look. He holds my hand proudly, wherever we are. He’s never made me feel like I have to apologise for being me. What a privilege that is – though it should be the norm.

I don’t think happiness and the pinnacle of disability is finding a partner. And I say that even when I have – because I lived independently for so long. I developed the strength to love myself on my own, and I never thought I’d need a man to affirm my beauty. But the way Adam sees me is so powerful – for me, and for everyone who doesn’t see what he sees.

We set our wedding date on the weekend – 20 March 2016 in Melbourne. Such a happy moment for us, and such a happy time we have to plan. Gosh I love him.