A few weeks ago I put out a call to make Valentine's Day a day for disability bloggers to take ownership of love and sex. A few people agreed to take on the topic and I was offered assistance to make this into a bigger deal by a guy who runs a sex store in the States. But then, as life happens, I got very, very busy with things. I'd planned on doing a little more promotion, to seeing if I could co-ordinate something with the sex store ... but every day had just a bit too much. And then, suddenly, it's the night before and I'm sitting down to write.
I'd thought about writing about how people de-sexualize my relationship with Joe, preferring now to see him as a room-mate care provider. Turning acts of love into acts of care. Disability turned our relationship on it's head and suddenly instead of outraging some, we inspire others, and all for the wrong reasons.
I'd thought about writing about the challenges of managing to 'keep the flame alive' in light of the disability and the reshuffled roles we have with each others. It is much more complex and complicated than it was before. I need Joe in practical ways as much as I need him in poetic ways. There is a balance that needs to be struck.
I'd thought about writing something comic about power wheelchairs as sex toys. Expensive sex toys. Powerful sex toys. I grinned at the jokes I could make.
But, I don't want to write any of those things.
I'm going to be courageous and tell you simply, the truth. I have loved Joe all my life. I can say that because I feel like life didn't begin until he was there beside me. Yes, before I was disabled, I loved him. After I was disabled, I loved him. Right now, I love him.
But, as I decided to write this, I wished that there was another word beside love. Over all the years of loving, the years where many, if not most in society, told us our love was wrong, I've enduring seeing that word embroidered onto silk hearts and then attached to the paws of stuffed, furry, Teddy bears. I've endured stacks and stacks of cardboard boxes shaped into cardboard hearts and filled with cardboard chocolates - hearts that will never beat, even once, the dangerous beat of forbidden affection. I've endured love trivialized.
Yes, I want another word for courageous, powerful, inescapable love. To describe a love that lasted when no one said it would. To describe love that was born into a world of prejudice and survived into a world of sitcom boyfriends.
But more ...
I read recently that 90 percent of male partners of those who become disabled during the course of the relationship, leave. That only 10% of couples survive the advent of disability. When I look at Joe, I know I found a man that could withstand the cold shoulder of disapproval from friends and family in order to love me. When I look at Joe, I know I found a man that could withstand the cold stares of those who don't understand why he stays when he could do so much better.
There needs to be a word to describe the feeling I have when I know I need Joe, emotionally, physically and practically. To express how it feels to be touched when getting care in a way that doesn't diminish, that leaves me feeling that - though I was helped, I am entirely able.
There needs to be a word for those who love well over time. For those who actually manage 'in sickness and in health'. For those who actually, unasked, scratch your back when it is itchy.
Whatever that word is for what happens between couples like us - I feel it. Every day. Every way.
We don't celebrate Valentine's Day, I could never insult Joe with manufactured love, when he gives it to me - real, right from the core.
So, I'll tell you, I love him.
And hope it gets back to him.