• Emily Ainscough


Updated: Jul 7

This post contains symptoms of FND that some readers may find triggering. The title of this post also contains a royally awful pun that even I find triggering.

So, for a while now, I’ve said I would write a post about my ex. I have three exes, there’s the high school sweetheart, Nick, the true love, Harry, and the latest was a wonderful Irishman called Danny, who was only ever really meant to be my friend. In my own way I still love all of these men, but since I had dinner with him last week, the person I want to talk about today is Harry.

Harry was my boyfriend during the time of my diagnosis and the start of my journey with FND.

I was just watching an episode of The Big Bang Theory (yes…I read Dostoevsky and watch American sitcoms. I am large. I contain multitudes.). Anyway, in this episode Howard and his wife Bernadette have to take care of his mother for a few weeks because she is unable to walk by herself. Obviously, they love her, that’s why they’re doing it, but in the show we aren’t sympathizing with the mother, we’re sympathizing with the young couple who have to park their lives to help their mother go to the loo. In one scene Bernadette downs a glass of wine and talks about what a hell it is. I burst out crying, because that’s me, I’m the 'hell'.

The last thing I ever want to be is a drag on someone’s life, I don’t want people to make jokes about having to take me to the loo, or get frustrated with me for asking for another glass of water when I can’t get up to get one myself.

Harry called me a burden once during our relationship, and since then I hear it everywhere and all the time. It’s bad enough to be forced into a position of dependency, but to be dehumanized like that, to feel like a chore…that’s the impossible thing about being disabled that I am yet to wrap my head around. There have been times when I have lied on the floor for hours, helpless, because I can’t bare to see another person be short with me or be frustrated that it’s happened again and they have to stop what they're doing to help me. I'm not sure I'll ever get used to seeing people exasperated by my condition, my own exasperation I can handle, but not their's.

The fact of the matter is, during my relationship with Harry, he made things a lot worse for me. I felt like I had no safe place to be, and I’ll be struggling with the trauma of that feeling for the rest of my life. My independence has always been important to me, and during the time in which my whole world was shaken into tempest, I was stuck outside his apartment in the indefatigable December rain unable to get myself inside because he had forgotten me. I know I deserved better than that. I deserved to have a safe place to exist with the help that was necessary for that existence. I deserved to be able to eat when I was hungry, drink when I was thirsty, be safe and be sheltered. But he deserved better too.

He deserved to go through his university career without having to learn to be an unpaid carer in his early twenties. He deserved to go to bed thinking about essays and friends and internships, not about the strange dynamic that had germinated from nowhere with his suddenly disabled girlfriend. There are lots of things I blame Harry for in that relationship, but the truth is that he did the best that he could under incredibly difficult circumstances. The relationship was a horrible place to be for both of us, but the fact that I wasn't getting the care that I needed was nobody’s fault.

Then there are the things that he was at fault for. He often chose everybody else before me, he was inconsiderate, he was always late, he didn’t know my birthday even though we had been going out for a year, he got frustrated at me for being upset at what he deemed silly things to be upset about, and that made me feel really small. But then I went and cheated on him, I broke the most basic and integral sort of trust in a monogamous relationship. I was cruel and I was selfish. Nobody is perfect, and absolutely nobody is perfect when they’re 21. And if I could do it again, I would love him better. I would set my boundaries clearer, I would exercise restraint, I would turn away when I deserved more and I would be faithful. I do love him still. I think deep down, I know that he loves me.

We shared a really nice bottle of wine in Bloomsbury and got some food. I allowed myself to smile again at his mannerisms which I have been revisiting in my mind so often lately. (I have missed the angle my head would crane to when looking up at him). I lost myself in dreams of reaching over and holding his hand. He makes me feel like a child and like a strong woman all at once. It was lovely. But I went too far, as I so often do. Harry is an avoidant personality type, and on top of that, I had really hurt him with the way the relationship ended; knowing that, it was imperative that I tread with caution, and I didn't. I think I went there hoping that he’d say 'fuck it, let’s give it another go,' and given that he didn’t say that, it is then my instinct to make that kind of a proposition myself. But that isn’t fair.

For now, the best way to love that funny, tall, posh man, is to leave him be. I need to stop rattling his cage in hopes he’ll come out to me. I have been selfish and reckless, not all the time, but far too many times now. Well, here starts a new chapter. I vow to no longer force myself into the lives of the people I care about whenever I want to; and instead, I'll be there when they want me, on their terms. I will hold my head high, breathe, and look on. If he decides he ever wants to try again, he knows where I’ll be. So, this one is for all of you out there frantically shaking your snow-globes.... put them down, let the snow settle, and before you know it, it will clear. (This has all been a bit touchy-feely lately, hasn't it? I promise next week I'll dial up the raunch!)

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