(Warning: long read. If you’re a TL;DR type, now’s your chance to quietly fuck off.)
I originally put a version of this post out in a quiet part of the internet that nobody ever sees, and certainly isn’t connected to this blog. That’s because the subject is so personal – even a bit shameful – and I was scared that someone who knew me would read it. I’ve become adept at keeping a bit of a shield between me and this blog. I’ll occasionally link to here from Twitter but never the other way round. It’s safer that way.
So, why am I posting this here now? It’s not going to change anything, is it? It’s that, frankly, I’ve had enough of hiding it. Of holding it in and trying to swallow the hurt. Because I’m hoping that catharsis will bring some kind of relief. This is what you get told by counsellors, talk about it. I can’t talk to MW about it. I just can’t. Primarily, the pain. Secondly, MS has slowly taken, and continues to take, her mind and her memory. Often, talking to her is like explaining things to a child. Reason enough. This would be a pain too far.
But I still feel this way. I have cared for MW since her diagnosis over ten years ago. This blog has gone a little way to allow me to express my feelings and thoughts. You might argue that this post is long overdue. You might be right. I hope you understand why I’ve kept it to myself for so long. Despite the fact that MW and I spend almost 24 hours a day together, I feel so, so lonely.
MW is predominantly immobile, can’t feed herself, can’t control her bodily functions, is partially blind; this disease has robbed her of almost everything. This is pain enough for her. To raise this subject with her would be too much. She’d feel like what’s left of her world is being taken away. I know I would. I know she would, too. You get to know this about a person. The disease and its effects scare me and make me feel like I’m in permanent mourning.
However, I’m only 44. I’m not so old as to be content being more a carer than a husband – despite the title of this blog. I’m still a man, a human being. I’m not a machine. I still want…no, I still need real love, sex, intimacy, kisses, the touch of a woman who is in love with me as I with her. A lovers’ relationship rather than one as carer and patient, brother and sister, father/daughter, the closest of friends, you choose which term is appropriate. I still have fantasies. Trust me, I’m no prude, I have an imagination. I’m not easily shockable. But those fantasies might as well be just a silent film in my head. There’s no outlet.
So, what does someone in this position do? Leave? “Yeah, I know it’s not your fault. I know you’re all vulnerable and stuff, and reliant on me, but I’ll be away now. It’s not you, it’s me” I know MW would be devastated to hear that. No matter how ‘right’ that might be. It would push her to do something stupid. I know. She told me once in an unrelated conversation. Plus, what kind of arsehole would do that to someone so vulnerable? This isn’t her fault. She never wanted this shit in her life. Neither of us did. She can’t do anything about it. How can I make her feel like less than a person? It’s not fair. There is still a love between us, even if it’s not the same kind of love as ten years ago. That love has changed irrevocably. I have my memories. Memories of laughter, those glances between lovers, walking hand in hand, weekends cuddled up together. I remember all those things.
But today, it’s all just history. Memories that seem like the yellowing pages of an old storybook. I know fine well that the same thing is happening to MW. She misses the touch of a husband, of a man who loves her in a way that she wants to be loved. Only it’s not possible now. It’s not a psychosomatic thing, it’s no longer physically possible. And neither of us can change anything. No matter how much we want to. What can I do? Let me turn this around. What would you do in this position?
Meanwhile, my tears are getting bigger. Hidden, obviously. Like I hide a lot of things. Anyway, I’ve written it now. Wade in to me if you want to. Go for your life. I don’t care anymore. I can’t hold it in any longer.