Episode 50: Love & Disability

To accompany everything else going on, quite often I was also thinking about ‘trajectory’. Sound a bit weird, I mean I’m definitely not a rocket scientist or anything, but to me this referred to the life landmarks that I thought I would have achieved by this stage. By mid 20’s a steady girlfriend and maybe marriage, a career, and by 30 I was positive that I’d be starting a family. Then mortgage, promotion, etc. And, all my friends (okay most) were doing this, but with me, I felt like I was falling behind. I was so hung up on this notion of normal it was bloody bullshit. The true ideal of having my own nuclear family, and specifically a partner to love, both things which gave me so much grief. The whole thing made me feel inadequate and worthless (and that’s in addition to the disability thing). You see it was my belief that women would not even look at me (in that way), I was a poor disabled mess that nobody could love. So that blew my ‘trajectory’ in an instant. It was like, for example, how doing the things that I previously loved were no longer as simple or as straightforward as they used to be, and specifically ‘dating’ was one them. In many ways, this also created a shift from feel-good priorities to meaning. But yeah blah… before this shift to any sort of positivity, let me grieve here for a while. Dammit feeling unlovable was tough. Actually a friend said to me recently that the meaning of life is to be comfortable in your own skin. And I do think it’s that, but I also think it’s a little beyond that, it’s being able to selflessly give ‘that’ to others. In relationships, friendships and connection. That’s where it’s at. Love.

So long story short, I wanted someone to love, and in many was this was my ultimate goal. However, I also believed ‘they’ deserved someone better, capable and well not fighting for their life. ‘They’ deserved someone centred, consistent and on track – none of which I could provide. I couldn’t give someone what I wanted. I couldn’t hold them, help out or even go cook some fancy flashy dinner to get me out of the bad books. Maybe for paraplegics it’s a little different, but for a quadriplegic, I felt like I could offer was the absolute minimum. And why would someone choose me over an able bodied person anyhow? Fuck this hurt. Especially as, whether we know it or not, our deepest desire in life is to love and be loved. The heart, just as a newborn child, we all still crave affection. After all isn’t love a normal entitlement of life? Well, I felt like I was excluded. Then if I ever got up the courage to mention this to anyone, they’d always reply ‘just get a sex worker’. People in today’s world mistake ‘sex’ for ‘someone to love’. Then to go even deeper, what I’m getting at is, people in my situation are basically forced into a life without ‘intimacy’. Well, that’s unless they’re prepared to pay for ‘company’ – and personally I know I’m way too proud to go to a prostitute or escort! But still what is it about disability, why am I suddenly resigned to pay for sex, and why is that my only option? Isn’t my heart good enough? The whole thing would be discreet… yeah sure. I can hear all the water cooler talk already. This whole thing caused me endless frustration – and blue balls. No wonder I was doing this bullshit rowdiness thing. But what could I do, I felt like I’d get laughed off any dating website, especially if I did miraculously get a date then have to bring a Carer along. I even once tried a disabled dating website but all anyone was defined by was their illness or handicap – hardly arousing.

Anyhow I really want to tackle this, love with a disability – and to put forward my view. And I also want to say that the perspective I’m coming from is one of someone with a pre-existing disability seeking a relationship, not of someone acquiring a disability while courting or in a relationship. So hence, my dilemma is finding someone to love me and all my disastrous faults as well. Blah, now firstly, I believe true love is seeing someone as they are, their hang ups, and accepting them unconditionally. To selflessly give yourself to another. To share interests, to confide, but most importantly to help each other grow. And in that whole same line of thinking, I began to wonder if I myself could or would even date someone in my same physical condition, like this was real baggage. Like could I be that person to cuddle up to my partner in a hospital bed or even tend to their most intimate of needs, especially to start off a relationship this way (the exact same boat I was in). Originally I thought no, but I’ve since changed my mind. Anyways this whole sexuality, girlfriend, connection thing meant a lot to me at the time. And I suppose, my own personal desires were a long way from just a simple root, I was looking for somebody to be devoted to. To find that someone special to attack the world together. I was always on the lookout too. But still, all I seemed to do was listen to the stories. With a lot of Carers, I’d have to listen about their fucked up relationships. I was amazed at the emotional dysfunction. I’d even be constantly hearing of wedding plans, or a recently chosen baby name for a newborn. And here I was, all I wanted a chance to get off the bench.

So where do I go from here… women hate me… period!! (yep very negative… but okay that is a tad harsh). But truthfully, it was like I’d had the ‘loveable’ part of me removed. I just couldn’t surrender this. Now I do know of five relationships (one ‘mail-order’) from the thousands of disabled people I’ve ever met, and specifically this is where someone with a disability has been lucky enough to get married – dating I’m not too sure about – but honestly I haven’t heard much about that either. Also, this excludes couples where one has become disabled (or sick), just people with a pre-existing disability trying to get some action – the point I’m trying to make is it’s highly unlikely! Alright I now feel like I should go into these relationships a little more to argue my case. So I’ll exclude the ‘mail-order’ one (cos that’s just bullshit – oh and seriously I’m not joking about the ‘mail’ part; he did it), so then I’ll kinda just stick with two. And it seems these ‘relationships’ could reflect my best chance at finding love, so this is my evaluation: so I know both of these couples personally, and both are nurses who married their disabled ‘patient’ husbands. This is sweet huh… but nurses marrying patients was still frowned upon back in the 70’s [when both these couples hooked up] whereas nowadays it’s actually against the law. That’s right… if a nurse (or carer for that matter) makes any sexual advances on a client, they’ll not only be sacked and barred from the industry; they’ll be prosecuted as well. Or hang on, don’t quote me on this, but I think it’s right. And ‘why do I go on about nurses you might ask… well in all seriousness I don’t get the chance to meet many other chicks.’

Oh yeah I did see one quadriplegic in Women’s Weekly recently, and he got married, then divorced six months later. And look obviously don’t know what happened, but my assumption is that ‘she’ must have underestimated just how hard life is with quadriplegia – which ensues my problem. So really, through this long winded example, and a pretty long winded whingy whiney thing in general , really I should cut it here while I still have some dignity left – but I won’t! You see just on the off chance that you might be thinking ‘yeah so… there’s more people on earth than just nurses’ [as I’ve already mentioned], in all honesty I don’t get to ‘genuinely’ meet that many women – even though I do try. Or when I do [meet chicks that is] they don’t understand the ‘nature of disability’, or they might have trouble understanding me, and/or [another pain in the ass] I’ve always got a Carer hot on my heals – not to mention most people my age are well and truly spoken for – yep well that’s my love life in a nutshell – lol. So I guess you’ve just found the first real ‘chink’ in my armour… this is the one thing that I feel sorry for myself about. I just hate it! In fact, the sad reality is that I’m now freakin old, and I haven’t even been close to getting a girlfriend for the last 14 years. Not one date; okay maybe a brief sexual encounter with a nurse a few years back (but that’s a whole different story), otherwise 100% solidarity. The prime of my life. And something you’d probably be surprised to hear, I’m really lonely; yep always surrounded by people (Carers) but still lonely. So sure I try to fill up my life with bullshit, and yep I do have an awesome bunch of supportive mates, yet at the end of every day I still go to bed alone. And reality is, there’s nothing better than snuggling up (talking shit) to your partner at the end the day – not to mention sharing the day to day companionship – gees I miss it!!!

Then to think about being human – I still have all my senses perfectly intact (yep that includes feeling). And my favourite sense is without a doubt touch (hrmm hang on sight would be up there). And what is my favourite thing to touch [a lot to do with texture too] is in fact the human body. Ok I’m probably at risk here of sounding like a real dirty prick, but my favourite thing ever was just running my fingers ever so lightly all over a girlfriend’s body. I guess it’s just the soft silky texture of human flesh that gets me. But OMG these are only wild fantasies these days, heck I’m an alien! My disability had stolen my humanness. Falling far short of who I wished I could’ve been. I mean I was already going without so many things (movement, the ability to eat, my inability to live at home) and this just seemed to be another – what’s the drama then?? No touchy feely – big deal!! Well I’ve always wanted ultimate happiness, but was I destined to meet someone to reach this ultimate happiness? Well it’d take a pretty special lady. For the time being though I’d have to find that happiness alone. It was an unsustainable trajectory. I suppose my distraction, and my thing, was just to be the best man I could be – not making life so much about my primal needs. And I guess it’s a pretty obvious observation, but life had changed. I was no longer the Ford driving, steak and vegetable kinda guy, the reality of a wheelchair and synthetic formula food, was very much it. And again to point out the obvious, life was different. And different just wasn’t appealing. In fact, I had zero sex appeal. So this was the one conundrum I couldn’t force, I couldn’t make anyone love me. I was again susceptible, my fate again put completely in the hands of others. I couldn’t do much to look beautiful or wine and dine either, I felt just like the helpless fat kid sitting, crying at the edge of the ‘prom’ dance floor.

I felt like I’d be single forever – when all I wanted to do was love.