It’s carer time again. Having gone that route in the past I’ve been reticent to try it again, but with the option of being able to start with a temp and work up to employing someone I like (more on that later) hopefully sooner rather than later, it’s a more attractive proposition. I don’t often think of myself as anything other than ‘me’. It’s taken a while to realize that part of my objection to carers is that it doesn’t fit into my sense of self. It’s one thing saying to Chris “honey, could you wash my back?” and quite another to wake up in the morning lying in bed with the realization that you’re stuck there until some stranger comes along to get you out of bed and into the shower.
I have always preferred to live life in the very short term, such as the next five minutes or maybe five hours. It makes it easy to not make big decisions or think about the big things life, like what do you want to accomplish in life? What about kids? What about that hovering future filled with more questions than answers? Even the medium term things require too much thought and planning. Does the restaurant have wheelchair access? Can we fit the drive there, the meal and the drive back into the time-slot I function in or will I get over-tired and crash mid-way through the meal? It’s not easy to think about life and about what I can do based on what I can make fit. I know that not being able to tie my shoelaces is not a life-changing non-event. Who cares. But somewhere along the long list of things that I can’t do, it does start to affect how I see myself. It’s difficult to see past the braces and splints sometimes. It’s difficult to accept that leaving the wheelchair at home is disastrous, however much I want to not bother. And it’s extremely difficult to maintain a healthy sense of self whilst relying on other people for the most basic of things.
My life is never going to be anywhere resembling average. I’m never going to be able to fit into a day all the things other people fit into a day. I’ll never be able to look at a keyboard without cringing because all I see is something that hurts me and all I remember is how the bones slide in my hands when I type and how incredibly painful that it. I can stumble my way out of bed in the morning and into my seat by the computer without much help most days, but I can’t open the glass door to the shower or the bath taps or clean my glasses without help. It has taken a long time to realize that none of that makes me any less of a person or any less entitled or deserving than anybody else.
Lying in bed waiting this morning, I realized that I no longer feel the need to prove anything to myself or anybody else. Some things I can do, some things I can’t do and I’m quite happy to gracefully bow out of things I can’t do whilst still being confident in the things I can do. I turned on Chris’ phone this evening and it has a photograph of me as the wallpaper and looking at it, I realised that so many things don’t translate. My joint issues don’t translate into Warcraft all that much any more. If I can’t play, I don’t and when I’m there, I screw up about as much as the next person. My health issues aren’t all that obvious. And even when it is, I’ve gotten more comfortable with that too. The wheelchair. Not the crutches, don’t think I’ll ever like the crutches. The splints. The bruises. The scars. The adrenaline shots. The seizures. The fainting. My erratically beating heart. And somewhere along the line of settling into my own skin, I’ve stopped caring so much about carers.
I was watching ‘Inside I’m Dancing’ a while back. There’s this one scene where Rory says: “Take a letter, Michael. To Dublin City Council. ‘Dear Sir or Madam. As wheelchair users with suicidal intentions, I must protest at a lack of facilities. None of the bridges are equipped with easy parapet access, thus curtailing the rights of the disabled to throw themselves in. Yours in *disgust*, Rory Gerard O’Shea and Michael Connolly.’ ” As I watched it, I realized that I’m actually quite happy with the way things have turned out for me. Living with a disability isn’t an easy life for any of the parties involved, but I wouldn’t want to change it. I don’t want to be anything other than who I am. And it’s silly of me to try and live my life in any other way than that which suits me and makes me happy. Each person is unique and I am just as unique as everybody else and there’s nothing wrong with being different, in fact, some times, it makes life that much more interesting.