My husband is first and foremost my husband, but also my carer, caregiver, personal assistant ad infinitum. Actually, when I introduce him to people and clarify his role, it is usually as “ma bitch”. He does shit for me. He does the shit for me that I can’t do. He helps me with the chronic illness stuff and he gets me out in the world, something which I am no longer able to do on my own.
*Everything* I have read about being a caregiver is depressing. Maybe I’m not reading the right stuff, I don’t know. This article by Ann Brennhof of The Huffington Post is so thoroughly bleak (as I’m afraid are the majority of her article, particularly around this subject) it kinda made me wanna so kill myself by looking up for a really long time in my specially adapted shower. Walking into the ocean, let alone filling my pockets full of anything heavy is way beyond my skills set at this point. Seriously, if this is the sort of diatribe that people are reading you’d sooner take the aforementioned way out than even care for a person you love dearly, let alone ever getting into a relationship with a disabled person.
My husband and I have been together for 5 years, married for 2. He “knew what he was getting into” when he decided to take a chance on a crip, who was always going to be a crip, and whose crippiness would only get worse as we went down the line. He actually couldn’t believe his luck, coz I am damn fine…ya know, for a crip!
We do all the things that “normal” couples do; have sex, argue, go on dates, do things together, have a bit more sex coz, ya know we gotta jump on that train while she’s still running, ya hear? Sometimes sex is infrequent. Sometimes arguing is frequent. I am however led to believe that this too, is normal. What we do most of all, is laugh! We laugh long and hard…and if you were my husband, I would be making a sex joke about what I just said right there. It’s kind of our thing. The not so secret secret to a good relationship, particularly one where your other half helps you shower and dress after you wet the bed.
If you’ve read past this point, expect to read explicit crip secrets that may cause you to vomit and/or pee a little. If that already happened when you read about me pissing the bed, then seriously, how did you get here?
As a wheelchair user, you are susceptible to pressure sores. As you’d expect, they happen where you sit; your butt, your tailbone, your conch shell (I have had two kids, mine it more of a…you know what, never mind). You need to catch them early or they get pretty nasty (more of that story later, if you like gross and embarrassing cautionary tales), so as soon as I think I have one, I get it checked out, first by Jason (this is the husbands name), then by Doctor if the situation requires it. Now, for non-crips, the only time you expect to be on your back with your legs akimbo in front of your partners face is when far more delightful things than pressure sore are going down, I mean…going on. You can cry and feel disgusting (which, I’m not gonna lie, I have at times) or you can laugh.
On the last occasion that J (which I also call him sometimes) visited my nethers without the express purpose of giving me at least 7 orgasms, we were trying out a new dressing on the pesky little pressure sore. It was more complicated than putting together Ikea furniture, and so I refered to the leaflet that came with the dressings. I had a good strong belly laugh all to myself after misreading the word “cuts” (by virtue of where my husbands head was). Then came disassembling the dressing in order to get it where it needed to go.
“Take off 1” I said to J, as he couldn’t concentrate on instructions and look at an injury so close to my foof at the same time. “Then take off 2 and press on injury”. All the bits were numbered, so maybe slightly 1 up on Ikea. “Then” I shit you not “part the flaps”. Part the flaps!! In theory it meant flaps 3 and 4, to complete fixation of said sterile dressing, but there was nothing as ambiguous as “cuts” to misread here, as my flaps were very much at the heart of the problem, and we both pissed ourselves laughing.
And this is one of the many, many ways in which we make the most of a relationship that can, from what I have read, be challenging. We take our ‘weakness’ and use it to our advantage, and that is caregiving crip style, with the most amazing man in the world <3