Bessie and the Beast

Matthew moved from what is called a wheelchair-stroller to an actual wheelchair when he was about four years old.  This transition created a problem since his wheelchair, unlike the stroller, was not compact enough to fit in the trunk of our trusty Toyota Corolla.  Panic ensued and we quickly purchased a second hand, oversized van previously used by a group home.  The van was huge, but equipped with the necessary wheelchair lift and tie-downs we would need if we wanted to go anywhere.  And since I often struggled (and struggle) with cabin fever, and if I am honest, a healthy dose of resentment about our constrained life, getting out was a priority for my sanity – and likely my son’s as well.

This hand-me-down van was also cheap, a necessity at that particular stage of our life.  Did I mention that it was also hideously ugly.  And huge.  Did I mention huge? Wow, was it BIG!  My verbal kids who were fairly young at the time promptly  named her Bessie.  I am not entirely sure why, but the name stuck.  When we retired Bessie and replaced her with a mini-van we invited all the kids in the neighbourhood over to paint her from top to bottom.  We then donated her to a local church camp where she transported canoes until the camp closed several years later.


Philosopher Merleau-Ponty in Phenomenology of Perception (if you have insomnia you should sprint your nearest bookstore and buy the book, I assure you, problem solved!) discusses how vital objects can become part of one’s body.  He suggests that a white cane for someone who is visually impaired stops being an object for the user and becomes a necessary and functional part of the body – as sensitive and as necessary as fingertips for some of us.  I bring insomnia-cure Merleau-Ponty into the conversation because he beautifully captures how I felt as Bessie’s driver.  Driving the behemoth I had to accommodate this much larger bulk while moving around the community. Her size became part of me when driving.  Bessie became a significant part of how I perceived space and movement when behind the wheel.  When we finally moved to a wheelchair accessible mini-van Bessie had become sufficiently assimilated into my sense of space that it took me ages to stop taking wide turns and parking in the remote spots of the lot.


Let me tell you I celebrated when we purchased a mini-van.  I had a love-hate relationship with Bessie.  She got us where we needed to go, but WOW was she was clunky and ugly.

Last year Matthew got a funky new wheelchair.  It is a dynamic chair and is only one of two in Canada.  Basically when Matthew moves the chair moves with him. It is way cool!  But one BIG problem with the chair is that Matthew sits about 6″ higher than a standard wheelchair because of the moving parts.  Throw in the fact that he is growing like a weed and has a father who is about 6’3″ and his head was grazing the top of our mini-van.  I had to duck his head when loading him.  I was becoming worried that I was one rushed morning away from concussing the kid. Or worse.

So last fall our mini-van days ended for good.  <SIGH>  We purchased another oversized van with a power lift.  This one isn’t as ugly as the original Bessie but it IS about as large. My teens and I spent days chatting about an appropriate name.  Was she Bessie 2?  For a while we called her Bluebird.  But in the end “the Beast” is the name that stuck.

These days I am back to navigating parking lots with extreme care and driving with the spatial sense of a long-haul trucker.  The upside is that I will likely never be homeless since I think the Beast actually has MORE square footage than those new tiny homes that are very popular!








My crappy life. Literally!

I will start off right away by saying if you have delicate sensibilities you might want to skip today’s post.   And then there’s part of me that thinks, heck, get over it, welcome to my life. Delicate sensibilities are luxuries not extended to extreme caregivers.

I always seem to be up to my elbows in bodily fluids, often excrement. If you hang around this blog long enough you will notice that theme. I wash my hands so often that for most of the winter they are a chapped, bleeding mess – and these days I glove for the messiest jobs to try to protect my hands. My darling husband gave me the super-strong fisherman’s hand type lotion for Christmas. Despite practically bathing in the stuff my hands are still cracked and bleeding.

Yesterday morning was like any other day. By 7:30am I had already had a fairly crappy morning. Literally. I start every morning by walking our dog. That involves crap. Yesterday morning was no different.

Then I returned home from my dog walk to a pile of VERY soiled linen on the laundry room floor. Clearly the child had exploded during the night shift. Matthew is on antibiotics after all. Diarrhoea is a normal result. Please bear in mind that my son is now 17 years old and quite large. We are not talking adorable little newborn diapers and stuff here.

I tackled the laundry.

And then, about ten minutes later, Matthew had a seizure. Seizures in the morning are not uncommon and we don’t get too excited. Matthew’s seizures, at least right now, are brief, self-limiting, and not too concerning. We just keep an eye on him and make sure he’s okay. But one of the consequences of a seizure includes a loaded brief. And this time “it” evaded the brief and was everywhere.   All over him, his bed, his linens, his pjs. AAAAAAAAARGH.

So I started round two of the morning clean up. The kid. The bed. The clothes. The linen. Me. By this time I have been awake for less than an hour, for the record, and for most of that hour I have been elbow deep in poop. It’s going to be an awesome day.

My husband, who throughout all this had been reading the Globe in the kitchen while sipping coffee (not bitter here, nope), walked into the laundry room in his tidy suit to say good-bye before heading to work. I forget how it came up, but I admitted that most mornings I can laugh about spending the first hour of my day dealing with poop, but today seemed a little less amusing. He cracked some joke about my crappy life and thought he was very punny.

I love him so I don’t actually plan to strangle him.


Your morning chuckle

Those who know me in real life know that I finely tuned my caffeine addiction during the early years of my son’s life.  That kid did not sleep continuously for more than a few hours until he was in kindergarten.  As I type this post I have a cup of coffee right next to the keyboard.

My only thought would be to replace Tylenol with wine.