Lookin' at my butthole!

Jack, or Jackie, as I called him, was hit by a car when he was five, which caused permanent brain injury and hemaphaligia (or paralysis on one entire side of the body). Jackie also developed some OCD or obsessive compulsive disorder, as a result and echolalia, which makes a person repeat either his own words or someone else’s a lot. For example, if you said, “How are you?” to Jackie, he would say, “Good, good, good, I am. How are you?” and when you said, “Good,” back to him he would say, “Yeah, good, good, good. Yeah, good.”

Because the body builds up toxicity and resistance to drugs, there were often notes in the Pathways log book stating that Jackie’s meds were changed or adjusted, so we should watch out for his obsessive behavior, like lining up scores of dixicups around his room with various levels of liquid in them, or layering his clothing, like enough to make him appear 50 pounds heavier.

Jackie was in his sixties when I started working at Pathways and by far his most obsessive trait came with eating. Once, after reading that his meds were changed, I walked into the kitchen to find him stuffing an entire bag of marshmallows down his throat. Literally, he had ripped one end of the bag open and had his mouth open to the ripped end and was using his right hand to force the entire bag into his mouth! Another time, I had to sit next to him to slow him down while he ate. This was one of his ADLs and I would have to tap his hand after three bites taken at lightening speed to remind him to slow down. Jackie liked me, so he didn’t want to be mean to me, but he also didn’t realize when he was talking out loud. Every time I touched his hand to remind him to slow down he would say, under his breath, but rather loudly, “Hate you, hate you, I do, you bitch!”

(As an aside, I met my future, and then ex-husband, “Alex” (in case he wants his privacy) at Pathways, and for some reason, a huge number of his siblings and in-laws also worked there. The story I am about to tell is really his, but because he came home from work and told it to me, and I can picture it so clearly, I feel like it is okay to tell it).

So Alex shows up for work one night and finds a note in the log book saying that Jackie’s meds have been changed again. He has been assigned to work with Jackie and his roommate and goes in to find them, but Jackie is nowhere to be found. Instead, he has left nearly fifty dixicups filled at different levels with water in a line around his room. Alex knows this is not a good sign and goes looking for Jackie. After being unable to locate him in the public areas of the house, Alex goes to the bathrooms. One of them is locked so Alex knocks and Jackie lets him in, but goes back to what he was doing immediately.

What he was doing:

Jackie is ass-naked, standing on the sink, bent over with his butt to the mirror, looking over his shoulder. Alex says, “Jackie! What the hell are you doing?” To which Jackie replies, “Look, look, lookin’ at my butthole I am!”

Needless to say, this became a huge joke in the Alex/Abby household and we would randomly call out “Look, look, lookin’ at my butthole I am” for comic relief.

Pop

Despite poo scraping, drool kissing and other misadventures, I adored working at Pathways for several reasons. The first of which is the sense of humor the guys in the unit I worked in showed. The second is that I had to be really creative in order to get the guys to do their “Activities of Daily Living” i.e., brushing their teeth, dressing, etc. Finally, I really loved having a break from the theoretical world of collegiate studies where theories, meta-analysis and deconstruction had no real practical application.

One thing that was lovely about Pathways was that we were allowed to take our clients for outings when we weren’t working. So Ed, who liked to have a beer, even though he was in his fifties and could barely feed himself, could be picked up on a weekend and taken to a pub where he would drink a microbrew from a straw.

I adored Brian, though he had many traits not to adore, like copiously masturbating with whatever fluid he could find (think aftershave, toothpaste, etc.) while moaning “Moooooooooom.”

There were many times that my best friend (who also worked at Pathways) and I would take Brian out for a burger and soda. This is when I discovered that the way to say “pop” or “soda” in ASL (American Sign Language) was to close your left fist with your right thumb inside of it, pull your right thumb out and slap the top of your left hand while mouthing the word “pop.” Whenever I did this when out with Brian I would puff my cheeks full of air and make a really loud “pop” sound. Eventually, it got to where I could be across a room and puff up my cheeks, ready to say “pop” and before I even made a syllable, Brian would laugh so hard he’d shoot whatever liquid he was drinking out of his nose. This became my favorite trick when a new staff showed up and tried to get Brian to bed. By this time I was working nights and it went something like this:

New staff (ns): Brian, it’s time to put on your pajamas.
Me: (looking at Brian from across the room and puffing up my cheeks)
Brian: AAAAAAAHHHHHH (shooting bedtime milk out his nose)
NS: Brian! What are you doing?!
Me: (puffing up cheeks again)
Brian: (still shooting liquid out his nose)
NS: (crumpled in a ball of frustration).

Ah, the fun could go on all night. However, I have some semblance of human decency and relented so Brian would follow instructions and get ready for bed.

The Tao of Poo

When I worked at Pathways the first year I worked the 6:00 a.m. to 10:00 a.m. shift, after which I went to school.

One fine morning, after copious drinking which led to the inevitable shakiness and headache, I was assigned to Charlie and Brian’s room. I went in to wake up Charlie, because he took longer to get dressed and ready than Brian. I went in to their bedroom and noticed immediately that Charlie was not in bed, however, his covers were pulled up all the way up. For some reason (think horror movie wherein the female victim does something stupid like walking alone outside in the dark after she has heard a scary noise) I felt compelled to pull back the covers on Charlie’s bed. Centered in the perfect indentation of Charlie’s sleepy outline was a gigantic pile of steaming human shit.

This did not bode well.

After choking back some dry heaves, I looked up to see a trail of poo finger paintings leading in a trail across Charlie’s bedroom wall. I followed them to the hallway, where they continued, and on to the shared bathrooms. I knocked, but Charlie couldn’t talk, so I took his “Uh-uh-uh-uh-ah” as an “okay to enter.”

I entered the bathroom to find Charlie eating a log of his own poo. Yes, this is true. He had a bit of his own poo squishing between his teeth and was swallowing it. Needless to say, the dry heave/gag reflex was working in overdrive and I had to run into the bathroom across the hall and follow through with completely vomiting all over the place.

Here is an aside:
I have noticed that some individuals with developmental disabilities, Alzheimer’s and other mental disorders have a neural switch turned off which tells them that poo is not for eating. Apparently, this condition is called “coprophagia.”

Part of me wants to believe that Charlie was blissfully unaware that he was eating poo and that poo is generally considered off limits. However, I swear to god, Charlie was laughing his full head off when I entered the bathroom, gagged and ran out.

Regardless, I spent the next 3.5 hours cleaning up not only the finger painted poo on the walls and the poo filled sheets, but also the poo in Charlie’s teeth – all the while taking incremental breaks to run into the bathroom across the hall to vomit, dry heave, gag and cry.

I finished work at 10:00 and went to my 10:30 Philosophy 101: Ethics class where we were discussing the metaphysics of Immanuel Kant. I looked around at the half-interested students and thought “I just cleaned shit out of a dude’s teeth for three hours – like I really care about the categorical imperative.”

Needless to say, I passed the class with a C.

The Joy of Signing

Somewhere around my first few weeks at Pathways I was assigned Donald and Jesse’s room. Donald was the youngest member of the grouphome, maybe 18 or 19 years old. He couldn’t speak, but could sign – not Helen Keller sign language, but his own rudimentary version of signing. He also didn’t speak except to loudly repeat a phrase that sounded something like “DOH-KWA” at extremely loud levels. If he was really excited or upset he would repeatedly yell “DOH-KWA!” and bite his right hand so badly it would bleed. (Aside: When I saw “What’s Eating Gilbert Grape,” Leo DiCaprio looked a lot like Donald and did the hand-bite thing, which made me think he was pure genius as an actor – then I was subjected to “Titanic.”)

Anywho – Donald also had a continuous river of drool demarcating both sides of his chin. Literally, I never saw him with out the drool line, no matter how many times he, or I, wiped it away.

My first time working with Donald I was helping him choose his clothing for the day from the closet he shared with Jesse – who was very fastidious and tidy. Donald picked some god-awful Hawaiian shirt and I asked him if he wouldn’t rather wear a different, more age appropriate shirt (i.e. one that didn’t make him look like a middle-aged man trying to reclaim his youth). Apparently, no one had every taken an interest in how stylish young Donald appeared and he was overwhelmed with emotion at anyone even caring, because young Donald quickly grabbed the back of my head and kissed me on the lips! Not a French kiss, but a baby peck – a baby peck saturated with drool from a recently awoken, not-yet-tooth-brushed mouth. Egad!

I immediately ran from the room and grabbed The Joy of Signing (yes, that really is a book) and taught myself the signing sequence for “You-need-to-ask-before-you-kiss-me.” I ran back and signed this to Donald, who clearly had no idea what I was signing and simply laughed and laughed, saying “DOH-KWA, DOH-KWA!”

It has been over 15 years since I worked at Pathways, but I still know how to sign “You-need-to-ask-before-you-kiss-me.”

DDD #1

DDD (Dispatches from the Developmentally Disabled)

so, to put myself through college I worked in a group home for the Developmentally Disabled. I worked in a group home that was supposed to provide “intermediate care” meaning my dudes were at some point supposed to be able to live on their own, which was highly unlikely, as you will see from these posts. The name of the place was something akin to “Pathways” as if any of our dudes would ever find a pathway out of the group home setting. I remember very clearly watching the commercial for Special Olympics when I worked there, with all of the beautiful and friendly looking DD folks, like those with Downs Syndrome, and laughing my full head off because the DD folks I worked with were not nearly as cute and certainly couldn’t run in a straight line, if even forward, like the folks on the commercials did. I was telling a friend about my adventures the other night and she thought I should write them down, so I am, because they are funny and true, but most of all, because they represent time spent with some very excellent people with huge differences from the rest of us.

Story !: “Charles*”

Charles had half a face. Literally. Whatever malfiecance happened in the womb caused him to have skin grown over his left eye, half of his left nostril and half of the left side of his mouth. It would have been lovely if someone would have told me in advance, however, on my first day at Pathways, I was simply told I had to wake up Charles and Brian, his roommate. I went in on day one and pulled the sheets back on Charles’ bed only to be confronted with his left side (which would be the side where there was no face). I was eighteen and very clearly remember pulling back the sheets and freaking out. I spent my first day of work sitting cross-legged on the floor of Charles and Brian’s room crying and wondering if I could get my old job at Pizza Pipeline back. Charles would go on to be one of my favorite clients, despite the fact that I had to clean shit out of his teeth with a hangover one day when he decided his own pooh was a delicacy (that story will come in subsequent posts). Years later, I would also rescue a fresh faced 18 year-old from Charles’ recalcitrance when he sat down in the middle of the busiest street in Moscow, Idaho. (Again, another post).

This is dispatch 1.

*Of course all names are changed for confidentiality reasons.