Chapter from the upcoming book Viking Funeral. Scroll down to start at the beginning. XO M
Dave’s unavoidable life circumstance forced him out of college if that wasn’t blatantly obvious already. That year 1973-4 transformed into a freshmen year at Life University as a paralyzed man with credits earned at San Bernardino Community Hospital.
He had caseworkers provided by what state agency, I never knew, but he had several caseworkers over the years, starting from the day he hit the hospital. I am not exactly sure what these people provided him; I think they mainly helped him navigate his social security disability benefits paperwork. Early on, he inquired how he might get back to school and was scoffed at by more than one of these counselors because they were of the limited opinion, and I quote, “What on Earth could you possibly do?” Professionals were these people; professional counselors, adults, who advised him at the age of 18 that there was nothing productive he could possibly do with the rest of his life. Good sessions.
Once he returned home, like any human, he needed to fill his time with something meaningful. We will call his first year at home his sophomore year at Life University as he now had to figure out how he was going to fill–his life, what was next. I have described how he enjoyed the hell out of music; of course, there was the easy thing to do, watch T.V. in the afternoon, then the news, followed by regular evening programming. All these things can fill one’s time, but how should I be filling my life? Dave was internally exploring yet unknown answers to this philosophical question.
My parents started their freshman year at Caring for Dave University 1975 as they had to figure out how to provide for his every need. All of Dave’s personal care was very physical work; if that wasn’t already obvious, I mean, he weighed in the 220-230 range.
Every morning started for my mom at 5:30 with this routine; She would wake Dave up to let him know she was going to have her coffee and toast breakfast, then return to brush his teeth and start his sponge bath in his bed. By that time, approximately 30 minutes later, my dad joined her, and they changed the sheet with him in the bed.
This was accomplished by my mom and dad standing facing each other with the bed and Dave in between them, rolling Dave on his side first toward my mom. My dad would untuck the day-old, now damp sheet from their formerly tucked state under the mattress on his side, roll it up and push it just under Dave still balanced with my mom’s help on his side. A new sheet was then tucked under the mattress, rolled up behind Dave, and the now untucked rolled up old sheet also under him. They then rolled Dave over on his other side, so he was facing my dad. The damp day-old rolled up sheet was pulled out from under Dave, and untucked on that side of the bed and tossed on the ground. The new sheet was unrolled by my mom, tucked in and smoothed over. Baby powder was applied everywhere to either dry off any places that my mom may have missed with the towel when she dried him off after his bath or to keep him dry, which was the true secret to preventing bedsores, controlling moisture. Lastly, they either repositioned him in bed, tied his legs down with fabric straps, and raised the head of his bed or put leg and arm braces on him, dressed and placed him in his wheelchair, to get ready to face the day.
After that rigamarole, my dad headed to work around 7:30. My mom fed Dave breakfast, then started her day-job of taking care of everything else in the house for a family of SEVEN, the laundry alone with daily linen changes for Dave, Oh-My-God, and in between the everything else plus laundry, intermittently, Dave needed her for; scratching itches; yes, he was paralyzed, but he had sensation from a little above mid-chest high, including his shoulders that was pretty close to normal. Let me stop here for a moment and just talk about how many times on average we touch our face a day; the average is 16 times an hour, which, if we sleep for eight hours a day, means we are touching our face roughly 256 times a day. Imagine never touching or being able to scratch your face again, just for starters.
Besides the obvious tasks of feeding him breakfast, lunch, and dinner, he needed everything else at some point in his entire lifetime that could include: changing the channel on the T.V. because remotes didn’t exist for another few years at least, scratching another of the 256 potential slight itches one might have in a day, washing his face if his eyes began to burn from seasonal allergies, slaking his thirst, giving him a stick of gum, digging out the crumbs he could feel that had worked their way under his shoulder from the toast he ate lying in bed for breakfast, taking his wad of chewed tasteless gum from him and tossing it out, putting on a record, approximately thirty minutes later–changing the record when it had run its course, or if one of his spasms caused him to need repositioning, she would physically shift him by herself. There are many other things a human being needs in an entire lifetime that I cannot think of off the top of my head right now, but she was the primary response parent during the day who addressed all of those forgotten needs too.
They washed his hair on set days of the week. The process was referred to by the technical name of putting Dave in the shower, but it wasn’t a true shower. There was water, yes, it was complicated, but they figured out a system during their freshman year at C. D. U. The rest of us just take off our clothes and turn the water on. Dave had a special type of gurney called a tilt-board that besides being able to almost stand Dave up while being strapped to it, it was also designed with industrial-grade pleather or some such material that could get wet. Our parents figured out with the use of the tilt-board, how to maneuver him around their 1930’s vintage Spanish style home between his room and the bathroom.
By way of a hand-crank, the tilt-board gurney would elevate Dave to roughly a standing position. This was necessary not for medical reasons but for negotiating the space. By shifting Dave from lying down to standing, it made it possible to make a 90-degree turn in the tight space of the back hall outside Dave’s bedroom into the bathroom. After they completed that turn, they hand-cranked Dave back to a lying down position and rolled the gurney into the long narrow bathroom. My mom was at the front end of the gurney, got in the tub the point where bathroom terminated, her mom jeans rolled up to her knees, and with the use of a removable showerhead, lathered his head. She scrubbed it vigorously because he loved that sensation on the small acreage of his body that could physically feel things, rinsed, and repeat.
If Dave spent the day inside the house, in bed, besides listening to music in the early part of the day, he might help my mom solve the T.V. Guide crossword puzzle when she sat down for maybe 20 minutes while she ate lunch in his room. He knew all the stars and weird random trivia, so he was good at answering the eight across, who shot J.R.? type of questions.
He had a mechanical reading machine that was stored on a narrow table with wheels, just like those used in a hospital for meals. It was basically an upright metal easel that books could be strapped to. A mechanical arm was activated to turn the page by hitting a lever that Dave could reach with his mouth. The arm made its way from the right side of the easel in an arc in front of Dave’s face over to the left side, where a slightly sticky type of gum on the arm would stick to the page. The arm retraced its arc back to its original position taking the page with it, turning it. Dave had to use a stick that he held in his mouth to help finish the page turn sometimes or make sure only one page at a time was turned. He used this machine to enjoy “reading” his subscription to Playboy magazine from cover-to-cover; apparently, that publication has really good articles.
If he were up in his wheelchair, what I jokingly called out of my mom’s presence, his electric chair, he headed for outdoors as soon as possible. I have mentioned that he enjoyed sitting in the sun or just watching the world right outside our house, warmly greeting passersby. When everyone in our nuclear family and his friends were at work or school during the day, he would keep my mom company as she worked in the front or back yard, weeding, pruning, watering, raking something, it was a big yard and required attention somewhere pretty regularly.
I am going to assume that everyone generally understands that he was fed regardless of where he was on the planet. Whomever he was spending time with, that someone made sure that guy was fed. Someone was always thinking about whether or not he might want or need anything. For example, if you opened the cookie cupboard in our kitchen, you automatically shouted the question to Dave a few rooms away, “YOU WANT A COOKIE?” His response might be either a “YES” or “WHAT KIND ARE THEY?” Often, we, ok, me, I might respond with something smartass, “THE SAME KIND AS YESTERDAY, YOU WANT ONE?” If you didn’t ask him, he would ask you, because he had overcompensating sonic hearing anyway and could hear the wrapper crinkle from 20,000 leagues under the sea, “WHAT ARE YOU HAVING?” God damn, that guy has good hearing, and there are only two cookies left. You learned to be on the front end of that and just plan on sharing, one cookie each, half a fucking cookie. Who is not going to split whatever is left with the paralyzed guy? So that was just an example of me and our cookie cupboard, but when he was out with at his friend’s, they fed him too.
If Dave had spent the day up in his electric chair, my parents usually put him back to bed before they ate dinner. Again, my dad lifted Dave’s dead-ass weight of 220-230 pounds in and out of his bed for more than 30 years, well into his seventh decade of life. My dad, too, was a bit of a badass for this and plenty of other reasons already mentioned. One day in the life of Dave was a great deal of physical work for our parents, and they lovingly developed a process for everything like a well-oiled machine.
At the end of any day, after the 11 o’clock news, because Dave HAD to see the sports results that were featured at the end of the local news with highlights and results of games that were not otherwise broadcast anywhere at that time, my mom or dad got him ready for bed. Often it was my dad who carried out the getting ready for bed duties. He, too, loved watching the sports highlights, and I would laugh if he or they got sucked into the segment, and he stopped brushing Dave’s teeth to watch. I watched them watch the sportscast and laughed as they both shouted with any particularly spectacular highlight, my dad with the toothbrush in his hand, near dripping, Dave with a mouth full of foamy toothpaste. After the brushing, he flossed his teeth, washed his face, lowered the head section of his electric bed, and turned everything off. My parents headed to bed around 11:45 every night. That is a long fucking day of exercise and caring for people.
My dad was very creative designing and rigging tools for Dave’s comfort or helping automate his life. Through time and experience, seeing what Dave needed, what technology was available, our dad graduated to an accelerated master’s level degree of creativity from C. D. U. with these devices. The first thing he designed was a self-service water delivery device, also known as a straw. But this straw was a surgical-grade tube that dropped off the left side of his bed to a gallon thermos below. This device served at least the “I am thirsty, may I please have some water?” needs.
He created a kill switch to turn off the lights or tv that Dave possibly could bump with his hand. In theory, this would have allowed Dave to remain up later than our parents. It turns out the switch was not that easy for Dave to bump; with his uncontrolled muscle spasms, usually, he ended up having to wake my dad to come downstairs to turn everything off anyway. So, that switch was retired from employment not long after its debut for those technical reasons.
He created a command center that hung off one of the perpendicular trapeze bars above Dave’s head on his left side of his hospital bed. This first iteration allowed Dave to make calls on his own. I call it a command center, which sounds pretty rad; we didn’t have a name for it at the time; but it was just a board—a board with a phone strapped to it. The phone was a flat rectangular office style push-button phone, a very modern upgrade from the rotary dial phones we had in the rest of the house. There was a bar that ran overhead the length of the bed that this trapeze bar attached to perpendicularly, which the command center (board) was attached to.
My dad found an operator style headset for Dave way before they were easily available to the public. I joked that it was his pilot’s headset, it was basically the same type of thing, but piloting would have been way more adventurous to Dave. The command center set-up made it so much easier for him to make calls comfortably. He had a thin dowel that hung from above his head that he could tuck away into the command center and reach with his mouth when he wanted to make a call by pushing the buttons with it. The only assistance he needed was to put the headset on or take it off when he was done.
For those who have never lived in a time before Amazon, all these components that my dad used had to be procured through sophisticated and painstaking deep dives into a phone book, cold calls of inquisition, trips to the library, driving around searching for stuff and talking to people at hardware stores, radio shack, the phone company for example. Finding surgical grade tubing so Dave could drink water out of it without a bad taste or mold growing inside was not something found on a shelf at a medical supply store. Everything demanded way out of the box, what if? type of reconnaissance intelligence, and a DEFCON1 level for procuring oddball things that also required a high level of charm and passion for getting people to see and step outside the box with him to help him, help his son.
Before my dad’s M.A. at Caring for Dave Uni in the research and development department or the availability of this new headset, Dave had no privacy during phone calls. He couldn’t really enjoy very long conversations because it was hard for the holder of the receiver to hold it completely still with one’s arm stretched out for longer periods. Everyone in our family helped him make hundreds of calls in the earlier years. As my arm grew cold and tired, the earpiece would slide off his ear just slightly; he would gently bonk his head against it to get my attention because I tried not to stare at him as he spoke to give him some, I don’t know, privacy, I mean, I was almost right in his face. He got my attention, by conveying through body language head-bonking that the phone had slipped off his ear. I would adjust it back in place, but this cycle repeated every ten minutes or so.
I’m not going to lie; sometimes, I ran out of patience during longer conversations. After a couple of slips and resets, my arm would eventually start to fall asleep; the receiver would slip, I would switch arms. When that arm fell asleep, I would glare flatly at him and be jiggling my leg similar to that of the urgency of holding an overfull bladder with a wrap it up dude; I’m dyin’ over here vibe. I was a nine-year-old with the limits of the patience of…a nine-year-old, so don’t be too judgy, it was slightly harder than you may think, plus I was a wussy nine-year-old!
Everything my dad created for Dave grew from the experience of trial and error, witnessing what needs could be addressed and how. Necessity was high, and in our house, our dad was the mother of invention. His creative juices ran wild in our house without end. He was always improving on those early designs and trying new ideas. The phone set-up was a huge start on that path. Later the command center held remote controls. The first arrived with the new technology and format delivery of the Cable box. With it came HBO, later Showtime and Cinemax into Dave’s life. Later still, remotes were available for his stereo components as he replaced older models with newer. When he obtained a cellphone in the mid-90s, thankfully, when those were widely available, that was attached to the command center with Velcro and moved between there and a mini command center on his wheelchair. That mini consisted of only his cell phone next to the mouth controller that was part of the wheelchair already. The final iteration of the big command center allowed him to control his landline, cell phone, the lights in his room, ceiling fan, the T.V., and his access to music with both radio and CD player at the ready for instant music at the push of a button.
I mentioned HBO or cable was a huge improvement in programming options around 1976 for Dave among the lineup of shows available for him to watch. This augmented the catalog a bit, but you can only watch so much T.V., and in those early days, programming was a bit limited with shows repeating over and over.
Dave was inspired by Joni Eareckson Tada, a quadriplegic woman who wrote her autobiography Joni about her life after her paralyzing injury by diving into a pool. Among her passions that she was known for was painting by mouth. Dave decided to take up drawing with his mouth too.
He used my dad’s pastel and charcoal pencils that my dad adapted for him with a special holder that covered the back end of the pencils so Dave wouldn’t have the unpleasant taste of the wood or whatever flavor the colored portion of the pencil was made from, in his mouth—he learned pencils taste horrible the hard way. He didn’t otherwise take any drawing lessons. His reading machine was stored on top of a narrow adjustable table, on wheels, the type that people eat from when staying in a hospital. Just like Playboys, I mean his books, his paper canvas was held in place on the metal easel and placed in front of him where he could reach it with the tip of the pencils to draw. We could hand crank the table to whatever height he needed.
He would patiently work for hours recreating images from a photograph taped next to his project. He mainly created landscapes. I would spend an afternoon on his couch reading, change the records when needed, and swap out pencils or sharpen them for him as needed while he worked at scratching out an image. He created some beautiful works from the very first attempts forward. Strange fact, he joked that he couldn’t draw so much as a stick figure with his hand before being paralyzed but could somehow draw things accurately as he saw them in the world with a pencil in his mouth.
Dave was the present adult who had nothing but time and attention to give me. I, we unquestionably, had lovely parents. Still, they were doggedly focused and invisibly exhausted doing what they had to do to keep the Earth turning for us without interruption of service. There simply wasn’t time for luxuriantly playing games on the tight schedule of things they accomplished in a day. They weren’t opposed to games; they were very pro-game people; they just had too much to do.
I hadn’t connected the dots of how available Dave always was to play with me until I was writing this book. It was such a natural part of my life in our house; once Dave came home from the hospital, I had someone to play with. I would come home from school, after pounding on the piano for my designated practice hour, I would then gravitate toward the sun of our house, Dave’s room for recovery from practicing the piano for that torturous hour.
If he was watching something interesting, I might sit down and watch it with him. If it was a talk show, I might try to talk him into playing a game of any sort which he was always down for doing. We played lots of cards; gin rummy was standard; It is a challenge learning how to hold someone else’s cards and follow directions for how to organize and play them, with the back of the card facing you. “Play the third card from the right. NO, my right.” sometimes, we played chess, board games of Mastermind, and Battleship were favorites as well. He was an incredibly captive audience. He never said no, yet he, in hindsight, never initiated them either. I hadn’t realized how present he was until I became an adult and realized the significant difference between “present” and “not” with the balancing act in the life of being a parent. And I only had one child.
People, his friends still came to visit but the huge every weekend parties tapered off after the first three or four years after he was home. This shift in priorities is the natural order of maturation and to be expected among adults. Dave insisted on as much autonomy as possible and visited his friend at their houses on his own, so he was still very connected to his group of friends.
After a decade of days, weeks and months predictably unfurling like this, he was left wanting something more for his life; he knew something more was possible for him but not what. He met with his caseworker(s) at least annually every year since his injury. He raised the question of wanting to return to school every time, but this time in the mid-80s, when the caseworker headed down that broken record dead-end path of, “What could you possibly do?” Dave had developed half an answer via his data collection burning time watching daytime television and the rest of the world from the sidelines on Arrowhead Avenue, “I don’t know, but I would like to try to find out by going to school.” He was as before, consistently denied any help making this request happen.
Brian talked about how Dave would hang out with him at his house, engage with his boys with rides up and down the street. After a bit, he would drive to Bruce’s house a few blocks away and hang out there for an hour or so then head back to Brian’s. Brian remembers Dave reaching a point, telling him that he didn’t just want to hang out forever; he really wanted to do something and knew an education was the way to figure out what more he could do with his life.
He was single-minded when it came to accomplishing a goal. He was very meticulous with the details of planning what to do first, second, third, the checklist on the path of completing a thing. No agency was helping him, but no one was stopping him from attending school either, and he decided to figure out how to do so without the help of the State of California.
© Mardi Linane Copyright 2020