Sit Down and Ride

There’s nothing left on earth that’s more evocative of my dad than his wheelchair. I always had a complicated relationship with my dad, and now I have a complicated relationship with that chair. 

He spent years fine tuning it to his needs. The cushion on a stalk that supported the back of his head was raised and tilted. The angle between the seat back and the flat part of the seat was increased until he didn’t feel like he’d tumble forward out of the chair, but not so far that he felt like he’d tumble backward out of the world. The armrest that held the joystick and control panel was positioned at just the right height so that when he reached out, his stiffened hands touched the controls, and he could move himself through the first floor of the house. He went through several seat cushions and experiments in foam toppers before he found the one least likely to give him sores from sitting all day and all night in the chair.

He sat in that chair upwards of 23 hours a day. When he watched TV, he could make small adjustments using the chair’s motor to compensate for the fact that he couldn’t turn his head more than a few degrees. It enabled him to cruise into the next room and bump up into his desk, which rested on risers to make space for his legs, and reach out for the computer mouse. He could slowly and arduously manipulate the mouse and keyboard to read emails, shop on Amazon, and talk with old friends on Facetime. 

He chose to sleep in the chair. The whole chair rotated, so that he maintained his well calibrated posture but ended up facing the ceiling, like an astronaut before takeoff. Someone would then tuck pillows around his head and under his arms and lay a blanket over him. In a bed, he couldn’t move; his own weight pinned him down. A bed was a perfectly tailored prison. In the chair, though, at least he had the hope of working its motors and controls to escape the discomfort when he woke in the middle of a dark night. 

That rotation feature also came in handy during the day. Most of us don’t think anything of scooching back in a chair, but my dad had lost the ability to scooch. He would slowly slip down the seat until he was slouching with his backside too far from the back of the chair. This would lead to agony if not corrected. You don’t realize how valuable scooching is until you lose it. Then he would rotate toward the ceiling, and someone would grab him through the armpits and heave until his back was flat on the seatback again. Usually his caregivers did this, but I stepped in a few times. I was always hesitant to touch his flesh, afraid it might be too weak to stand my pulling but finding it disturbingly solid and meaty. Being a scooch tech turned out to be harder than it looked. It was hard to budge his dead weight. It was hard to keep him from tilting as you pulled. The caregivers made it look easy, but they were practiced and skilled. I was not used to touching my dad in this way—so close, holding onto him with so much of my strength, while each of us looked at a distant point, so we could pretend our faces weren’t only inches apart.

I was at my parents’ house a lot in the last couple years, and I saw him in that chair hundreds of times. He usually wore large t-shirts that draped over his abdomen and onto his thighs. Someone laundered them and changed them for him when he spilled his meals down them, so he was always clean and neat. His black and silver hair was brushed back from his brow, usually long enough to have a fringe at the back of his neck. If he was happy, he sat a little straighter in his chair. If he was in pain or ill or just weighed down by all the undeniables, he would sink just a hair lower in the chair. But even when I was there, I always felt half a step away. His caregivers—first Tomas, then Blossom and Tori—rubbed lotion on his hands, wiped his nose when he needed it, and took him into the bathroom where they would help him relieve himself and clean him up afterward. They tended his sores and deposited medications under his tongue. My mother also touched him. She was the only one who could wrap the pressure bandages around his legs in just the right way to prevent his lymphedema from getting worse. I didn’t participate in this hands-on care. It was too much closeness, and he didn’t want me to, either. There were things about him he didn’t ever want me to see. So I watched, and I didn’t participate.

I did like fiddling with the chair, though. If he was having trouble with his hands one day, I could help him steer it by walking alongside and pushing the joystick. I could make sure the speed setting was right or help rotate it. When he came to the dinner table, I was eager to fold back the stalk holding the control panel to get him as close as possible to his place. It was a way I felt I could help, without either of us feeling like it was too much.

Often when I came over in the last months, he would be watching TV. How he would adjust to my arrival would tell me a lot about his mood and what our conversation might be like. Because of his limited muscular movement and his stiff neck, if I sat on the couch, the one available spot, and he left his chair facing the TV, he couldn’t see me. So if I came in and he didn’t turn his chair, then I knew he was in a bad state—human interaction was just one more reminder of affliction, and he’d rather be lost in the painless glow of the TV. If he turned half way toward me, then he felt the pull of connection with another person, but also the equal pull of despair, which he thought could only be endured alone and palliated with the TV. If he turned all the way toward me, then he likely was feeling relatively free of terror and eager to hear about the world that was continuing outside his small succession of rooms. At these times, I felt a little boy’s pleasure that his father cared about him.

Sometimes we talked about life and death. Sometimes we talked about family and love. Much more often we talked about basketball. I didn’t even watch basketball, but he did, and I’d spend two or three minutes a day looking at stats and scores so we could have a conversation. Did you see the Lakers won again? Did you know Harden had another triple-double? His own body was a wreck grounded on the shore, but he particularly appreciated the athletes who moved with grace as well as speed and precision, the ones who made the game seem like more than a contest for the highest score but also a hint at transcendence.

When I stop and think about it, it’s terribly sad. There he was telling me about everything he missed, everything he couldn’t have, everything that was behind him, and I thought we were talking about final scores and shooting percentages. I often felt like the talk about sports was a diversion from something real, but maybe I had missed the real intention in it. I thought I was trying to connect and he wouldn’t meet me, but maybe he thought the same thing.

A few years before, I had asked my dad to tell me some stories about his youth and life before I was born that I could record and preserve. I had the idea that this could help us have a meaningful conversation about his life because we wouldn’t admit it was really a conversation. It was instead this thing, this project, that we were working on. I would also not be the cowed child in front of him, but the interlocutor, and I imagined I could ask more freely why he did so many of the things he did and how it all felt to him. Because there was a lot that needed explanation. Despite his success as a businessman and a physician, despite the remarkable plenitude of anecdotes about meeting famous people, despite the charisma that helped him out of any number of scrapes, he’d been an alcoholic and a drug addict all his life. He’d made choices over and over that hurt those closest to him while remaining undetectable to those further away. As a result, I felt there were pits in my own life, gaps I didn’t understand in the story of my upbringing.

When I first suggested doing the interviews to him, he seemed awkward and reluctant. I think he heard the far off chiming of death in the unspoken premise that this would be something to preserve memory of him after he was gone. But we did sit down one time, and he went on at considerably more length than I had hoped about how he’d spent time with his cousins when they were all kids. After that, he decided he liked the idea of being interviewed and asked several times when we would continue the project. For some perverse reason, I could never find time after that, and we both stopped mentioning it after a few months. After he died, I looked for the recording and couldn’t find it.

That episode can probably stand as a pattern for all our efforts to talk. One of us makes a guarded offer to connect. The other responds in his peculiar way. We both retreat.

One more example occurs to me. Over the years of his serious decline, we had many long, painstaking, and generally circular conversations about technology. Usually it would start with something not working on his computer or sometimes with a program or device he’d heard about and wanted to try. We’d talk about possibilities. I’d set something up or suggest something. He’d try it, and it wouldn’t work the way he’d hoped. He’d go back to the few reliable things he’d known how to do already.

Although the conversation was about voice commands, or what internet radio was, or how to listen to podcasts about international affairs, I should have realized I was hearing the cry of a man slipping under the water who wants to stay in the world. I should have heard the fear of being at the end of a line with only the plunge into nothingness in front of you. I should have heard the fear of boredom, helplessness, incapacity, and a long, grinding degradation into death. But we were talking about how to set up a short cut key that he could reliably hit with his stiffened fingers.

Maybe I did hear all that but I chose to huddle in the small cave of the immediate and the practical. The winds of his demise and his suffering had been howling through that house for a long time, and it was natural to seek shelter. I know I wanted to help, and I latched onto these problems of WiFi networks and passwords and setup procedures and new apps as safe ways to show him that I wanted to ease his pain, that I wanted to offer him some balm. But maybe he never fully understood what I was trying to offer.

One Sunday, after a rough night when his neurological condition caused a high fever, he asked to be moved from his chair into the bed for the first time. Then we knew it was over. It was a hospital bed. It had been made with clean sheets and had been set up in a small bedroom. We hadn’t realized though what it really was. It seemed like the sensible thing to have for someone with severe disability and health problems. It had buttons to move the feet and head up and down. It had guardrails. But it was really the thing that would devour my dad, and it had been waiting for him in the disused room at the end of the hall.

He was dead five days later. But what happened there was the story of a bed and doesn’t belong here.

The story of the chair wasn’t over. 

A few days after he died, I came back to what was now my mom’s house to help with the cleaning up. I needed something from the back bedroom, and I walked through the TV room, where I’d so often found him. In the back corner, pushed out of the way, was his wheelchair. It was empty now, but the back was still at that particular, well-balanced angle that had been most comfortable for him. The head rest jutted out at just the angle he’d once held his head with the swept back black and silver hair.

I felt like I could see him as clearly as I’d ever seen him. He wasn’t there but I could sense him. That was the moment real grief hit me. I felt what was missing.

And a lot of what was missing had always been missing. The loss went back to the beginning. Absence and presence twined around each other, joined and impossible to pull apart. When he was with me, he’d always hidden half of himself. And when I spoke with him, I kept the best and most tender parts of myself safely covered. So we could be together and each absent.

And there he was in the chair just as much and as little as he’d always been.

I cried then in a way that bent my body over. Some iron dredging device hit the bottom of my heart and dragged over what was there, scattering and breaking things I couldn’t see and would never see now. I was glad I was alone and that, as long as no one saw, my sadness could disperse into the ocean of sadness visited by everyone who has passed over this planet and so disappear as if it had never been.

After death comes ritual, and for us that meant the ritual of the stuff. We had to dispose of all the apparatuses that had sustained my dad’s life as his body stiffened and refused the orders from his nervous system. Medications, creams, bandages, wraps, special shoes. Commodes, hospital trays, lifting devices, a large orange thing called a return that he used to hold onto to transfer out of his wheelchair. And then a mockery of Oedipus’s riddle—one-legged canes, four-legged walkers, heavy-duty walkers, manual wheelchair, scooter, and finally the big one, the motorized wheelchair.

Eventually, we found a place that would take the wheelchair and gave it to someone who needed it. We just had to get it to them, which meant taking it out of the TV room and loading it in the accessible van. I looked at the chair in its corner. Having now passed it several times, it no longer had the advantage of surprise to overcome my emotional defenses, and yet I still could see my father there in its angles and dimensions, and I felt the grief of having lost him and having never really known him. I thumbed the switch that turned it on. I unplugged it from its charger. And then I paused to think about how to move it. I could walk alongside the chair, steering it by pushing the joystick, as I had done several times with my dad. It would require hunching over and walking at the chair’s pace, like walking holding the hand of a toddler. It occurred to me that it would be much easier to just get in it and ride. And so I did. 

I wish I could say I saw things from my dad’s point of view, or that I inherited something from him by taking his place. But I felt no mystical connection. The chair was comfortable; I’m close enough to the same size he was. It was fun to drive it once after all those years, but not go-kart fun. I was completing a task.

My younger daughter saw me before I got to the van and wanted to ride. She ran alongside for a few strides and then jumped up in my lap. The chair easily carried us both. So, maybe, even if nothing mystical occurred, we are left with a metaphor: one generation carrying the next through our different, parallel, and unmeeting phases of life. And I can’t help but notice that this chair that to him was affliction and to me was duty, to her was amusement.

I held my daughter with my free arm so she could feel my closeness while I was still alive.