Spring 2019
Upon returning home from Mexico, and despite my reservations with his approach, I continued with Dr. Joe’s meditations. Most days I sat for three or four hours, squeezing as much wishful enthusiasm for life as my deeply conflicted heart could muster. Nonetheless as the weeks wore on I felt myself getting weaker, which meant some inner whispers were getting louder which I really, really wished to ignore.
So it takes me ten minutes to shuffle between the bedroom and the living room with my walker? Big deal, at least I can walk. So my manual wheelchair is uncomfortable and rickety and requires someone to push me around? It’s lowkey and fits the need in a pinch. But as my knees began buckling every time I tried to stand, and the slightest surprise could cause a deep wobble in my balance and threaten a nosedive, I begrudgingly admitted to myself that I needed more help. Meaning, I would soon need an electric wheelchair, aka powerchair.
Like with most tools meant to support a disabled body, I resisted caving to it for as long as possible. But of all the potential aids to help me—braces, walkers, gripping tools, speech devices, shower chairs, manual wheelchairs—the powerchair seemed by far the most vile. Built to support the weakened neck as seen in neuromuscular conditions, they are bulky, expensive, and—to that part of me still under sway of ableist prejudice—decidedly ugly. On the websites advertising them I found photos of young, attractive, ostensibly disabled people sitting in various models while enjoying exciting disabled-people activities, such as sitting, flashing excited smiles for no apparent reason. The text highlighted the freedom they provide their users.
My various healthcare providers would talk them up, too, and encouraged me to move forward in ordering one so I could start enjoying it. I suspected “enjoy” was just polite code for the mobility I would gain courtesy of the hand-operated joystick, allowing me to safely navigate wheelchair accessible spaces. But the thought of one signaled to me the opposite of delighted freedom—more like defining submission. Not to mention this kind of tool tends to frighten strangers, who suddenly turn awkward when beholding someone operating heavy machinery to move their body around. Through submitting to one, I would turn into the “trapped” man I first saw in the neurology waiting room of the University Hospital. The man who I didn’t want to make eye contact with. The man who I had been terrified to someday become.
By this stage I knew that I needed to advance toward each milestone of my ever-changing physical reality slowly, lest I invite a freshly debilitating round of grief and crankiness. So I set up for the ALS Association to deliver a temporary loaner with the intent for it to sit in our living room for days so I could get used to looking at it. On the morning that the technician delivered the 250-pound beast, I tried to just soften my gaze around it, not asking many questions, trying to keep an eye toward distractions like lunch approaching and emails to send. My caregiver signed the loaner paperwork and waved him away for me, leaving us alone with the new monster. There it would sit for the next few days, lurking menacingly against our living room wall, waiting for me to work up the nerve to dare to sit in it. I swore I heard it growl once or twice.
But our cat saw nothing monstrous about the new addition to our family. Once the technician left, Anu spent a few minutes sniffing all the unfamiliar crevices and features, as if he was a discriminating buyer inspecting a big potential purchase. Soon satisfied with whatever mystery his little nose sorted out, he then hopped onto the seat, circled around once or twice to arrange his body, plopped down with an air of relaxed contentment, and sighed. He slowly batted his tail over the armrest, blinking pointedly at me, glancing out the nearest window, yawning, threatening an imminent nap. I’d soon admit he had found his new preferred perch in our home, and stayed there as much as possible during the coming days, occasionally rolling onto his back to expose his velvety belly, throw a wayward paw into the air, and purr. King Anupalaya, administering from a fancy throne worth 15 thousand dollars—how fitting. My little protector.
Eventually, I caught on to his teaching—or at least what my humor entertained as his teaching. His attitude suggested my revulsion to the chair might not be required. Of course, all the strong emotions I brought to it were understandable because I’m invested in the details of my life. He’s an admittedly spoiled and strong-limbed cat just taking a nap, which is a temporary reprieve between begging loudly for more kitty-crack treats and galloping throughout the house, triumphant after a good poo. And yet, if I chose to entertain the possibility of a message, like how when you relax your mind enough you can make any tarot reading feel true, he seemed to suggest I had more choice in how I received the new tool than I thought. I could practice viewing it as a comfy, practical place to sit; a place which made it easy to look out the window, relax, philosophize, like Anu—or, even go outside and get around. I could learn to reject the narrative that says using a wheelchair somehow makes one less-than or pitiable compared to non-wheelchair users. Rather than being “trapped by” or “confined to,” I could view it as my own throne that helps me live a full, active life, for as long as possible. Yet another reminder that I could deepen my own suffering by steadily focusing on the wrongness of a situation, instead of an earthy practicality: life was providing me a new viewpoint, from a thickly padded seat no less. Meaning-making was flexible, and resistance was optional.
***
Upon returning home from Mexico, and despite my reservations with his approach, I continued with Dr. Joe’s meditations. Most days I sat for three or four hours, squeezing as much wishful enthusiasm for life as my deeply conflicted heart could muster. Nonetheless as the weeks wore on I felt myself getting weaker, which meant some inner whispers were getting louder which I really, really wished to ignore.
So it takes me ten minutes to shuffle between the bedroom and the living room with my walker? Big deal, at least I can walk. So my manual wheelchair is uncomfortable and rickety and requires someone to push me around? It’s lowkey and fits the need in a pinch. But as my knees began buckling every time I tried to stand, and the slightest surprise could cause a deep wobble in my balance and threaten a nosedive, I begrudgingly admitted to myself that I needed more help. Meaning, I would soon need an electric wheelchair, aka powerchair.
Like with most tools meant to support a disabled body, I resisted caving to it for as long as possible. But of all the potential aids to help me—braces, walkers, gripping tools, speech devices, shower chairs, manual wheelchairs—the powerchair seemed by far the most vile. Built to support the weakened neck as seen in neuromuscular conditions, they are bulky, expensive, and—to that part of me still under sway of ableist prejudice—decidedly ugly. On the websites advertising them I found photos of young, attractive, ostensibly disabled people sitting in various models while enjoying exciting disabled-people activities, such as sitting, flashing excited smiles for no apparent reason. The text highlighted the freedom they provide their users.
My various healthcare providers would talk them up, too, and encouraged me to move forward in ordering one so I could start enjoying it. I suspected “enjoy” was just polite code for the mobility I would gain courtesy of the hand-operated joystick, allowing me to safely navigate wheelchair accessible spaces. But the thought of one signaled to me the opposite of delighted freedom—more like defining submission. Not to mention this kind of tool tends to frighten strangers, who suddenly turn awkward when beholding someone operating heavy machinery to move their body around. Through submitting to one, I would turn into the “trapped” man I first saw in the neurology waiting room of the University Hospital. The man who I didn’t want to make eye contact with. The man who I had been terrified to someday become.
By this stage I knew that I needed to advance toward each milestone of my ever-changing physical reality slowly, lest I invite a freshly debilitating round of grief and crankiness. So I set up for the ALS Association to deliver a temporary loaner with the intent for it to sit in our living room for days so I could get used to looking at it. On the morning that the technician delivered the 250-pound beast, I tried to just soften my gaze around it, not asking many questions, trying to keep an eye toward distractions like lunch approaching and emails to send. My caregiver signed the loaner paperwork and waved him away for me, leaving us alone with the new monster. There it would sit for the next few days, lurking menacingly against our living room wall, waiting for me to work up the nerve to dare to sit in it. I swore I heard it growl once or twice.
But our cat saw nothing monstrous about the new addition to our family. Once the technician left, Anu spent a few minutes sniffing all the unfamiliar crevices and features, as if he was a discriminating buyer inspecting a big potential purchase. Soon satisfied with whatever mystery his little nose sorted out, he then hopped onto the seat, circled around once or twice to arrange his body, plopped down with an air of relaxed contentment, and sighed. He slowly batted his tail over the armrest, blinking pointedly at me, glancing out the nearest window, yawning, threatening an imminent nap. I’d soon admit he had found his new preferred perch in our home, and stayed there as much as possible during the coming days, occasionally rolling onto his back to expose his velvety belly, throw a wayward paw into the air, and purr. King Anupalaya, administering from a fancy throne worth 15 thousand dollars—how fitting. My little protector.
Eventually, I caught on to his teaching—or at least what my humor entertained as his teaching. His attitude suggested my revulsion to the chair might not be required. Of course, all the strong emotions I brought to it were understandable because I’m invested in the details of my life. He’s an admittedly spoiled and strong-limbed cat just taking a nap, which is a temporary reprieve between begging loudly for more kitty-crack treats and galloping throughout the house, triumphant after a good poo. And yet, if I chose to entertain the possibility of a message, like how when you relax your mind enough you can make any tarot reading feel true, he seemed to suggest I had more choice in how I received the new tool than I thought. I could practice viewing it as a comfy, practical place to sit; a place which made it easy to look out the window, relax, philosophize, like Anu—or, even go outside and get around. I could learn to reject the narrative that says using a wheelchair somehow makes one less-than or pitiable compared to non-wheelchair users. Rather than being “trapped by” or “confined to,” I could view it as my own throne that helps me live a full, active life, for as long as possible. Yet another reminder that I could deepen my own suffering by steadily focusing on the wrongness of a situation, instead of an earthy practicality: life was providing me a new viewpoint, from a thickly padded seat no less. Meaning-making was flexible, and resistance was optional.
***
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