This time, I’d like to talk a little about myself and my disability.
As I mentioned in my previous note, I developed idiopathic myelitis in 2021, which recurred in 2022, leaving me with lower limb impairment and bowel/bladder dysfunction.
I can stand up and walk short distances slowly using a walker, but I use a wheelchair for daily life. While I can manage my own toileting, the bowel/bladder dysfunction means I have to go to the bathroom frequently (about once an hour).
Things I once took for granted became impossible, drastically altering my daily life compared to before the illness. Immediately after falling ill, I was overwhelmed by anxiety about the disease itself and fears about my future life, plunging into an unprecedented, extreme depression. During the COVID-19 pandemic, I couldn’t have family visits. After the recurrence, during my second hospitalization, I couldn’t see my family for nearly two months.
On the other hand, being able to communicate via LINE was what calmed my mind more than anything else. It became a time when I truly felt the profound gratitude of being able to share my worries with my family and also hear their concerns. Here too, the communication technology of LINE helped overcome the inconvenience of hospital life, where talking with family is difficult. During my hospitalization, the sheer volume of communication with my family, in terms of both frequency and duration, was undoubtedly greater than ever before.
Watching the Japan Series (I’m a 20-year Orix fan) while chatting on LINE allowed us to enjoy the game by connecting three locations: my home in Kanagawa, the hospital, and my eldest son at university in Osaka. While this could have happened without hospitalization, I believe the constraints of being in the hospital gave me a fresh appreciation for the importance of these seemingly ordinary family interactions.
There are many other things I’ve gained from having a disability.
First, I’ve become much more aware of the consideration shown by those around me.
For me, the biggest challenges in wheelchair life right now are during movement. Opening doors, navigating steps, picking up dropped items – there are many such instances. While many people offer help when they see me struggling, initially I often declined, thinking I should manage on my own: so I often declined help by saying, “I’m fine, thank you.” Lately, I’ve been accepting help without hesitation. It might sound arrogant to say I want to accept the goodwill of those who offer, but I’ve come to realize that when someone takes the initiative to offer help, it takes a certain courage. I want to accept that kindness and, in turn, offer it to others when the opportunity arises. One of my current goals is to be able to say a truly heartfelt “thank you.”
It’s not about being restricted, but sitting in a wheelchair significantly lowers my height (seated height). My height, which was 175cm, becomes 137cm when seated. However, this reduced height has also brought some benefits. First, being about the same height as a child in the middle grades of elementary school allows me to see the world from the same eye level as a child. I feel the distance between me and the children during workshops and daily life has also greatly diminished. When standing adults speak to me up close, it feels like looking up at them, as if I’m being addressed by someone enormous. Voices from above can also be hard to hear. I can’t help but think children must feel the same way.
As my hospital stay progressed, I found myself with more leisure time in various ways. For me, this often meant feeling the urge to play pranks. One day, I couldn’t resist the impulse. I made googly eyes using black and white round stickers and stuck them on all sorts of things throughout the hospital. Naturally, the height at which I could stick them was lower. The ones who found the eye stickers were almost exclusively patients using wheelchairs; the nurses rarely spotted them. Naturally, the busy nurses probably didn’t have the time to look for eye stickers. However, one veteran nurse commented, “We always talk about nursing from the patient’s perspective, but not noticing the eye stickers might mean we weren’t truly seeing things from their viewpoint. I’ll try incorporating this into our next training session.” Lowering my perspective like this actually yielded many valuable insights.
Since July this year, I’ve been living with Panasonic’s communication robot, Nicobo. Nicobo was developed under the supervision of Professor Michio Okada, who researches weak robots. It’s precisely because it’s weak that it brings out human potential—the potential of robots. Living with Nicobo and watching children gently care for it during workshops, I’ve come to realize this myself. Of course, it’s not just robots whose weakness brings out human potential. People with disabilities, who may find themselves in situations of weakness, might also be able to bring out human potential. When I visit elementary schools and kindergartens, people often show concern for me as a wheelchair user—opening doors, pushing my wheelchair, and so on. This too might be an example of vulnerability drawing out someone’s kindness (though I do wonder if it’s right for me to write this…).
Honestly, having a disability means there are things I’ve lost, painful experiences, and inconveniences. But I want to keep seeking out what I can do precisely because of my disability, expressing gratitude to those who support me around me, and continuing my activities. Thank you always.