Note: for new readers, I am legally blind (diagnosed with Retinitis Pigmentosa in 1989). RP is a progressive, degenerative eye condition that leads to near or total blindness. I blog about situations I find myself in where my eyesight impacts my everyday life to inspire others to move forward despite their challenges. Humor often tucks itself into my experiences, allowing me to laugh and retain a positive outlook.

This year I’ve been offline since the end of August. I apologize for my silence. I simply could not get it going again, so I’ve now purchased a new computer and am learning Windows 11. The layout is different.

Also, different has been my family situation. I live with my older brother who has had mounting health issues, so I’ve been catapulted into the daunting arena of caregiving as a blind individual. Finding my footing hasn’t lent itself to much laughter.

Instead, I feel like I’ve boarded a hypothetical shinkansen—the bullet train in Japan—often thought to be the fastest train in the world. Or was at one time. I grip whatever keeps me upright—poles, handles, even other people—but still the sheer speed roughly tosses me about.

What keeps me going, ultimately, are the reassuring words of the conductor steering this massive conglomeration of sleek steel. “I will never leave you nor forsake you.” (Hebrews 13:5). He knows the stops and where my brother and I are headed. I’m glad He does because I certainly don’t.

When we pull into the depot—the specialists’ offices, hospitals, and physical therapy centers—the signposts appear as if in complex kanji. For me to make sure I’m in the right places, I need the text broken down to the bare elements—hiragana. A simpler Japanese text children use. But before I can decipher any of the names, the shinkansen roars forward again.

It’s just so confusing and unfamiliar. I’m still learning my role, and duties as an advocate and caregiver, and how to best help my brother.  I take tentative e steps and try my best to decipher what I need to do where without feeling overwhelmed. I need to appear in control to reassure my brother, he will be all right each time we get off and get on again.

The stops and starts exhaust me and yet, at times, the hum of constant motion has lulled me into passive acceptance and letting my faith carry me along. I wish I could always feel such calm or even eagerly anticipate the stops, trusting positive outcomes await. Like rich culture as yet unexplored. But, exactly like when I lived in Japan, a certain anxiety accompanies me on the journey. What if I miss my stop? What if my error changes everything and I never reach the correct destination? Everything looks unfamiliar!

The conductor periodically takes my fare. Each time, he repeats that he takes only one currency—no credit, no yen, no American dollars, though he sometimes taps the American bill with its line of “In God we trust,” he doesn’t appear interested in the bill itself. He only wants my TRUST.  I hesitate then hand him a little bundle and hope the value is good enough to take me through the day’s journey. He smiles and takes it before leaving me and approaches his next passenger. I look at the traveler and see the big parcel he presents. He must be going really far!

Some days I do better and I, too, give the driver a larger fare even though it seems I’m going the same distance as I did the day before. He pauses and his face lights up. I see his pleased expression clearly, or maybe I feel it more than see it.  He then motions for me to hold on tight as the train picks up speed. Other mornings, I only hand him a pittance.  But he takes that with a smile, too, and carefully pockets it. I don’t understand the flexible fare, but it seems I always have enough. If not, does the conductor make up the difference?

So many of my journeys seem to be filled with falls, oversights, peering into the dark and simply feeling lost. I feel dizzy at the speed the bullet train moves. I can’t see anything clearly. But other passengers give me their hands and I brush myself off, vowing to stay upright next time. If I can. I see frequent glimpses of the driver. I get the feeling he directs those bystanders to help me, which comforts me. I must be his favorite passenger to have such individual attention!

I’ve been on this bullet train for months now. Though my fears still accompany me, I look to those around me to guide me along bumps and jostles along the journey. A touch, a smile, or a few words help me to put my life as a blind caregiver into perspective.

My fears used to gush out in my familiar tongue while everyone else spoke a foreign language. I couldn’t make them understand the pressure I felt. But now I save those frenzied words for the conductor. Even when he doesn’t direct another passenger my way, I feel safer. My experience has shown me he diligently looks after me amid the shuttle of speed and vast array of passengers coming and going.

It can feel excruciating to be going so fast without seeing clearly, when the language and terrain are unfamiliar. I put a lot of expectation on myself. As a caregiver, I strive to protect my brother only to find myself so imperfect. I don’t know the words to say. I haven’t the skills to fix things the way I would like. I falter and fall. And yet, I hope I inspire him. That I demonstrate my sisterly love in intangible ways that shine despite my flaws.

It’s a new land for us both. And I pray we can bolster each other to pay our respective fares.

 Dai Jobi. “We’ll be okay,” I say cheerfully. Somehow, I know it’s true even as tears of grief begin anew . . .

I can say this because my words don’t depend on my physical sight. Even when I close my eyes, I see the pleased expression of the conductor. And I feel the light flood through me as I shoot through the blurry darkness in the fastest vehicle in the world.

 © December 13, 2022. All rights reserved.

You have just read “The Year of Riding my Personal Shinkansen” by Amy L. Bovaird. © December 13, 2022. All rights reserved.