Chapter 1: The River

As I announced last September, I published a memoir, The Rivers of My Life, about my childhood as a blind person, and my faith journey. At the time, I was hoping to sell books, trying to resurrect my dream of writing for a living. But given the pandemic, and the busyness of school, I never ended up participating in any art crawls or bookstore events to market my book. Then, this summer, perhaps inspired by the increasing level of societal conversation about identity as it relates to race and gender, coupled with my own anxiety about life, I have found myself thinking a lot about my identity as a person with a disability. At this perfect moment, God led me to Shake the Dust, an incredible podcast published by KTF Press, a company that seeks to “leave colonized faith (White American Folk Religion) for the kingdom of God.” It just so happened that the first podcast episode I found was a conversation the hosts (one of whom is blind) had with Amy Kenny, a devout Christian, and a Shakespeare scholar who happens to have a rare neurological condition which makes it painful, and sometimes impossible to walk. In 2021 she wrote a book called My Body is Not a Prayer Request which is part memoir, part Bible commentary, part history lesson, on how ablism is pervasive in society and the church and completely at odds with God’s way. After listening to this interview, I knew I had to read the book. It was not available on Bookshare, but I found it on Audible. I was so inspired by this book that I found the publisher’s website for this book and wrote the author a letter. I didn’t expect a response because like any commercially successful author, she probably receives a lot of letters. And at 1,130 words, I wouldn’t have been terribly surprised if the published deemed it too long to even read or pass on to the author. But to my delight, she responded a couple days later–I don’t think it was a generic form letter–thanking me for the positive feedback, and for sharing some of my personal story. I fully expected the book to convict the church for failing people with disabilities, just as it has historically failed people of color, and it did do this, in a thoughtful, compassionate way. What I didn’t expect was that the book would convict me. As I mention on the home page of this blog, I do not have life figured out. That takes an entire lifetime. Thus, this blog chroniles my meandering journey through life. A similar theme is expressed in my memoir, where I compare life to an ever-changing river. What this means is that attitudes about my faith as it relates to my disability, attitudes I have written about here with such conviction, were actually unhealthy attitudes influenced by a culture of ablism, attitudes which the author explains have seeped into our thinking without us even realizing it. These attitudes, I realize now, may have unwittingly contributed to my anxiety and lower self-esteem, and prevented me from fully appreciating and seizing upon the abundant life God wants for me here and now.

 

I am drafting an essay reflecting on this book, but before I publish it, I thought you readers deserved to read my full memoir to fully understand my history. I have always believed that people need to be open to considerations more important than money, and I believe God will provide opportunities in the future to simultaneously advance his kingdom and earn enough income to support myself. But for now, I am sensing that this memoir should be free, as it may encourage others, and understanding my history is important context for my reflections on Amy Kenny’s book.

 

I have also made this memoir available on Substack because this platform seems to be the trendy online platform for writers right now, and because they facilitate the creation of podcasts so that people who may not have time to read long-form writing like mine can listen to it. Part of the memoir I recorded using a text-to-speech app, as I was overwhelmed by the idea of reading it all in my own voice. But most of the memoir, I ended up recording myself, as I recognized that an artificial voice could not do justice to emotional dialogue scenes, or the emotional nature of some of my thoughts. So if you would like to listen to my memoir, it is available as a podcast here.

 

The River

    I think I heard The River, sung by Garth Brooks for the first time when I was in sixth grade. I always appreciated it for the beautiful sentiment that it is, and would stop whatever I was doing when it came on the radio to soak it in. But now as an adult, I have a much deeper, firsthand understanding of how true the sentiment of this song really is.

    Some people have concrete, well-defined dreams, like the toddler who is a tennis prodigy, but I think most of us don’t have such clearly defined dreams. Our abstract dream is simply to find a fulfilling life with financial security to meet our practical needs, and a meaningful career that meets our spiritual need for a sense of purpose. We may study an area of interest in college, but after that, we are left to the mercy of an ever-changing river influenced by currents of economic conditions, chance encounters or unexpected circumstances which inspire us, and sometimes force us, to pursue a path we never imagined. We make mistakes and try to learn from them. We let opportunities slip away. There is so much we have no control over, so we are really all vessels that must ride the current of life wherever it takes us. Rough waters are inevitable, but with the good lord as our captain, we can handle whatever comes our way.

    I feel compelled to reflect on the river currents that have shaped my life now because at the time I am writing this (August 2021), I have pretty much been in quarantine for a year and a half. It is the 2020 COVID-19 pandemic, an international crisis that has permanently altered the course of many people’s rivers in ways never imagined when 2020 began. I am one of these people. I don’t want to minimize the hardship this pandemic has caused. At the time I am writing this, over 600,000 families are grieving the loss of loved ones to COVID-19. Small business owners who put their hearts and souls into their businesses, had to close at a moment’s notice, and many will not have the means to come back. For over 400 years, Black Americans have had to endure adversity far greater than anything I have experienced as a blind person, adversity which this pandemic has exacerbated. But in my case, the pandemic is the current that inspired me to pursue an exciting new course, one which God had been whispering to me about for a long time, but one which I might never have been brave enough to pursue if not for the pandemic.

    In this collection of essays in the pages that follow, I will share the story of my life’s river so far. In Part 1, I will focus on how I navigated childhood and school as a blind person. In Part 2, I will focus on my faith journey. These two rivers of academic life and religious life were somewhat separate out of necessity, but are merging more and more as I progress through young adulthood. I have not always recognized that the good lord was trying to be my captain, and when I did recognize it, I wasn’t willing to give up control of my vessel at first. But now, I feel a wonderful sense of joy, hope and renewed purpose in my life. I recognize that even in this exciting new course, rough waters may come, and I recognize that in this ever-changing tumultuous world, the river’s course could change again. I suppose the only way to fully understand the river of one’s life is for a writer to wait until the end of his/her life to write a memoir like this. But I believe the adage is true that it is not the destination, but the journey that counts. I hope readers will find inspiration in reading about my journey so far, and that perhaps, it could change the course of someone else’s river for the better.

 

    May 13, 2012 is as perfect as a day can possibly be, the kind of day that when you step outside for the first time to let the dog out or get the newspaper, you sigh an “Ah!” of contentment. Instead of rushing back in to the house to cook your breakfast or start checking items off your to-do list for that day, you decide there’s time to stand there for a minute and just breathe deeply, letting the special freshness of the air unique to Spring permeate your lungs and regenerate your soul. Most of the bugs either have not woken from their winter slumber, or are too busy to think about getting right in your ear and startling you out of your reverie, so you can stand in total peace and serenity, just letting the warmth of the sun envelope you and the gentle breeze caress your face, and listen to nature’s amazing orchestra of birds and the sweet chime of distant church bells. There are church bells because May 13 is also a Sunday, which only accentuates the already beautiful day, as Sunday for our family is a day of church, family time and rest to celebrate a week of hard work. But this Sunday, the peace in my soul is due to more than the sabbath or the beauty of Spring, because this is the day my family and I celebrate not merely days of hard work, but years. It was commencement day at Carroll University.

    “You ready to go?” whispers a student volunteer, tapping my shoulder.

    When I used to daydream occasionally about what this moment would be like as a child, I imagined myself jumping out of my chair and running up to the stage, barely able to contain my joy. My child mind couldn’t imagine a greater joy than conquering college which grownups told me was “very hard” and then never having to go to school again if I chose. In reality, mixed in with the joy in ways I never expected is a sentimental feeling that compels me to savor the moment as an adult rather than rush for the prize like a child. Solemn and dignified, I stand up, adjust my dress and gown that sweat has caused to cling to my skin. Gilbert, my sweet guide dog, a yellow lab who will forever retain the innocence and exuberance of a child, follows suit as I used to imagine I would, jumping up, wagging his tail and wanting to run ahead. He is also wearing a cap and gown, courtesy of the bookstore staff who absolutely adored Gilbert! The bookstore received free samples of gowns from a vendor that were inappropriately short for a dignified graduation ceremony at a Christian university, but with just a little altering by the staff, one of these gowns ended up being a perfect fit for Gilbert. I grab Gilbert’s leash in my left hand, adjust his mortar board which has slipped sideways on his head and find the elbow of the student volunteer with my right hand.

    In most previous special milestones that involved walking down an aisle from first communion to high school graduation, I wanted and was encouraged by my teachers to walk up to the stage by myself to show I was just as capable as everyone else. But in my high school graduation, despite practicing the route with my long white cane several times after rehearsal three days earlier, there was an unplanned obstacle in the way that day that I wasn’t sure how to get around. In an uncharacteristic moment, Mrs. Hobson, the aid I had worked with for almost eight years and the most fierce advocate for my independence, ran onstage with tears in her eyes and guided me around the obstacle, so the awkward moment didn’t last long. But for this celebration, the culmination of the first leg of life’s journey, I wanted absolutely no unpleasant surprises, no awkward moments to tarnish this perfect day.

    The volunteer and I take our place in the alphabetical procession and as we inch our way toward the symbolic moment of transition from the first leg of life’s journey to the next, I find myself thinking back to freshmen orientation.

 

    “In four years, you will walk across the stage in commencement,” said a faculty member to us nervous freshmen seated on rows of plastic chairs set up in the airy, carpeted ballroom on the second floor of the student union where I would return for a career fair, a banquet and many convocation events in the next four years. “Commencement seems like a long way off now, but trust me. These four years will go fast,” she continued, “so I urge you to make the most of them. Get involved on campus, take advantage of the academic opportunities we offer, study abroad. The memories you make and the connections you forge here will shape the rest of your life.”

    “They are talking about college graduation already?” I remember thinking with a laugh to myself. I hadn’t even been on campus for 24 hours and already I was almost woozy with the exhaustion and stress of adjusting to the culture shock of college, and caring for myself and a new guide dog in an unfamiliar place, and the real work, the school part, hadn’t even started. “At this rate, if I survive to walk across the stage at Commencement, it will be a miracle,” I had thought.

    “Here’s the rail,” the volunteer whispers, placing my hand on the metal rail for the stairs that lead up to the stage. For a brief moment I stand frozen.

    “Go up,” she whispers nudging me again. With that, my thoughts snap back to reality as it hits me that there is no line ahead of me. How did that procession happen so fast? Then again, how does college, how does life, happen so fast? The handle of Gilbert’s harness clicks as I lift it and tell him “forward” and we walk slow and dignified up the narrow stairs. The instant my feet hit the stage, “Allison Michelle Nastoff, magna cum laude!” echoes triumphantly through microphones all over the lawn outside Main Hall where four years of memories and a lifetime of love and support are assembled. Is it just me, or does the professor reading the names, a biology professor whom I met when an American Politics class I was in collaborated with one of his classes for a video project my sophomore year, pronounce my name more slowly, more deliberately than the others? Then it occurs to me that perhaps all the graduates are thinking the same thing about the reading of their own names. The challenges I overcame to get to this stage may be more obvious to observers, but everyone graduating with me overcame challenges to get here, even if those challenges amounted to nothing more than the universal college predicaments that do not discriminate, like having to stay up all night finishing a project that was more involved than anticipated.

    Some of you reading this are likely thinking, “but the usual challenges of college pale in comparison to getting through college without sight. I could never do that!” In fact, you could fill in this refrain with every stage of my life because all my life I have heard this sentiment from well-meaning people who cannot imagine living without sight. To them and by extension to you if you are one of them, I hope that if you take away one thing from my story, it will be an awareness of the fact that you only have access to and therefore can only fully understand life from your own perspective. So if you have never lived with a disability, it is difficult to imagine how you would cope with it. In fact, I shouldn’t be preaching because I have felt the same sentiments toward people with other disabilities I am not familiar with. But in terms of the disability I am familiar with, I can say that while the obstacles this disability presented may seem unimaginable to you, for me, someone who has lived with this disability for as long as I can remember, they weren’t perceived as obstacles at all, just a normal part of life. The dictionary defines normal as “conforming to a standard; usual, typical or expected” and believe it or not as “(of a person) free from physical or mental disorders.” Society likes words and people to fit in to neat definitions, but this definition should be scrapped in my opinion because I have a physical disorder and yet I feel normal. There is no neat definition for normal. It means something different to everyone, depending on the perspective of life you were dealt. With that being said, I hope that none of my peers in my graduating class minimized the challenges they overcame upon seeing Gilbert and me step on to that stage. Disability or not, everyone’s normal presents them with challenges. The reading of my name sounds slow and deliberate because as my mind flashes back to the challenges I overcame to earn this moment, my mind yearns to savor it, but I hope everyone else savored their own moments too because everyone earned them.

    After my name is read, a large-sounding contingent of people greet it with joyous but dignified applause. My face is bursting at the seams with a smile as I am handed the smooth leather diploma cover, a beautiful keepsake and tangible reminder of this joyous milestone.

    “We would also like to acknowledge Gilbert,” the crowd explodes with cheering and thunderous applause that almost drowns out “who attended every course required for graduation.” Then the President of the college hands me Gilbert’s diploma, a giant bone. He wags his tail and tries to get to it first, as he knows it’s for him. I know of blind people who requested that their dog not be honored like this in their commencement ceremonies, and perhaps it is contradictory to my lifelong efforts not to draw attention to myself, to show everyone that I am normal. But Gilbert was so beloved by everyone, and such a blessing to me, especially in the early difficult days of college when he served as a therapy dog, goodwill ambassador and guide dog, that I couldn’t resist the offer. Maybe he didn’t do the same level of work I had to do to graduate college, but that didn’t mean his work was any less important in my eyes, and he did attend every course required for graduation. So what if he slept through most of them!

    After posing for a professional photo before exiting the stage, the student volunteer directs me back to my seat.

    As a child, I was always baffled by the phenomenon of how the eager anticipation of a special event like Christmas, a birthday or choir performance builds up in your mind for the longest time, but then is over in an instant. This phenomenon used to make me sad when I lay my head down on my pillow after these special days, perhaps with the feeling that I was so wrapped up in the build up that when the moment actually happened, I didn’t savor it as completely as I would have liked to. But this isn’t the case as I return to my seat today, my moment of recognition having passed. Perhaps it is because I have become more introspective since my childhood and took care to make sure I savored my moment. But beyond that, I think with maturity, I understand more completely what adults always said in speeches given at every milestone. Graduation may signify the end of one chapter, but it also signifies the beginning of a new one. Maybe I shrugged these statements off because at every previous milestone, as nervous as I was about starting a new chapter in a new school, it was only that, a new school. The chapter was already written. But today, with my formal education complete, it occurs to me that with the end of this chapter, the pages are blank. There will be no school next year and I don’t even have any job prospects lined up. The rest of the book is mine to write now, and the possibilities are endless. Any lingering melancholy about the end of this chapter is overshadowed by the eager anticipation of chapters to come.

    As I listen to the remaining names being read, I recall a conversation my parents and I had just a few weeks earlier around the dinner table.

    “I have no idea what I am going to do after graduation,” I had said nervously, “maybe I should have applied for grad school or jobs this semester, but I don’t know what I would study and none of the few job postings I have seen in my field interest me. All I know is that I want to try my hand at living independently soon, support myself financially and be a contributing member of society.”

    “You know, people like to view life as a neat linear continuum where you move from one thing to the next. But from my experience, I have found that life is really more like a river,” Mom said, “sometimes you’re just happily floating along. Sometimes a current takes you somewhere you never expected, and sometimes you hit sandbars. But if you just take one day at a time and let life unfold, everything works out the way it is supposed to.”

    I think I kind of brushed off this analogy that day because I wasn’t in a philosophical mood, but I am in a reflective philosophical mood today and as I sing Carroll University’s theme song loud and proud with my class to conclude the ceremony, I fully appreciate what a perfect analogy the river is to life.

    Every time I have graduated from one school and transitioned to another, I felt as if my life jacket, made of dedicated, wonderful teachers and a building I had come to know well was being stripped from me and I would have to swim on my own. The waters would be rough in the beginning of the transition, but before long, I was comfortable in a new life jacket of new dedicated teachers and a building that felt like home. After my high school graduation, I feared that the college waters would be roughest of all, as my life jacket was even stripped of the peers I had grown up with, and the support of two aids, Mrs. Hobson and Mrs. Reich who had stayed with me all through school. But now I realize that even in college when I thought I would really need to swim on my own, the foundation of my life jacket, the unwavering love and support of my family stayed firmly in place.

    The waters of college were choppy at first too. On my first day of class, Mom said she would come and meet me outside the campus center after breakfast just to make sure I got to class smoothly the first day. Over many hours of practice with the guide dog trainer, which I chronicle in my 2014 book Paws that Changed my Life, I felt confident about the route, but appreciated the peace of mind of having Mom follow behind me at a distance in case I ran into trouble so that my first day started out on a positive note. It turned out to be a good thing she was there because as soon as we crossed the street from the campus center, Gilbert and I were greeted by jackhammers and a torn up sidewalk! No one had thought to tell us that construction would block our route the first day of school. We had not trained in noisy construction situations, so Gilbert and I were both caught off guard. I ended up having to drop the harness handle and take Mom’s arm so she could guide us around the construction, and every day that first week, she would have to meet us before and after class to get us to the dorm and back. She also ended up having to come to my dorm room and read my textbook chapters to me for awhile because they were not available electronically at that time, and Disability Services did not have the print books scanned and ready on time for the start of the semester. Given these circumstances, and the fact that getting myself and Gilbert ready in time for an 8am class in the dorm setting was proving to be stressful, my parents and I came to the decision that it would be easier for me to live at home and commute to college. Since the dorm room was non-refundable, I kept it my freshman year as a place to rest between classes or do research since my computer equipped with a screen reader was set up there. But at Christmas time, we brought my computer home, and although I maybe could have tried again the following year, given how expensive a dorm room is, and given that we had settled into such a smooth routine commuting to school, we decided it made more sense to commute permanently. Carroll University was only half an hour from home, and a few of my friends were commuter students as well. But being a commuter student made it much more inconvenient to fully participate in the social life of college. Sometimes, thinking about this still makes me a little sad. But overall, I still had a wonderful college experience. I made a few really good friends whom I met with regularly for lunch, and the bugs were eventually ironed out with Disability Services. Before long, I was thriving in the waters of college, which felt like home now. Every diploma I have held in my life, but especially the one I hold today, and even Gilbert’s very presence, proves that everything really does work out the way it is supposed to.

    Mrs. Reich, who was my Orientation and Mobility instructor from kindergarten all the way through high school, thought a guide dog would make crossing streets safer for me because I had a tendency to veer when I walked. A guide dog would keep me walking straight so I wouldn’t veer into traffic. But given complex underlying medical conditions, and the fact that I have always struggled with directional bearing–my parents say this is genetic–Mrs. Reich did not like the idea of me going to a residential guide dog program where I would have to live independently for a month, and then basically have to start my training all over again when I returned home because I would have a very difficult time applying what I learned on the streets of New Jersey or California, to the streets of Wisconsin. But for most of my childhood, these residential programs were the only option for getting a guide dog. But it just so happened that as I was entering high school, one of Mrs. Reich’s friends started loosing her sight to a genetic eye condition. She loved dogs and yearned for the independence a guide dog could give her as she adjusted to this progressive condition, but she had small children at the time and did not want to leave them and go to a residential program for a month. It occurred to her that there were likely many blind people in similar situations, unable to abandon family or career responsibilities to train for a month at a residential program, or people with other conditions that would make living at a residential facility difficult. So in 2005, she founded Occupaws Guide Dog Association, which would serve Wisconsin residents–now Occupaws will also serve people in border states–by completing guide dog training in the client’s home environment. Gilbert and I were the second team to be trained by Occupaws, the first being the founder herself. At the time, my faith wasn’t what it is today, and I called it luck, perfect timing. But the older I get, the more I believe there really are no coincidences.

So as I process out with my class to the joyous beat of bagpipes and drums, instead of succumbing to anxiety over the uncertain waters ahead where my life jacket is stripped even of the certainty of a new school routine, I decide to let myself be at total peace, trusting that wherever the river of life takes me next, I will find a comfortable new life jacket and navigate the waters with the confidence and grace of a sailor who has successfully conquered rough waters all her life.