A guest post I wrote recently recounting a frightening experience I had as a girl.
*Today I love to introduce to you a very special lady-Amy Bovaird, best-selling author of Mobility Matters: Stepping Out in Faith. She’s here to talk to us about her struggles and challenges with a progressive disease, and how she uses her faith and humor to persevere.
I was delighted when Carrie asked me to write a guest post for her blog back in the spring of this year. But first I was traveling and then I was working frantically to finish my new book, Cane Confessions, The Lighter Side to Mobility. It wasn’t until now that I had time to write the post. I’m grateful for Carrie’s flexibility and to have the opportunity today to share my story.
As someone losing her vision and hearing, I face many obstacles each day. The only constant is that I will continue to lose more vision and hearing. The variables change at different intervals of this disease I suffer: what I now know to be Usher Syndrome, the leading cause of deaf blindness in the world.
There are three types of Usher Syndrome: A, B and C. The first begins with hearing loss early in life, the second type is adolescence and the third, the type I have is discovered later and is characterized by a late onset of progressing hearing loss.
Vision loss is a challenge; hearing loss is a completely different challenge. Neither is like being born deaf or blind. Thus, the progressiveness of Usher is the biggest hurdle of all. One never quite adjusts because the losses are ongoing.
Probably my biggest struggle came about eight years ago when I faced using a white cane. To me and many others losing their vision, using a cane shouted “I am blind,” louder than any word. For some reason, being blind is viewed typically as a weakness or deficit by both society and the person who faces the cane.
I overcame the obstacles attached to using a white cane through my faith. Strangely enough, God used a completely blind mobility instructor to help me overcome my fears and to bring “blindness” into perspective. It’s only as negative or restrictive as the person facing it, permits it to be. This wowed me!
Now, it’s not what others think about me that challenges me. As a child of God, I believe have great value and that God has a plan for my life. If I hold to this truth, that becomes my constant and the changing visual and hearing perspectives are manageable. Instead of being overwhelmed with the frustrations I face every day, I look for the humor in these situations.
Once I dropped a box of raisins and no matter how many times I bent over to pick them up, I would turn back to the floor and see yet another raisin or two I missed. By the fifth time, it seemed I had gotten them all (but I found another a week later that I missed). That same day, I knocked over my paper shredder. I groaned as I bent to sweep the shred into a dust pan. Again, no matter how many times I tried to sweep them all up, I still found stray pieces outside my line of vision. It’s teaching me patience. These spilled raisins and paper shreddings represent my everyday difficulties, whatever they may actually be. It could be not seeing the top of a trash can, or like today, not seeing the recycle bin at the local grocery store though it was nearby. Humor and patience help me face up to the everyday vision hurdles.
Losing my hearing takes even more patience. With moderate to severe hearing loss, I am easily frustrated and have cried a few times. I hate to keep admitting when I can’t hear a person, especially after three or four attempts. One of the ways I cope is to pretend I’ve heard. But sometimes that gets me into hot water! God is working on my heart to bring about more honest communication and to let my pride go.
We all experience aggravation but ultimately, we choose how to cope with them. What has helped me in recent years is looking at positive role models of those who live with Usher Syndrome or Retinitis Pigmentosa (ongoing vision loss). I also journal and talk to others. I try to live a life of gratitude and appreciation for the acts of kindness others show me. Humor and it. Laughter helps me keep to continue picking up the spilled raison and paper shreddings each day. Most importantly, I’m learning to trust God’s plan for me, even when I can’t see or hear what’s coming around the bend.
As an international traveler and teacher, Amy was diagnosed several years ago with a dual disability—progressive vision and hearing loss due to Usher Syndrome—but continues to enjoy running, hiking and traveling. Amy is an accomplished public speaker on a variety of topics based on her life experiences and also volunteers with local and national animal rescue organizations. She has written two books: Mobility Matters: Stepping Out in Faith (© 2014) and Cane Confessions: The Lighter Side to Mobility, to be released in November 2016. She blogs about the challenges she faces as she loses more vision and hearing, shares the lessons God reveals to her through her difficulties and manages to find humor around almost every corner.
(Essay first appeared in the Why We Write section of 1888 Center web site on July 11, 2016.)
Why do writers write? Fundamentally it’s pretty much the same. We write because we must; because this is who we are. I could say the same for me, but I prefer to look at this from a slightly different perspective: what would happen if I didn’t write?
I’ve done it before. This “hiatus” lasted for nearly ten years and I felt the consequences of my writing inaction.
Misery. Pure, pure misery.
There was also hate there. And anger. At what? At myself. At life. At various people.
During this period, I dealt with a lot of losses. My vision and hearing due to a progressive disease. The death of my first husband at the age of 25. A miscarriage. Nearly losing my second husband to Pericarditis. Job loss due to restructuring. My father to an aggressive lung disease.
You know, life.
It’s something we all experience. We get up each morning. We breathe. We eat (except for those who live solely by coffee). We go about our daily duties. And for those of us who can, we sleep.
Day in. Day out.
As humans, we’re survivors. I mean look at the history of mankind. It’s a miracle that we even exist!
So, that’s what I did. I strived to survive. Only it wasn’t enough. Anxiety and depression slipped into my life. I felt I was slowly losing myself. Heck, I wanted to lose myself! I mean why did I keep fighting to live? At some point in our existence, we all die.
Something was missing. A piece of me was missing. I just couldn’t figure it out.
My second husband, Jay, presented me with a gift for no special occasion. It was out of love he gave me this precious item, and because he knew me better than I did.
A beautiful leather-bound book full of white pages.
I instinctively knew what I had to do. I took a pen and painstakingly filled each page with words. As Hemingway so eloquently said years ago, I bled on those pages.
I’d found the missing piece of myself.
My writing soul.
So, whenever I’m asked, why do I write?
I write because the price is too high NOT to.
I’ve been writing (somewhat) regularly since 2007; so that’s about nine years now. Most of this time I focused on fiction (of supernatural or apocalyptic nature) while occasionally dabbling in poetry or essays. While fiction is still my first love, I find that I am being pulled more and more towards writing nonfiction.
Wait a minute. Hold the phone.
What exactly is nonfiction?
Here’s my favorite word: research.
Nonfiction (according to Dictionary.com): is “the branch of literature comprising works of narrative prose dealing with or offering opinions or conjectures upon facts and reality.”
Some examples are:
academic paper, autobiography, biography, book report, creative nonfiction, diary, dictionary, encyclopedia, essay, handbook, journal and memoir.
I looked at a few of these examples a bit further.
Essay (Dictionary.com) is “a short literary composition on a particular theme or subject, usually in prose and generally analytic, speculative, or interpretative.”
This would include: “literary criticism, political manifestos, learned arguments, observations of daily life, recollections, and reflections of the author.” (Wikipedia)
Essay can take on other creative forms: film essay or photographic essay.
Memoir Versus Autobiography: are very similar to one another in that they give intimate details of one’s life. What are the differences?
Autobiography focuses more on chronological events, and deals mostly with facts and reality. Memoir, on the other hand, is less obsessed with facts and more about emotional truth. It generally has a subject of focus rather than detailing all the chronological events of one’s life.
What if I don’t want to deal completely in the nonfiction and yet don’t want it to be all imaginary either. What other options would I have?
Semi-fiction is “fiction implementing a great deal of nonfiction such as a fictional description based on a true story.” (Wikipedia)
One example of semi-fiction would be an autobiographical novel which is a form of novel that merges elements of fiction with autobiography.
At the age of forty-five, I am finding it increasingly difficult NOT to write about my life experiences. Some of them however are still painful to me today, or I am afraid of hurting loved ones, so I tend to stay away from anything truly autobiographical in nature. Yet I don’t want my work to be based entirely on facts or reality either. I want to explore the emotional truth of my life experiences so memoir and essay are attractive to me.
The only way to honestly find out is by writing them.
The basis of the Hero’s Journey, the overarching theme is: Transformation.
This could be applied both in fiction and in real life.
I’ve read that there are multiple stages one needs to go through to complete the process, and while I agree with most of them, I don’t think they could be applied to all stories; especially in real life.
Why do I say that?
Not everyone completes the hero’s journey. There are some of us who remains stagnate; stuck in a rut, or in one place.
No growth is taking place.
This could also be called a Tragedy.
I believe that most writers would love to think themselves as “heroes.” No one wants to be remembered as a coward, or some poor tragic soul who fell short of realizing dreams and aspirations.
As I’m approaching my mid-40s, I’m growing increasingly afraid of ending up like that tragic soul. Perhaps I’m being narrow-minded, or tunnel-visioned, but I feel like I’m missing out on something crucial on my journey as a writer, and as a person. This whole past year I felt like I’ve had no growth as a writer. Granted, things have been a bit crazy with the move and all.
Now that we’re in yet another new year, I’m experiencing this growing sense that time is running short. I really hate that feeling. I get it every year; especially the past few years.
Or, maybe I’m just being too hyper-aware of everything.
Starting off the New Year on shaky ground with the flu (the entire family came down with this). Work-wise, this is not a good thing. What could I do? Spread the love?
I’m venturing more into the nonfiction arena this year with a new blog called Whispering Shadows, which will be part memoir and part journal. I’ve been toying with this idea for a number of years; and this year I decided, what the heck, let’s get it on! Once completed, I will need beta readers to help me revise and edit, and then I’ll have to decide how to have it published.
In April, I plan to write pretty much nothing but poems. One of these years, I will have a poetry chapbook published.
Then I have my web fiction work to focus on, especially Redemption. I’d love to complete this one by the end of the year.
There are also other stuff I hope to work on, plus my “resolutions” that I previously posted about. If I manage to be successful on even a handful of these, this should be a productive year.