Healthy people move a thousand times a day without giving it a second thought. They hop on buses, squeeze into their cars, or take walks when they feel like it. They dance, visit friends, go to parties, watch movies, or climb mountains. Nothing impedes them.
Not so for the vision-impaired. Restricted sight hinders movement. People with poor vision trip frequently, run into objects, or knock things over. When they’re young, they may be laughed at. They’re often called “clumsy” or “clutzy.” It’s no fun for kids who don’t understand why they can’t see well.
As they move into adolescence, the jokes may become more intense. Fear of calling attention to themselves keeps them from doing the things they’d like to do, or from going places they’d like to go. People lack confidence and often feel alienated from their peers.
When that vision-impairment advances—as in my case with Retinitis Pigmentosa (RP)—a progressive hereditary retinal eye disease that begins with night blindness (usually discovered in early adolescence), narrows to tunnel vision, and ends in blindness or near-blindness—mobility becomes a serious issue.
In low light or darkness, the environment takes on a new, unpredictable and often dangerous role. With Retinitis Pigmentosa, several things happen that “trick” my vision – an object, such as a tree, may suddenly pop up without warning, or another object, like a mud puddle, might exist outside of my field of vision. In the same way, it’s easy to miss a step or fumble in a dark movie theater. It’s also easy to become disoriented and panic. Accidents can range from bumps and bruises to stitches to near-fatal collision.
Over the years, I’ve heard a lot about what physically happens with this disease that one in 100,000 people live with. The rods and the cones break down and affect perception. Faulty nerve endings mis-connect and over time, fall apart. My first retinal specialist explained my condition in these terms:
seeing through RP is like having a picture tube gradually wear out on an old TV screen.
I’ve also been told that each eye has different “islands” of usable sight. Depending on the angle or lighting in which we see something, one island may compensate for a missing island in the other eye, and therefore, some days we can see better and thus move around more easily.
Because this is a disease passed down through genes, there is no cure or operation to “fix” the faulty vision – although today retinal specialists are making incredible strides in genetic studies and a cure may well come within our lifetime.
Early on, clumsiness affects general mobility. Later, it brings an RP sufferer to a crossroads. We must make more earth-shattering decisions, such as when is it no longer safe to drive? Should we use a cane or not? Some aren’t frightened of these changes at all. They take on the responsibility of cane training matter-of-factly in order to stay independent. Others cannot bring themselves to pick up the phone to ask for help. Many don’t even know where to seek information.
Obstacles abound: denial that they need a cane, fear of losing their independence and often, even their jobs. Other people’s reactions enter into their decision. People fear being treated differently or looked down upon. They might feel more vulnerable or unsafe in public, as if by using a cane, they broadcast their weakness and invite danger. Some might even begin to look at themselves in a different, less flattering or “less able” light. To many, taking up a red-and-white cane seems to point to a lifetime of limits and concessions. When someone with RP reaches this point, their world fills with the unfamiliar. One person told me it’s like entering a foreign country where all the familiar cues are gone. For some, it’s easier to stay at home in their own comfort zones, both mentally and physically, than to face and adapt to the challenges that cane training forces upon them.
Mobility matters because no one should be an island unto himself.
People fail to thrive when they’re cut off from others or their interests. Life slows or may even come to a halt as discouragement sets in and individuals feel alone. It’s heartbreaking when someone gives up the quality of life to this disease out of fear – especially at a young age. Without interaction, there’s no nourishment for our souls, and part of us dies, including the spirit. We become, to varying degrees, helpless.
Mobility matters because it gives independence back to that vision-impaired person. It lifts the wall of gloom that fragments a world into two factions: the sighted and the less-sighted or blind.
Mobility matters very much to me. I can’t stop talking about the adventures in faith God set into motion in 2009. Starting with the right teacher, God transformed my mindset about using my cane. After my denial receded, I began to view my cane training as “faith training.” Blindfolded, I envisioned myself “stepping out in faith” each time I left the house. It all started out with that first hesitant step and sweep of my cane.
The Bureau of Blindness paired me up with a no-nonsense mobility instructor whose personality complemented my learning style. In each session when I was challenged to focus on my cane skill, I also gleaned an essential life lesson by watching him respond to others in our environment. My teacher trained me to tune into my four senses to get information along with the cane. He knew when to skillfully intervene so that I wouldn’t feel overwhelmed. At the same time he forced me to problem-solve unexpected challenges on my own. My trainer relished the excursions he took me on. It showed in his speech and mannerisms, which, in turn, ignited my enthusiasm.
As a teacher, I knew what a fine line it took to balance expectation with performance. But he did it so well that I returned after every lesson bubbling over. “I crossed a busy city street alone!” or “Can you believe I ate at the bistro wearing sleep shades?” Like a magician, I held out my hand and demanded, “Ask me what denomination this bill is!” When I got it right, I crowed as if I had performed the best magic trick ever.
For the first time in my life, I felt confident. With my cane in hand and my sense of humor, I had my life under control. My future didn’t overwhelm me.
What was even better, I didn’t have to be an island to myself.
I invite you to witness the dramatic positive change that took place in my life as I went from years of denial to acceptance, from flustered to independent with my cane.
If you’d like to read more of Amy’s writing, check out her memoir, “Mobility Matters: Stepping Out in Faith.” Purchase your copy in paperback, kindle, large print or order a signed copy with free shipping in the US from my website.