Visually Impaired: Now What?
by Beckie Horter
"Life is like riding a bicycle. To keep your balance, you must keep moving." — Albert Einstein
Editor's note: In the New Year we all make promises to ourselves about coming up with a new weight loss plan or exercising more. Beckie Horter, new VisionAware peer advisor, describes her joy in bike riding and how she does it.
Feeling Out of Balance
To keep moving is not always an easy thing for people with vision loss to do. While we may want to stay active, and may even seek it out, our vision oftentimes interferes and spoils our best-laid plans. I discovered this firsthand after central vision loss left me legally blind in my mid-thirties. Along with giving up driving a car, I also resigned as proofreader for the local newspaper. Then I canceled my gym membership. The result? Frustration and anger over my many losses. I soon realized that not doing aerobics at the gym affected my emotional and physical health. Depression set in. I tried riding a stationary bike at home, but lost interest when I realized I wasn't going anywhere fast, or slow for that matter. Part of the joy of bike riding for me meant taking in the surrounding sounds and smells, noticing the feel of bike tires on the pavement, and the wind on my face. It was the pleasure of movement. Experiencing different things.
I remembered the freedom that bike riding afforded as a child. Bikes give us our first taste of independence. We get to decide important things: where to go, how to get there, when to pedal, when to stand up or sit down, and when to apply the brakes. Maybe even when to let go of the handlebars. "Oh, the places you'll go!" said Dr. Seuss.
Yes, bike riding equaled freedom. But with low vision, I doubted that freedom could be mine again. However, because my vision loss occurred gradually over a period of three years, I became used to adapting to less and less sight. For example, I drove a car on the strength of one eye still being 20/20. I read with that eye, then started experimenting with magnifiers. But when my "good" eye lost vision too, adapting on a much larger scale became necessary.
Moving Forward and Biking Again
The first spring after I became legally blind, I tried riding my bike in a neighborhood park where there was little traffic. I had to be more cautious, to be sure, but it was doable thanks to my remaining side vision. I couldn't see far into the distance, but because I was not going fast, it didn't matter. I saw far enough into the distance and a sweet gift of independence returned! I could once again roll along on the pavement catching the smell of someone's dinner over a charcoal grill. I could hear the doves calling to each other or a train whistle off in the distance. And the wind messed up my hair.
Before I made this discovery, my husband mentioned getting a bicycle built for two, and someday we might try tandem cycling, but for now I can still master my own wheels. The only catch: I must be careful where I ride. For instance, I would never attempt a busy street. Paved bike trails, often found in state parks, work best for me. I don't have to worry about car traffic and other traffic (from bikes or pedestrians) is usually light.
Sometimes my husband will wear a bright yellow shirt and go ahead of me on the trail. The color stands out and gives me a familiar "target" to follow. Then after I've been on the trail a couple of times, I remember landmarks. For example: Here comes a wooden bridge. Beach up ahead. There's a parking lot to my right. Thankfully, my sense of direction remains good despite vision loss.
Bike Riding Provides a Balanced Workout
Riding a bike is more than just fun, it's healthy! While mind and spirit benefit from the stress relief of being outdoors, the body benefits as well. Cardiovascular systems get a workout as do muscles and bones. And biking is easy on joints while preserving cartilage. Throw in reduced body fat and you have a balanced workout suitable for all ages. I sometimes wish I lived closer to the many bike trails our country offers. But for now, I'm content to get there when I can. My northern climate allows for biking about half the year, but I keep a walking schedule year-round as well. Taking the dogs outside, regardless of weather, makes everyone behave better. As I've discovered over time, vision loss doesn't mean an end to activity. It simply means we need to adjust, experiment, and keep moving!
Keep Moving in 2017
by Holly Bonner
Once a woman learns she’s about to have a child, her attention is immediately directed towards prenatal care. At the mid-point of pregnancy, approximately 20 weeks, doctors will begin discussing a birth plan with the expectant parents. A birth plan is a document that lets your medical team know your preferences for your delivery, including things like how to manage your labor pain. Having your wishes recorded in the form of this written document ensures your healthcare provider understands your wishes with regards to the delivery of your child. It is important to note that although preparation for birth is essential, the new mother may not be able to control every aspect of her labor and delivery. Sometimes the unexpected happens, and you must remain flexible in cases where you may be forced to deviate from your original birth plan.
Two of VisionAware’s Peer Advisors, Maribel Steel and Holly Bonner, discuss their different birth plans and how that impacted the delivery of their children in today's post from the Blind Parenting series.
After developing an aversion to hospitals as a result of testing related to her retinitis pigmentosa (RP), Maribel chose to deliver all three of her children in the comfort of her own home. Holly, who lost her vision as a result of a neurological condition due to breast cancer, was forced to have cesarean sections with both her daughters as doctors feared labor could induce brain bleeding. With five healthy children between them, Maribel and Holly discuss what it feels like during a home birth and a hospital cesarean section as blind mothers.
There’s No Place Like Home — Three Children, Three Home Births
One of my reactions to becoming pregnant with my first child (over three decades ago) was not so much having mixed feelings about becoming a parent for the first time but being concerned about going to the hospital. I couldn’t bear the thought of giving birth in what I had previously experienced as a hostile environment.
My phobia of hospitals was due to a two week stay in my teen years when I had to endure painful tests in order to find out why I had mysteriously lost so much of my eyesight. Two weeks later, my family and I learned two new words that came as a great shock and challenge — the diagnosis of pending blindness. I had retinitis pigmentosa. Once out of that hospital bed, I never wanted to return — not even to have my babies.
With the news of our first child in my early twenties, my husband and I went in search of birthing alternatives. We were comforted in finding a solution that would work: a qualified doctor who supported women and their partners in their choice of natural home birth while being well cared for with medical assistance if required.
My doctor and his team of professional midwives ran monthly classes in ‘Responsible Home Birth’ to train new parents in natural home birth. My husband and I became well educated on what to expect when having a baby at home. So when the pangs of labor started, we felt emotionally prepared and physically ready with practical items for mother and babe in place.
My husband kept a track of the labor pains in a notebook (which I still have in a personal drawer) and we notified the doctor and midwife. During the birthing process, I felt a beautiful sense of freedom — being in my own surroundings and being so well supported by my team of helpers.
At home, it felt natural to give birth. I wasn’t fearful, and together we created a calm ambience to fill the warm room. Time moved as nature dictated; our doctor was in no rush and kept a friendly watch over the progress of the birth. In the dim light one January night, our baby was born with no assistance apart from Mother Nature taking her course to deliver a beautiful and healthy baby girl.
In the comfort of our familiar bedroom, I softly sang Amazing Grace to her all night long, while my loving hands traced over her little warm body asleep on my tummy.
I know that having a natural home birth is not for everyone, but I treasure having experienced the gentle way of bringing a child into the world. Not one but three of my babies have all taken their first breaths in the warmth of our home.
Two Cesarean Sections
By Holly Bonner
Halfway through my first high risk pregnancy in 2013, my obstetrician consulted with my neuro-ophthalmologist about revising my birth plan. Although I had originally wanted to have natural child birth, my medical team feared the pushing involved in labor could place immense pressure on my optic nerves, potentially causing a significant brain bleed. Collectively with my medical team, my husband and I opted for a scheduled cesarean section at 39 weeks.
On the morning of my delivery, the hospital was well prepared for my arrival and my overwhelming nerves. My obstetrician had told me he had met with all hospital staff tasked with my care to ensure they explicitly, verbally explained everything they were going to do. As a pregnant, blind woman, hearing what people were doing to me was helpful. It made me feel like an equal participant in the birth of my baby, rather that just a willing bystander. My husband and I were escorted to a private triage area where my baby’s heartbeat was monitored. I had tested positive for Strep B, a vaginal bacterium, and required intravenous antibiotics prior to giving birth. A nurse started an IV, and I attempted to relax.
Minutes before we were scheduled to go into the operating room, my anesthesiologist met with us to discuss the procedure. He asked me to open my mouth to ensure I had no loose teeth or fillings in the event I needed to be intubated. He explained he would be giving me a spinal block, which would burn momentarily and then cause numbness from my sternum to my toes. I reiterated how extremely frightened and nervous I felt. The doctor injected a small dose of anxiety medication directly into my IV and promised he would stay with me through the duration of the procedure.
A nurse handed my husband a pair of scrubs and directed him to get dressed. The anesthesiologist and two nurses wheeled me into the OR. I was told my husband would not be permitted into the room until my spinal block was complete and I was numb. I was also asked to keep my darkened sunglasses on. The surgical room is very bright and hospital staff did not want me to have any added discomfort from my eyes due to my previous history of light sensitivity.
Once in the operating room, I was shuffled onto a table. A nurse instructed me to dangle my legs off the side and curve my back like a scared cat. My obstetrician touched my leg and together with two nurses, the three held my hands as I waited for what seemed like forever. Behind me, the anesthesiologist injected the needle into the back for the spinal block. All I felt was a momentary little pinch. Then, as if we were in some kind of race, my legs were lifted and swung on top of the table and I was told to lay flat. Suddenly, everything went numb, and although I knew being numb was the general idea, I was quite surprised by how quickly it actually happened.
I could hear the rustling of a large paper drape being put up in front of my belly. I could smell the faint scent of alcohol and peroxide. A nurse explained she was going to tell me exactly what she was doing so I would not become more fearful by the overwhelming sounds of the operating room’s hustle and bustle. First, she cleaned my belly with antiseptic. Then, she informed me she would be inserting a urinary catheter. Finally, I was told to prepare myself for the sound of a buzzer, and the nurse shaved hair off my pubic area and stomach.
My anesthesiologist was extremely kind and stroked my hair, asking me distracting questions about my baby and promising me my husband would be there soon. That’s when I heard a door open followed by the sound of my husband’s voice. He sat next to my head and rubbed my cheek telling me not to worry. The obstetrician said he was “starting” and that I would meet my daughter soon.
Within minutes, they announced the baby was “out,” but I heard no crying. I could hear my husband’s chair move as he went to stand up to look at why our daughter was silent. I then heard a nurse firmly tell him to sit down. My baby’s umbilical cord was wrapped around her neck. Doctors calmly removed it. My husband stood up again, then said, “she’s pinking up, she’s pinking up.” That’s when I heard my baby’s cries. A nurse cleaned up my daughter and brought her over to me. “Say hello to mommy” she said as she pushed her cheek to mine. I vaguely remember kissing her and choking on tears of happiness before the anesthesiologist gave me more drugs that knocked me out completely.
I woke up in the recovery room about two hours later. My blood pressure had spiked during the procedure and the anesthesiologist thought it best to have me sleep through the rest of the procedure. Once I was able to move my legs, I was moved to a regular hospital room and got to hold my daughter for the first time.
I remained in the hospital for five days before I was finally released home. My doctor also instructed me to wear a tight compression belly band. The tightness of the belly band made standing and sitting easier, it also helped lift the skin from my belly as it began to tighten again post partum. Exactly one week after my surgery, my stitches were removed.
Cesarean sections are considered major abdominal surgery that can take anywhere from six to eight weeks to fully recover. Although terribly sore and in a significant amount of pain after the procedure, it seemed a small price to pay for the wondrous feeling of holding my healthy baby in my arms for the first time. Maybe that’s why I chose to do it a second time when we welcomed a second daughter a year later.
Blind Parenting Series
- Blind Parenting
by Maribel Steel
At this time of year, New Year resolutions abound. As a writer and a person living with a visual impairment, I am always on the look out for uplifting quotations that will help me focus on new ventures and goals. I find encouragement and peace of mind when I stop for a moment to consider the wise words of others and can gain insights for my personal aspirations. Like a beacon radiating with light, quotations have the ability to cast a more positive perspective on our thought process when life can get challenging.
Following are 17 quotations especially chosen for their uplifting message under the three themes of acceptance, courage, and perseverance. You may like to copy and paste, keep in a journal, or find a favorite and let it keep your thoughts moving in the direction of your goals in 2017.
17. “Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.” Michael J. Fox
16. “The only way to make sense out of change is to plunge into it, move with it, and join the dance.” Alan Watts
15. “When we are no longer able to change a situation, we are challenged to change ourselves.” Viktor Frankle
14. “When love and skill work together, expect a masterpiece.” John Ruskin
13. “When we take time to notice the things that go right - it means we're getting a lot of little rewards throughout the day.” Martin Seligman
12. “Being challenged in life is inevitable, being defeated is optional.” Roger Crawford
11. “The gem cannot be polished without friction, nor man perfected without trials.” Chinese Proverb
10. “For happiness, one needs security, but joy can spring like a flower even from the cliffs of despair.” Anonymous
9. “God changes caterpillars into butterflies, sand into pearls and coal into diamonds using time and pressure. He’s working on you, too.” Rick Warren
8. “Nothing is so rewarding than the patience that you take to go over the ramps of life. They may slow you down, but you are an unstoppable hero. Keep driving!” Israelmore Ayivor
7. “Feel the fear...and do it anyway.” Susan Jeffers
6. “As we rise to meet the challenges that are a natural part of living, we awaken to our many undiscovered gifts, to our inner power and our purpose.” Susan L. Taylor
5. “The most rewarding things you do in life are often the ones that look like they cannot be done.” Arnold Palmer
4. “The early bird gets the worm, but the second mouse gets the cheese.” Anonymous
3. “Coming together is a beginning; keeping together is progress; working together is success.” Henry Ford
2. “When you want something,all the universe conspires in helping you to achieve it.” Paulo Coelho
1. “Success and happiness lies in you. Resolve to keep happy and your joy and you shall form an invincible host against difficulties.” Helen Keller
Perhaps you have a favorite quote too? Please share in the comments below and see if we can create a bumper collection for this year...
Inspirational Quotes for the New Year
by Susan Kennedy
I love to learn. I read books frequently. I ask people about how they do things. I visit museums. I watch TV programs and listen to podcasts reporting on news and art and history. Give me the remote, a Netflix documentary, and a bowl of white cheddar popcorn, and I’m set for the night. My curiosity about life compels me to understand.
When I gained low vision a few years ago, I decided to learn how to adapt so I could still live a purposeful life. I switched from paperbacks to ebooks and audiobooks. I use audio tour headsets at museums. I continue to talk to people about their lives. When I watch a movie and I feel like I’m missing information, I use audio description at theaters and on Netflix. My visual impairment doesn’t affect my desire to learn.
Learning Braille with Low Vision
With this attitude, I decided to learn braille. But wait, you may say. You have some remaining vision. Why don’t you just use technology like text-to-speech software and other aids to read print? Well, I see braille as another option in my toolbox of ways to manage low vision. If I can read braille, or at least identify letters and numbers, I can navigate accessible public spaces when I’m alone by selecting the right floor on elevators and entering the intended office. I can label frequently used items at home. I won’t strain my eyes using a magnifier for print when there’s a braille copy. Glare? No longer an issue to these eyes with a tactile language. I will regain the tactile experience of reading. I will find labeled spices and kitchen tools faster. Braille will simplify my life. By learning braille at a time when some people may think I don’t “need” to, it’s a testament to the importance of options. We don’t all do the same things the same way. Life is full of change and options help us deal with it.
How to Learn Braille
There are many ways to learn braille. I enrolled in a correspondence program through the Hadley Institute for the Blind and Visually Impaired. I complete a lesson each month. Maintaining a sense of joy during the work allows me to connect positively to the material rather than create frustration. I know I won’t learn braille overnight, and I don’t pressure myself to do so. By using good posture and solid habits, I will become an efficient braille reader. I take things at my own pace and enjoy the process Hadley’s staff carefully planned.
Recently, I finished the introductory course featuring reading techniques and a few letters. When I run my hand over a page using flat hand scanning, I determine if a page is full of lines or columns. When I run my fingers gently along a line, I notice how the three vertical dots of an L feel different compared to the horizontal pair of dots of a C. I start to notice the space between letters, the patterns of each character. As the tiny real estate of my fingertip hits dots and spaces on paper, the motion stimulates electrical impulses under the skin, sending signals to my brain. Slowly I’m recognizing letters instead of touching random bumps on a page.
I’m learning a new language, a tactile code, one dot at a time. Learning a new skill isn’t easy, but it’s rewarding and part of a fulfilling lifestyle with options. Braille will be one of my options as I live well with low vision.
Learn More About Braille
by Katy Lewis
Do you look forward to making positive changes at the beginning of each new year?
A couple of years ago, I thought I would make a new start. I wrote down my resolutions and a goal plan. But after a few months, my plans were forgotten for I seemed to be unable to sustain the level of attention required. Of course, I felt like I failed. Does this happen to you? If so, you're not alone.
Statistics of New Year's Resolutions
Roughly 45 percent of all Americans make New Year's resolutions, but only eight percent of them will achieve success.
For Americans in their 20s, only 30 percent will be successful and achieve their New Year's resolutions. Americans over age 50, come in at a low 19 percent success rate according to the University of Scranton Journal of Clinical Psychology.
These statistics do not designate figures for Americans who have vision loss or blindness. I am curious about how we rank.
Set Your Intentions
My attitude about New Year’s resolutions shifted significantly a few years ago because I began learning more about a different way of thinking. I no longer make a detailed goal plan. Instead, I set my intentions.
In my weekly yoga class at the local senior center, we begin our session by “setting our intention.” We pause, close our eyes, and quietly think for a minute on something we choose to focus on. Yesterday, when the group did this I thought silently, “Today, I intend to have a peaceful, loving heart. I intend to keep a calm heart during this yoga session so I can take tranquility home with me.” During our class, I kept thinking about my intention. Relaxation and a feeling of peacefulness remained with me as I left the group to continue on with my day.
My first encounter with this idea of setting intentions came when I read a best-selling book by Deepak Chopra, "The Seven Spiritual Laws of Success." This small book was a gift I received in 1995 from a friend. However, I did not read the book for a few years.
Eventually I opened the book, began reading, and started on a path to some new adventures that taught me how to be more thoughtful about reaching desired results in my personal and professional life. I learned about intentions.
When I lost most of my eyesight in 2007, that knowledge was a game changer for my recovery.
“How did this help?” you ask.
Once I began to recover from the shock of sudden, profound vision loss, I began to write out intentions that gave me encouragement and the tenacity I needed to learn how to live a new life.
I wanted to accept the limitations, so I could begin to heal; yet, I longed to be the outgoing and productive person I had been prior to my vision loss. I admit, I am a Type A, high-achiever. But vision loss was a hard blow, and I had to find a way to overcome my anger and frustrations.
Instead of complaining, I listed all the little things I could not do. I wrote down that I “intended” to do them. I turned my wants into intentions in this way.
One by one, I wrote my desired outcomes into the form of intentions:
- I intend to learn how to use a computer again.
- I intend to knit again. I want to knit sweaters for charity as I have done in the past.
- I intend to be able to take a walk all by myself.
- I intend to write stories & poems.
- I intend to have my stories & poems published in wonderful magazines and books.
- I intend to write a new book and get it published this year.
- I intend to do book signing events and public speaking engagements.
- I intend to make art and have my work in museum exhibitions again.
- I intend to write my two blogs.
- I intend to walk in love and peacefulness.
- I intend to help others who I encounter on my path of life.
Now, I know that your list of intentions may be completely different than mine. What will you write down as your intentions for the New Year?
When I wrote my intentions down, I gave my deepest desires wings.
We send them off like an empty ship leaving the shore and moving out into the ocean. Soon they are out of sight. But, at the appropriate time, they will return to us bearing treasure.
Positive Aspects of Setting Intentions
- Anyone can do it. No age limits and no ability specifications needed!
- Setting intentions eliminates the complex business system of charting out a rigid goal plan or striving for unobtainable goals because you have to run your life like it’s a business plan. The moment you take your eyes off the goals, you have failed to attain them. All the work is on you. I lived like this for years in my role as an administrator and again as a professor. There is a better way.
- Writing intentions down and viewing them as if they already exist brings a feeling of being thankful for everything you have. Writing them down gives them energy and you are releasing them.
- Intentions can be anything you want in your personal or professional life. Be sure what you want brings happiness to you and everyone in your life.
- Keep your intentions private. No need to share them.
Start Setting Your 2017 Intentions
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