Author: Cynthia White

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Views From My Chariot: A Wheelchair Oddity IS HERE!

Annually, around 11,000 SCIs occur in the United States. Fifty years ago, the life expectancy for people living with a SCI was only a couple of years. Now, it is next to anyone else’s with the same number one cause of death: heart attack.

Celebrities, like Christopher Reeve, have helped raise awareness of living with SCI, as well as money for research. But, there are the rest of us, with limited funds, who continue to beat the odds by living healthy, happy, productive lives. I am one of those among you living triumphantly from a wheelchair. Let me tell you how I’ve done it.

That’s me!

My book, Views From My Chariot: A Wheelchair Oddity, recounts snippets of who I was before my car wreck—living an adventurous, enviable life among movie stars and musicians—and snippets during my adjustment on my chariot ride that changed me into the whole person I have become. It is a two-part book.

The first part is a fun, humorous, yet pithy vignette Memoir. When my flight of fancy was interrupted by disability, a journey of self-discovery ensued, revealing a secret, even I was incognizant of: I was a fearful, detached person. This revelation allowed me to break through the crippling chrysalis that had bound and paralyzed me before my wreck, into an emotional freedom and physical independence I had never known when walking.
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The second part, Appendix: Let’s talk, is a self-help/reference guide for gaining this emotional freedom and physical independence. It is chock-full of humorous, personal anecdotes in dealing with and alleviating daily vexations (mischievous pets included), as well as descriptions, prices, and sources for purchasing helpful assistive aides, products, and equipment I have found to be essential, or just because I like them. They range from pain patches and health care, home renovation and decoration, kitchen gizmos with recipes included, to exercise equipment, and much more. All these are referenced in the Notes at the end of my book—a wealth of information for anyone adjusting to an interruption of disability, disease, or illness; also, a must for family, friends, caretakers, and professionals on the journey with us.

If you are accomplished at reading-between-the-lines, you will glean extra credit on your life journey toward peace and productivity.

TODAY, I AM ANNOUCING: Views From My Chariot: A Wheelchair Oddity IS NOW AVAILABE! Click http://booklocker.com/books/6235.html  to get on its page, and you’ll be on your way to have it conveniently delivered to you. I’ve offered a FREE excerpt for your preview.

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Living With A Disability

How do you, live with a disability? I think we live as any regular person lives, though a little differently.

I advanced my education after my car wreck. Instead of walking, I rolled to my classes. Later, I was hired as a speech and language pathologist in a school for special children. Due to the diversity of speech and language disorders, I scheduled much of my caseload in individual sessions, or as one-on-ones.

On a particular day, this seven year old, who didn’t want to be in school, decided his session was over. I saw it coming; he had previously used me as target practice with a metal toy truck (one of several vehicles) I was using to teach vocabulary for modes of transportation.

Seated across the table in front of me, he rose from his chair—wearing the face I knew so well—and backed across the room until he reached the wall, never once breaking eye contact with me or even acknowledging my request to return to his seat. Challenging me, he stood firm.

I backed from under the table and wheeled left toward its end. Before I could round the table to guide him back to his seat, he ran to the table’s right end. I backed up and headed toward the right end. He scurried back to the left, never taking his eyes off me.

I knew I could not win this stand-off. I rolled over to the intercom, buzzed the principal’s office, and requested his audience, by name. Instantaneously, David had a change of heart, breaking the sound barrier to get into his chair. After that incident, I was assigned an aide for a couple of my unruly students.

With this one exception, children have always shown a compassionate understanding of my disability. I never had children, but I sat for everyone else’s.
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When I requested that they not go upstairs, outside, or anywhere that I couldn’t be with them, they complied. Since I couldn’t pick them up, I taught them the two-step-climb up into my lap. This was a multi-purpose skill, not only for reading stories, or to love on them, but also to assist them onto my dining room table to change a dirty diaper. Yes, it’s a little unorthodox (I always sterilized the table surface afterward.), but the joy was the same, and the job was accomplished.

With children, here are two perks of having a parent, sibling, or friend, living with a disability. The first is: They can develop early language skills because we talk them through most developmental tasks, i.e., learning to dress, and give directions for performance abilities (keeping their rooms straight and floors clear of toys; if not, we can’t step over things to put them to bed.).

The second is: Their confidence and independence—doing things for themselves, and us—set them up for success, as well as nourishing a sensitivity and consideration for all others.

I think we do rather well living with a disability, thank you very much.

Remember, R.S.V.P.

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Wheelchair Exercise in Optimism

In a recent article “Disability’s Truth,” my intent was to defuse the seeming tension and uncertainty for the able-bodied person in being around a disabled individual; then I wondered, “Are we, the disabled, fostering the discomfort?”

It sounds trite to say that we are more alike than we are different, but it’s true. We are all living life with the cards we have been dealt, often shuffling and reshuffling—seeking better.

My introduction to the world of disability was my own rehabilitation. I was always optimistic, but in rehab I met some really negative, sour sojourners. Their negative energy was too heavy for me. After awhile, I began avoiding their space. They were still angry and blaming the world for their situation, expecting others to do everything for them. (I lingered a little long in the denial stage myself. Catch the five stages of grief in my “Wheelchair Derailment” article.) They completely missed the point of rehab; we were learning a new way of life in order to become as independent as possible.

Yes, it was hard. After struggling an-hour-and-a-half to dress each morning, I wanted to rest, but I was too hungry to miss breakfast. Creeping down the hall to the cafeteria took me another fifteen minutes. After breakfast, our OT and PT classes began. I took full advantage of our rest period after lunch; I took a recuperative nap! I am so thankful that I learned how to wheel a wheelchair (without ever breaking a toe from running into walls, furniture, and other people), dress and feed myself, and put on my own make-up. I wouldn’t be living independently and triumphantly now if I hadn’t.

So today, I am speaking to us: the disabled. Do we greet the world (and our loved ones) with a frown, assuming that “they” should make things easier for us, or with an optimistic smile believing that we can improve our lives? These facial muscles determine how we are perceived?”

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Think about it: Our body also responds to our frame of mind. No one is responsible for our well-being but oneself. Making excuses for our bad health and habits, low energy level, being disliked and avoided by family and estranged friends, or for a poor prognosis from our doctors, is not an option. Only we can change the stigma of “poor, pitiful, paralytic.” We must let go of the illusion of normalcy. (There is no such thing anyway; and forget convention.)

I understand pain and discomfort, and the precariousness of each outing. But, I don’t expect my friends, family, and community to change just because I experienced change. I bought a portable, extendable ramp for inaccessible terrain, call ahead to verify accessibility, plan outings and appointments around the weather, humbly request help prior to doctor and dentist appointments, wear earrings and dress stylishly when I go out, and greet others with a smile.

If I feel down, I call someone that might need encouragement or may just need to hear a friendly voice; BUT NOT TO COMPLAIN. That doesn’t mean that I don’t experience occasional insecurity; I just nip the doubt into do!

Let’s go for it—our potential, our purpose, our passion. We’re worth it! Optimism is contagious.

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Wheelchair Derailment

As with any permanent disability (even a temporary impairment, illness, or disease), the path we were traveling diverges into an unfamiliar one. We don’t plan on, nor are prepared for, these life interruptions. So, what to do?

Elisabeth Kübler-Ross and David Kessler’s book, The Five Stages of Grief is a recommended read for understanding the emotional processes we journey through in order to reach the stage of acceptance. Whether it is death, disease, disability, illness, or a disaster, these stages are for anyone going through a significant loss.

Not everyone dealing with a life-altering or life-threatening issue will experience all five stages, and the stages may not occur in this particular order. As a “one-up” for anyone confronted with a traumatic event, I will vastly condense these five stages until you can read it for yourself.

1.Denial                                                                                                                                   “I’ll be fine.” “There’s been a mistake.” Something overwhelming has happened and a state of shock ensues. We’re uncertain if we can cope with this new reality, if we want to, or even why we should. Denial helps us pace our grief. As we ask, “Why?” and “Why me?” we begin the healing process.

2.Anger                                                                                                                                    Pain is disguised behind anger. Because we feel separated from normalcy by our predicament, anger connects us to something or someone—no matter how misguided. Some direct the anger at themselves; others may verbally abuse loved ones, even lash out physically. If you are family or a friend, wear an emotional bullet-proof vest or helmet for the duration. It isn’t personal.

3.Bargaining                                                                                                                               “If only” and “What if” lock us into the past where we were once safe; this allows us to time travel, back and forth, in our hurt. Bargaining is not sustainable.

4.Depression                                                                                                                               Sadness is a natural response to a loss, and the emotional detachment from life is evidence that we are looking reality in the face; but, this is not the time to try to cheer us up. However, with prolonged hopelessness, irrational or unrealistic thoughts, loss of appetite, and excessive sleep, professional intervention may be needed.

5.Acceptance                                                                                                                               Accepting a temporary or permanent condition does not mean that we believe it is an okay reality. It just means that we realize we must readjust, reorganize, and relearn to live life in a different way.

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Once we’ve made it to acceptance, there will be occasional sadness and frustration. That’s being real. Then, it’s time to think about the future. Can you do something now to get back on the track you were traveling before? If so, go for it!

I went back into speech and language pathology, with a twist. I worked with the regular population before my disability; afterward, I worked in special education. An added benefit during my adjustment was that the workplace was accessible.

If that part of your life is over, try new things. In our PC world, there is a multitude of home-based opportunities. Just don’t allow a rut to form—physically or mentally.

After ten years, I began counseling and writing. After that, I used my interior design to start a business and kept writing.  Early this summer, my first book is coming out! My life is still under construction, and my ideas continue paving new roads to travel.

Pay attention to the pop-ups on your mental screen. Is it something you regret passing up, or something you sacrificed? Is it on your bucket list, or is it a pie in the sky idea you dismissed and never reached for? They could be trying to tell you something.

“Don’t be pushed by your problems. Be led by your dreams.” (Proverb)

It’s never too late to get back on a dream’s track.

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The F-word

When I was nine, my younger sister asked my mother, “What does f*** mean?” Mother asked me to leave the room while she explained its meaning, but I listened. (Inquiring minds need to know.) That was the first time I had heard the word.

I have since read various postulations of its origin: An acronym for the King of England’s consent for a married couple to procreate, an acronym labeling a prosecuted prostitute, or an acronym for an unlawful, sexual attack. Most probably, it arrived in the 15th Century from the Dutch or Low German language, fully formed, and not from the swearing Irish.

Less sensational than this four-letter word’s questionable etymology, but equally misunderstood, is the F-word I’m talking about: Flexibility. It isn’t a vulgarity, although many consider it a dirty word.

Before my disability, I did things when I wanted, where I wanted, how I wanted, with whom I wanted, and because I wanted to. If I wanted to explore, I searched country roads to discover their secret destinations or strolled through secluded graveyards imagining the mysterious deaths. When I wanted to socialize, I gathered with friends, went shopping, danced and listened to music, or participated in sports. All of these are spontaneous freedoms. Once confined to a wheelchair, I had to learn to be flexible.

In living with a disability, I consider flexibility to be my lifeline.

Merriam-Webster defines lifeline as 1:“a line…used for saving or preserving life…to keep contact with a person…in a dangerous or potentially dangerous situation” and 2: “something regarded as indispensable for the maintaining…of life.” The way I see it, hired caregivers or family, friend, and neighbor volunteers are our lifelines assisting us in maintaining our health and preserving our quality of life.
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I live independently, but I happily anticipate the weekly and bi-monthly help from my girl Friday and housekeeper. (Learn about the village that keeps me independent in the “It’s a beautiful day in my neighborhood” chapter of my upcoming book Views From My Chariot: A Wheelchair Oddity.)

My “village” helps me with miscellaneous errands, grocery shopping, pet trips to the veterinarian, keeping a clean house, etc.; they sacrificially work me into their schedules. And yes, there are times that their availability interrupts my schedule. Beggars can’t be choosers. What is a little inconvenience when it is my needs (or wants) being met? For that matter, being flexible is a consideration of someone else.

Knowing that I am clay in His hands keeps me malleable. I can’t be broken if I am adaptable and pliable; and gratitude insures my flexibility.

Have you been rigid and staid in your time table? What are your thoughts on the F-word? (the one with eleven letters)

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Off The Cuff

What’s with laughing gas? I had heard about it for years and been offered it in dental offices. It sounded a bit drug-ish, and drugs don’t like me. I don’t have one prescription. Mainly because a little of anything goes a long way with me, and I need to maintain my wits (and balance) living from a wheelchair. My memory has a short wick, and my bladder has a slow leak; I need to remember my schedule!

Anyway, I was anxious about having something major done by an endodontist or oral surgeon—can’t recall, so I accepted the offer with the contingency that I receive the lowest dose.

The assistant strapped this Hannibal Lecter-like mask over my face—assuring me that its cool hissing mist was on #2. Dimming the lights, she patted my arm with the instruction, “Call if you need anything.” She exited the operatory as James Blount piped in on the Musak, or Pandora, or who cares? I cried, and cried, and cried….
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Laughing gas?

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Wheelchair Exercises

What to do when we want to stay in shape but aren’t physically able to enjoy Zumba fitness, or stretch with yoga, or go for a cardio work-out in spin class? Whether we are disabled from SCI (spinal cord injury), spina bifida, CP (cerebral palsy), an illness, disease, or stroke, there are options for retaining flexibility and maintaining as healthy a body as possible.

I believe we are what we eat, so I’m not a proponent of fried or fast foods, soft drinks, or sugar-laden anything. Not that I never indulge in KFC’s chicken livers (maybe once a year), or a Sonic Jr. jalapeño burger with a small order of onion rings (maybe once or twice a year, and I’m overdue), but I know that my body thanks me with excellent health and more than sufficient energy by eating responsibly.

Until you experience the benefits and are sincerely given to healthy choices, it will require discipline and serious denial to the dictatorial cravings. Aren’t you so-o-o encouraged and just can’t wait to be healthy? It’s like when fasting all I think about is FOOD or that recipe I anticipate preparing.

Diet aside, let me mention a few simple warm-up exercises to stretch and encourage blood flow to our masterful muscles and Mensa minds. Make sure you have adjusted to your new body, know its idiosyncrasies, and check with your PT or doctor before enbarking on new techniques.

By far, one of my easiest exercises for stretching Achilles tendons, calves and ham strings is by using the OPTP strap. It is 72”L x 1”W, sewn together at 7” intervals, rendering 10 loops—perfect for any height.

I place my feet on my bed (any furniture wheelchair height will suffice), wrap one loop around the ball of my foot, wrap my wrist through the loop reaching my upper thigh, then pull. After a few stretches, I lean forward over my lap to increase the stretch. Make sure you are balanced so not to fall forward or sideways. This strap is $17.95 and is available at 1-800-367-7393.

I have an unconventional method for stretching my back, but it pop, pop, pops—just right. I back up against an open door, center the door jamb against my spine, and push my wheelchair tires backward as I press my back against the jamb. For a horizontal lying-in-bed position, I simultaneously press the back of my head and my bent elbows against the mattress (no pillow).

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For a simple yet ingeniously engineered devise that relieves stress, increases blood flow to the musculoskeletal system, stretches, and realigns vertebrae, I have a True Back.

By their description, it is “…a non-powered orthopedic traction device.” and it is my favorite. (I include a complete chapter in my book, Views From My Chariot: A Wheelchair Oddity, on assistive aides, equipment, and such devices. It weighs 4 pounds and measures 24”L x 10”W x 4”D, at its deepest. Each end has a different angled incline; one is for less traction, and the other is for more.

If you are ambulatory, you can put it on the floor at home or, if you prefer, at the office; I put mine in bed with me.

While sitting up with legs outstretched, I slide one end against my buttock—centered for my spine to rest between its two undulated rails–then, slowly lie back over its length. I place a pillow under my head to protect it from the uncomfortable, hard wood and to lessen the stress on my neck.

There have been slight changes made in its design since I bought mine (They now offer a vibrating version.), but it can be purchased for $69.95 (with a free comfort pillow) at www.trueback.com or call 1-800-630-3372.

Does this help? What works for you?

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Wheelchair Bulldozer

From the beginning of my wheelchair ride, family and close friends understood the importance of my gaining independence. Now, they are so accustomed to me bulldozing boxes, furniture—whatever needs moving, that they don’t even volunteer their services. They just curiously observe the unfolding of a new furniture arrangement or open the door for me to add something to my back porch recycling center.

Most often, it simply doesn’t occur to me to ask for help. For those things I cannot do, like changing a light bulb, retrieve objects from a high shelf, or open a cantankerous jar, I make a list to ask the next able-bodied person who enters. (A short pencil beats a short memory every time.) Recently, I was reminded that my bulldozer can’t do everything.

Upon transferring into my wheelchair one morning, my ROHO air cushion went flat. Now, I’ve always had a bony butt and could not endure bleacher seats without a cushion or blanket to set on. With a spinal cord injury and without the minimal glutei maximi muscles, sitting on anything but my air cushion is like bare bone grinding on concrete—excruciating.

Because I’m a plan-ahead kind of girl, I always have two ROHOs: one that I’m sitting on and a back-up for when the one I’m using springs a leak, normally once a year. BUT, I had just returned one for repair and was sitting on my back-up when it went flat.

Upon receiving my returned cushion the prior week, a ROHO (http://www.therohogroup.com) representative had called me to offer a preused, repaired cushion for $100 because mine was out of warranty (A new one is around $400.); they no longer repair for customers or send replacements unless it is still under warranty. I decided I could safely wait a few months before ordering a new one. Wrong!

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I was back in bed within two hours of getting up, to allow my ischia some time off, then up again on my second back-up cushion (hard foam). I called ROHO (800-851-3449) inquiring if they offered next-day air; if so, I could make an order for a new ROHO through DME Services.

I told the service representative that my preused, repaired cushion for which I paid $100 was also caput mortuum, and I needed a new one fast. He put me on hold and came back with wonderful news: This ROHO was still under warranty. He would send me a brand new replacement, and ROHO would pay the $59 fee for next-day.

Today, I’m back on air. Maybe I can help with your wheelchair woes.

R.S.V.P.

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Apple of God’s Eye

Unwittingly, I believe there is a way by which we have all denied God, and turned our faces away from Him. It is by closing our minds (and our hearts) to learn from others. I’m not condoning having such an open mind that your brains fall out. I’m just saying to allow, even welcome, other’s teachings, then use prayer and Jesus’ words to test their soundness.

John said in John 21: 25, “And there are also many other things that Jesus did, which if they were written one by one, I suppose that even the world itself could not contain the books that would be written. Amen.” (Spirit Filled Life Bible: New King James Version) That’s why I believe that prayer and meditation are keys to unlock doors of wisdom.

There are a lot of deluded people out there with even more misguided teachings. But, if we also delude ourselves by closing our minds to true knowledge, how can we find wisdom?

Often, wisdom and knowledge are coupled in the Bible. Since God is the source and the embodiment of all wisdom, did He not relegate to man to search Him out?

Optimistically, when we have knowledge of something or Someone, then we shouldn’t fall for untruth. And, we are encouraged to test all things so, if it doesn’t meet up with His standard, discard it. In time, and through practice, our trained senses should filter out the blarney.

Like channel surfing on the radio, the static occurs only when moving away from the receiving station. That’s why in order to find truth, we ask and seek. But because we are human, there are times that our receiving antennas will be out-of-range due to being lead astray. Or, our receivers experience interference due to mental distractions.

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For instance, three years ago when I only had notes and an outline for my book Views From My Chariot: A Wheelchair Oddity, my original intention was to go with a print-on-demand service, or POD, instead of a traditional publishing company. As the book progressed, so did my ambition. After seeking a literary agent for a year-and-a-half and receiving only polite refusals, I was reminded of my original vision. I believe my ego’s ambition scrambled the air ways for clear reception.

So, when I’m seeking God’s mind on something, and I feel confused or unsettled, I lay it down until later; at another time, I ask and seek again. If there’s a deadline, I must either let it go or move forward in faith. I don’t want to be left wanting because I refused His hand of provision. I want to realize all that He has for me from whatever source He sends. Knowing on which door to knock in order to find comes by asking and seeking (Matt. 7:7-8). Remember the acronym: ASK.

Don’t swallow everything I say just because I believe it. These are my thoughts, and ways that God and I communicate. Just like siblings in the same family have different yet distinct relationships with the same parent, God is jealous for the way He wants to collaborate just with you.

I rest in the knowledge that I am the apple of God’s eye. But, I want you to also know that you are the apple of His eye. Only as you gaze into His, will you see your reflection.

R.S.V.P.

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Passionate Beauty

In my youth, beauty was a non-issue and definitely not my focus—whatever focus I did have. In the past, my life decisions were made without-a-thought, out-of-the-blue, riding-a-whim.

By the time I entered my first beauty pageant at fourteen, I was a full-blown misanthrope–I disliked and distrusted people. Their opinions carried little weight on my self-image, thoughts or actions. I did what was right in my own eyes.

This philosophy freed me from taking pride in, or credit for, others’ labels of my physical attributes. This belief system also shackled my emotional development. (I discuss these in my book, Views From My Chariot: A Wheelchair Oddity)

I gleaned from both my parents to be true to myself, to the best I understood at the time. Though, I don’t believe either of my parents read Ralph Waldo Emerson. He was of the same opinion when he said, “Insist on yourself. Never imitate.”

At sixteen, I remember my mother coming to me with an anonymous letter. The letter contained the warning that because of someone’s “rumored” lifestyle, I was going to ruin my reputation if I continued spending time with her daughter. That’s one of the hazards living in a small town. I had heard untrue rumors about me, too.

Mother read the letter aloud to me, then asked, “What do you think you should do?” My answer was that it was no one’s business what I did or who my friends were. I was going to remain her friend. Mother tore up the letter.

This was the girlfriend who informed me, as I returned from walking the ramp at a rehearsal for a pageant we both entered, “You have a big ass, but it looks good.”

It wasn’t that I really had a big butt. It was my twenty-one-inch waist that emphasized my thirty-five-inch hips filling out my red pencil pants. (It was the sixties.) Anyway, I knew she meant it as a compliment, and I didn’t take it as an insult. We were friends. She was expressing her thoughts. And, even if I did have a big butt, she thought it looked good.

The point being: I knew that people thought I was beautiful. These were the first words crossing their lips upon our meeting. Whatever part of the anatomy being appreciated, I was aware of people staring, even of strangers walking backward to get longer looks. Remember: I didn’t think people had much sense so I interpreted it as silly, just their opinion—not the absolute truth. My critical eye zoomed in on characteristics I considered problematic.I didn’t consider myself beautiful. I considered Elizabeth Taylor, Grace Kelly, and Dianne Carrol beautiful. Today, I consider Selma Hayek, Heidi Klum, Gong Li, Mellody Hobson, and Laila Ali as beautiful.

SCI is hard on the physical body. Though I would like to look as I did in my forties, even my fifties, I’m not an advocate of needless surgeries, drugs, and injected poisons. I love and respect my body’s faithful service these many years living from a wheelchair. Although the physical fact of beauty has faded, I can honestly say that I am beautiful. I now know what true beauty is, and I behold myself from a totally different standard, from a totally different perspective.

Photo MOON fullBeauty isn’t only a physical attribute. Yes, it can be seen in a human face or body and, in addition, it can be seen in the majestic full moon or a promissory rainbow, in Santana’s rock guitar and Latin percussion, or in Yo-Yo Ma with his cello. I believe the secret of beauty is in excellence—in doing or being your best.
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In being at the right place at the right time, the moon does what it was created to do; it reflects the sun. At its most glorious, it’s full. Its other phases may not be as spectacular, but to reach its splendid fullness, it waxes. Hmmm. Are you in a new phase or growing toward your fullness?

For a rainbow to form, an alignment of three things must occur: There must be water droplets in the air in front of you, the sun must be shining, and the sunlight must be behind you. As the result, as the sunlight penetrates into the front of the droplet, it bends or refracts for the first time; as it exists the back of the droplet, it bends the second time. (Double rainbows occur when the light makes a return trip through the back and out the front of the water droplets. How breathtaking is that?)

Hmmm. The beauty of a rainbow can only be observed when sunshine peeks through the clouds, after or during a rainy day.

For the virtuosos in their fields, it took passion, and practice, practice, practice. I believe the moon passionately reflects the sun, and that the rainbow is God’s passionate promise.

What makes you stand out? What is your passion, your beauty source? As a rainbow, it may be shining through a struggle making you so.

Today and tomorrow, look yourself in the mirror; behold the beautiful you. Find a feature, a mannerism, an inherent gift that you like. Whether it is the color of your hair, eyes or skin…an artistic, mathematical, musical or rhythmic talent…height, health or humor, say, “Thank you_______ (don’t be single-minded; mention a few. None are jealous.) for serving me. I love you. I AM beautiful.”

Trust me. It’s true.

Let’s talk…about you. I’m listening.

R.S.V.P.