Category: living with disability-cynthia white

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Wheelchair Pathfinder

This is an excerpt from my ebook that you can instantly download FREE with your subscription to my ezine. COMING SOON!

When I was five or six years old, someone asked me what I wanted to be when I grew up. Without hesitation, I said, “A boy.” As adults, we laugh at children’s cute misconceptions. We know it isn’t going to happen. Then, somewhere amidst the journey from innocence into adulthood, the majority of us arrive unfulfilled, bothered and bewildered of the cause. We wonder: How did I get off my path? What is my calling? What is my purpose?

Carolyn Weiss says it best. She says it’s never too late to get back on your life path. If you are alive and breathing, you have a purpose.

I have always been an explorer, much like my Daniel Boone-esque, frontiersman, explorer dad. (You can read the wild stories about him in my book, particularly the “That Was Then” chapter.) Back in my walking days, I spent endless hours exploring concealed paths off country dirt roads, ambling amidst woods, discovering hidden swimming holes, and forgotten Civil War grave yards. Occasionally, forgetting my compass, I lost my way. Of course, I always found my way back—I’m here to tell you about it. But, they were daunting times in unfamiliar places. It required maintaining control over my emotions—to stay calm and focused—search for familiar landscape, and persevere until I recognized my path.

I have ALWAYS been a writer. Growing up, other ambitions, and other’s ambitions for me, clouded my thinking, causing me to diverge from my path. Like the blinking arrows >>>>> direct a driver to merge into another lane, thoughts of becoming a nun (yep), an archeologist, Ms. America, a linguist, a famous actress, an Airline stewardess (to name of few), kept detouring me from who I was—a writer and teacher.

Because I never listened to my heart, I didn’t know who I was. My persona became whatever this noggin head imagined I wanted to do.

I entered and won beauty pageants until retiring my last three crowns at nineteen. I took Latin, Spanish, Italian, and French until I realized it took more dedication than I was willing to give. I majored in Speech and Theater until my interest in phonetics changed my path into becoming a speech and language pathologist. (This was God’s plan, after all. It was a trick up His sleeve in order for me to provide for myself after becoming disabled.)

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I still followed a couple of detours after that. I’m a S-L-O-W learner, but once I got it, a dust cloud follows behind me and my chariot. (You don’t see it on my book’s cover because my illustrator replaced it with wheelchair tracks. Whatever.)

I believe we wander from our heart’s path because we don’t recognize our value and belittle our gifts. We assume them common and mundane by thinking, “This is too easy. Anyone can do it. I’m nobody special.”

That’s the big LIE—to derail you off your life path, your fulfillment, your contribution to the world. Yes, the world!

Do you know what yours is?

I will help you find the path leading to your heart, the way I found mine.

HOW TO BE THE BEST YOU COMING SOON!

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Disabled or Enabled Thoughts

I may be living with a disability, but I have enabling thoughts, most of the time.

I enjoy reading and writing, and I love words, but there are times when OCD (Obsessive-compulsive disorder) sets in—like the Howard Hughes moment when I catch myself repeating, in my head, the same set of words over and over and over and over and over…. I catch myself repeating a slogan on a billboard, a car sticker silly-ism, a TV advertisement, or a thought reminding me to do something.

I fall out of the formal diagnosis of ritualistic behaviors because there is no mental compulsion driving me to relieve an identifiable anxiety. Except, I must confess, on rare occasions since I was a young girl, when a group of birds fly overhead, I am compelled to count them before they disappear from sight. Of course, that’s totally normal. Don’t you also need to know the avian population? No worry; I don’t keep count from one counting to the next and add them up. That would be CUCKOO, and compulsive. Repeating the same set of words in my head is recurrent, it isn’t compulsive, unless I don’t have a pen and paper readily available, or until I turn the oven off…turn the oven off…turn the oven off….

“STOP!” I say out loud, only to hear myself repeating the same stale words moments later. It’s like dictating a Western Union telegram—Stop (period). No such luck! It’s really aggravating.

To get to my point, research has shown that our thoughts (able-bodied and disabled alike), positive and negative, affect our emotions and physiology. Long before this type of research was accepted, James Allen wrote As A Man Thinketh. The following are food-for-thought quotes from his contemplative writing:

“The body is the servant of the mind. It obeys the operations of the mind….”

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“Disease and health, like circumstances, are rooted in thought. Thoughts of fear have been known to kill a man as speedily as a bullet….Anxiety quickly demoralizes the whole body, and lays it open to the entrance of disease; while impure thoughts, even if not physically indulged, will sooner shatter the nervous system.”

“Strong, pure, and happy thoughts build up the body in vigor and grace.”

“If you would perfect your body, guard your mind. If you would renew your body, beautify your mind. Thoughts of malice, envy, disappointment, and despondency, rob the body of its health and grace. A sour face does not come by chance; it is made by sour thoughts. Wrinkles that mar are drawn by folly, passion, pride.”

“There is no physician like cheerful thought for dissipating the ills of the body; there is no comforter to compare with goodwill for dispersing the shadows of grief and sorrow.”

And, along those lines—A REMEDY: When you find yourself feeling depressed and sorry for yourself, do something kind, thoughtful, and generous for someone else; not just once, often. He’s not heavy; he’s your brother. Your heaviness will be lightened, as well. I have always found this to be true.

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Living With a Disability-WITH A HOPE

According to me, one of the misfortunes of living with a disability is the loss of spontaneity. I miss impromptu trysts with friends for a midday coffee, catching a matinee at the last minute, foot-scorching sands on the beach, beach towel sunbathing, walking barefoot in the rain…but, living with a disability can not diminish beholding beauty.

Recently, I felt overindulged at a friend’s “throw her own” birthday party. She invited an estimated seventy friends for a special luncheon at her country club. (For you guys, if you’re not into flowers, envision the panoramic view through the floor-to-ceiling windows of the 18-hole, 6,702 yards of rambling golf course. Now, fantasize about your par 71 score. Check back in for the last three paragraphs.) The speaker was Dorothy McDaniels of Dorothy McDaniel’s Flower Market fame in Homewood, Alabama. (She has even made arrangements for Margaret Thatcher!) She demonstrated techniques of a dozen different floral arrangements using red roses and green roses (I didn’t know that there were green roses.), green hydrangeas, purple irises, hot pink lilies, yellow this and thats, and white everythings; I love the purity and simplicity of white.

My rose after a two day bloom

 

The table settings were breathtaking. At each place setting was a single rose tied with bows of purple organza and spring green satin. Every rose was a different type and a different color.

 

The centerpieces were low and glorious with light and hot pinks, purples and periwinkles, orange, yellow, and green. See!

A floral rainbow

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The meal was as colorful and tasty: Spring greens salad sprinkled with sliced strawberries, wild mushroom crepes with Béchamel (a rich, creamy white sauce) over a rice pilaf, and rainbow sherbet with a Pirouette (rolled cookie) served in a long stem wine glass. Yum!

Outings have been rare lately, although I’ll be out promoting my book, Views From My Chariot: A Wheelchair Oddity, in the upcoming months! August 23-26, I’ll be in Chicago for the fall National Rehabilitation Conference peddling my book. Look me up if you’re there.

Although, I believe this is my temporary home (like Carrie Underwood’s song), I travel daily, making the best of living with a disability. Each room in my home is decorated with a different country’s influence. My wardrobe is ethnically chosen, and two of my three cats are Persian and Russian.

A language barrier you wonder? No problem! The language in my home is love—the universal language!

When I “relocate,” I look forward to traveling this universe beholding its breathtaking beauty. I’ll be whole and healed, enjoying unsurpassed spontaneity. That will be something.

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Wheelchair Delights

Until you read my book, Views From My Chariot: A Wheelchair Oddity, let me add a little more personal information, aside from the tidbits included in all my articles about my living with a disability.

I’ve been riding in my chariot, i.e., wheelchair for thirty-five+ years now, at break-neck speed—probably not funny because that’s what I did (broke my neck), but it made me giggle as I typed it.

In fact, I was making a phone call a while back checking on something, maybe accessibility, I can’t recall. My sister was at home with me. Midway through my conversation with whomever I was speaking, Candace reminded me—like a backseat driver—to offer that I was handicapped.

As I began to explain that I was disabled, my sister and I broke into hysterical laughter. The harder we tried to regain appropriate solemnity, the more boisterous we became. Finally, I just hung up. Neither of us could compose ourselves enough to explain. I’m sure they thought it was some sick prank—totally disrespectful of the disabled plight. What can I say? That’s how I roll.

Besides my sister, here are some of my favorite things: Nature’s cooperative communication—like a school of fish changing direction in a split-second (I used to scuba dive.), and a flight of birds swooping in a 180° turn in unison; expressive music (Carmen’s “Champion” is my favorite Easter song; for Christmas, Michael English’s “Mary, did you know?” and in general, the Chordettes’ “Mr. Sandman”—a VERY old oldie.); cashmere sweaters, scarves, and barefoot sandals; breakfast, spicy Indian food, and mahimahi;  beets, turnips (boiled, roasted, and sautéed),and roasted garlic; the aroma of freshly baked bread, rosemary, and lemon verbena; the scents of gardenia, honeysuckle, and vanilla; azure skies, full moons, and shooting stars; the exuberance of orange, and the peacefulness of white; late winter daffodils, bright Gerber daisies, and red poppies;  ancient Asian peonies, graceful crepe myrtles, and their leaping lizards (which will make sense when you read my book); a tugboat’s baritone horn in the night, a train’s distant whistle, soothing wind chimes, and a child’s voice; movies, movies, and more movies; cats, cats, and cats (I have three, and I’ll be posting some of their antics.); a good book, and time to read it; oxymorons (Are you thinking I’m clearly confused?); a smart joke, a fun game with friends, and laughter; champagne, dry red wine, Maker’s Mark Whisky, Glenlivet Scotch, Jose Cuervo Gold Tequila (I’m fasting liquor. Can you tell?); coffee (coffee candy, coffee yogurt, Tiramisu, anything coffee), and espresso.
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I have been tediously repetitious with things that I love, but I DO LOVE LIFE! If you think about it, all of the above are simple sensory delights available to the able and the disabled alike.

And now, like any of you, after my coffee’s adrenalin surge, I am exceedingly alert with dilated arteries and accelerated blood flow. I think I’ll go run it off.

Uh-oh, I can’t run.

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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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