Category: living with disability-cynthia white

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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.

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The Etiquette of Truth

The truth used to be told straight up, according to the facts, as it was seen, and with no apologies. Of course, if it was bad news, it was given with heart-felt sympathy and concern, as with the doctor’s prognosis of our disability, illness, or disease. Otherwise, the truth was served up as the truth. Who doesn’t tell the truth or want to know the truth? Well….

When I was fifteen, I remember having a conversation with my best girlfriend. I trustingly asked her to tell me something in my personality that needed tweaking; some bothersome trait she found annoying. I seriously wanted to be a better person. Who else would tell you the truth but your best friend? She agreed to tell me something I needed to change on one condition: that I would first tell her a habit she needed to change.

Well, I loved her the way she was. The only thing I could think of was that most of the time I went to her house to spend time with her. So that’s what I said—I would like for her to come to my house more often instead of always having to go to hers.

Now that it was my turn, I asked her again. She said, “I don’t want to. I don’t know.”

I felt so let down and disappointed that she wouldn’t give me any constructive criticism. Now that I’m older, I understand the conflict she must have felt in telling the truth, even though I had asked for it.

Since becoming disabled, I have observed (or have become more aware of) people’s aversion to and avoidance of discomfort, whether mental or physical. One of these seemingly uncomfortable situations is being around the disabled.

During the five months of SCI rehabilitation after my car wreck, we were warned of other’s reactions to us. The teaching staff explained that their responses to us were more a result of their ignorance than our condition. I have experienced this as true.
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Before I internalize another’s words, looks, or actions, I remove my self-centered glasses stained from my life experiences. (Regardless, if a matter has nothing to do with oneself, we tend to interpret it personally.) When I do this, I can see their awkwardness and discomfort as they approach me.

Most often they look over my head or in another direction. If they muster up enough nerve to meet my gaze, I simply smile. I understand. At first, I didn’t know what to do with myself. And, I’ve learned that we in wheelchairs, using walkers, or assisted by guide dogs aren’t the only ones disabled.

For those of you paralyzed by uncertainty of what to do in our presence, it’s okay. For a starter in etiquette, you could just acknowledge that I am there with a smile and a nod.  At our next encounter, you could do the same or ask if there is anything I need help with. You might even confess your lack of experience in helping a disabled person, but you’re available and willing to learn.

Amazingly, truth dismantles barriers. Unhealed wounds, self-absolving justifications, and staid conclusive judgements do not teach us about anyone or anything, particularly ourselves. There should be no consequences to a well-meaning truth.

What has been your experience? Let’s talk about you.

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Satisfied-In Spite of Disability

There are a myriad of things from which we can find peace and satisfaction. Living with a disability, illness, or disease does not prevent us from experiencing joy and happiness either. The heart attitude of ingratitude does that.

One of the most important ways in finding peace AND satisfaction is assuring that our friends and loved ones know we love and appreciate them. I know mine do because I show them by how I treat them, and because I tell them every day. I believe Jewel’s song, “Satisfied,” reveals an anointed insight into our heart’s deepest desire—to love and to be loved, despite its redemptive value.

“Satisfied” encourages us to not be timid, afraid of, or hold back words of love, especially important to those of us with disabilities because we’re physically limited in the many other ways of demonstrating affection. She expresses that the sorrow of regret is worse than any fear of rejection. Give it a listen. http://www.youtube.com/watch?v=ArAlk3yf5hI

Growing up, I don’t remember my parents ever telling me that they loved me. It wasn’t until my late twenties or early thirties that I began telling them that I loved them. (I was a late bloomer in learning to express my emotions.) Talk about awkward—very for me, but more so for them.

My intent was to make sure they knew I loved them, not to change their behavior; nor to hear them tell me. Although they did in time, in the beginning there were nervous laughs, bowed head “uh-hums,” and “Okay, then…” at our good-byes.

I could have lived my life without the expression of those three words, by me or from my parents. And, in a futile attempt to justify myself, I could have pointed my finger at them to divert attention away from my failing. But, during my adjustment to disability, my heart received the blessing to see how much I truly did need to hear those three words, as well as being comfortable expessing them.
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How often are we found guilty of putting our best foot forward for mere acquaintances, church members, fellow employees, and our bosses, but are rude, inconsiderate, and disrespectful to members of our own families? Through my disability, I have realized how much I need others, especially my family. If I don’t tell them today how very special they are to me, I might not have another chance. I don’t want to live with that regret.

Every one of us drew the short straw for, at least, one admirable character quality. If you are clueless as to what one of your shortcomings might be, but truly want to be a better you, try this: Ask your closest friend to help. First, to tell you what quality they love the most about you; second, the most annoying. You will be blessed hearing what endears you to them and, in time, you will be a blessing to them by changing that character flaw.

Don’t expect yourself, or anyone else who may join in on this satisfaction search, to instantly change by just a twitch of the nose. Baby steps are slow, and there will be fall downs.

Get a good brush.