Category: SCI

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Chicago, Chicago

Chicago theater

(NOTE: This is more than my standard 500 or less words for my articles. I didn’t want a “To be continued” tease at its middle. So, grab a juice or flavored water. Travel with me.)

For me as a SCI, travel and dilemma are synonymous. I look forward to the fellowship and activities at destination’s end, but the tedious planning and knowledge that MOST plans will crash before realized encroaches upon my hyped anticipation.

This recent Chicago trip was planned around a rehabilitation conference to sell my first book, Views From My Chariot: A Wheelchair Oddity http://booklocker.com/books/6235.html . To make travel possible, my dear friend and European daughter, Sandy LeBihan (one of my international exchange students twenty years ago), planned a two-week vacation to fly across the pond for our visit and my business adventure. We hadn’t seen each other since her third visit in 2007.

We flew a direct flight in an Express—a VERY SMALL, plane. Don’t do it…unless you can get out of your wheelchair or are a paraplegic.

Normally when I fly, I am the only wheelchair traveler; but as we waited to board, there were four other wheelchair users at the gate. Waiting my turn to be strapped into the hard plastic 12-inch-wide isle chair to be bumped and precariously rocked on board, each of the others transferred themselves into it.  Obviously, they were paraplegics.

Of course, I’m going to inquire who they are and where they are going after Chicago. The serendipity is: One was competing in tennis and a couple in basketball at the Paralympics in London! Sandy just came from there, 6 days ago. (She’s French but has lived in London for the past 6 years.)

The horror that snapped me out of my awe was my “handlers!” Inept and obtuse can’t describe the experience or their training. On the other hand, at the Chicago end, I have never experienced two more trained, qualified, and intuitive handlers. When I informed them of my poor upper body strength, they snapped into a harmonious flow of precision I have never experienced before. I wish I knew their names to applaud them. Thank you, guys! Two other of the eight seemed to understand quadriplegia.

“GO Airport Express” (www.airportexpress.com) has wheelchair accessible ramped vans. They have a counter by baggage claims. Make round-trip reservations including them to pick you up at the airport and take you back for your return flight.

Everything I had prearranged with the hotel two months ago was not arranged. There was no accessible room available until the next day (I had specifically reserved one beginning on that date), a mile-high bed that the hotel “engineers” could not lower, and as I had requested—with the foreknowledge of the need, there was no one at the desk who could lift me into the “accessible” bed at night’s end. An hour later after three calls, a dear woman from housekeeping came up to assist Sandy in heave-hoing me in, as she did for the following four nights.

The best things about our room was the skyline lake view, and the cloud-soft beds. Sandy and I both tend to be insomniacs. We slept like babies.

The week-end conference was successful and a delight due to the skill and contagious personality of Gary Rainaldi, its organizer. I met some wonderful people, made several good contacts, and sold a lot of books.

Saturday afternoon, Sunday, and Monday were scheduled with sight-seeing tours. Due to an hour-and-a-half wait for our “scheduled” taxi equipped with a wheelchair lift, we missed our Trolley tour. We waited two more hours to be told there were no more wheelchair accessible tours for the day. (After the fact, they were late because our hotel was twenty minutes from downtown. Their business is downtown where everything is happening. Stay downtown! But, Flash Cab Chicago, 773-561-4444,  was the best! Congenial and knowledgable of disability, the drivers were delightful.)

Sunday, we returned in the rain to be told the lift on that particular trolley was broken; there would be another trolley with a lift soon. An hour later, and after scrapping corroded metal from the wheelchair anchor locks in the Trolley’s floor, we saw Chicago—looking like drowned rats, but happy rats.

State Street

We traveled State Street where Batman rode his Bat mobile in “The Dark Knight.” (Many movies film on this street.) Somewhere on the tour, we passed the wreckage of 6 or 7 topsy-turvy police cars staged for the aftermath of a chase scene. And, we passed by Giordono’s, renowned as Chicago’s best pizza, although several boast the honor.

Overall, the Chicago Trolley (& Double Decker Co.) tour was informative and enjoyable. It was the hop on/hop off tour where you can get off or back on at fourteen allocated points to experience up-close-and-personal sight-seeing, shopping, and/or dining. If possible, plan the first morning tour to allow for this adventure. However, know the calculated arrival and departure times at each point or you might get stuck. The trolley sits for one minute at each stop.
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A $35 ticket lasts for three days of trolley hop on/hop off sight-seeing. A tour without leaving the trolley lasts a couple of hours. If you have the time, ride the first day to pick points of interest where you would like to “hop-off” on other days. We didn’t have the time but were told getting off for a panoramic view of Chicago from the John Hancock Observatory was the exceptional one; there is also the Chicago Sky Deck in Willis Tower.

Sadly, due to so much waiting on the first day, we didn’t get to tour the museums or aquarium—my thing. For you shoppers, “the magnificent mile,” the northeast end of Michigan Avenue, is shopping nirvana.

Monday, blue skies returned for our 90-minute boat tour on the Chicago River and into Lake Michigan.

When I told Sandy that we would visit Chicago, her first thought was that she wanted to be on a boat like the scene with Julia Roberts’ and Dermot Mulroney’s characters in “My Best Friend’s Wedding.” (She works with Universal Studios!) This was my highlight—after a dubious beginning.

Wendella Dock below Wrigley Bldg

Boarding for the Wendella is at Wendella Dock, the ticket counter, at the base of The Wrigley’s Building (yes, the gum). Boarding for the disabled, wheelchair bound, or aged is supposed to be at The Trump Dock. BUT, the street lift down to the ramped, accessible boarding was out-of-service for the week. No one knew this or warned us of the possibility when we purchased our tickets.

After two days of missed tours and delays, we arrived two hours before scheduled boarding. (Thank you, Jesus; we are teachable.) ANYWAY…learning that the street lift was closed, we entered Trump Towers inquiring how to descend to Trump Dock.

Trump Towers

To save you an hour of finally solved cunundrums, Gwen, one of the concierges, retraced our steps to realize the inaccessibility to the boat. She called for building security to unlock a private entrance from Trump Towers to allow us onto the Trump Dock. (We met a ninety-year-old woman here. By her looks and agility, I bet she could have boarded the Wendella by jumping.) Gwen had a couple of bottles of ice cold water waiting for us upon our return. Thank you, Gwen!

On this architectural tour, we had breathtaking up-close views, excellent live narrative about magnificent buildings, architecture, and Chicago’s rich history. We passed through

Chicago skyline from the Wendella on Lake Michigan

Chicago’s Lock into Lake Michigan to view Chicago’s entire skyline. I always looked for the Batman Building (John Hancock) with the two metal spires reaching heavenward, and Navy Pier.

(Adults $26, seniors $24, and children (11 and under) $13. The Wendella even had an open bar.)

Allow me to give kudos to my little hero, Sandy. This trip would not have been possible without her; not just for her physical presense accompanying me, but also for her astounding mental and visual memory. Whether taking directions, finding our way, remembering people’s names, streets, or buildings, she’s a human GPS. I love you, Sandy. Thank you!

I’m glad to be home.

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Equilibrium of Nature

Are you stressed, lonely, bored, or all of the above and SCI? Do you relieve these anxieties with serotonin producing comfort foods like bread, pasta, chocolate, or ice cream, wind down with alcohol, mellow out with drugs, or work it out with exercise or sex?

The last two have been proven to be beneficial, but if “All the world’s a stage,” (Shakespeare) did you know that you can relieve stress, feel connected, and find equilibrium (mental, emotional, physical, and spiritual) in the show of Nature? Preferably in the wild outdoors, but pictures of Nature bring comfort on these levels, as well.

Consider going anywhere green. (Green lends balance, renewal, and peace.) There are 80 national and state parks. Take a pick!

Then, there are scenic drives like the 444-miles of Natchez Trace Parkway (MS), Tennessee’s Great Smokey Mountains, 469-miles of the Blue Ridge Parkway (NC-VA) over the Shenandoah Mountains and through North Carolina’s Asheville in the Appalachian Mountains.

(FYI: The Biltmore Estate is a MUST SEE! Overcome with amazement at George Washington Vanderbilt’s vision (8,000 acres worth), I couldn’t sleep for two weeks after touring its mansion (175,000 square feet and 250 rooms) and gardens (75 acres), which are 95% wheelchair accessible. It is a self-supporting estate. I was more impressed with The Biltmore than the many European mansions I have visited.)

Organize a trip to Arizona’s brownish-orange (B-vitamin enhancing) clay, or New Mexico to drink in its landscape of neutral desert rocks, thirsty plans, and sand (browns calm and ground), and its eternal sunset colors—golden yellows (ease depression and increase energy), ochre, orange (stimulates happiness and joy), and rust; maybe a greenish-yellow margarita, or two; always helps what ails you.

Maybe, take in Wyoming’s Doppelgänger reflections of blue (for vitality, knowledge, intuition, mental relaxation) lakes, snow-capped mountains, and evergreens.

Then, there is oxygenated Oregon; great for renewed energy and cerebral creativity.
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Take in an ocean view with its turquoise (calming, sleep inducing) waters, like a trek along California’s Big Sur, a Caribbean cruise, or Jamaica, mon.

Your geographical location determines the landscape, or lack thereof. If you are a city-dweller, there must be art and science museums, public parks and gardens, a zoo, an animal shelter, or aquarium, most always wheelchair accssible. Plan weekly look-forward-to trips somewhere. Reward your dedication to work. Remind yourself that you’re not a lost island or, relieve a rut.

If your mobility limits these participations, rent travel and adventure videos. My favorite are “Warren Miller Entertainment” videos (extreme snow skiing, snowboarding, etc.), because I loved snow skiing and relish Nature. “The Wonders of God’s Creation: Animal Kingdom, Planet Earth, and Human Life” is awesome. And, there’s youtube.

You can purchase paintings and pictures of whatever calms and inspires you—the Northern lights, mountain tops, sunrises and sunsets, moon-lit evening skies, clouds, rain, rainbows, rainforests, waterfalls, whales, seascapes, trees, flowers, animals, insects, etc; Nature is limitless. She’s waiting for you.

I am calmed, refreshed, inspired, and renewed when I commune with Nature. As well, my home is filled with objects of Nature. I even frame note cards and cut pictures out of magazines to frame. I have pictures of lightening on my refrigerator that I cut out of a National Geographic magazine.

Sometimes, I let scissors do the walking.

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“Help!” (Not the Beatles) – A Wheelchair Assist

WELL! I have had an eye-opener-of-a-day!! (Pay attention to double exclamations.) I went through my drive-thru shower this morning only to realize that I COULD NOT make the landing (transfer) onto my helipad (commode). Wheelchair positioning alongside the right of my commode is essential for a successful transfer. Three-fourths of the way, I could not disengage from my rubber ROHO!!

“Help, I need somebody,
Help, not just anybody,
Help, you know I need somebody, help.”

–the Beatles

For a safe transfer, I depend on my shower-wet rubber cushion. It was not in slip-n-slide mode. My left buttocks sat on a dry cushion; my right, on the dry left side of the toilet seat. I was stuck, literally. Teetering, I balanced with my left hand on my cushion, while trying to heave my dead weight over onto the toilet seat. NADA!!

I’m not a once-does-it kind-of-girl, so with Olympian efforts amidst multiple Hail Marys (prayers, not passes, although it was in desperation), I finally retreated back onto my ROHO, reentered my shower for a second water-lube, and tried again.
Forget it. It wasn’t happening!

“When I was younger, so much younger, than today,
I never needed anybody’s help in any way.
But now these days are gone, I’m not so self-assured,
Now I find I’ve changed my mind and opened up the doors.”

–the Beatles

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To assist my regular commode transfers, I sprinkle baby powder on its seat. Powder lessens the skin-against-wood toilet seat friction. After a shower, I depend on water for an assist.

I used to have an antique ball-and-claw tub fitted with a hydraulic-lift seat secured by suction-cup feet under its base. That was definitely when I was younger. The precarious struggles off the rotating seat, over the tub’s rim, and into my wheelchair gave birth to my drive-thru shower design. (I’m also an interior designer.) A drive-in shower seemed much safer, and certainly has been until, lately, when my body and strength changed.

“And now my life has changed in so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,…”

–the Beatles

To remedy my impasse, I had to transfer into bed, dry off, slather up with my lotion, and dress in bed. But, I did it!!

“…Won’t you please, please, help me, help me, help me, oh.”

–the Beatles

Waiting for some “Help!”-ful comments; but not from you, Paul.

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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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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 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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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.