Sails of Optimism

There’s plenty of research correlating that our bodies, able-bodied and disabled, respond to what we think and believe. (I talk more of how I learned, and continue to practice, this in my book, HOW TO BE THE BEST YOU, in “As A Man Thinketh.” http://booklocker.com/books/6811.html) In addition, I believe that our bodies not only “eavesdrop” (Chopra Deepak) on our thoughts but also believe them, negative or positive; so, I choose to see/envision what I want to believe will happen.

Since my brain, eyes, and heart co-habit one body, my heart’s desire is to see what I believe. I watch, in my mind’s eye, my nerves innervating whatever muscle I’m struggling to move since becoming disabled, as I progress through my day or as I exercise. Whether I feel defeated or have almost fallen, some days I even watch myself stand up and walk.

Any way you look at it, whether it’s physical return or emotional adjustment, time heals. If you’re a new SCI, caregiver, or friend, give yourself/patient/friend a two-year post injury pass to accumulate answers to impatient questionings. Continue therapy, positive thinking, and planning for the future—like it will turn out as you hope; tweak as you go.

After the second year, introduce yourself to the new you, happily making your acquaintance. By then, you’ll have a good perspective of your abilities and will have gained a new respect for the champion you’ve become, no matter what.

Although there are occasional setbacks with any SCI, my body’s sensation level took another leap after 36 years. I barely had any sensation the first two years post injury; it’s improved slowly but surely, as have my confidence and problem-solving skills dealing with and eliminating the occasional curve balls life with SCI tends to throw.
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sailboat on water Just remember: acceptance doesn’t mean dropping your anchor wherever you are in your recovery today. It means embracing where you are, in case you’ve reached your physical plateau, but keeping your optimistic sails open, not to miss even the gentlest breeze of progression.

While my body hasn’t fully evidenced what I’m believing, I’ll continue working toward it, believing that I’ll see it…with a finger up in the wind!

 

Pressure Mapping

In my March article, “Conditional Pause” (http://conversationswithcynthia.com/2013/03/01/conditional-pause/), I relate the tail of why my pressure mapping was delayed. Now that it has been done, I want to explain my experience so that you will know what to expect at your appointment.

Pressure mapping should be done in a SCI rehabilitation facility in the PT department. The room where I was evaluated looked much like a small warehouse with shelves stacked to the ceiling piled high with sample cushions, wheelchair backs, and whatever to insure the perfect product for each individual. I was met by an out-patient PT and my DME representative, a wheelchair pressure specialist.

While in my wheelchair, I sat on a thin rubber mat that they placed over my cushion. Sensors within the mat measured my bottom’s pressure points on the seating surface. These points, represented by a color continuum of sorts, were projected onto a computer screen. The diagnostician explained my readings, as seen on the screen.

She explained that my low profile ROHO was good for me, but my wheelchair back didn’t provide sufficient back support for my SCI.

As we discussed the pros and cons of several attachable back rests, I reminded them that I shower in my chair and asked if these back supports were waterproof. They weren’t. As well, it would require someone else’s assistance to attach and detach it with each shower. I was given a lumbar support, a small elongated pad, that I can slide behind my back for all-day support then, remove before my shower.

Whatever your problem, it is diagnosed and immediately rectified with the appropriate cushion, back support or new wheelchair while you’re there. A corrective prescription is written and ordered, and a report sent to your physician.
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In my humble opinion, pressure mapping should be done every 5 to 10 years. Our bodies change, we gain, and we lose weight. If you haven’t been pressure mapped, request it.

I don’t believe my spinal misalignment is a result of not having been pressure mapped, but it assures there is no undue pressure on the ischium or tailbone. It is also for wheelchair evaluation to ensure optimal spinal alignment and posture. My fee was $98.

Here is a site, SCIRE (Spinal Cord Injury Rehabilitation Evidence), which further explains pressure mapping and many other aspects of SCI: www.scireproject.com

 

Happiness Is A Choice

It’s no secret; I’m as much of a shut-in as you can be. Not as in being a hermit, because I love having friends and family come for visits in my home, but predominately from repercussions of disability. In light of my circumstances, someone recently asked what keeps me happy; what brings me happiness?

There are a myriad of things that bring me happiness. (You can enjoy many of my other delights in Views From My Chariot: A Wheelchair Oddity http://booklocker.com/books/6235.html .) But today’s happy topic is my cats.

I’ve had all three of my cats since my SCI, so they think it’s totally normal to live from a wheelchair; although, only two of them take advantage of 24/7 lap privilege.

They make me laugh many times a day at their crazy antics, cute faces, quirky behaviors, and expected responses. They are so-o-o predictable. Aside from the mere joys of having a pet, they’re also good for my health. Laughter is always good for what ails me, and stroking my pets lowers blood pressure.

Did you know that animals provide us with similar social support as people do? Although just like people, my cats sometimes make me cuss!

I know. I know. I’m trying to quit. But I promise I’m making progress. Recently, I was telling my sister about something frustrating that had happened. I don’t remember if it was something I had dropped, broken, or spilled OR if it was the day my 21½ year old female feline pranced, with intention, into my bedroom, raised her fluffy tail, and peed on an antique oriental rug.

Anyway, as a response to my dismay, she asked if I cussed. When I proudly remembered that I hadn’t, she said, “Wow, that would have been the right time to.” So much for my support system!

In my sixty-odd years of loving and observing animals, I know they have the capacity to understand and obey instruction (and disobey), retain good and bad memories thus, make associations, communicate with each other and us, if we choose to listen and observe.

For example, one day when all three of my felines were in the same room with me, I said something to Ciati, my only female. She looked at me, as usual, but the boys looked at her. I already knew that each knew their own name, but I hadn’t witnessed them knowing each others’ name. This new data called for a name-recognition survey.

I addressed Fred by name and said what a good boy he was. As usual, Fred looked up at me then, Ciati and Laptop looked at him. Oh-h-h!
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I took my experiment all the way. I called Laptop by name and told him he was also a good boy. Laptop looked at me, and Fred and Ciati looked at him. So-o-o cute! How smart! But then, why shouldn’t they know each other’s name. I call them by name a dozen times a day:

“My boy, Fred.” “Fred’s a handsome boy.” “Fred Astaire!”

“I love my Laptop.” “Laptop’s a good boy.” “Bad behavior, Laptop!”

“Ciati’s a pretty girl.” “Ciati’s my best girl.” “Ciati!”

A secondary reason for my happiness is from a choice to forget offenses, forgive, and look for rainbows during the rain. Sure, there are occasional disability downers, but they pass. I don’t let bad memories spoil my happiness. I’ve chosen to cast them to the wind. In fact, I’m a firm believer that Saturn’s rings comprise bad memories, the other sock, and ALL my unintentionally deleted emails, articles, messages, and manuscripts. I’m a very, very, VERY happy girl!

What’s your ‘happy pill?’

 

 

Conditional Pause

Well, pressure mapping has taken a back seat for a more pressing de-tail. (I’m holding up my LAUGHTER card.)

Ever hear of someone wit SCI bending their coccyx while seated? Now, you have. That’s what I did. After sitting in a wheelchair for 36+ years with osteoporosis, it was found that the stress pressure on my spine had bowed my coccyx, making a posterior misalignment. Then, when getting into bed the evening after being bumped and slung around in a transport van to a doctor’s appointment, I felt my tailbone move further out of line, to the left, to the left (as Beyoncé sings); and it bulged. Ouch!

Although my SCI doctor suspected a stress fracture, the previous week’s x rays had shown no spinal breaks. Now, with the pain from a new issue, she advised me to get a cat scan which would definitely show even the least fracture, and the condition of my tailbone. In addition, I had my sister take pictures of my out-standing coccyx to send to my doctor. (My doctor’s nurse and I have become really close.) Thus, began a week’s bed rest for a suspected deep tissue breakdown that she (my doctor) miraculously spotted on my fanny pic! There were 2 problems with the doctor’s orders.

The first problem was: I couldn’t sit up; much less get into a car! The only solution to have my condition checked was to call an ambulance for a non-emergency transport.

The second problem was: no insurance. Digging deep wasn’t going to help. This non- emergency screamed, “Emergency plastic card!” $714.86 worth! Again, OUCH! But, there was a silver lining in this cloud.

Our local ambulance is through Northstar Paramedic Services or Northstar Emergency Medical Services (NEMS). Weston Bolen, an AEMT, and Ben Patrick, an EMT, arrived in the Basic Life Support (BLS) ambulance. (To forestall assumptions of doom and gloom, I had already called my nearest neighbors to inform them that it was merely a matter with my butt, bû-tá, derriére, badonkadonk, arse.)

Anyway, these two young men could not have been more professional. They were compassionate and understanding of my directions to circumvent added pain from my disability, gentle in the lifts, transfers, and rolling transports on the Ferno stretcher, while being patient and congenial during the wait.

I enjoyed them so much that I wanted to invite them in for dinner, but I couldn’t sit up, and they were still on duty. Wes and Ben, thank you!
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The bad news is: the cat scan showed nothing different than the previous xrays showed. AND, after 2 ½ weeks of bed rest, my coccyx bowed further. How can that be!

Pressure mapping has been delayed until March.

Wondering what condition my condition is in?

It’s conditional.

Has anyone else experienced this?

R.S.V.P.

Wheelchair Combat

In its 10th year, I’m highlighting the best SCI site ever: Apparelyzed! (I have it listed under my Blogroll as “SCI Specific,” and its link will always be included in my Wednesday Weekly newsletter, “Chariot Notes.” A click will take you there.) With its 19,000+ worldwide membership, every nationality, religion or not, profession, orientation, and mentality is represented in its diversity. Simon, the creator and mastermind, ROCKS and rolls, like the rest of us.

I am a fairly new member. If you, a family member or friend have any type spinal cord injury (SCI), you will want to take a look at its offerings: varied forums to exchange pertinent aspects of SCI, personal discussions on the emotional and physical frustrations of living with a SCI, current research for a cure, explanations/definitions of SCI involvement, and just an understanding place to vent. You can also send private messages to other members or go to the chat room. It’s free and moderated daily.

I have met a lot of talented writers and bloggers there. Along with a few member’s blogs, today’s post is a short excerpt from Big D, a disturbed mind compiling his twisted-sci-fi-wheelchair-combat-post-epocalyptic-world-still-evolving short story. Brace yourself!

“Due to globalization and a deadly contagion that quickly spread out of control, billions of humans have died, and earth is now a post-apocalyptic wasteland. Very few humans are left, and the ones that are have been afflicted with a spinal virus that paralyzes anywhere from the neck down. The only remaining humans are all in wheelchairs. Some are paras, some are quads, and resources are scarce.

These survivors exist in two different colonies, and war has begun using power chairs equipped with treads and machine guns…sip and puff missile launchers…armored chairs and Kevlar backrests…wheels with flamethrowers on them…handicap accessible fortresses, and towers with elevators…suicide bombing service dogs…catheter rations…oxycodone by the thousands…electric chairs for torture/interrogation…gillie chairs for camouflage with sniper rifles attached to the side guards; an evolving breed of wheelchair ninjas.”

Aren’t you glad to be alive NOW! Can you imagine these futuristic encampments with turbo-boosted wheelchair convoys lead by Terminator, Ironman, Rambo, and GI Jane? Get me out of there; unless they’re protecting me!

What a concept! What an imagination!

Here are a few varied-themed blogs from the APPARELYZED site:

http://www.basketcasecomix.com  Kelly’s comics/art

http://joesstone.blogsport.com/ Joe’s active activities

http://www.rollingphotography.us Doug’s amazing photography
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http://www.shakacost…aptive-surfing/ surfing camp in Costa Rico for disabled children

http://shootingwithstillfingers.blogspot.com/ ocean lover’s musings

tingletetra.blogspot.co.uk  Her perspectives on SCI

http://vjm1980.blogspot.com/?m=1 Vicky’s quirky ramblings on life with a SCI

Take a click.

P.S. In next Friday’s post “Conditional Pause,” I’ll catch you up on my AWOL.

 

 

 

AWOL for a bit

I’m preoccupied with W-A-Y overdue SCI physical examinations and pressure mapping for the best cushion and wheelchair for whatever ails me, as well as getting this website completed. Minimally, I got it up-and-running for weekly posts; now, I’m putting on the finishing touches for you.
I may be silent for a bit, but will be back with a nibble from a crazy friend’s sci-fi novel of a wheelchair revolution, along with a few other blogs you may enjoy!
For now, click around my musings for something that interests you, and tell me what you’re thinking.
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Until…

 

Heart Worms

The first of January before kindergarten resumed, I invited a playmate over for my 6 year old grand niece. Upon Mac’s arrival, North Hope gave a narrated tour of my home. For the next hour-and-a-half, they shared a couple of their favorite toys, wrote their names and drew pictures with chalk on my driveway, played indoor croquet then, took turns hobbling around using the mallets as cruthes. They stopped for a snack and, afterwards, went their separate ways—one on his Leapfrog, the other on her Kindle.

While the grandmother and I were talking, I overheard an unkind tone in my grand niece’s voice. Her guest had asked if he could play the ‘Angry Birds’ game on her Kindle. She angrily said, “No! I’m watching Rapunzel.”

I intervened.

After her 3 interruptions of “but” while I tried to explain sharing, I said, “North, your ‘buts’ are excuses. Listen with your ears and your heart. Mac is about to leave. Put your movie on pause and let him play the game for a minute. You can finish watching it after he leaves.”

She countered, “But, my heart doesn’t want to.”

That’s not what I wanted to hear, but it’s all I needed to hear: A heart speaking its truth.

To North, I said: “Sometimes, the result of getting what we want right now is harder on us than the temporary sacrifice.”

And to Mac: “I’m sorry, Mac. It’s her Kindle, and she has chosen not to share.”

As he left, he spied a baby lizard in my rock garden and ran in to ask North if she wanted to see it. Offense forgotten, they excitedly ran out together to share nature.
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I am a firm believer in allowing everyone, especially children, the choice to do what their heart dictates. Don’t get me wrong. I’m not propounding to follow your own will as did Freud and Watson, and I’m not trying to be Dr. Spock or even PC, unless it’s polite consideration—simple decency—compounded with cooperation.

As children, if we’re not taught to be considerate of another’s person, feelings, and property, and how to cooperate in action and deed, as adults we’ll be irritable, hateful rascals to live with; much worse to care for with a SCI or some other life interruption.

How often do we do things our heart doesn’t want to do and are riddled with resentments thereafter? The service rendered is half-hearted (usually with tangible attitude), and the recipient senses the inconvenience. No one is blessed. Everyone suffers!

Whether you’re disabled or able-bodied, do what you do—profession, family responsibilities, errands, exercise, church, charity, or care-giving—because it’s in your heart to do it; not because someone expects, requests, requires, or needs it.

If you find yourself murmuring about any of the above or accusing someone else for your unhappiness or their lack of appreciating you, you may want to re-evaluate your expectations, intentions, and motivations for doing whatever you’ve enlisted for or agreed to do.

In this case, martyrdom is self-inflicted. It will never meet an expectation of appreciation, an intention to gain attention, favor, and praise or a motivation for approbation.

Contentment and peace come from a heart given to what it gives and does, freely; not from a heart riddled with holes from the worm of resentment.

I Can Hear With My Eyes Closed

Although it sounds like one, this title is not a “Yogi-ism.” Periodically, don’t we all think like this: that we know more than we do because we’re blind to our offensive behaviors; especially when in the throes of a disabling adjustment?  Where is the disconnect?

I think we can be so self-deluded that we perceive our weaknesses as strengths and our ignorance as wisdom. You don’t know what you don’t know, right? These are our blind spots.

For example: When I moved to Alabama after my SCI, I believed my arrogance was confidence.  It took a friend to tell me, “Cynthia, you think you are God’s gift to Tuscaloosa, but you’re the turd in the punch bowl.” OUCH!

Here me now: If you don’t learn humility, you will be the burr under someone’s saddle and a lot of buckin’ will be goin’ on! Relationships get broken by this rodeo habit.

Un-deniably, our families and long-time friends see us through glasses of our past encumbrances, and hear our weaknesses through ear trumpets[1] (or Bluetooth if you’re technologically current), blind and deaf to the positive progressive changes.

Why? Because they’ve been there observing us through our childhood and adolescent stupidities, poor decisions, irresponsible words, and adult hang-ups.

It takes seven positives to negate one negative. That takes a lot of work; for what?  A family member to ask accusatively concerning positive change in your life, “When did YOU start blah-blah-blahing?” You know, as well as I do, that family suffers short-term memory loss but are champions of long-term memories. Just sayin’….

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It’s difficult enough keeping open communication and trying not to offend in a “normal” relationship. So, what to do when tragedy strikes you or one you love, specifically with SCI?

It isn’t easy and it isn’t simple. It may be complex but it shouldn’t be complicated. (Go to Webster for definitions if you’re puzzled.) When things start to become complicated in my life, I re-evaluate my plan, my intention, and/or my motivation.

Since “it takes a village” for me to independently live my life, if someone who volunteers to help in some capacity has a conflict, or arrangements aren’t squaring up, or I judge that something isn’t important enough to do at that time, I cancel the plan. My wants do not trump another’s ease of living. Too much inconvenience is TOO MUCH.

There are always considerations when living with a disability. Keep your eyes and ears open. Like the title implies, many times there are discrepancies between what we THINK we see and what we THINK we hear.

Open your eyes. It facilitates hearing the truth.

[1] Ear trumpets showed up in the 17th century. (Beethoven used them in his hearing decline.) Because of the stigma associated to old age, they were hidden in fans, walking sticks, and even camouflaged in jewelry.

When Reality Bites

I’m a dreamer and a visionary. Some call me unrealistic; I’m creative and think out-of-the-box. Some say I’m too particular. I’m an unrelenting doer aka stubborn; and a rebel, because I’m not tied to the status quo.  Since living with a SCI, my body also has a mind of its own.

There are days that my fingers rebel–they don’t want to bend, grip, or squeeze. For those times, I’m realistic. I keep plastic glasses and unbreakable dishes, go without make-up, dress in something that goes over my head, struggle with hygiene issues, and drop LOTS of things.

When my fingers are cooperative, my hands decide to drop what my fingers want to hold, like my litter scooper. That’s when it’s easier waiting 24 hours to, literally, “pick up” hardened clumps of litter from the litter box than to scoop them.

On any of these given days when my reality bites (ramifications of disability), or the day thereafter, you will find one or more of the following items strewn on the floor throughout my home: magazines, books, pens with their to-do list or notebook, pillows, dental picks, my hair brush, my cat groomer, broken glass, scattered espresso grounds with brown streaks of espresso running down my cabinet (and brown wheelchair tracks when I forget they are there); even a meal, partially dried and thoroughly stuck to the floor under my oven. C’est la vie! (That’s life!) Or, that’s (only a SMALL part of) my life.

To add insult to injury, I used to be a neat freak; still am, somewhat. To keep my sanity, and sense of humor, I’ve learned to let go (pun intended) of what I can’t control. That doesn’t mean that I don’t cuss, cry, or throw something in frustration. It simply means: I push on. Quitting isn’t an option. (Read the “I quit. No, wait. Never mind.” chapter in my book, Views From My Chariot: A Wheelchair Oddity http://booklocker.com/books/6235.html , for expensive frustrations!)

You can call me unrealistic, particular, stubborn, and/or a rebel. I don’t mind; you’ve a right to your opinion. But…

I KNOW: Thinking out-of-the-box to solve daily limitations and their frustrations instead of complaining about my circumstance, has brought me contentment and peace.
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I KNOW: Being persistent and determined to live as independently as possible instead of expecting someone else to take care of me, has given me that independence. I’m grateful for it.

I KNOW: In respecting my life and well-being more than fearing other’s judgement of how I live it, I am gratefully responsible for, and happily free to reach, my potential.

I KNOW: As a result of dreaming and believing in my abilities instead of succumbing to a disability, I’m living my purpose.

Are you?

When reality bites, bite back…with a bulldog grip!

Blue Bird Days

For several years after embarking on my chariot (wheelchair) ride, I experienced a brooding sadness. No one knew about it, only me. After the second year, I pinpointed it to occur for a couple of months in the fall. It dissipated as subtly as it appeared.

In the third and final year, I realized it was a mild depression. This sadness resulted from my association with the month of my SCI, September, and the loss of participating in favorite fall activities and exhilarating winter sports. This realization began my resurrection.

I had already grieved the death of sojourning the remainder of my life via feet (although I do believe in miracles). Now, it was time to bury old dreams and resurrect new hopes.

I leased an apartment in a newly completed complex. I recall the prediction of a possible evening snow. With the late-night news came the announcement that, indeed, it was snowing.

I threw on a shawl, wheeled out to the sidewalk, and laid my head back as silent snowflakes sifted softly onto my face. I lingered there for the longest, drinking in the peaceful beauty, and praising God, out loud.

Yes, I remember wondering if my neighbors thought I was crazy; but my joy trumped worrying about what they thought. I missed the snow. Just because I couldn’t ski or cross country in it, didn’t lessen my delight. I was in heaven. (A “crippling” half-inch accumulation of snow caused all schools to be closed the next day. What?)

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In recognizing my sadness, I could open the mental windows for fresh ideas to circulate. My desire to do something about it, to find happiness in other ways, was the door to my freedom. Choosing to make the emotional change adjusting to disability, put me on my healing path.

My first book, Views From My Chariot: A Wheelchair Oddity http://booklocker.com/books/6235.html , is a beginner course for you to recognize fresh ideas that will revive your hopes for a promising future after disability, resuscitate mental clarity for strength to push forward, and encourage you to open the door to the productive, fulfilling future that awaits you. It’s your choice.

Still, snow is rare in Alabama, but that doesn’t limit my experiencing it. Warren Miller Entertainment provides me vicarious thrills “catchin’ air” around the world. Mostly, they film heli-skiing and backcountry skiing, WAY beyond my expertise. But this way, everyday is a blue bird day on champagne powder for me!

“On your left!”

SWUSH!