Category: living with disability-cynthia white

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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.

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Mary, Did You Know?

For my Christmas article, I want to share my favorite Christmas song, “Mary Did You Know,” by Michael English https://www.youtube.com/watch?v=3oiw7hS4pzg .

I couldn’t say it better.

MERRY CHRISTMAS all!

Mary did you know
That your baby boy
Would one day walk on water

Mary did you know
That your baby boy
Would save our sons and daughters
Did you know
That your baby boy
Has come to make you new
This Child that you delivered
Will soon deliver you

Mary did you know
That your baby boy
Will give sight to the blind man

Mary did you know
That your baby boy
Would calm a storm by His hand
Did you know
That your baby boy
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Has walked where angels trod
And when you kiss your little baby
You’ve kissed the face of God
Oh Mary did you know

Mary did you know
The blind will see
The deaf will hear
The dead will live again
The lame will leap
The dumb will speak
The praises of the Lamb

Mary did you know
That your baby boy
Is Lord of all creation

Mary did you know
That your baby boy
Will one day rule the nations
Did you know
That your baby boy
Was Heaven’s perfect Lamb
And the sleeping child you’re holding
Is the great I AM
Oh Mary

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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.

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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!

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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!

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Thanks-giving

I like rocks. I’m good at rock-paper-scissors. And as a child, I was skilled with a hammer; not in its traditional sense. It was wielding the ordinary claw hammer cracking Brazil nuts out of their shells on our brick hearth; and, as a young geologist in my driveway searching for crystals hidden unpredictably inside its rocks. These “diamonds” were my treasures.

I also LOVE flowers! If I had frivolous monies, I would have a fresh, heavenly scented bouquet delivered weekly: Calla lilies with eucalyptus and camellias in December, cheery daffodils in January, macho pansies in February, Carolina jasmine in April, May’s Asian peonies and, to the most important, the Mayflower, of course.

On this Thanksgiving Day, I am thankful for the Mayflower departing Plymouth, England on September 6, 1620 with 102 passengers to land in the new world at my favorite rock (real emeralds and real diamonds aside), Plymouth Rock. Believing in their destiny with the hope for a better world, 102 brave pilgrims (travelers) courageously sacrificed security and comfort for the dream of independence and religious freedom.

A week or so after land was sighted (November 9th), they set foot on the new world.

In Native graves they found baskets of maize (which was probably their first meal) and iron kettles. They reburied the maize for spring planting. They also found Native American homes with mats, implements, corn, and beans of all colors.
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Although fifty-percent died the first winter, there were fifty-three Pilgrims and ninety Native Americans who celebrated the first harvest in the new world the following fall, 1621. Squanto, who served as an interpreter (She learned English, probably as a slave in England.) and taught the Pilgrims how to catch eel and grow corn, is credited for the Pilgrim’s success.

It was President Abraham Lincoln who in 1863 officially declared that the fourth Thursday in November be celebrated as a time of “Thanksgiving and Praise to our beneficient Father who dwelleth in the Heavens.”

Can you give me an AMEN!

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My Hero

Before I get to my hero, here’s the back-story:

I have three cats, but this is about “the boys,” my two male felines, Fred Astaire and Laptop.

Fred was a feral that I domesticated. Intentionally, I didn’t use the word “tamed” because his first year in captivity he eat through my screened-in porch, four times! I decided it was cruel (and expensive) trying to make him an indoor cat. Weather permitting, I let him out once-a-week.

Two years later, I saved Laptop from getting euthanized. By three-years-of-age, he weighed a hefty eighteen-and-a-half- pounds. I decided he needed more exercise than he was getting indoors. So, he and Fred get an hour romp outdoors weekly. (As of this posting, Laptop has lost 3 pounds.)

I let them out into the wild through my kitchen door. Thus, my kitchen door has become the stimulus–the association for escape, like food was to Pavlov’s dogs’ salivation responce. Even when I casually pass by the kitchen door, the boys rush me. And, as guests say their good-byes at the door, Fred sprawls in front of it or circles their legs meowing. Laptop doesn’t waste energy until the door is opened; then, he springs for it. My disability prevents me from running after them. Unless they’re napping, it’s a zoo trying to get out without a prison-break!

In spite of being stealthy and giving directions to friends not to give the boys a heads-up–a polite knock on the door–the sound of the UPS truck belied my best-laid plans.

I heard the brakes as the truck stopped in front of my house then, the sliding of its merchandise door. I went to the kitchen to meet him. Immediately, eight paws with two expectant tails pointing north joined me.

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Through a barely cracked door I coaxed the man in brown: “When you come in, stomp your feet to deter my two cats from escaping. They will try to run out.”

He affirmed by nodding his head.

With a scanner in his left hand and two large stacked boxes in his right, he side-stomped through the half-open door. As he walked toward the kitchen table, Laptop saw the opportunity and made a break for the wide-open. I shrieked.

In mid-stride, the man in brown side-pressed Laptop, now in mid-air, against the door with his left calf then, swiped him like a credit card back into the kitchen…never losing his balance or a box. I slammed the door behind him with, “Thank you! You must have pets.”

He slid the boxes onto the table, quickly scanned them with, “Oh, yes.” and was back out the door.

It was a bird…a plane…the UPS man. My hero!

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Dear Caregiver,

If you’re the lone caregiver for a loved one disabled from injury, disease, or illness, exhaustion can needlessly add to your stress. Aside from grieving the loss of the person you once knew, the future you hoped to share together as changed significantly.

Maybe you were sports enthusiasts, movie-goers, appreciators of the arts, or dedicated game-players. Now that you can’t easily go to an athletic event, the theater, museum, concert, or continue as club members, is there something You CAN substitute for it? And, would you consider offerring your loved one the opportunity to experience it with another? For instance:

Once-in-a-blue-moon, anticipate an IMAX ‘excellent’ adventure.

PBS performances, high school, and/or college drama departments are options for plays, operas, even concerts. Most schools and amphitheaters are accessible these days. I’ve found that students, as well as faculty, from the university in my town are open to performing in homes. A friend presented me with the gift of an ensemble singing Christmas carols to their own instrumentation. As well, poetry recitation, storytelling, dancing, playing instruments, karaoke, drawing, or painting are sensory experiences to share together.

Take a virtual museum tour or try this: My “Soul Soaring-No Wheelchair Needed” article on 09/14/2012  http://conversationswithcynthia.com/2012/09/14/soul-soaring-n…elchair-needed/

Concerning that serpent of guilt, its motive is to isolate and depress. Finding a network of support to assist your responsibilities is a mandatory life-line.

http://apparalyzed.com/disability-directory/disability-forums-chat/ has a forum specifically for spouses and parents caring for family members of SCI, in addition to information on health issues, technology and assistive technology, sports, travel, research/cure/treatment news, and much more for your loved one to connect with. It’s an active, informative, stimulating site.

Barry J. Jacobs’ book, The Emotional Survival Guide for Caregivers, is a soothing balm for caregivers. It is based on caring for an aging parent; yuou can learn what he has gleaned from his own personal experience, as well, as a clinical psychologist and family therapist.  http://www.emotionalsurvivalguide.com/book.htm

Just as important as reaching out for support, you must take care of yourself.

After my release from five months in SCI rehab, I lived with my sister and brother-in-law for about three or four months before leasing an apartment and going back to work. During that time, our church organized a daily schedule to relieve my, then pregnant, sister.

On a two-week rotation, one day every-other-week, a new friend picked me up around 11:30 am to carry me to her home for lunch. Back then, most husbands came home for lunch. The couple, their young children included, shared their meal with me. Dad went back to work, children took a nap, and we visited until nap was over. Normally, I was home by 4:00 pm.

It was the perfect opportunity for me to learn to adapt in different environments, build confidence in my abilities, and to make new friends.
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Not sharing your care-giving can pose a dilemma. When you have cared so attentively that your loved one wants ONLY you to assist and care for them, how can you find the necessary respite? It’s a ‘Catch-22’ situation. I’ve been on both sides.

On one hand, you were there when they were admitted into the hospital, during rehabilitation, and first came home. You know best how-to.

You doubt another knows what is best for them or will care for them as you do. You fear the repercussion between you and your loved one if you seek outside help. You may feel guilty, and you fear what others may think, if you do.

You are sacrificing and compromising your mental and physical health for theirs.

On the other hand, your loved one knows you know how-to. He/she feels comfortable with you and feels confident in your hands. Adjusting to another person will be unfamiliar and they will have to sacrifice their preferences. They fear the unknown.

For your loved one’s full adjustment to his/her situation, and turning that corner toward independence, he/she must be allowed other’s help. It’s interesting that when caught between the ‘rock-and-a-hard-place’ their wheels of avoidance figure out ‘how-to’ for themselves.

When we sulk at the suggestion of assistance from friends, other family members, or hired help, you feel resentment. When we threaten withholding our love or giving up, you feel anger. When we threaten to harm ourselves, you feel guilt and hopelessness.

Allow us these confusing emotions; only don’t take them personally. It isn’t really about you unless you fear speaking truth. If fear isn’t faced, it will be the bully pushing us around.

Love yourself enough to Seek support, Assistance, and You-time to quell the negative emotions you try to hide inside. Notice the acronym, SAY. Saying it out loud–straight-up– is the first step toward a viable solution to living joyfully and at peace with each other.

YOU ARE INVALUABLE; not just to your loved ones.

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Dear Family,

I don’t have many disabled friends, although time and again, friends and friends-of-friends give me numbers to call of people adjusting to a disability, disease, or illness. In addition to living with a disability, my counseling experience seems the perfect fit. I can listen with an empathetic ear, answer personal questions, and offer practical solutions for daily living. Before moving away, one of these women became a dear friend.

She was a go-getter. Obstacles were met with determination. She thought of tomorrow as the result of what she made of today. She was, and I’m sure she still is, a trooper. We lost touch after she and her husband moved. It was fun with the both of us rolling around together in our homes. I hadn’t been in a room full of wheelchairs since rehab!

From all the conversations getting to know my comrades-on-wheels, with the exclusion of my friend Julie, this is what I’ve found: Most succumbed to disability.

Understandably, they were faced with the drastic lifestyle change. And, the added stress of dashed dreams, the uncertainty of tomorrow, and pressure to adjust before the impact of the new reality had sunk in, brought an emotional tailspin—depression. This is when family is most important, although it was their families that seemed to be the insurmountable barrier to their emotional freedom and physical independence.

Caustic remarks fueled emotional eruptions. Innuendos, hints, and sarcastic tones of unspoken resentments from care-giving family members were destructive to all; particularly, the ones with broken wings. They couldn’t fly away to safety, and healing. They were sentenced to flop around and be pecked by unkindnesses.

The saying, “Sticks and stones may break my bones, but words will never hurt me.” is untrue. Words wound, as well.

Family should be a safe environment nurturing us back into a productive life. Even so, it’s difficult for you who love us to stand back and watch the struggle—dressing, feeding, wheeling ourselves—when you could easily do it for us. But, we must be allowed the struggles. This not only increases our endurance but also our confidence toward independence.
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Independence requires we care for ourselves, apply make-up, or shave. Adjustment asks for time for our doubts and confusion to settle. In time, we gain confidence on the slippery slope of acceptance toward a healthy adjustment. Please encourage us to hope, to make plans for a new future. When the time comes, we will have learned we will be okay on our own. After all, this is true for anyone.

We don’t like feeling helpless. We don’t like feeling we’re a burden. Help us be neither.

We are aware that it’s a difficult adjustment for you. We do know you’re suffering, as well. Your dreams for and with us have been altered. You miss the way we were. You feel guilty because you do. It’s natural. It’s okay. You have your own adjustment. Together, we can do it.

Once we gain emotional freedom, prove our independence, and begin to laugh again, you can push us around.  We’ll accept a freebie, any day.

THANK YOU!

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Where art Thou, Romeo?

Movies and romance novels propagate the fantastical delusion of the perfect other in our lives. Though it’s subliminal: “…below the threshold of consciousness.” (Merriam-Webster), these scripts imply that The One is out there waiting to meet all our emotional and physical needs, just like that. The infamous line in Jerry Maguire, “You complete me.” doesn’t help in refuting this romantic notion of effortlessly living happily ever after.

STOP! There is no such thing. Forget it! He/she doesn’t exist. Was there a Snow White and the Seven Dwarfs Two, Sleeping Beauty –After Her Awakening, or Cinderella-My Family Will Come? No, deluded romantics, because after commitment comes reality.

Because God knows the cost of true love, I believe that the physiological and psychological effects of being in love are His whimsical whammy for procreation. (You know, the surges of serotonin in the gut, aka butterflies, and the mood enhancer, dopamine, messing with the brain’s reasoning abilities.) If it weren’t for these out-of-control emotions, how many of you would knowingly walk into the most difficult role of your life? He knew the strength of emotion, as well as the emotional strength, necessary to star in this role. He is the Epitome, Price, and Prize of commitment, of unconditional love.

Although I have yet to experience it, I believe in forever love.The many couples who remain married after decades of living this forever love say that they work at staying in love, day-in and day-out. The secret is that neither one falls out-of-love with the other at the same time.

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PHOTO Heart REFLECTION SWANS LOVEA successful love story takes work and understanding. Getting to know anyone takes patience and time. It requires acceptance (of their preferences or prickly quirks), availability, kindness, selflessness, and persistence when things get painful.This is when most people throw up their hands and throw-in-the-towel on love. They choose to not deal with the conflict. What good story is without conflict? Besides, marriage isn’t a mindless emotional high. Who could sustain it?!

A committed marriage, or any committed relationship, is to selflessly support, help, and heal each other on the road to their (and your) personal wholeness. Let’s face it: the inevitable daily friction of rubbing shoulders, re-opens childhood wounds from early relationships; raw, unresolved emotions sting and irritate.

If you feel you are with The One, are you going to run away when things get tough and let another scab form over your unhealed wounds? Or, will you stay to apply (and receive) the healing salve of true, unconditional love—the ointment of your soul?