In this post, Cal gives us a glimpse into the nitty-gritty of living with a degenerative neuromuscular disease (DMD). However, he doesn’t stop there. Embedded in his post, he also gives us a glimpse into the mindset needed to persevere through the struggle. The end result? You decide.
Who is your angel?
He used to call me names
Throw paper balls at me
Would drop a toad on my desk
And on some days even three
I would help him in his homework
He never would thank me back
Only thing I got in return
Were the silly jokes that he’d crack
He used to dress so shabbily
To school, he was always late
I even told my mother once
“That’s the boy I hate”
That’s how our story went
Until I broke my foot one day
It was somewhere in February
I had to stay in bed till May
He would come and visit me
Dressed appropriate and fine
And joke that he was first to school
While others reached by nine
He would bring all the notes from school
And occasionally flowers and chocolates
My mother even asked me once
“Isn’t that the boy you hate?”
That’s how our…
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Two weeks ago, I wrote the following: ” Failure is always inevitable for a successful life.”
When I first penned this conviction, I wondered if it would ring true for you. Have you ever felt the same way?
Failure Example #1: When I was about 8 years old, my sisters and I spent the summer at my grandparent’s modest home in Wisconsin. One day, playing at the end of a shallow canal, I noticed crayfish crawling along the muddy bottom. Many times I had watched my older sisters catch these beautiful, rust-colored creatures with their bulging eyes and claws held wide open. On this particular bright, sunny day, I thrust my hand into the cool, still water and made a grab for the largest one. Brave one moment and cowardly the next, I yanked my hand out of the water with a crawfish dangling firmly from the index finger of my left hand. With adrenaline pumping and heart pounding, I shook my hand violently, and the tiny lobster landed on the sandy shore. As it sat there stunned, I seized the empty coffee can next to me and threw it at the terrifying monster. Suddenly, its shell split open and blue blood mixed with yellow slime oozed out. Just as quickly as it had coursed through my veins, my fear transformed into remorse. My pumping heart stopped: I had killed a living creature.
The lesson: Fear is often the catalyst to violence.
Failure Example #2: As a Sophmore in high school, I wrote a science fiction piece for my Creative Writing class. Looking forward to my teacher’s feedback, my jaw dropped open as I read the notation at the top of my paper: “Grade: F. See me after class.”
Waiting for my classmates to slowly filter out of the room, I approached him – paper quivering in my outstretched hand. My brain scrambled to make sense of the words that tumbled out of his mouth. Finally, I heard “plagiarized.” I protested and asked him to tell me what story I had copied.
“I don’t know, but you could have not come up with this story on your own,” he replied with unfounded certainty.
He went on to tell me in great detail his perception of me. I was quiet and did not participate in class. My previous assignments were uninspired. As a result, he decided that I could not have created the story on my own because the paper I submitted was imaginative and beyond anything I could have written. Thus, he concluded because I had plagiarized, I deserved the failing grade.
Hot tears welling up, I left the room and called my mother. She had been in the kitchen when I had written the piece at the table, and she offered to come to school to give witness. Not wanting to bring any further attention to myself, I refused her help. Failing to pursue the matter with the school office left me with no recourse at the end of the school term: that one undeserved, unfair, prejudicial, failing grade impacted my final grade in the class.
The lesson: Perception is often incorrect. People are capable of more than you think.
Failure Example #3: As I grew older, I became concerned about performance – doing a good job, being a good parent, or having a good appearance. Sadly, my focus on performance was not confined to me, but I applied the same strict benchmark of achievement to others. Even though I cared about people and what they were facing, I secretly sat in judgment of the decisions they made. My previous lesson caused me to swing too far in the other direction. I believed that anyone could do anything if they tried hard enough.
During my clinical rotation as a nursing student, I encountered patients that compromised their health with continuing questionable behaviors. One experience was the time I spent caring for a middle-aged man who had a permanent trachea as the result of throat cancer. The first time I met him, we sat in the Family Room at the end of the corridor. As I reviewed his medical history with him, he enjoyed smoking a cigarette via the trachea opening.
When I went home that night and reviewed my day, I found an unsuppressible anger welling up inside me. My young husband had died just six short months earlier from cancer. How could Mr. Patient X continue to smoke? He had throat cancer, and he continues to smoke! Why doesn’t he just quit?
Because it was easy for me to live a disciplined life, I expected everyone to be able to do the same. I lacked compassion for those who had a difficult time making changes when it came to life-choice decisions. When I decided to quit smoking, I quit. No struggle; no backsliding. As I encountered people who tried but failed to quit smoking, I failed to empathize. I even failed to realize that I failed to empathize.
The lesson: Compassion is more important than perfection.
“I have failed over and over again in my life and that is why I succeed.”
I know that I will continue to fail for it is the way of life. Often, failures are the main theme of our stories. They are the interlocking threads that make up the fabric of our life. In many ways, our failures serve us better than our successes.
Failures are destabilizing, and the resulting disequilibrium demands attention. Maybe that’s the point: We learn from our failures. They teach us valuable lessons. To fear failure is to fear life.
Welcome failures. They are the stepping stones to your destiny.
We don’t seem them much anymore in this era of digital time, sand clocks. As a young woman, I bought one on a whim. It wasn’t one of those big hour clocks that you see in movies. (Remember the one in The Wizard of Oz?) Mine was a minute timer. A simple, tiny, glass and wood device meting out seconds with a stream of white sand. Fascinated, I turned over the timer and would watch the flow. And, even though I knew that it poured at the same speed, it seemed as if time passed more quickly the closer the top portion was nearing the end. Then, I would turn the timer upside down and start the flow all over again. Time was endless.
I feel as if my life has become one of those sand clocks. Time being measured out – with most of my sand now sitting in the bottom half. Each grain representing days spent carelessly without a thought about the stream, about the passing. Sometimes I even wished time would hurry along. Anxious for the future to arrive. It’s different now.
As I lie in bed – those early mornings that are still dark – I wonder if it really is morning or if I have entered some other time continuum. For in those moments, I can feel time standing before me, not still, but shifting. I can hear it pouring out, and I wonder how it happened so quickly. No longer carefree, I caress my clock in my hands and watch time shifting from space to space, moving faster now.
Pushing against gravity, I struggle to sit up and to take hold of what time is left. Each grain is precious. If only I could scoop up some time and put it back in the top half, or turn it over just like I did with the minute timer. Even to have another minute added to my stream. But, I can’t.
There is no stopping the flow. Days slipped into days, months into months, and years into years. Until, finally, each hour stands alone. Time is no longer measured. It is treasured.
Marea del Portillo
This is a thank you blog that marks my second anniversary of living with ABI. I say thank you because the readers who have been reading my blog entries over the past year have been a strong source of support and encouragement.
It has been two years of trying to adjust to living with ABI. It has been two years of learning to compensate for my limitations. At times I will reread comments readers have posted in response to my thoughts. Some of the comments provide words of hope. Some comments are words of thanks for sharing my experiences. Other comments are simply letting me know I have not been forgotten.
In reading the comments I’m being reminded of the help I’ve been able to give others, including caregivers of those with brain injuries. Some readers have found some additional insight into living with brain injury, an…
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Initially, which did you see? How long did it take until you could see both easily and clearly?
Our eyes see more than our brain interprets. Visual cues all around us are being filtered out, and our awareness is limited to our experiences.
When you encounter a set of stairs leading to a building, what do you see? How about a soap dispenser attached to the wall above a sink? What about a store’s double-door entry with no handicap button? The last question gave it away, right?
If you are ambulant, then you probably don’t give much thought when encountering the above situations. Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting. For the wheelchair roamer, we see obstacles. In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away. And that it how it feels. We are turned away from participating, turned away because we are powerless, turned away because of an oversight.
“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled. ‘There was an oversight,’ one official conceded.” (The Week, December 23/30, 2016, p 6)
Laying the book down on her lap, she turned her head so that her good ear was aimed toward the sound.
Again, another clunk.
Not knowing what else she could do, she waited with the still patience of a deer in the woods; her heart pounding as if it were the instrument of a mad drummer.
Then, her husband called out, “I’m home. Where are you?”
“Upstairs,” she replied putting her hand to her chest. “In the pink bedroom. You’re home early.”
“Yeah, the meeting ended earlier and traffic was light. I’ll be up in a minute.”
A smile played its own rhythm across her face as she swept her hand through her gray hair. I’m glad he’s home early.
As the minutes passed, the sharp clank of dishes revealed the location of his delay. As she was wondering what could he possibly be doing in the kitchen, he suddenly appeared in the doorway. There he stood looking like a high school suitor with a vase of flowers held out; the wrinkles around his eyes made him all the more charming.
“A gift of lovely flowers for a lovely lady,” he crooned as he placed the vase on her nightstand.
“As I was driving, I found myself getting excited as the miles brought me closer to home. I know you have been having a hard time lately thinking about all the extra work that falls on me because of your disease. The more I thought about it, the more I thought about you. Because of you, I am a better person. Because of you, I wake up every morning with a smile on my face. Because of you, I love being married. I love you, and given the choice, I would marry you again – wheelchair and all. You. . .you are a gift to me.”