It was one of those mornings, Spring shining through the windows. The promise of warm breezes and light jackets. My favorite way to wake up. Smiling, I lifted myself up. Wait, no. Rather than sitting up, I had remained prone. Okay, I’ll try to push a little harder. Nope. That didn’t work. Time and time again, I tried – and I failed. You’ve heard of frogs turning into princes. Well, I guess I had turned into a turtle on its back.
I happen to be married to one of those sweetheart kind of guys. Knowing that if I quietly called to him, he would wake up and eagerly help me. I guess I could say he loves his turtle. Yet, there was no morning urgency to rise. So, instead of waking him up as I had in similar situations in the past, I decided to let him sleep. This old turtle could wait out the time with prayer. Eventually, he stirred and my prince charming turned me into his princess.
The before Rose – the one who existed before a degenerative neuromuscular disease claimed her body – she would not have been given to wait out any situation. She was always having to do, to go, and to act. There are many disadvantages to living trapped in a body that doesn’t work very well, but there are some advantages, too. This morning’s advantage was to let myself be helpless. Rather than thrashing out against an unmovable force, I chose contentment.
It has not been an easy metamorphosis, and I am not changing from an earthbound, crawling bug into something that can fly in the light. My conversion is taking away freedom of movement, incremental, almost indiscernable pieces of my life – my physical life. In its place, I am finding an upside down turtle. My choices are obvious. Do I pull myself into my shell and hide away? Or, do I lie there vulnerable and patient?
Patience and contentment are choices even when my life is not upside down.
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.
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.”
I have the unique ability to be invisible. For a while, I thought it was because I am shorter than most adults.
If that is true, I thought, how is it that children are not bulldozed down into the ground? Maybe, I reasoned, that is why kids have such high voices; it is a survival mechanism to alert adults around them that they are “down here.” Eventually, I came suspect that something else is going on – a societal preference. Our mores define children as needing protection and consideration. So, we notice them; we see them. The same is not true for the disAbled; our societal position is muddied and conflicting. As a society, we nod our heads with smug smiles agreeing that the disabled should be treated with respect.
As a wheelchair occupant, I can tell you that society does not often practice what it preaches. I will admit that a small segment of people will notice me and make accommodations. However, navigating the streets, stores, and social situations is a burdensome task. All my plans and movements must – and I do mean must – include me being responsible for everyone in my vicinity because I do not exist. Sounding alarms as I wheel with the foot traffic, I need to watch for cigarettes, purses, bags, and people who swerve in front of me. Without as much as a blush to the cheek, they admit, “Oh, I didn’t see you.”
You might think this is as humiliating as it can get, but no. Worse yet are the times that I am scorned for being invisible.
Recently, my husband and I spent the day in Chicago at Navy Pier. I was sitting out of the major pedestrian traffic path, but still blocking a small walkway. (I have to sit somewhere.) With a quick step and an urgency of importance swirling about her, a woman came straight towards me. She came to a screeching halt (I heard her brakes squeal) as my invisibility faded away. With furrowed brow and lips, she waved her hand as if swatting an annoying insect (speaking is difficult with a frowning mouth) for me to move. Realizing that I had become visible, I turned on my wheelchair. (Let me give you some inside information, electric wheelchairs take about five seconds to charge up before they are operational.) Well, the necessary five seconds was too long for her. Miss I Can’t Wait Because I Have Important Things to Do, huffed and puffed (was she about to blow me away?), told me to move (without wanting to hear that I needed to wait for my wheelchair), stomped about (was she ready to stampede me?), and then turned sharply to her left, took three steps, and walked (or should I say charged?) past me.
With her went my moment of visibility, and I retreated once again to wait for the next moment.
It all started simply enough. Jasper wrote a post (An Amazing Choice) about a young man, Marshall, with cerebral palsy. As typical for him, Jasper piece was insightful and thought-provoking. At the end of the piece, Jasper offered his readers the opportunity to contribute to his post.
As someone who has made certain discoveries and choices with how to live with a chronic illness, much of what Marshall had to say vibrated within me. So, I made the following comment:
“Jasper, thank you for sharing this post. Just recently, I have been formulating a concept that there is the Gift of Suffering. In its most basic form, the idea is that our suffering adds to our spiritual maturity. As we continue to add to our faith, we grow in our relationship with Christ. Once we trust God with our lives (and, we, who are disabled, know the meaning of this), we can move forward in our appreciation of God’s plan for us. One gift: tribulation develops patience; and patience, character (maturity). Another gift of suffering: we can then comfort others with the comfort that we received from Christ.”
Having the opinion that there can exist such a thing as a Gift of Suffering does not dimish the hardship that suffering brings with it. Do not misunderstand me, please. suffering is not a preferred way of life, but it can change us into more compassionate, patient, thoughtful, kind, loving, enthusiast, insightful, creative, and respectful people. There are other ways that these attributes can be added to our lives, but disabilities have a way of hurrying along the process.
Again, do not misunderstand me, please. I am not saying that if you have a chronic illness, you will automatically join the club of those who have found the secret of being content with their situation. It is a choice – always and daily. Jasper made that choice.
In a more recent post, he wrote:
“I was in awe when I realized how my experience and gradual understanding of the suffering surrounding my ABI reflected the comment you made a few months ago. I would reflect on your comment at times and anticipate a blog post in which you had developed your thoughts further. Talk about mutual inspiration and support. . .”
To read more of what Jasper shared, please click on The Gift of Suffering