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.
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
An essential concept in design theory is the use of negative space: the area around and in between the subject matter. Basically, the idea is that what you leave out is as important as what you put in. For example, if I decided to paint a landscape, the spaces of sky and the deep shadows help support the shape of the trees. Even though the object (the positive space) is what people tend to notice, the negative space is what keeps the eye moving through and around the painting. The cooperation between the positive and negative spaces make the painting continually engaging.
The same can be said of the mind.
This past month, I found myself on an unexpected journey of fascinating concepts about the fundamentals of my beliefs. As I struggled to examine my mindset about God, love, humility, relationships and suffering, I become acutely aware that I needed to challenge my every thought. My mind moved through negative space where I struggled to write for I could not articulate the inner quest. What I held as foundational was as important as what I did not hold as foundational. The question What is left out? kept my mind engaged. As I transitioned from being the object to being the space around the object, I found myself on the precipice of reorientation of assumptions and beliefs.
Those negative spaces in my mind helped to form positive thoughts:
Let us begin to experience the world through our neighbor’s eyes; let their sorrows be our sorrows and their joys our joys.
Not everything is worth saying, much less repeating. In fact, we should probably spend a lot more time thinking before we let words tumble from our tongue.
A few days ago, I read another FaceBook rant. Yes, I confess, I try to read everyone’s post. It is a character flaw of mine. Somewhere along the way, I developed the belief that if it is worth putting down on paper, then it must have some value, some weight. After all, it takes initiative to articulate concepts. Big mistake on my part.
At one point, there was an effort to writing. Grammar, sentence structure, word choice, spelling – all the old rules of written communication. While I will acknowledge that there are new ways of communicating and that rules do morph to reflect current trends, I still am stuck on the idea that giving life to words should mean something – something of value.
Instead, we have devolved into a multicultural, international mess of inarticulate, hotheaded, screaming mass. In this tumultuous time of insanity, an eruption of control grabbing is spewing acidic hate around the globe. Chants of peace and love have been married to war and hate. Oh, and yes, we (whomever that might be), we are right.
What does all of this have to do with me, a handicapped woman trying to thrive in her Midwestern town? Everything. There are people struggling each day to “cope” with pain, disease, and despair. All the while, physically healthy people are wasting their time – and mine – finding ways to bash or belittle another person.
So, before, you write another rant about some topic that happened to fall into your mind, take a moment to think.
Wha’d ya say that was worth my time?
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Phil. 4:8
(Photo courtesy of DeviantArt.com)
I was standing at the very edge of a pool – the kind used in ancient days – a healing pool. Suddenly, children were walking toward me. Each one reaching out a hand for me to pull them out of the water. They ranged in age from 2 years to 18 years old. As I grabbed them, they stepped aside and stood behind me. No one spoke – not even me.
With the last one lifted out of the water, her hand in mine, I turned to survey the sea of children. The older ones held little ones in their arms.
We all understood that each one was responsible for the other. But, I knew that ultimately I was to care for all of them. Somehow, I needed to find a safe haven. They needed food and clothes and a place to stay. How can I feed all of them? I wondered. There must be at least a hundred children.
Flowing together, I lead the river of lives as we streamed down the crowded streets. Even now, we made no sound. Not knowing where to go, I wandered – each step with the weight of a hundred souls. As if it were the line from a psalm, the words How can I feed them? kept cycling in my mind.
Winding our way through unknown streets, I became disoriented, but the children continued to follow me unheeded. Where will these children be safe? I can’t take care of them. Look at how the older ones care for the younger ones. What am I going to do?
We came to a clearing – a piazza akin to the kind in Rome. At the far end stood a Cathedral. I headed there. Certainly, they will help me. As I drew closer, the lines across my brow disappeared, and I smiled at the children nearest me. I nodded my head in the direction in which we were headed, for an orphanage stood 300 yards away.
Nuns dressed in the traditional habits worn in the 1960s or earlier stood in the courtyard of the orphanage. Brushing dirt from her skirt as if the swiping action of her hand could remove the stains from a garment that had been worn beyond its useful years, one of the nuns approached me. Her clear, brown eyes scanned the children and came to rest on me.
“Good afternoon,” she said with a voice as pure and clear as her eyes.
“Hello,” I replied – hoping that my panic was not too evident to the children. “It seems as if I need some help. We need food and a place to stay. Actually, the children need food and a place to stay. I am not asking that you care for me, also.”
Tears flooded her eyes. “We have no food, and we are at full capacity – beyond full. There is no room for more.”
“I understand.” As I reached out my hand in farewell, she closed the short distance between us and hugged me. The embrace felt natural as if she were my sister, and I hugged her in return. Then, I pulled back and looked once more into her eyes. She understood, also. No words were necessary.
Turning away from the orphanage, I noticed the faces of the children. They calmly stood before me, waiting to follow. They understood, too. They always had.
“We have not found home, yet. Let’s continue onward,” I called out to them.
They said nothing in return. Their silence was a comfort to me. It was at that moment that I knew that my search was over. There was no other place for them; they were my children. Hadn’t I pulled them out of the healing pool?
9/22/2016 “As I walked out the door toward the gate that would lead to my freedom, I knew if I didn’t leave my bitterness and hatred behind, I’d still be in prison.” – Nelson Mandela
The above photo and quote are reblogged from the Eyes & Words blog site.
In 1962, Nelson Mandela, an anti-apartheid activist in South Africa, was sentenced to life for conspiring to overthrow the state. Due to international pressure and fear of a racial civil war, he was released after serving 27 years in prison.
Even though he had justifiable reasons to be angry and to encourage his supporters to seek retribution, he chose the path less traveled. His decision to forgive and forge forward is helped him to be a great leader. We all could stand to learn from his example.
Often, we imprison ourselves by our perceptions, attitudes, and thoughts. We react to situations rather than respond. Whatever situation you are facing right now, the choice is yours.
Do you choose bitterness or freedom?
For more of Eyes + Words blog posts, click here
“It . . .is . . .just . . .too . . .much . . .work.”
Frustration breaks our resolve, and our hearts collapse from the strain.
Chronic illness, which we must eat every day, is a fruit that’s bitter from the first bite. The monotony of our psychological diet leaves us malnourished as we struggle to find the strength to fight to live a life beyond.
So, at some point, even the brave, whose banner reads “We will find a way to be content,” find themselves prostrate on the ground. As you lean your ear to their mouth, you will hear them whisper, “It . . .is. . .just . . .too . . .much . . .work.”
Then, slowly, they bend one knee and then the other. Grasping a handicap bar, they pull themselves up. Their eyes tell the story: clear and focused on the day and its promise of pain, fatigue, trouble, and frustration. With the smiles of Mona Lisas, they ask themselves, “Do we cry out to heaven with bitter tears? Are we defeated?”
“No!” Birds scatter as the sound carries from sea to shining sea.
The more I read, the more I find a deep resolve in the Chronic Illness Community. Our struggles cannot be easily understood by those who do not experience the realities of our daily lives. At times, darkness settles on us, and we do not have the energy to fight. The length of time it takes for the depression to lift is unknown, unpredictable, and capricious. We know it will release us, eventually. However, in those bleak moments, it is just too much work. We need to remove ourselves from the demands around us.
Nevertheless, the more I read blogs written by people suffering from the wide blanket of chronic illness, the more I am amazed at their spirit. The heartbreaking and heartwarming stories carry the same underlying theme: It is just too much work, but I will not give up.
I love this aspect of my community. For the past six years, I have been determined to live despite my disease. I want to do all that I can for as long as I can. Sometimes this means tackling two steps to enter a friend’s house. Sometimes it means that I spend time with family even though I can hardly stay awake. Other times, I need to listen to my body and bow out of activities I was looking forward to attending. In the end, I have articulated my determination into the motto Never Give Up.
Often, I see wheelchair-bound people without any spark in them. My heart bleeds for them. Could it be that their resolve has been broken by daily frustrations? I watch them look at me, then my wheelchair, and then into my eyes. I smile a little; they smile a little in return. As we engage in an easy conversation, their words expose their pain. The mirror reflecting their value is cloudy, and their reflection distorted. In the midst of despair, they fuss and find reasons not to participate in any activities. Even though we both hope that the feeling will pass, their eyes reveal their secret. As they complain to me, they are covertly saying, “I don’t want to do anything. It’s too much work.”
They’re right. It is too much work – but, we will encourage one another to do it anyway. After all, what are our choices?
For the last three months, I have been working on a portrait. It is still in process; an unfinished, challenging, ongoing, all-encompassing activity. In fact, it is a series of problem-solving steps. Every brush stroke is a considered motion. Ahead of that, there is the choice of hue, value, and type of brush for each stroke.
Yet, before I even contemplated the paint colors, I needed to have a vision of what I wanted to paint. After some time spent looking through photographs (life model was not available), I made my decision. Finally, I knew what I wanted to paint, who I wanted to paint, and what I wanted the painting to look like when I finished.
This brings me to today. Just as with any creative process, there is labor. Oil painting is something I love to do; nevertheless, there is frustration and aggravation. When I am not painting, my mind often wanders back to the canvas. In fact, I take several photos so that I can examine the current state of my painting. What can I do better? Where are the problems? How can I improve the image?
I have probably wiped down and scraped off more paint than is currently on the canvas. In fact, I am positive of it. Some of what I rubbed off was good. Indeed, one image was beautiful. Nevertheless, it did not reflect my plan. A portrait is more than capturing the likeness of the person; it is an attempt to capture the character of the individual.
We have all see portraits of dignitaries or famous people. Have you ever noticed the tilt of the head, what they are holding in their hands, what type of clothing they are wearing? All of it is designed to convey an important fact. The intention of the artist and individual is for you to know an answer to a “who” question. That big consuming question for so many of us.
All of this got me to thinking: our lives are canvases. We began life with an image already imprinted before any paint was applied. Upon birth, our parents started to add the paint with their brushes. They took a beautiful plan and added to it. Some of what they applied was solid and worth keeping. Much of it needed to be wiped off – maybe, it needed to be scraped off.
As you matured, you also began to add to your image. Eventually, at some point, you took the brush out of the master’s hand. Formulating a plan in your head, you changed the image. You might even have painted something beautiful – probably not. After awhile, your portrait started to have problems. You started to ask yourself What can I do better? Where are the problems? How can I improve?
At this point in your life, you might be struggling with a disability or some other difficulty. They are wayward strokes. Unlike other times when you could wipe down or scrape off unwanted “paint,” these strokes are permanent changes. It could be that the problems have helped you to focus on what needs to be changed. Maybe, you are finding that your troubles are developing your character. As we examine our lives, we are afforded the opportunity to stand back and unearth the original vision. The discovery process, the hard work and frustration, is answering the “who” question.
It may not be a neurotypical life; it may not be what you or I envisioned for our lives. Nevertheless, the portrait is not to be trashed. Your character will shine through. There is still a beautiful portrait sitting there – unfinished.
“If you don’t know me, then don’t tell me I inspire you,” she wrote.
When I read the above statement, I had to read it a second time. Wow, I thought, someone has had enough. I wonder what happened. Was it a specific “I am fed up” moment? Or, was her aggravation a compilation of unwanted “back slappings?”
Whatever had triggered her reaction, it had denotated an explosion of words. Her anger told a story of the internal angst that grew to the point of pushing people away. Obviously, she didn’t feel as if they knew her and her struggles. Maybe this is what she meant when she wrote, “If you don’t know me, then don’t tell me I inspire you.”
Over the last several years, people tell me I inspire them. It’s an odd experience because I don’t feel inspiring. In fact, I am not given to such ideals. Energy is leaking out of my muscles as if I were running on a bad battery. With no way to recharge my ions, I am consumed by living – today – in this moment. I have no alacrity to spend on being inspiring. My drivers are simple emotions: don’t give up, do as much as I can, make every moment count, and love and encourage others.
I can’t speak for the author of the above quote. However, I can tell you about me and what the word “inspire” triggers. For the first few years, an emotional weight was placed my back the moment someone told me I inspired them. I felt confused. What did they mean? My thoughts were as jumbled as my bewilderment. Oh, no, they think I am Herculean. At some point, I will disappoint them. What do they expect from me? I am not sure what it is, but I am already carrying a heavy load. Most certainly, I don’t feel capable of anticipating their needs. What if I fail at it? How can I be inspiring when it takes my all to just get through the day? I wonder what I inspire in them? Do I motivate them? Are they galvanized? If so, to do what?
I guess that was the crux of the problem for me: I interpreted their words to mean that I was fulfilling an unspecified need of theirs. My perception of the transaction carried a meaning not intended by the other person. All on my own, I took a kind word and turned it into a duty to perform.
Recently, someone took that burden off my shoulders with a simple qualifying statement. They said, “You inspire me to keep trying.” Bells ringing, lights flashing, and clouds whisked away. Ah, ha, they are inspired. Whatever they are facing, whatever trouble is looming in their life, they are motivated to keep going. Good. I am glad. They are encouraged.
All along, people have been giving me a gift. A kind word and a gentle love. No burden or pressure to perform. It was never about me doing for them. They are trying to encourage me, to give me something in return. They are attempting to make a deposit in my “bank of good feelings.” It was my goals being lived out in others.
They are galvanized to not give up, do as much as they can, make every moment count, and love and encourage others. They are inspired. It is a good thing.
Even if you don’t know me, I hope you are inspired.
Even though muscular dystrophy attempts to lay claim to my life, I have found a few ways to come out from the shadow of my disease. One of my pleasures (and therapies) is painting. This creative form affords me the freedom to live beyond the limits of my physical world and to express feelings that expand beyond the limits that words impose. The more I paint, the more I feel compelled to paint. It is addictive and healthy. As I work to bring an oil painting to completion, I am restoring little pieces of me.
Two years ago, on a sunny, winter day, I was admiring the beautiful shadows trees were casting on the snow. The more I thought about those shadows, the more I felt motivated to paint their beauty. Then, the clouds came and refused to go away. Weeks passed without any sustained sunlight; brief moments were followed by long, gray days. There were no shadows. How symbolic! How often do we who feel as if our disability has made us shadows of our former selfs have taken the opportunity to hide?
Finally, the sun returned and the shadows could hide no longer. Fearing that they would quickly retreat again, I had no time to waste. Making changes to his day, my husband lovingly agreed to take some pictures with the hope of capturing those elusive beauties.
As soon as he returned home, I scrolled through the photos until I found the one that revealed their complex beauty. Taking printed photo in hand, I went to work. After some time, the painting was finished. The shadows would forever declare their presence to the world.
Now, for the final step: varnish to keep the elements from eroding and dulling the paint. Some artists advise that there should be a six-month waiting period before varnishing a painting. However, this time, I followed the advice of an expert who counseled that a painting could be varnished right away – if done within two weeks of the original drying time. So, after a week-and-a-half, I started to brush varnish on my painting. Suddenly, to my horror, I realized that the white paint was smearing and making the entire painting milky in appearance. I stopped immediately,
With painstaking effort, I slowly removed the varnish from the painting. Using dry brush after dry brush, I wiped away as much of the milky, white paint as I could. Then, I left the painting on the easel. I wondered, “Could it be restored?”
Returning to the painting two days later to assess the damage. There were areas that needed to be reworked. Mixing the paints slowly, I contemplated how to go about the process of showing those shadows how beautiful they were. Could I remove the stains? Would the shadows allow themselves to be restored?
There we were at WalMart. I know, ugh. Shopping is not one of my favorite activities and, if I were to pick where to go, it would not be WalMart. It is too big, and I find it exhausting. But I needed to get a spill-proof cup because I have a tendency to tip over my water glass in the middle of the night. Anyway, the three of us (my husband, my caretaker, and I) were out shopping.
At first, I thought I would just head out on my own. It seemed reasonable: I would roll my wheelchair down to the car, press the button on my handicap-conversion van, roll up the ramp, and transfer to the driver’s seat. Of course, clamping the wheelchair into place presented a significant problem. With myotonic dystrophy weakening the muscles in my hands, there was no way I could secure my wheelchair. So, the necessity of someone coming with me, and both companions wanted to accompany me.
It is a wonderful life I have to enjoy the company of two people who care for me with loyal devotion. However, I am ashamed to admit, sometimes it drives me crazy. Buying the cup, for example. As the three of us approach the aisle, my two loving companions spring into action. As with the flutter of two birds, they set about selecting cups and showing them to me. As I reject each choice, they happily return it for another option. Now, they are trying to find what I am looking for and are doing a fantastic job of it. Nonetheless, I start to feel overwhelmed and cranky.
Rather than having the opportunity just to look at the display, I find myself having to explain what I am looking for and why their selection does not fit my requirements. At this moment, I feel as if I have lost adulthood status. No longer am I in a position to take care of myself. First, I can no longer just hop in the car. Second, I cannot drive myself to the store. Third, half of the shelves are out of my reach. Lastly, I am not in a position to quietly make a minor purchase choice on my own.
As I think back on this scenario, it occurs to me that I could have told them how I was feeling. It would have been easy to say, “Thank you for being considerate. However, I would like the opportunity just to look at the cups and ask you to reach the ones that I cannot.” Yes, it would have been easy. Yet, I did not. Maybe next time I will remember.
Living in a wheelchair has robbed me of my adulthood in many situations. Most of the time, I can acknowledge the feeling, understand the source, and avoid the tension. Sometimes, it just gets to me. I am not proud of myself. It is a weakness.
In some ways, it is akin to what elderly people have told me. As they become unable to care for themselves, their children start to take on the parental role. This status change upsets the emotional wellbeing of the parent-adult. For the elderly and for me, to lose status and become dependent on someone else is a significant loss of equilibrium. I believe it is the result of the loss of the I Can Do It Myself feeling established in early childhood. It is when you are no longer you.
Probably, you remember those first occasions of being able to tie your shoes or button your coat. Those were glorious moments of independence and sense of self. Sadly, as we weaken from disability or the aging process, those moments are slowly replaced with attempts to reaffirm our status. But it is a losing battle. The body will not obey, and we are slowly delegated to a subadult status.
This is not the end of the story. Even though my body is wasting away and I am losing my status, I am afforded the opportunity to mature in my spirit. For as I develop patience, I cultivate the character to understand that my struggles are momentary, but my hope is eternal.
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (2 Cor. 4:16-18)
Revised August 9, 2016
Originally published Feb. 23, 2016
Uggh, 4:23. I don’t want to wake up. Breathe deep. Take it in, and, now, let it out – slowly. Relax. Go back to sleep. No thinking. I wonder, what should we have for dinner tonight? No, no thinking. Go back to sleep. Relax. Good morning, Lord. Thank you for the day. ‘This is the day; this is the day that the Lord has made. I will be glad and rejoice in it.’ No singing. Go back to sleep. Relax. Maybe I will paint this morning. I wonder if I should add a little bit more Burnt Sienna. That will make it warmer. Stop it! No thinking. Relax. Go back to sleep. I wonder if I will be able to take a nap today? I have been very weary lately. And, now, I am awake instead of sleeping. As usual, Beth was kind yesterday. She’s a real trouper. Always right there. Helping me stand up for songs. Why can’t I just stay seated? It is getting hard to stand. Cut it out! Go…back…to…sleep. My stomach is starting to churn. It’s no good getting all worked up about not sleeping. Oh, my. I am awake. Yep, no trying to deny it any longer. I wonder, do other insomniacs go through the same routine? I might as well get up. What time is it? 5:13. Uggh.
Insomnia is not really making me crazy, but it does play havoc on the mind and body. Lately, I have been weary to the point of crying. The feeling is not fatigue; it is beyond fatigue. Thus, when insomnia kicks in, I feel challenged beyond my ability. How can I operate on little sleep when I am already weary from fighting the war against my disease?
Every day is a struggle, to reiterate, every day is a struggle. My body is at odds with my mind. I am grateful that I can think, and write, and paint. Nevertheless, the fight takes energy that I don’t have in reserve. Picking up a glass of water takes forethought and purpose. Eating is a mindful activity. Cutting my own food is nearly impossible. Every little thing takes determination.
My mind swirls. With the sand running thin on the hourglass of my life, I want to give everything now – not get, give. So, I push my body, and my body is starting to push back – hard. Weariness has set in – deep, dark weariness.
Now, I am fighting on two fronts: my physical body that demands to do nothing and my emotional well that has run dry and demands rest. Two fronts, both wanting me to stop. Just stop doing, they cry.
How can I stop? What will remain unfinished?
My mind swirls. The waves of confusion are crashing over the sides of my ship.
Maybe, insomnia is making me crazy. Wait, I still have hope. Sitting right there in the middle of the storm.
How many of us are operating at a less than an ideal energy load? Disabilities take an additional amount of emotional and physical effort not easily understood (if it is even possible) by neurotypical people. However, we all feel exhausted, at times, from life’s challenges. The day-to-day battle is not mine alone to fight. The storms we face churn our hearts with an ache for calm.
As we wait out the raging emotions and the weariness, our patience will bear fruit. We find a place of refuge. Suffering is a vehicle that can drive us crazy for a season. But the insanity will subside. We become resilient. We know hope – for hope is the child of patience. And, hope never fails.
What would I do if I lived alone? It is 5:30 a.m. Waking, but still asleep. Nature calling me out of my dreams, I roll over and sit on the side of the bed. Only I misjudge and end up on the pillowtop edge of the mattress. Uh oh, I think. Scrambling as only someone with weak muscle strength can hustle, I try to push myself up. No point in trying that maneuver; I am going down.
My husband (who sleeps on the cusp of alertness) asks me, “Are you okay?”
“Nope, I’m falling,” I reply as I struggle.
Hustling as someone with real muscle strength can hustle, he is on the side of the bed and holding me. The comedy of the situation is not lost on me. My husband moving with the speed of The Flash, and I moving with the sluggishness of The Blob. Together we aim for a safe landing. Failure. I am now at a perilously steep angle. The Flash is now The Hulk, and he lifts me up.
The Hulk calls out, “Push. One. Two. Three.”
Ah, that magical number, three. I love it. Somehow, it is the key to success. Between his superhero strength and the incantation, I am now sitting firmly on the mattress. Disaster averted. The floor will need to wait for another time.
Today’s routine was number four in the last three years. The odds of fending off winding up on the floor is a 50-50 proposition. This morning’s event was precariously close to changing the odds in favor of the floor.
Every time I see the neurologist, they inquire into how many times have I fallen since my last visit. The assumption is that I have fallen. So, I surmise that falling is a hazard of myotonic dystrophy. Makes sense.
Now, sometimes falling is a good thing, such as falling in love. Other times falling is an unpreferred result, such as falling on the floor. I wonder, could the preposition be the culprit, in as opposed to on? Probably not. Just a wondering thought.
All this brings me back to the question, What would I do if I lived alone? The answer is obvious: You can’t live alone. Another loss hidden away in the sheets of my life.
I cannot live alone.
We begin life dependent on others for our survival. All through those years, we yearn to be free, to be independent. During our years of independence, we make our decisions and determine our fate. Eventually, and it will happen to all of us, we return to a state of dependence. We learn, no, more than learn, we are forced to depend on another. Otherwise, we cannot survive. It is the final cycle. And, I have entered it.
Suffering and loss will happen; they cannot be avoided. If I am willing to be patient in the midst of hardship, I will develop character. The kind of person who will find joy because hope resides alongside the hardship. Rose Wolfe
Recently, I read Jasper Hoogendam’s blog post Two ABI’s Went Cycling. Now, you may be thinking that this story was about high adventures experienced along the way, but it wasn’t. There was no agony nor defeat. There was no moment of epiphany. Rather, it was an articulate accounting of the small miracles of hope and happiness when Jasper and his friend (both of whom have Acquired Brain Injuries) made the courageous decision to go for a bike ride.
Early on in his re-telling of the day, Jasper makes the following observation: “Being ABI’s our 15 kilometer event needed some careful advanced planning. I just can’t decide to bike 20 or 50 kilometers on a whim as I did pre-ABI.” In the end, the day turned out to be a success, and he found that as he took care of his friend along the way, he was taking care of himself in the process.
This is a heart-warming story of kindness and friendship, and an ableist might put their computer down with a smile and think about it no further. At first glance, Jasper’s story is straightforward and on point; however, on second reading, you will discover he exposed the underbelly of all of us who live on the fringe of the neurotypical world.
In fact, he put the heart-rending, courage-taking in bold type: “I just can’t decide to. . .on a whim as I did pre-.” Those days of “pre” exist outside of the disAbled’s arsenal of options – for our lives are filled with careful planning. And, even then, we often do not get all contingencies covered. For example, one summer day, I encountered a woman and her husband in a parking lot just outside an art fair. As we approached, we saw that they were fussing with her electric scooter. After a brief exchange, we discovered we could be of no help. They had checked the scooter for power before they left their home, but now it would not start. With disappointment etched on her face, she said, “It looks as if we will need to just go home.”
So, even with all the careful planning, from the moment Jasper and his friend made the decision to venture out on their bikes, they were being courageous and hopeful. Even the simplest details of weather forecast, packing a lunch, remembering to take breaks, pace setting, and reasonable limits, some unforeseen event could have tripped up his travels. For someone who could triple the distance in those days of pre-ABI, Jasper would have considered these items without much ado. In his new life, they took center stage because they helped to ensure the success of the trip.
Facing the energy drains, the fears of failure, and the challenges of engaging with the general public can keep the disAbled at home. We hide behind our walls of isolation, faces lit by the glow of a computer screen. Deep within we dig, looking for puzzle pieces of ourselves. What do we look like? Who are we? What can we do?
If we refuse to face ourselves, we cannot put the pieces together. Summoning up the courage, we take each broken piece as if we were archaeologists holding pottery. Slowly, we are redefined. Each day, we gather one more piece of who we are. Courage matures and hope is born.
Finally, we emerge. Some of us scrape off the clay particles and say, “Today, I will venture out. I have hope.”
We all suffer from hopelessness. Those what’s the point, who really cares, whatever I do won’t matter thoughts can drag you into an Eeyore existence without notice. One moment, you are making plans and whistling a tune, then, bam, the next moment, you are moping around.
This emotional roller coaster of life begins the moment we enter this world. Although those with chronic illness have a slew of additional weights (pain, limitation, physical and emotional distress). If we are not careful to watch what words are floating around in our minds, we can lose hope. What happens in those moments when we move from hopeful to hopeless?
Recognizing the catalysts of hopelessness could help to alleviate the depression, and maybe, we will move quickly from hopelessness to hopeful.
You know who they are. These spewers of hateful messages. They love to find fault in you and the world Underlying their crushing message is the motive to oppress you. Their desire is to keep you contained, controlled, and powerless. If you can’t avoid them, restrict their influence on you. Refuse to believe what they say. Toss their garbage out.
Do you feel disconnected, alone, unwanted? Maybe you are struggling with feeling unworthy of love, care, and support. These emotions can drive you to withdraw which, in turn, will exacerbate the situation even further.
Having a purpose-driven life can keep you from falling into the trap of feeling afloat. Every person has abilities. Often, the tendency to compare one set of unique attributes with another person’s can lead to feelings of inadequacy. Honestly, every person can be a gift to someone else. If you set out every day to encourage, love, and help others, you will find hope. For in the process of reaching others, you are giving them hope. And, hope is contagious. You will catch some for yourself along the way.
When we feel incapable or unable, we focus on all that we cannot do. This is especially the case for those with limited opportunities due to poverty, learning disabilities, and physical handicaps. You cannot change many things about your life, but you can change your mindset. Rather than focus on what you cannot do, focus on what you can do. And, you will find, you can do a lot.
This overwhelming sense of doom is one of the strongest drivers to feeling hopeless. If you find yourself facing serious financial problems, life-threatening illness, or chronic illness or pain, hopelessness can settle in for the long term.
The complexities of mind-spirit-body dynamics are often ignored. We are driven by our beliefs, thoughts, and emotions. Our desire to control our lives can be so strong that we harm ourselves. We hold our opinions too strongly. Our grip on our reality refuses to consider other possibilities. Examining your thoughts and replacing negative conclusions with positive attitudes can be one of the most productive habits you adopt.
Our mind is very powerful, and we ignore the talents of our spirit. Every thing that you can see, touch, smell, feel is temporary. Your spirit is waiting to respond to your command. Let yourself move beyond the physical world. Take the opportunity to adjust to your new reality. Don’t cope, hope.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. (2 Cor. 4:16)
Rituals and pleasures. The rhythms of life that comfort us. Firing up my laptop, I grab my cup and take the first sip of the day. It is a ritual and a pleasure.
Cascading emails pop-up on the screen, and I scan them quickly looking for a missive from my friend, Beth. She is special to me. When we first met a few years ago, I liked her immediately. Even though she is a water person – as in she lives on a lake, has a boat, and I am a land person – as in I live on 10 acres of woods, no boat, we have discovered a commonality of spirit that is deeper than the depth of her lake or the density of my trees.
In 1972, Beth was still a young woman when she developed an older person’s disability, tinnitus. Without pause, the annoying sensation has grown louder over the years. Today, it is a shrill referee whistle. All day long – every day. Without end. As if this weren’t enough, Beth now has no normal hearing left and hyperacusis. All of which makes speech conversation tedious and challenging, but writing is one of her passions.
Because I have myotonic dystrophy, my energy levels are arbitrary and capricious. Small events for the able-bodied demand that I have the fortitude of the Energizer Bunny. Often, I make plans only to cancel them owing to the unstoppable leak of energy.
So, we write to one another. Beth writes when she can, and I do the same. We share intimate, spiritual matters via email. We talk about how our suffering has drawn us into a deeper, inner, soul-searing, heart-clawing reality. It is a ritual and a pleasure.
Lately, we have been talking about the gift of suffering. Strange? How can suffering be a gift? Are we just two nutcases? Do we like self-flagellation? No. No. And, no!
Everything that happens to us can be a gift – as in contribution. However, the gift is only found as we grabble with our pain and misery. When we suffer, we have an opportunity to grow. This severe hardship will often bring us crashing to the floor, or wall, or ceiling with frustration, anger, and despair. Nevertheless, as we patiently wait for the crises to pass, we find a contribution to our character. A little gift of tenderness towards others.
We are not fooled. The contribution is withheld until we have tasted the bitter nullification of our previous lives. Recently, my friend wrote: “Suffering is a form of abstinence.” I like this idea. Not because I like abstinence; rather, there is a profound truth that we, who suffer, are denied. Abstinence is forced upon us.
What and how we think about these external restraints can have a deleterious or propitious affect on our character. Some people claim that suffering will eventually cause hearts to be hardened; yet, others claim that we become more tender. I think the choice is ours. Both outcomes are possible.
If we allow the chronic disease, the pain, the tribulation to be the cause of internal bleeding, our lives (our being) will drain away. Then, our hearts will become necrotic. We will become the living dead.
Several years ago, I came to the stunning realization that I was wasting my life. My pre-judgments were determining my perception of events. I should have figured this out long ago, but I was too busy reacting.
You’ve done it, too. Someone looks at you. You interpret the look, and, boom, off you go with your emotions riding high.
We have a predilection to interpret events based on our assumptions. In fact, we will often lie to ourselves. “I am right.” We tell ourselves. No reason to test the veracity of what we think. Humbleness is a lost art – if it ever was an art.
I wonder, do we have the capacity to be less reactionary? Why do we jump from perception to conclusion? What dusty rooms in our collective minds need cleaning out and rearranging?
Every time we agree or disagree with someone, we are reinforcing a belief – the unspoken adherence to a system of truths. Most often, we do not bother to test out our theories before we adopt them as truth. It is this factor alone that bothers me the most. I know I am guilty as charged. Yes, I have a trailer truck of conviction debris that I am pulling along behind me.
Acknowledgment is good, but how do we unshackle ourselves from our burden of labeling others (and ourselves, also)?
Let’s start at the beginning. How would we describe our childhood, our adulthood? What did we expect to happen along the way? What do we believe to be the reasons behind the events of our story? Come on, we all have a story. We have written it and are now living it. It is our reality.
The next part gets tricky. Our reality feels very real to us, but it is not reality. Huh?
I don’t know which came first, expectations or beliefs. What I do know is that they are circular. Our expectations and beliefs drive each other. The end result is our reality. Nevertheless, we can change it. How? By changing them. Challenge our expectations, beliefs, and interpretations. It may feel as if our landscape is quicksand, but we are not stuck. The way out is through the pathway of self-examination.
The journey to a new reality begins with a reinterpretation of our story and, by default, a redefinition of our personal reality. Start telling yourself new stories. Not only who and what you are, but tell yourself new stories about the guy you pass every day. You know, the guy begging for money.
How would you describe him? Have you written him off as an alcoholic, a druggie, a bum? What if you are right? Does it matter? Does it relieve you of compassion?
One time, I was sitting in my wheelchair waiting for my husband to pick me up after a doctor’s appointment. It was a beautiful summer day, and I rolled over to a nearby park. Across the street was an elitist residence tower for the rich and wannabe famous. My book was tucked behind me in a bag just out of reach. As the noble walked by, staring straight ahead, I attempted to get their attention.
“Wait, I don’t want any money. I just need . . .”
“Please, could you . . .”
Over and over again, I tried. Not one person even turned their head.
Finally, a little woman pushing a shopping cart piled high with plastic bags, shuffled over. “Do you need help?” she asked.
“Yes, would you reach into my bag and get my book out?”
She reached in, handed me my book, and smiled at me.
I smiled back.
The rePurposed Life
When I started writing this blog in February, I wanted to engage the topic of living outside of our disAbilities. After all, everyone struggles with a disability and not all struggles can be neatly categorized (nor acknowledged by the afflicted).
My disAbility is obvious. Your eyes rivet to my rolling chair as I enter the room. The first seconds of meeting, we negotiate a social awkwardness. Eventually, I come up with a lighthearted quip, hoping to put everyone at ease. With children, it is different. They stare at me until their parent becomes uncomfortable. I don’t mind their straightforwardness. They are real and honest with curiosity. As our eyes meet, I smile and try to elicit a response. It allows me to engage with them about their unanswered questions.
Anyway, because I have failed and succeeded in my new role as a physically disabled person, I thought my focus would be on encouraging anyone who is struggling. My mistake was focusing on “disabilities.”
My life is not about my physical and mental limitations. It is about finding a rePurposed Life. Moving forward from a scared child to a petulant youth. . .until, finally, an earnest adult. But my disease changed me further. It was another twist in the narrative of my life’s story – a page turner.
Because of (and in spite of) muscular dystrophy, I reexamined my life again. I found it wanting – lacking vision. What did I desire? Over and over, I asked myself to define my purpose. The answer exploded in my heart as I watched one, two, three, four, five people die. What legacy did they leave? What legacy did I want to leave? To love others (family, friends, neighbors, enemies) and to encourage them.
Yes. It was time to take the focus off of me, the petulant youth who never grew up. I want a life that has meaning – with God centered.
No preaching. No condemnation here. Just honest conversations about how we think and what we do.
So, I am thinking about renaming my blog from Living Free with Disabilities to The reRepurposed Life. (The url will remain http://livingfreewithdisAbilities.com.) What do you think?
You can’t choose what happens to you,
but you can choose how you respond.
Recently, Faith McCord observed that “(W)e choose happiness – a quieter, deeper, different kind – despite and because of poor health.”
Having lived with myotonic dystrophy for years, I can attest to the veracity of her statement. Chronic illness demands an awareness not only of our bodies but our disposition, as well. Suffering puts everything in perspective.
Suffering Changes Our Reality: So much of what we think or feel is metamorphosed not only by what happens to us but by how we interpret those events. Have you ever experienced something so intense that you felt as if you were observing life rather than living it? Our senses become heightened. There is a similar experience for those who suffer. Over time, we become more real.
A good example of this is in the children’s book The Velveteen Rabbit:
“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse.”It doesn’t happen all at once. . .It takes a long time.”
Facing chronic illness drains the superfluous sentiments from our lives. Over time, we start to care about what matters. Reality is redefined. There is a realness that we did not feel before. Acquiring things is not as important as having basic necessities: health care, medical equipment, and physical and emotional support. We learn the value of friendship and love.
A Mystery of Suffering: We learn something else, too: Happiness is not happy feelings. There is the “quieter, deeper, different kind.” For those of us who have had to endure hardship develop a maturity. The deep cut to our heart, the anguish felt to the core of our being opened us, and we became real. We are wiser.
Recent events in the United States, Brussels, France, Somalia, and Afghanistan have changed reality for the world. There are no safe places. We have been exposed to a sudden, permanent transformation. The chronically ill have had a permanent transformation, as well.
Of course, the psychological impact of terrorism has a unique niche. However, suffering demands attention. We cannot ignore our pain, our depression, or our anxiety. Solutions need to be found.
In trying times, we can choose to grow more real. In the easy times, we can choose to enjoy. In all times, we can choose happiness; the quieter, deeper, different kind of happiness.
Faith McCord is the author of the site Oscar Dandelion WordPress (click to view her blog).
Personal struggles explode into public arenas. Those with shredded souls seek disconnection – wanting to destroy what they don’t understand. They claim their hate is an act of love. In the aftermath, not only is flesh bleeding out, but also the hearts of those who hate the hate.
Challenges are now part of every life as we claw at the chains to live beyond the prison of madness. In an attempt to throw off the albatross of hopelessness that has been tossed around our shoulders, we can actively take steps to find hope. It will require courage.
Courageous Step One: Have faith that we are the difference (not will be, not can be, are). We hold the key. Let’s examine our thoughts. What messages are we telling ourselves all day, every day? Put aside anger, jealousy, and revenge. As we change our thinking, we will evolve. Let’s answer the call to accept, tolerate, and love others.
Even as we continue to face lunacy, our standards of behavior must not waver. During World War II, resistance movements existed in every occupied country. The current war is not limited to countries. The other world wars were misnomers. We are in THE World War.
Courageous Step Two: Plan a course of action. Even though we are being forced to travel on a road paved with the souls of innocents, let’s work patiently toward positive change. We have choices of how to behave in every situation. The time to sit on the sidelines has passed. We can no longer wait for someone else to make sense of what is going on in the world. It is senseless.
Courageous Step Three: Find purpose in the small things. Everything we have experienced or are experiencing has life-giving potential. As we work through the pain, let’s look for the gift. How can our heartbreak work a greater good in us, in others? What can we learn? How can we show compassion? Some of our greatest moments are those when we touch the life of another. Replace selfishness with selflessness – one act at a time.
Courageous Step Four: Don’t condemn others. Mankind has always acted with inhumanity against humanity. Let’s not fall into the trap of hating in return. Attaching reason to a madman’s behavior is impossible. We cannot comprehend the motivation behind someone who is willing to shoot people at random, bomb an airport, or run over bicyclists. At the same time, letting our hearts be poisoned by their actions will kill us, also.
There have been too many atrocities. It would be easy to focus on the horrible actions of others. Nevertheless, we need to start with ourselves. Examine our lives. Do we condemn what we don’t understand?
Courageous Step Five: Believe in God. Let us take an honest look at how we have managed our lives. Have our choices served us well?
For me, my faith in God gives me the strength to hope and to act. It is hope which has kept me going through my darkest struggles.
As you may already know, for the last year, I have been looking at my life and how I treat people. I am convinced that it is possible not only to love my neighbors but to love my enemies, as well. What has happened and will continue to happen in the world is demanding that I move earnestly towards my destination.
However, I know one thing: The madman is mad. He gave himself over to evil.
For our struggle is not against flesh and blood, but . . . against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. (Eph. 6:12, NIV.)
I have hope.
We might be tempted to think that life should be as easy as walking on soft, powdery sand. I don’t know how this idea started or, even, when it started. Certainly, it was not the mindset of people 100 years ago. Our grandparents knew that life was hard. Not only did they experience civil wars and world wars in their lifetime, they knew what it was like to miss meals and live without heat and clothes. The Great Depression was a hard taskmaster, but those who lived through the tribulation learned valuable lessons: work is hard, health is precious, happiness is a choice, and life holds no promises.
My grandfather managed to get his wife and young son out of Eastern Europe between World War I and World War II. When she arrived in the United States, my grandmother worked as a cleaning lady at night and prepared all homemade meals, cleaned her home, and used a wringer washing machine to wash clothes. They were hard-working people, and they were happy with their simple life.
But, not us. Even with bombings, terrorism, and school shootings, we persist in our fantasy that everything is possible if we just believe. Somewhere over the rainbow, we adopted a cultural delusion that “dreams really do come true.” In fact, we hear it, we see it, and we proclaim it as “the American Dream.” We all know the mantra: If we work hard, we will be successful (as in rich); if we fail, then we didn’t try hard enough. If we dream it, we deserve it. All of our aspirations are within our grasp.
What happens when dreams fail? How do we cope with disappointment? I would venture to guess that there are more people on the road of sharded glass than on the ladder of golden rungs. Our lives have left us in pain as our ambitions bleed onto the landscape. Nevertheless, hope does spring forth from the sanguine fluid.
Being disAbled has afforded me the opportunity to meet many people facing chronic illness, pain, and the accompanying fear and disappointment. We belong to an exclusive club as our lives are parsed out in days segmented by fatigue and frustration. Still, I am amazed at the presence of hope. Of course, we have our days of ranting against the system. We are ignored, marginalized, and patronized. Yet, we are a positive, realistic bunch. How did this happen?
Living with a chronic illness requires adaptation. As we adapt, we learn how to be creative and flexible. Just like the Great Depression taught our grandparents hard lessons, our suffering has schooled us on being patient, persistent, and prepared. We have faith.
The road might be paved with broken glass, but because we have faith, we have hope.
Is it even possible to feel hopeful?
As I face the demons of unrealized dreams squarely, it occurs to me that they are just that – unrealized dreams. Nothing more. Should this loss be so traumatic that I should feel hopeless? Is it even possible to feel hopeful?
Adding to my personal loss, the stress of living in a world where tens of thousands rally around banners of hate, my heart aches for those who are facing loss caused by these monsters of society. Is it even possible to feel hopeful?
Yes, it is. I sit calmly with hope in my inner being. Not because I refuse to face the turmoil of loss, but because I have a faith that goes beyond today.
When I first lost mobility and the resulting loss of dreams, I was frustrated at how little I could do and how little I felt understood. It was overwhelming; not only was the world’s situation hopeless, but my medical team held out no hope to me, as well.
Over time, it occurred to me that I needed to examine my thoughts, challenge my mindset, and make decisions that provided me with a clear vision. My struggles would serve me and others. Each challenge would work a deeper truth within me and, as a result, carry the potential of life-giving gifts to those around me.
Hope keeps me going through my darkest times. As I encounter challenges, I have the option to face my tribulation with faith. In truth, the greatest moments are those when I have suffered with purpose. For suffering produces patience, and patience develops character. As character matures, hope emerges.
“To live without Hope is to cease to live” ~Fyodor Dostoevsky
I am going to net it out. No extraneous words. No gentle approach. My disease is not the result of my belief or unbelief. Period.
There is a subset of people who think that they have a special insight into my disease process. They are not part of the medically trained, and they do not have myotonic dystrophy. In fact, they don’t live with, nor are closely related to, anyone who has a chronic illness.
What they do have is an inordinate belief in themselves. They are ordinary people who think they have special wisdom Maybe they do, but I’m not buying it.
If they do have special wisdom, then why are they so obtuse? Instead of considering the harm they are causing, they speak their truth as if they were imparting an here-to-fore untapped resource. They single out the weak and sick. We, who are already fighting against our diseases, must also have to hear how it is our fault. Ultimately, we are the cause of our suffering.
I am on a rant today!
Imagine being told that your height is the result of your unbelief in the power of positive thinking or the result of your childhood. Yes, I did just say that.
A couple of years ago, I was blindsided by a woman who approached me with her special knowledge. If I would only open myself up to let the Supreme Being (her god) heal me, she admonished.
“Your childhood is holding you back,” she emphasized, “Your body is being traumatized by negative parenting.”
Somehow, she had decided that she knew the cause of my disability.
What she didn’t know was that I have myotonic dystrophy and that it is a genetic disease. Her lack of knowledge didn’t stop her, though. Her special insight had revealed exclusive divination to her. She was only the messenger, and I needed to heed her message. She was adamant and convinced. Oh, there was not a doubt in her mind. This wisdom was so rare that I needed her to tell me.
This was not an isolated event. Strangers and friends(?) all feel at liberty to reveal to me how I can be healed if only I believe in whatever they believe. Oh, of course, I also have to believe that they are in possession of revelations.
The latest experience occurred just a few days ago. Someone I have known for years sent me an email in which she told me that she, too, had received a special revelation. Interestingly, her message was vastly different from the woman I mentioned above (and the others that have approached me over the years). In the email, my friend told me that I needed “just to believe” that there was no such thing as disease. If I could just un-believe in the reality of illness, then I would not have myotonic dystrophy. Her reality is the reality.
My counsel to all that wish to share a truth: Make sure it is the truth and not a truth. Second, seek a second opinion about that truth.
To all the special messengers: If your words are dishonoring, disrespectful, and disheartening, keep your message to yourself. Period.
Recently, I heard someone say that they think people are basically good. I am not so sure, anymore. I believe it is more likely that people are basically selfish (me, included). Just take a moment to think about your thoughts and behaviors. When driving, do you practice generosity or are you more concerned with getting to your destination? How about grocery shopping? Do you look for the shortest line and make a beeline to it before anyone else can get there?
Okay, okay. I know. I am bringing up minor instances of selfish behavior. However, it does reveal that our underlying, well-hidden nature is more base than we are willing to acknowledge. Still, somewhere along the line, we were taught to be kind (some more than others). Remember being forced to share? Over time, the socialization process became ingrained and, if nothing else, we learned to be socially prudent and, maybe, even kind. Probably the majority of people fall into this category.
Can selfishness and goodness co-exist? Are they mutually exclusive? Is kindness equivalent to goodness?
Recently, my caretaker and I were on the highway. Suddenly, right in front of us, we witnessed a van careen into a semi-truck. With horror, we watched the truck skid, flip on its side, and, within seconds, burst into flames. Without time to think, people stopped their cars and ran to the injured. Because of these kind strangers, the truck driver was pulled out of his cab just before it was entirely engulfed in a raging fire. Yes, these people ran toward danger to help a stranger and displayed courage and compassion in a moment of no-time-to-consider. Am I disproving my point?
In contrast to the few that ran toward the injured, most people either drove off immediately or stood on the sidelines gawking.
So, we have the lovers and the others. There is a third group. They plan and conspire to maim and kill others. Are they truly evil, I wonder? Are they the modern mini-versions of Hitler and Idi Amin? The recent bombings in Beirut, Brussels, Pakistan, and Paris are evidence of hearts gone wrong. They are the haters of the world. Do they hate themselves, also? Is that why they can self-destruct?
Do we see ourselves in them? Do we hate? How much time do we spend with the word “I” rattling around in our minds? I want, I need, I have, I deserve, I . . . ad nauseam. At one point in history, the world changed from spending our days worrying about our next meal to spending our days worrying about ourselves.
Hate does not spring out from our hearts spontaneously. We feed hate a regular diet of jealousy, pride, greed, envy, and self-importance. As we focus on all the slights and offenses we have experienced, we fail to consider if we have done the same actions. Our training becomes undone, and we are left with childish thoughts. It is a poisonous diet. Eventually, we have no room for empathy or sympathy. Our passion has no compassion.
If we can learn anything from the haters, I hope we learn to let go of petty grievances and forgive others. There are plenty of reasons to harbor ill feelings. You might even hope that your perceived enemy comes to harm. Albeit they might deserve karma justice, loving them will add an intangible healing to the world and to you, as well.
The next time you hear about another act of terrorism, ask yourself, “Whom do I hate?”
“Love has bliss in it, hatred has despair, bitterness, grief, affliction, wickedness, agitation, confusion, darkness, and all the other interior conditions which compose hell.”
– St. Symeon the New Theologian (949-1022AD)
It may have only been 5:30 a.m., but I am already at my computer getting ready for the day. Although I would have preferred to still be in my warm bed, my mind had other plans. That evening I was leading a discussion on “The Perfect Life,” and I wanted to review my notes.
Only moments into reading, I hear Teddy bark . . . and then, another bark. Holding my breath, I wait – hoping that he would settle back to sleep.
All is quiet. Then, another, “Woof. Woof.”
My quiet morning had dissolved. A barking dog might be a good alarm clock, but my husband would prefer to sleep for another couple of hours. Since I am already awake, I have no choice but to convince Teddy to be quiet.
Struggling to get out of my chair, I grab onto my walker and roll to Teddy’s bedroom (the large bathroom on the first floor). I tell my 15-year-old dog to be quiet.
“Hush,” I say as he wags his tail at me. “Be quiet.”
Just as I manage to get back to my chair and sit down, I hear his short bark, pause, and another bark. I know if I let him out of his bedroom, he will bark at the squirrels having their breakfast at the bird feeders in the back yard.
So, I whisper, “Teddy, quiet.”
“Woof, woof,” Teddy replies.
After a half-an-hour of repeated trips and corrections, I labor out of my chair one more time. Thinking that maybe he needs to relieve himself, I amble to the side door and let him out. Happily, Teddy takes off to roam our wooded back yard.
Giving him a few moments, I call Teddy to come back in the house. I get no response. Each minute I lean on my walker calling Teddy feels like an hour. I continue to get no response. Because it is 42 degrees outside, I cannot leave the door open. The morning has taken a toll on my body, and I can feel it starting to quit on me. I don’t know what to do.
I wonder, “Should I just leave him outside?” Just as I begin to think this is the best solution, Teddy comes around the bend and stands about 15 feet away from me.
“Teddy, come,” I command several times.
Finally, Teddy decides to comply and trots over to me. Getting halfway through the threshold, he changes his mind, turns around, and bolts out the door. He scampers 10 feet away, stands erect and calls out, “Woof, woof.”
I have now made matter worse. Not only am I concerned about Teddy waking my husband, but I also have my neighbors sleep to consider. In my frustration, I decide that I can walk down the stairs and get Teddy.
“It is only three stairs and 10 feet,” I tell myself.
Letting go of my walker, I shuffle out the door and grab the handrail. As I manage to get down one stair, my body has had enough and, luckily, just sits down. In the meantime, Teddy continues to bark.
It is 6:15 a.m., I am sitting on my stairs, in my pajamas, in the cold, and sobbing. Teddy barks. I cry some more. Teddy barks some more.
A loop of thoughts keep running through my mind, “What am I going to do? Dennis is asleep on the second floor on opposite side of the house. I am getting colder.”
I try pulling myself up. . .three times. I cry. . .three times.
“Okay, God, I get it. Here I am, trying to do it all on my own. I do believe that I have the perfect life. Not because my life is perfect or I am perfect, but because You are Perfect. I need Your help.”
I grab onto the newel cap and pull myself up. Suddenly, I am standing on solid ground. With shivering legs and cold hands, I cling to the posts. Each stair a struggle; I climb the three steps.
Leaving Teddy, I close the door. It is now 7:00 a.m. Shivering, I shuffle to the stair lift and ride to the second floor. I grab my walker from the landing and open the bedroom door.
“Teddy is outside barking. I crumbled on the stairs trying to get him. Please bring that dog in the house,” I tell Dennis.
He immediately jumps out of bed. Covering me up and tucking me in, he asks me if I am okay.
“Yes,” I reply. “Everything is okay. Thank God.”
As I fall asleep, I say, “Thank You, God, for Your Perfection and for my perfect life.”
“WHAT IS ON YOUR BUCKET LIST?”
Shifting his weight, he tried another position as he sought to find a comfortable spot. The morphine drip took the edge off for awhile but never long enough. Feeling helpless, I sat next to his bed and held his hand.
He was only 25 years old, and cancer devours the young as well as the old. For six short months, we had battled together to fight this invader. Now, the war was over, and we had lost.
We were young. Around us were people who told us that he should put together a bucket list. They didn’t understand. We had one, and it was short. Spend as much time together so that our four-year-old daughter’s heart would be imprinted with her dad’s love and joy. If she couldn’t have him physically, then we wanted her to have him spiritually.
Now, it seems as if most people have a bucket list. I guess it is a way to cheat death or enhance their life in some way. Maybe they want to have an excuse for risky behavior or spending money they don’t have. Regardless, the items are as varied as the people behind them. It is incredible the things that people have on their lists, from traveling the world to achieving their ideal weight.
What does it matter if you learn a new language and you expire tomorrow? When someone dies, how many of us say, “Well, at least he saw the Grand Canyon.”?
There is nothing intrinsically wrong with having a wish list. In fact, having goals and making plans to achieve them is admirable. Although, it seems to me as if there as two types of bucket lists: (1) the Rusty Bucket List, and (2) the Legacy Bucket List. The first list consists of temporary achievements that have no enduring value. The second list is what remains after someone passes away.
As I think back on the lives of those who have died, it doesn’t matter if they had the opportunity to scuba dive the Great Barrier Reef. Rather, I am struck by their legacy. Did they leave behind love? Were they the reason they were estranged from others? Is there guilt or anger?
I might live another ten or twenty years, but I doubt it. My disease continues to strip my muscles. My energy is wasting away. The bell is tolling faintly in the distance. There is no time to squander. Which bucket will I choose?
I have made up my mind. The decision has been made. I choose to love, encourage, and accept. No saint here. That’s obvious. Nevertheless, the time has come. The battle trumpets are sounding.
It may be another lost war, but I will continue to forge ahead. May faith, hope, and love remain.
“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal.” Matt. 6:19
Finally, I finished my latest painting, “A New Day.”
As I mentioned in a recent post (VIEW FROM MY WHEELCHAIR: RENEWAL), my disease robs me of energy. Still, I make plans, and even if I am waylaid, I am content in every situation. However, my life is not only a mirror of what I say and do. It is also a reflection of the light in my soul.
So, I continue to wage a war against my disease – not in anger but in determination. I know that my moments are strung together. It is as if time were paint, and I hold the brush by which I make bold strokes on the canvas of my life.
Each response applies a color. Beauty and depth are created with blues, yellows, and reds. Carefully, I work to avoid muddy colors that can dull or darken my life. Reactions such as anger and hate destroy the picture and leave my dreams unrealized.
Today was a good day. Tomorrow will be, too.
“Will it be a great day?”
Hoping to start a new painting, I make preliminary plans for the day. Lately, my energy has been in the toilet. But not today! Finally, I feel 75% of the old me. Not wanting to lose my burst of vitality, my caretaker helps me to get dressed, and off we go to my painting space.
These moments are precious. They can slip away without notice and fall away. It is as if I live on the edge of thin, spring ice. My footing is tentative on the slick surface of promises.
Living with a deteriorating, chronic illness requires me to assess everything I do. All the time, I need to make sure that I am not operating under the wrong assumptions. One day I can open a container of yogurt, the next day, I can’t. Then, suddenly, a week later, I can again. As time creeps forward, the “I can days” are being outnumbered by the “I cannot days.”
It can be quite maddening – plans need to be conditional. Without notice, I have to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity of daily living needs to be examined. “Is it a good day for a shower? What else would I like to do today?”
Finding the way through the uncharted territory of my new life, I know that there are two rudimentary reactions to the fickleness of my days. I can view them with as robbers of my life, or I can dig deeper and discover new ways of being me. For me, the option is obvious.
So the process begins: my new life is defined. I am renewed.