It was one of those glorious Sunday afternoons. The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.
I was at a family gathering. Didn’t matter that it was a baseball game. Yes, I am one of those people who doesn’t really care for baseball. I know, I know, it’s America’s favorite pastime. Or, so I’ve heard all of my life. Nevertheless, even though I am a born and bred American, it is not my favorite. Honestly, it would never even appear on any things-to-do list of mine.
Yet, there I was with the gang watching baseball. And, I wasn’t only sitting there passing time until it was over. Nope. I was yelling and whooping. Yes, I had become a fan in a few short moments. Mimicking the guy behind me, I called out such terms as, “Good eye.” (Huh? Good eye?) What happened? My grandson was playing.
Funny how one’s perspective can change with the slightest alteration in circumstances. It happens all the time. We just don’t notice until something unique comes along – such as my grandson being part of a baseball team. Surely changed my perspective on baseball. (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)
There is another area where my perspective has changed, also. It is the number of invisible fences that the mobility-challenged face every day, every where.
For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people. The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks. All this fabulous planning and accommodation helped make my day more enjoyable.
However, challenges still needed to be faced. Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands. In between? A sea of rough, uneven gravel. To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot. Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow. I can’t even imagine how difficult it would be for someone using a walker.
The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game). It is that time when praises are given and awards are handed out. Only, the dugout was another sea of gravel away.
So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.
Recently, I was forced into the noisy and congested world typical of American life. Yep. I had to go shopping.
It all started the moment I tried to squirt a little bit more of the most basic of all oil paints, Titanium White, onto my palette. With a PFFTHHPPPPP the remaining paint plopped out. Reaching for my backup tube, I found. . . nothing. Yep. That tube of Titanium White stuck in the back of the rack? It wasn’t white. It was Ultramarine Blue.
What? Impossible! Agghh! Okay, don’t panic. Just get some delivered.
Normally I can accomplish this task with a few clicks and, violá, the deed is done. Not this time.
Having pulled out my handy, lightweight laptop computer, I searched for a site that would deliver some paint within a few days. (Another experience of the typical American life.) However, with a click-click here and a click-click there, I discovered that it would take, drum roll – please, two weeks for the paint to arrive.
Oh, phooey, ptooey. I have to go to the store.
So, off I went to one of those big box stores that sell home goods, craft items, and art supplies. I live at least an hour away from any major city. Yet, I only had to travel 15 miles to buy my oil paint. (Another one of those pretty awesome miracles of the ordinary American life.)
As I rolled into the store, my eye noticed a sign for sale, “Be Original, Not Ordinary.” Huh? What’s wrong with ordinary?
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
How many of us are done? Done with the demonstrations, the riots, the “Build the Wall” chants, the Islamaphobia, the cry to dismantle elements of our constitution, and done with hatred in general. I am. Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
What happened to: “Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!”
Somewhere along the way, a seething, acrid rage began to smolder in our country’s belly. Hidden behind the smiles and proclamations of acceptance, we ate the poisoned fruit of jealousy and hatred. Until, finally, with glad relief, we spewed the foul bile from our hearts. And, what happened then? Did we look upon our vomit and hastened to sweep it into the trash? No, instead we declared it good.
“Look!” we cried. “Finally, my passions of greed, jealousy, lust, pride are unbridled, and I am ecstatic.”
Honestly, how many of us can follow our roots to the indigenous people of this land? We are an immigrant-founded country. Yet, we want to close our borders to the “alien,” the “illegal,” and the “refugees.”
We blame others for our failures. Our appetites are insatiable. Just like children, we dream of the good life – which has yet to be achieved because it is unachievable. Our bellies grow as we lust after more.
It is time to grow up, America. Look in the mirror, and ask yourself In what ways am I responsible for my life? Am I willing to change? What can I do be positive? In what ways do I take offense? How often does bigotry play a part in my actions and thoughts?
There seems to be a prevailing consensus that life should be good. Period. No ups and downs. No struggles and successes. No failures. We want things the way they were – as if our memories are accurate storytellers.
Life doesn’t always have to be good. In fact, life is pretty darn hard most of the time. Many of us face financial troubles, relationship dilemmas, or health issues. Yet, we find ways to cope. When I look around me, I see potential. Everyone I encounter has the ability to do good. No matter what you are experiencing, you have the option to think well of people or to complain and find fault.
Life doesn’t always have to be good for you to be good, to do good, and to think good.
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.
I am. I am guilty. We don’t use the word anymore, do we? The only time that we hear the word guilty is when it’s applied to someone who’s committed a crime. Nevertheless, I will use the word guilty because it applies to me.
I am guilty of having a genetic disease. I carry a debilitating, muscle-wasting criminal in my DNA. The sentence handed down? The rest of my life spent in prison – barred without walls. The worst part? This genetic-code criminal is capable of dwelling in my child’s DNA.
How many people with genetic diseases feel guilty, I wonder? Who do we tell? We know that we can’t apply social justice standards. No crime committed. Still, we feel responsible.
For what you might ask? For the extra load that our partner has to carry, for not being able to participate fully in the lives of our loved ones, or for having to excuse ourselves from functions, for a myriad of reasons. Still, others may feel, as I do, responsible for our genetic makeup. What can we do?
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
Have you ever tried your high-beam headlights when driving in a dense fog? Scary, isn’t it? The greater the illumination, the less that you see.
Sometimes, medical personnel used their “high-beam headlights” when caring for the chronically ill; they are so intensely focused on their area of expertise that they cannot see the person before them. Scary, isn’t it?
Have you ever heard the joke: What’s the difference between God and a doctor? God knows he’s not a doctor.
Joking aside, I have a benevolent attitude regarding people, even doctors. However, it is true that some medical care providers have trouble listening. Still, doctors do their best with what tools they have available to them. And, that is the problem: their tools. Every doctor approaches their patients with a complete set of lights (beliefs) that they carry around with them.
Those of us within the chronic illness community have more doctor appointments than the average person; consequently, we begin to understand our doctors’ weaknesses and strengths. In addition, we develop a greater understanding of our body’s messages. We know when something is wrong, and often we know the likely culprit. Yet, it is difficult to convince our doctors to see us through the fog of symptoms.
For example: Because my lung muscles are inadequate, my blood oxygen levels drop during the night. Consequently, I need a CPAP machine. Essentially, it has two cycles: one which blows air into my lungs and another that stops blowing to allow air to be pushed out of my lungs. Since my muscles are getting weaker, the pressure necessary to blow air into my lungs is continually being increased by my pulmonologist. This is where it gets sticky for me. The complicating factor is that my lung muscles are too weak to push the air out. The result: a build-up of carbon dioxide in my bloodstream. Not good.
How does the above work as an example? Testing for carbon dioxide levels in the bloodstream is very expensive. (In my case, this would be a low-beam headlight.) Consequently, the relatively easy and cheap measurement of oxygen levels is used to measure lung function. (The high-beam light.) So, even though the results of the tests are indicating that I am getting adequate oxygenation at night (thanks to my CPAP), the test does not measure carbon dioxide levels – which are being elevated as a result. The medical community is shining their bright light on the problem of oxygenation; however, the problem of carbon dioxide levels is hidden in the fog.
It is not only doctors who carry around a satchel of lights (attitudes and beliefs) that often blind us. How I now approach a solution to the conundrum of oxygen/carbon dioxide all depends on what light I choose. The reality may be that I cannot resolve the problem on my own. I may have to battle the medical community (and insurance company) to take another look at the problem. Or, there may be no solution available. No matter what, my perception will affect what I see.
All this to say the following:
Every person around us is facing difficulties. Are we being blinded by our prejudices? Can we see the person, or do we see our own light reflected back on us?
If you think you don’t pre-judge people, let me say two words: Trump, Clinton.
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?
Recently, I read an article wherein the author, who has lived with a chronic illness his entire life, was lamenting how he felt pressured to “put on a happy face.” His main complaint focused on the inability of the people in his life who were reluctant to address the depression and dark moments that the chronically ill face, especially death. The author was angry that he had no outlet to express his feelings. Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who chronically ill and at peace with death must be “faking it.”
Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who is chronically ill and at peace with death must be “faking it.”
While I acknowledge that dark moments are part of the human psyche (chronically ill or not), not everyone fears death. Personally, I know of three people who were at peace with the inevitability of their death: my first husband, my niece, and a friend. However, I have also watched others who faced death with anger, fear, and resentment.
There are at least two issues underlying the ranter’s anger: (1) The perceived pressure to “put on a happy face” when the author would rather have talked about his impending death, and (2) the author’s assumption that everyone fears death. In fact, the author went so far as to say that if the dying person was content with the situation, then they were faking it. He said he hated those fakers.
I feel sorry for the author. He is facing the end of his life, he is angry, and he can only see the world from his point of view. To be at the end stage of your life and only see bleakness is a horrible way to spend your remaining days. I am also sorry that he does not have the support that he needs. (I wonder if the support is missing or if the support is not what he wants to hear.) Many people do not want to talk about death and they do not want to be around angry people. He might be in a Catch-22 situation. No matter what the specifics of his situation, I wish there was something that could be done to help him.
My chronic illness puts me at risk for a stroke or sudden cardiac death. Rather than churning my insides into a rancid soup of anger and hatred, I made the decision to be happy and do as much as I could for as long as I can. One of my new mantras is Don’t Give Up – Ever. I fear that the author has given up – on themselves and on others. Hence, the Great Divide and why he can’t understand how people can choose a different approach.
If we were to meet one another on happenstance, I wonder how the author would react to my words? Would he believe me that not everyone fears death? The range of feelings surrounding death are as varied as there are people. It is not a simple matter. In truth, the way we feel about death has a lot to do with the way we feel about life.
The three people I mentioned at the beginning of this post (who were ready to face death) were Christians. Whether or not you believe in God is not the point. My point is that Christianity gives the believer hope about the future and strength to face the present.
Please don’t misunderstand what I am saying. All three people had to deal with pain, a slowly deteriorating body, and dark moments. Still, spending time with them was a rewarding, enriching encounter. The more that they released themselves to the passing, the more serene they were in spirit. They had hope and a vision.
On the other hand, I have known people who did not have faith in God. As they faced death, the angrier they became. They spent their last days spewing hatred. Their beliefs had a deep impact on their feelings and psyche. Before you jump all over me, I know that there are people who do not believe in God but have passed away in peace. Still, there is a Great Divide about facing death.
Is death an end or the beginning?
You just might be wrong.
Because you believe something doesn’t make it true. Your perception is a reality, not the reality.
Take my uncle for example. Diagnosed with myotonic dystrophy in his 40s, he was scuttled off to live with his 82-year-old mother. As soon as he heard the news, he was done. It was his free ticket to sit all day, watching television, while his mother did all the work. He did nothing – not one thing.
For four years she waited on him. By the time my grandmother was 86, she needed help herself. So, we made room, and they came to live with my family and me. Four adults and two children in a three-bedroom ranch. The roles were modified. Now, my grandmother and uncle both sat and watched television from morning to night. They did not
participate in any family events. They did not want to do anything. They did nothing – not one thing. I did all the work. It was okay with me. I did it because it needed to be done. No expectations and no rewards.
So, what was my motivation? My grandmother and uncle needed help. Neither one had ever been kind to me. It was a fact. I didn’t care. The relationships were determined the moment I was born. (Probably before I was born.)
What does this have to do with truth and perception? My uncle was a skeptic. He would tell me I had an ulterior motive. “What motive could I have?” I would ask. “You have nothing. Grandma has nothing. I am taking care of you because you need a caregiver.” He never answered the question. He refused to believe that I took them in because they needed help. He would not (could not?) understand that their lack of grace towards me did not determine my actions towards them. He could only see life as a reflection of himself.
Grandma’s point of view? I don’t know. She would tell me stories of her life. In all of them, she was the sad victim. I would wipe her tears. Unhappy and dissatisfied, she looked at life through a glass streaked and stained with misery.
Today, I live with myotonic dystrophy. I do not sit all day watching television. I write, read, and paint. In addition, I visit people and invite people into my home. I attend church, a writer’s group, and a painting class. What do I see? Hope and love. Why? Because my belief is based on a faith in God.
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.
“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.” ~ C.S. Lewis (1898-1963)
Found this quote on The English Lit Geek blog site. C.S. Lewis’ words ring true today. What do you see and hear?
“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.
With one final I want to jump, my mind took off with exhilarating memories of bouncing on trampolines and flying through the air. Two things I enjoyed as a kid: swimming and jumping. When small, personal trampolines first hit the market, I was right there in line to buy one. For years, I enjoyed bouncing – tiny, little flights of gravity-defying moments.
All those memories were buried away deep in the past. Until recently, when I took my grandson to an indoor trampoline park. If you ever have the opportunity, go.
The indoor place near me has four separate areas. Each one designed for a different purpose: freestyle, a basketball room, a dodgeball section, and a foam pit area. You can even bounce off the walls!
As I sat there watching my grandson bounce, jump, and fly into the air, I felt intoxicated. My body craved to fly. I wanted to bounce, to lift my feet off the floor. I wanted to defy gravity once again. For a serious moment, I contemplated it. For a very long, serious moment.
Then reality seeped into the crevices of my gray matter. Do I have the core strength to bounce? How uneven is the supporting edge? Would I be able to get to the mat and back? What if I fall? No, better not try. Maybe? No.
I live in a new world, the world known as You Can’t Do That Anymore – But You Can Remember.
Some people advise us to forget the past. They say it is best to live in the moment. “The past is too painful,” they preach. While I agree that living Right Here, Right Now is a healthy lifestyle choice, the past should not be forgotten. Memories of how things were before we became disabled don’t have to be pushed away. Our previous experiences add a richness to our lives. Not only are there valuable lessons to be learned, but there are pleasures to be relived.
To reminisce and, once more, taste the pleasure of precious moments are treasures to be discovered. Just like the unsolicited recall of an uncomplicated time in my childhood, we can choose to remember with joy – not pain or regret.
I may not be able to jump, but I can fly once more.
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?
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
I watched him approach, the summer sun reflecting off the white stick making its own music, tap-click-tap-tap, as it hit the sidewalk. The girl holding his hand looked to be about 11 years old, my age. Fascinated by his blank eyes that looked heavenward, I found myself unable to turn away. Knowing that it was rude to continue my scrutiny, I forced my chin to move; my eyes following at a slower pace. It was then that I noticed her eyes. Those clear, brown eyes were staring at me; then, just as quickly, she tilted her chin and looked at the ground.
Eventually, the girl and I became friends for a school year. Because it was just the two of them, her life centered around her dad’s needs. Even though I was responsible for the laundry in my home, I still had plenty of time for me. She didn’t. Back then, there was no ADA, no reasonable accommodation, and certainly no stoplights that talked or beeped. It didn’t occur to me until just recently how difficult her life must have been.
A parent with special needs compelling his child into a life of servitude. She never complained. He always complained – about the failure of social services.
The next summer, they were forced to move into a housing project that was a community of the marginalized, poor, and disabled.
Where was our charity?
I grew up reading Charles Dickens. Loved the guy with his embellished stories and characters that were characters .
With strong imagery to support his rich and complex stories, there was much to glean from his writing. Nevertheless, Dickens’ social criticism bore into the inner layers of my young heart. The contrasts between the lifestyle of the affluent and the destitute were strong and severe. Lurking in the background, society’s lack of compassion compelled the orphans to be pickpockets and the beggars to be connivers. Otherwise, they could not survive. Having lived in a time when America’s streets were not congested with the disenfranchised, who were forced to expose the intimacy of their lives, I wondered how could respectable people walk by the needy without acknowledging them.
Then, the 1980s hit, and President Regan made changes to the Housing and Urban Development’s policies. Trickles of homeless people started to leak onto the streets. Today, we have neighborhoods of cardboard homes tucked away in the dirty corners of unwanted land. These communities are filled with the mentally, physically, and financially disabled. Dickens’ world is our world. History has repeated itself once more. We have become the respectable people who walk by the needy without acknowledging them.
Where is our charity?
In 1990, the American Disabilities Act provided for regulation of handicapped parking spaces. Based on my observations at the time, the spaces were usually empty. So, I concluded that there were too many spaces set aside. Besides, I thought, how many disabled people could there be? I knew of only one. My uncle – who never went out unless it was for a doctor’s appointment. Yes. I was ignorant and callous.
Nevertheless, the handicapped spaces were left pristine.
Today, violations are rampant. It is common to see people park in handicapped spaces without the required placard or plate. Setting aside those who appear to be healthy but are justified in their use of handicapped spaces, we know that there are many people who use the spaces illegally. In San Francisco, the misuse of the spaces is so egregious that the fine for one violation is $1,000. Yet, the law has no bite.
We have become a society that clamors for justice. However, when it comes to examining ourselves, well, we don’t.
Will there be charity?
“Did universal charity prevail, earth would be a heaven, and hell a fable.”
Charles Caleb Colton
Upon examining the trajectory of my life, I saw that I needed to alter the course. For a long time, I worked hard at being righteous. You know, a good person. Nevertheless, my childhood experiences kept sabotaging me. Suddenly, myotonic dystrophy took over and demanded a change in my behavior. It was at this point that I found my soul – that child who had hidden herself away from the world by the time she was five years old. Knowing that I could die from sudden cardiac death shocked me into reevaluating my legacy. Now, I knew. I wanted to do my best to love and to encourage people. Lofty goals, perhaps, but goals.
All this thinking and evaluating my life took a deeper route as I wrote posts for this blog. Since February of this year, I have found co-suffers and co-lovers through the WordPress community. Living with a chronic illness is a road more well-traveled than you might be inclined to think. And, the forms of suffering are as varied as snowdrops. Being bound to adapt to an outside force transforms us. We struggle every day to find a way to be more than conquerors; we must discover a path to be thrivers. So, we share our stories with each other and the world. Hopefully, we bridge the gap.
Having said all that, I would like to take a moment to talk about what is going on in the world and society’s reaction to it. The initial shock of hearing about another shooting or, in the most recent incident, a priest having his throat slit, we cry out in unison. Flowers and memorabilia are placed at the location of the atrocity. News reporters provide us with as many horrific details as they can garner. Some of us might talk about the need for change. Others might want to secure our country’s borders against the “illegal alien.” Eventually, we return to our lives.
I cannot turn my back any longer. Neither can I initiate change in the heart of haters. Yet, I want to say to everyone:
We all suffer – some from chronic illness and disease, some from invisible trouble. Our suffering should be binding us together. Even more, we need to question ourselves. Are we being sensitive to the world around us? Do we put others first? Are we willing to love our enemies? Are we standing up for justice – not revenge? Is peace our goal? Do we have compassion?
If we continue to be self-absorbed, then we will continue to see a decline in our society. We have all heard the expression, “If you are not part of the solution, you are part of the problem.” The time to sit on the sidelines and bemoan heinous behavior has passed. All of us need to be thrivers. We need to grow in maturity and character.
Just the other day, a friend shared with me that humility is derived from the Latin word humilitas, which may be translated as “grounded.” You might bristle at the idea of being humble because you think it means to be meek. Instead, I encourage you to be humble, be grounded, be courageous. Stand tall and tell your friend, your neighbor, your loved one, “No more insensitive jokes. Period. No more hate. Period.”
Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. (I Peter 3:8)
Seems obvious, doesn’t it? Words wound.
Talking over the television, I say, “Mom, how are you today?’
“Oh, okay,” she mumbles.
“I like your pink sweatshirt.”
“Is it okay if I turn off the television and take you go out for dinner? Then, on the way back, we can stop for Butter Pecan Ice Cream.”
“I want some chicken. And ice cream.”
“Okay. We can go to the little Italian restaurance you like on Taylor Street.”
“I want some chicken with mashed potatoes.”
“Okay. Do you have your keys with you?”
Your keys. Do you have them?”
“I don’t know. What keys?”
“The keys to your room. Let’s find them and turn off your television before we leave.”
“Ah, here’s your keys,” I say as I touch the ribbon around her neck. “Shall we go?”
As I push my walker towards the door, she turns to look at me and says, “What’s wrong with you?”
“I have muscular dystrophy.”
“Well, you didn’t get it from me.”
“No, Mom, I didn’t get it from you,” I reply and close the door behind us.
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.