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.”
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
My daughter called me the other day. It was one of those “just to say, ‘Hi,'” phone calls. Nothing important, no purpose – a lunchtime catch-up. Although it was a sweet moment, this isn’t what made me cry.
We talked about her job and a recent promotion. I am very proud of her work ethic and her accomplishments. I am delighted when others see in her the beauty of her mind and her soul. My love for her flows to those around her. She has worked hard to gain the respect she deserves, but this isn’t what made me cry.
Recently, in a moment of high energy, I took a moment to do a little, silly “dance.” It all started as I was leaving the sanctuary and I noticed a friend enjoying the closing song. Most of the congregation had left, but a few of us remained. Rising out of my wheelchair, I grabbed my friend’s hand. Together, as we sang and swayed to the music, another friend joined us. (My husband caught the moment on his phone and had sent the video to my daughter.) My daughter and I laughed about the joy of the moment. As I related the story behind the video, we talked about spontaneous physicality and about how few of these opportunities were available to me. The energy required to stand and sway is not often possible. Usually, my heart wants my body to participate, but my disease refuses to comply. However, this isn’t what made me cry.
She turned the conversation around to me. “How are you doing?” she asked. I told her that I was taking a painting class at the local art museum, again. This time around, the art instructor had demonstrated a technique that had broken a creative barrier for me. I was elated with the new style and eager to generate some new pieces. (Maybe even a Christmas gift or two.) This isn’t what made me cry.
My refusal to give in to my disease keeps me busy (with lots of naps). Once a month, I attend a writing group. They are a great group of people, and I told her about the inspiration and constructive insights I have gained from their critiques. We meet in the late evenings, and I need to take a long nap before I head over to our meetings. The energy cost is high and the next day is spent in bed. Nevertheless, this isn’t what made me cry.
Finally, the conversation turned to the progress of my disease. I told her that I have had more incidents of the falling/slipping out of bed. My husband springs out of bed and rushes to me as I quietly call out in the middle of the night, “Dennis, help me. I am falling.” In addition, I am starting to have trouble sitting up in bed in the morning. My brain tells my body it is time to wake up; my body refuses to comply. I cannot sit up or roll over. I just lie there: observing the war between mind and body. Again, I need to ask my husband for help. “Dennis, I can’t sit up. Will you please come help me?” As always, my husband responds quickly. Telling her about this isn’t what made me cry.
When I finished telling my daughter about the physical problems I am having, I said, “I don’t know what I do would if something happened to Dennis.”
Immediately She said, “Mom, you would come to live with us. Not in our current home. We would get a different place that would accommodate your needs.” You guessed it. This is what made me cry.
“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?
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.
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.”
Toiling with the earth and fighting a year-long battle against nature, farmers hope for high yields from the perfect crop. Even though the farmer knows that nature will always win (for she has an arsenal at her disposal), the farmer seeks to control that which cannot be contained. Untameable, nature arbitrarily sends drought, flood, ice, and weeds. One such challenge is the feral stinging nettle plant.
Carried by the wind, the seed settles in the farmer’s fields. The misery of the plant is hidden on the underside of its heart-shaped leaf where there are tiny hairs that will bite you with an irritating sting. Even so, arms at the ready, workers set out to eradicate the plant from their fields.
However, the nettle is more than an unruly nuisance to be yanked out by its roots and tossed into the fire. Surprisingly, the leafy green herbaceous contains a whopping 25% protein and a slew of nutritional vitamins and minerals.
Just like the farmers, we toil for perfection; although, our crop is the perfect life. Convinced of our omnipotence, we make plans as if we are the masters of our lives. Oblivious to the reality that nature cannot be controlled, life is not perfect, and troubles will come into our lives, our plans are ill-conceived. Therefore, it is not surprising that we are dismayed when stinging nettles blow into our neat schemes. And, with the strategy of a general, we raise our banner of war against the unwelcome intruder.
Most Americans strive to live a life free from all difficulties. We dream of attaining the perfect life — which is nothing more than a life of ease. How many of us want to be the occupants of an Adirondack chair nestled at the edge of the Mediterranean Sea? Or, maybe, we prefer a cabin in the woods overlooking a calm lake with no one else in sight.
Whatever form our perfect life takes, it does not include tribulations. When they come, we are quick to beg God to remove them. Maybe we become angry and lament, “Why me?” Most often, we are slaves to our delusion that bad things only happen to other people. But, they don’t. Stinging nettles settle into our lives and illness, disease, accidents, and pain disrupt our lives.
Chronic illness cannot be eradicated. There is no miracle cure. We, who suffer from chronic heart-stinging nettles, learn that we cannot wage a war against that which cannot be controlled. Eventually, we take a different approach: we consume the plant before it consumes us. Having fought the war for years, we evolve into warriors with the ability to be nourished by the nettles.
Please don’t misunderstand me. I am not saying that suffering is good. What I am saying is that we can turn our lives around when they have been turned upside down. As much as we want our chronic illness, our pain, our depression, or our anxiety to disappear, we are not masters of nature.
By devouring our chronic illness, we develop patience. From our patience springs wisdom. We see differently, feel differently, and understand differently. Living with a chronic disease teaches us hard lessons. Every day is a new challenge, and we continue to learn how to live with our disability. We may not be able to do much (if any) physical exercise, but we strengthen our minds by taking our thoughts captive.
Fueled by our decision to devour the weeds in our life, the stinging nettle provides us with insight, sensitivity, and tenderness. Our ability to comfort others is intensified. Our purity of heart shines through our words and deeds.
Our disAbility has given us the ability to live beyond our disability.
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?