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.”
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.
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.
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.
“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.
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)
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?