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?