With the digital age in full swing and gifs becoming the preferred method of communication, one might be tempted to claim that two-dimensional, static art is dead. In fact, ten years ago, a major city’s art institute (museum and school) held public lectures bemoaning the impending demise of visual arts as we have defined them for thousands of years. They looked into the future and fretted over the loss of public interest in and appreciation of paintings, drawings, etchings, etc. Their conclusion was computers made traditional methods obsolete and archaic.
With the passing of time, I think their claim of doom was right and wrong. Yes, there is a dramatic shift from the static to the dynamic when personal communication is the purpose. Nevertheless, from my personal experience, art classes and workshops are as busy as ever. Moreover, I just read an article where a medical school is incorporating art classes in their training of doctors. What? Yep. (Harvard School of Medicine Joins Growing Trend of Arts Education) Why? “(T)o improve (the medical students) skills at observation and empathy.” On the flip side, rehabilitation hospitals are expanding or adding art therapy to aid patients to “further promote successful rehabilitation.” (http://mageerehab.org/about-us/care-team/art-therapy/)
In the preliterate eras, art was the means by which information was shared within the community. Interestingly, not only did icons, motifs, paintings, and drawings serve functional purposes but some were for aesthetic reasons only. Until the culture developed writing or other forms of record-keeping, preliterate art was the only method of nonverbal communication. “(T)here is evidence of artistic activity dating as far back as 500,000 years ago.” ( Shell Art Made Before Humans Evolved)
When I picked up a paintbrush for the first time, I thought it was only for the hobby. There was no way for me to anticipate the life-affirming experiences in store. Living with a chronic illness is a complex existence. Words cannot convey the myriad of my emotions that are an intimate part each day. We’ve heard the adage, a painting tells a thousand words – well, it’s true. When I paint, I am telling a story, an emotion. You, as the viewer, hear the story or emotion, but it is your story, your emotion.
Recently, someone posted the following observation regarding my painting, Requiem: The artistic imagery is so perfect that it “caused a physical reaction in me – my heart to ache. They are the truth, for me, and I feel that I know them personally. Rose has reached into my soul and exposed me. I am amazed, and horrified, that Requiem and I have intimate knowledge of this truth.”
Thus, I claim that art is not dead; it is more alive than ever. Art is seeping into new areas, finding its way into the heart of individuals. Never before has it been more obvious that art has a voice. In fact, often the visual arts — with its silent but powerful language — have the capacity to transfer thoughts, feelings, emotions without a word being uttered. This communication from one person to another continues long after the artist is gone. The silent voice will never be stilled; it forever speaks to the viewer whether it be in a museum, on a wall, or on a refrigerator.
Image this: A child who has never had the opportunity to be completely immersed in what would be considered a typical summer activity. Why? Because s/he is confined to a wheelchair or has autism or a brain injury.
I guess you don’t have to imagine it, do it? With all the ADA-compliance modifications that have already been made – and they are wonderful, the world is still largely out of reach for anyone with special needs.
There have been times when I have cried because I was sidelined because of a physical barrier. And, if I cried, I can only imagine how often a child has wept because s/he was relegated to an observer-only status.
Now, image this: A child or adult with special needs has the opportunity to be completely immersed in a typical summer activity. What a fantastic idea!
Well, we don’t have to use our imaginations anymore; someone has finally taken the barriers away: Gordon Hartman, the creator of the world’s first ultra-accessible water park. It is a fantastic idea, and it is a reality!
“Children and adults who have special needs are sometimes left out, not because they want to be but because sometimes things are not always adequate for them to use,” Hartman said.
Today is the opening day for Morgan’s Inspiration Island. A $17 million tropical-themed water park located in San Antonio, Texas. This astonishing park (check out the above link) merges those with and without disabilities into one experience. The greatest part of all is that it includes all special needs people.
There are waterproof wheelchairs that use compressed air instead of batteries (which the University of Pittsburgh helped develop); waterproof wristbands for those who tend to wander, quiet areas for those who get overwhelmed, and a way to quickly change water temperature for those who are sensitive to cold water. There’s more: fast passes for those who have trouble waiting in line, private wheelchair transfer areas, and the riverboat adventure attraction boats rise to meet passengers (instead of wheelchair ramps).
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. . .”
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.
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?
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)
“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.
Sitting in my wheelchair, on the edge of a trampoline mat, the same thought kept running through my head. I want to jump. Nah. Yeah. I want to jump.
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?
Uggh, 4:23. I don’t want to wake up. Breathe deep. Take it in, and, now, let it out – slowly. Relax. Go back to sleep. No thinking. I wonder, what should we have for dinner tonight? No, no thinking. Go back to sleep. Relax. Good morning, Lord. Thank you for the day. ‘This is the day; this is the day that the Lord has made. I will be glad and rejoice in it.’ No singing. Go back to sleep. Relax. Maybe I will paint this morning. I wonder if I should add a little bit more Burnt Sienna. That will make it warmer. Stop it! No thinking. Relax. Go back to sleep. I wonder if I will be able to take a nap today? I have been very weary lately. And, now, I am awake instead of sleeping. As usual, Beth was kind yesterday. She’s a real trouper. Always right there. Helping me stand up for songs. Why can’t I just stay seated? It is getting hard to stand. Cut it out! Go…back…to…sleep. My stomach is starting to churn. It’s no good getting all worked up about not sleeping. Oh, my. I am awake. Yep, no trying to deny it any longer. I wonder, do other insomniacs go through the same routine? I might as well get up. What time is it? 5:13. Uggh.
Insomnia is not really making me crazy, but it does play havoc on the mind and body. Lately, I have been weary to the point of crying. The feeling is not fatigue; it is beyond fatigue. Thus, when insomnia kicks in, I feel challenged beyond my ability. How can I operate on little sleep when I am already weary from fighting the war against my disease?
Every day is a struggle, to reiterate, every day is a struggle. My body is at odds with my mind. I am grateful that I can think, and write, and paint. Nevertheless, the fight takes energy that I don’t have in reserve. Picking up a glass of water takes forethought and purpose. Eating is a mindful activity. Cutting my own food is nearly impossible. Every little thing takes determination.
My mind swirls. With the sand running thin on the hourglass of my life, I want to give everything now – not get, give. So, I push my body, and my body is starting to push back – hard. Weariness has set in – deep, dark weariness.
Now, I am fighting on two fronts: my physical body that demands to do nothing and my emotional well that has run dry and demands rest. Two fronts, both wanting me to stop. Just stop doing, they cry.
How can I stop? What will remain unfinished?
My mind swirls. The waves of confusion are crashing over the sides of my ship.
Maybe, insomnia is making me crazy. Wait, I still have hope. Sitting right there in the middle of the storm.
How many of us are operating at a less than an ideal energy load? Disabilities take an additional amount of emotional and physical effort not easily understood (if it is even possible) by neurotypical people. However, we all feel exhausted, at times, from life’s challenges. The day-to-day battle is not mine alone to fight. The storms we face churn our hearts with an ache for calm.
As we wait out the raging emotions and the weariness, our patience will bear fruit. We find a place of refuge. Suffering is a vehicle that can drive us crazy for a season. But the insanity will subside. We become resilient. We know hope – for hope is the child of patience. And, hope never fails.
What would I do if I lived alone? It is 5:30 a.m. Waking, but still asleep. Nature calling me out of my dreams, I roll over and sit on the side of the bed. Only I misjudge and end up on the pillowtop edge of the mattress. Uh oh, I think. Scrambling as only someone with weak muscle strength can hustle, I try to push myself up. No point in trying that maneuver; I am going down.
My husband (who sleeps on the cusp of alertness) asks me, “Are you okay?”
“Nope, I’m falling,” I reply as I struggle.
Hustling as someone with real muscle strength can hustle, he is on the side of the bed and holding me. The comedy of the situation is not lost on me. My husband moving with the speed of The Flash, and I moving with the sluggishness of The Blob. Together we aim for a safe landing. Failure. I am now at a perilously steep angle. The Flash is now The Hulk, and he lifts me up.
The Hulk calls out, “Push. One. Two. Three.”
Ah, that magical number, three. I love it. Somehow, it is the key to success. Between his superhero strength and the incantation, I am now sitting firmly on the mattress. Disaster averted. The floor will need to wait for another time.
Today’s routine was number four in the last three years. The odds of fending off winding up on the floor is a 50-50 proposition. This morning’s event was precariously close to changing the odds in favor of the floor.
Every time I see the neurologist, they inquire into how many times have I fallen since my last visit. The assumption is that I have fallen. So, I surmise that falling is a hazard of myotonic dystrophy. Makes sense.
Now, sometimes falling is a good thing, such as falling in love. Other times falling is an unpreferred result, such as falling on the floor. I wonder, could the preposition be the culprit, in as opposed to on? Probably not. Just a wondering thought.
All this brings me back to the question, What would I do if I lived alone? The answer is obvious: You can’t live alone. Another loss hidden away in the sheets of my life.
I cannot live alone.
We begin life dependent on others for our survival. All through those years, we yearn to be free, to be independent. During our years of independence, we make our decisions and determine our fate. Eventually, and it will happen to all of us, we return to a state of dependence. We learn, no, more than learn, we are forced to depend on another. Otherwise, we cannot survive. It is the final cycle. And, I have entered it.
Suffering and loss will happen; they cannot be avoided. If I am willing to be patient in the midst of hardship, I will develop character. The kind of person who will find joy because hope resides alongside the hardship. Rose Wolfe
Recently, I read Jasper Hoogendam’s blog post Two ABI’s Went Cycling. Now, you may be thinking that this story was about high adventures experienced along the way, but it wasn’t. There was no agony nor defeat. There was no moment of epiphany. Rather, it was an articulate accounting of the small miracles of hope and happiness when Jasper and his friend (both of whom have Acquired Brain Injuries) made the courageous decision to go for a bike ride.
Early on in his re-telling of the day, Jasper makes the following observation: “Being ABI’s our 15 kilometer event needed some careful advanced planning. I just can’t decide to bike 20 or 50 kilometers on a whim as I did pre-ABI.” In the end, the day turned out to be a success, and he found that as he took care of his friend along the way, he was taking care of himself in the process.
This is a heart-warming story of kindness and friendship, and an ableist might put their computer down with a smile and think about it no further. At first glance, Jasper’s story is straightforward and on point; however, on second reading, you will discover he exposed the underbelly of all of us who live on the fringe of the neurotypical world.
In fact, he put the heart-rending, courage-taking in bold type: “I just can’t decide to. . .on a whim as I did pre-.” Those days of “pre” exist outside of the disAbled’s arsenal of options – for our lives are filled with careful planning. And, even then, we often do not get all contingencies covered. For example, one summer day, I encountered a woman and her husband in a parking lot just outside an art fair. As we approached, we saw that they were fussing with her electric scooter. After a brief exchange, we discovered we could be of no help. They had checked the scooter for power before they left their home, but now it would not start. With disappointment etched on her face, she said, “It looks as if we will need to just go home.”
So, even with all the careful planning, from the moment Jasper and his friend made the decision to venture out on their bikes, they were being courageous and hopeful. Even the simplest details of weather forecast, packing a lunch, remembering to take breaks, pace setting, and reasonable limits, some unforeseen event could have tripped up his travels. For someone who could triple the distance in those days of pre-ABI, Jasper would have considered these items without much ado. In his new life, they took center stage because they helped to ensure the success of the trip.
Facing the energy drains, the fears of failure, and the challenges of engaging with the general public can keep the disAbled at home. We hide behind our walls of isolation, faces lit by the glow of a computer screen. Deep within we dig, looking for puzzle pieces of ourselves. What do we look like? Who are we? What can we do?
If we refuse to face ourselves, we cannot put the pieces together. Summoning up the courage, we take each broken piece as if we were archaeologists holding pottery. Slowly, we are redefined. Each day, we gather one more piece of who we are. Courage matures and hope is born.
Finally, we emerge. Some of us scrape off the clay particles and say, “Today, I will venture out. I have hope.”
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.
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.
If you have the ability to move, even if it is from a wheelchair to an airline seat, you may not have realized that airline travel is not an option for those individuals whose cannot make the transition.
Recently, the Muscular Dystrophy Association has been working on making changes to travel accommodation for individuals with disAbilities. In two recent posts, they have articulated changes that would improve life for the mobility-challenged and the current challenges. In addition, you will find useful links.
“Accessible Air Travel Resource Center
Access to air travel is an important element in living life without limits. The ability to travel by air impacts many aspects of life including options for employment, education, and whether you can get back and forth from a clinical trial or a specialist’s office that is far from home.
October 2016 is an important milestone in accessible air travel as it marks the 30th Anniversary of the Air Carrier Access Act (ACAA), which requires equal access to air travelers with disabilities. The law explicitly prohibits discrimination against travelers with disabilities, and applies to both domestic and foreign air carriers who operate in the U.S. A few years after the law was enacted, the Department of Transportation (DOT) issued rules and regulations governing the application of the ACAA. These rules define the rights of passengers and the requirements of the airlines under the law (Title 14 CFR Part 382). You can read the full text of the rules here, or a summary of the rules here.
As the 30th Anniversary of the ACAA approaches, we celebrate the great strides that have been made in making air travel accessible, but are also reminded of the opportunities that remain to improve the experience for air travelers with disabilities. MDA is working with policy makers, industry, stakeholders and disabled travel advocates to support initiatives and activities to increase accessibility in air travel.”
and
“Accessible Air Travel: An Important Element of Living Life Without Limits
In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel. The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.
As the 30th Anniversary of the Air Carrier Access Act (ACAA) approaches, MDA celebrates the great strides that have been made to increase air travel accessibility. In the three decades since Congress passed this landmark legislation that requires equal access to air travelers with disabilities, the law has permitted thousands of MDA families to travel more freely – something that would not have been possible before the ACAA. MDA also appreciates the efforts that air carriers have made to help disabled passengers access air travel.
In light of the many positive changes that have taken place, however, disabled passengers continue to face significant challenges—and we recognize that there is still work to be done. MDA is working with policy makers, industry, and other stakeholders and disabled travel advocates to support increased accessibility to air travel. A few of the ways that MDA is engaged include sharing information about resources available to disabled air travelers on our Accessible Air Travel webpage, partnering with airlines to provide feedback regarding the information they provide to disabled passengers, and participating in the Transportation Security Administration’s (TSA) Disability Coalition.
MDA is also actively engaged in supporting legislation that would:
Study the use of in-cabin wheelchair restraint systems;
Identify best practices in airport accessibility;
Examine training policies regarding assistance for disabled air travelers; and
Create an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of disabled passengers.
MDA particularly supports the concept of a study to examine ways that wheelchairs could be accommodated in-flight through the use of cabin wheelchair restraint systems. The potential for disabled passengers to remain in their wheelchair in-flight is important as travelers must currently transfer multiple times—even when taking a direct flight. In fact, up to five transfers per flight segment are required for many passengers—from wheelchair to aisle chair, from aisle chair to airplane seat, from airplane seat back to aisle chair, and from aisle chair back to wheelchair. Such transfers are especially challenging—or even impossible—for those living with muscle debilitating diseases, and each transfer comes with the risk of injury. The potential for a disabled traveler to remain in his or her wheelchair in-flight is imperative to study as such an approach could not only potentially enable safer travel, it could also significantly decrease damage that occurs to wheelchairs when they are placed in luggage/stowage areas for transport.
As these and other efforts regarding accessible air travel evolve, we will keep you up to date. To receive information related to accessible air travel and other policy and advocacy initiatives, register to receive MDA’s Advocacy updates here.”
I have a label. It is dis.a.bil.i.ty: an impairment of function. You might think that it doesn’t matter. After all, there is nothing tragic about wheeling around in a wheelchair. You’re right. Until I try to become part of the world around me.
Making the decision to participate in the public arena takes courage. Frequently, people react to my presence with patronization, irritation, intrusive gazes or disregard. In effect, I am marginalized. Garnering the strength to face the pity, hostility, and condescension requires planning and determination on my part. The effort is physically and emotionally
draining. Sometimes, I do not have the fortitude to face another day wherein not only am I struggling with my impairment, but I am also wrestling with a myriad of social barriers. Even with ADA requirements, society functions with the assumption that everyone is healthy and non-disabled. Although, the most egregious barriers are the unacknowledged prejudices that are prevalent in society.
Recently, I went out to lunch with a friend. The bathroom (which had the compliant ADA handicap symbol) was not large enough to accommodate my wheelchair. I had to use the facility with the door to the stall left open. This humiliation is not an uncommon experience. Many times, public facilities lay claim to being compliant, but in reality they are not. Checkout counters are blocked by display cases, napkin holders are out of reach, doors are without an activation control button, and stairs are without ramps. Physical barriers prick my energy, but the subtle hostility of people lance me and drain me of all tolerance. I am constantly confronted with the stranger who is prejudiced against anyone who needs special treatment. There is an unspoken expectation that my needs should not be greater than theirs. They are jealous that I get a special parking spot, that I need chairs moved out of my way, or any number of other disruptions to society’s organization of how things should work. I am stigmatized.
These struggles are not mine alone to bear. They are borne by all who have a dis.a.bil.i.ty. Bearing this socially construed label brings harm to the psycho-emotional well-being of all of us who have been, are, and will continue to be stigmatized. We are battered by the demand to be un-disabled. However, the struggle against an affliction (which limits our ability to function) is light in comparison with the feelings of being worthless, a failure, burdensome, and crazy. If we are not careful, we will be brainwashed and internalize the oppression that we face every day.
How often do we try to pass as being able? How often do we excuse rude behavior? Are we allowing our self-esteem to be damaged? We know that our caretakers get drained and that the public does not understand our daily battles. Therefore, we feel pressured to accommodate the abled individual. The result? A loss of our value. The hidden emotional toll of anxiety and loss of community burrows into our heart. Another energy drain.
Rather than being disabled, we need to disabuse the public of their labeling system. As another blogger (Tony Single) stated, “Labels are not for people. ..We’ve lost touch with our hearts. Our identities are rubber stamped. Society dictates our self worth.” (unbolt.wordpress.com.)
Not only do we need to change society’s understanding of who we are, we need to stop our own madness. We are not our disease. All of us are functionally limited. Working together, we can empower the individual to become part of the whole. For we are a socially-conscious unit, and what we do to each individual has an effect on the whole. There is a Bible passage that states this concept eloquently:
“The eye cannot say to the hand, “I do not need you.” Nor can the head say to the feet, “I do not need you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and the parts we consider less honorable, we treat with greater honor. And our unpresentable parts are treated with special modesty, whereas our presentable parts have no such need.
But God has composed the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its members should have mutual concern for one another. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” (I Cor. 12:21-26.)
When I started writing this blog in February, I wanted to engage the topic of living outside of our disAbilities. After all, everyone struggles with a disability and not all struggles can be neatly categorized (nor acknowledged by the afflicted).
My disAbility is obvious. Your eyes rivet to my rolling chair as I enter the room. The first seconds of meeting, we negotiate a social awkwardness. Eventually, I come up with a lighthearted quip, hoping to put everyone at ease. With children, it is different. They stare at me until their parent becomes uncomfortable. I don’t mind their straightforwardness. They are real and honest with curiosity. As our eyes meet, I smile and try to elicit a response. It allows me to engage with them about their unanswered questions.
Anyway, because I have failed and succeeded in my new role as a physically disabled person, I thought my focus would be on encouraging anyone who is struggling. My mistake was focusing on “disabilities.”
My life is not about my physical and mental limitations. It is about finding a rePurposed Life. Moving forward from a scared child to a petulant youth. . .until, finally, an earnest adult. But my disease changed me further. It was another twist in the narrative of my life’s story – a page turner.
Because of (and in spite of) muscular dystrophy, I reexamined my life again. I found it wanting – lacking vision. What did I desire? Over and over, I asked myself to define my purpose. The answer exploded in my heart as I watched one, two, three, four, five people die. What legacy did they leave? What legacy did I want to leave? To love others (family, friends, neighbors, enemies) and to encourage them.
Yes. It was time to take the focus off of me, the petulant youth who never grew up. I want a life that has meaning – with God centered.
No preaching. No condemnation here. Just honest conversations about how we think and what we do.
So, I am thinking about renaming my blog from Living Free with Disabilities to The reRepurposed Life. (The url will remain http://livingfreewithdisAbilities.com.) What do you think?
You can’t choose what happens to you,
but you can choose how you respond.
Recently, Faith McCord observed that “(W)e choose happiness – a quieter, deeper, different kind – despite and because of poor health.”
Having lived with myotonic dystrophy for years, I can attest to the veracity of her statement. Chronic illness demands an awareness not only of our bodies but our disposition, as well. Suffering puts everything in perspective.
Suffering Changes Our Reality: So much of what we think or feel is metamorphosed not only by what happens to us but by how we interpret those events. Have you ever experienced something so intense that you felt as if you were observing life rather than living it? Our senses become heightened. There is a similar experience for those who suffer. Over time, we become more real.
A good example of this is in the children’s book The Velveteen Rabbit:
“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse.”It doesn’t happen all at once. . .It takes a long time.”
Facing chronic illness drains the superfluous sentiments from our lives. Over time, we start to care about what matters. Reality is redefined. There is a realness that we did not feel before. Acquiring things is not as important as having basic necessities: health care, medical equipment, and physical and emotional support. We learn the value of friendship and love.
A Mystery of Suffering: We learn something else, too: Happiness is not happy feelings. There is the “quieter, deeper, different kind.” For those of us who have had to endure hardship develop a maturity. The deep cut to our heart, the anguish felt to the core of our being opened us, and we became real. We are wiser.
Recent events in the United States, Brussels, France, Somalia, and Afghanistan have changed reality for the world. There are no safe places. We have been exposed to a sudden, permanent transformation. The chronically ill have had a permanent transformation, as well.
Of course, the psychological impact of terrorism has a unique niche. However, suffering demands attention. We cannot ignore our pain, our depression, or our anxiety. Solutions need to be found.
In trying times, we can choose to grow more real. In the easy times, we can choose to enjoy. In all times, we can choose happiness; the quieter, deeper, different kind of happiness.
Personal struggles explode into public arenas. Those with shredded souls seek disconnection – wanting to destroy what they don’t understand. They claim their hate is an act of love. In the aftermath, not only is flesh bleeding out, but also the hearts of those who hate the hate.
Challenges are now part of every life as we claw at the chains to live beyond the prison of madness. In an attempt to throw off the albatross of hopelessness that has been tossed around our shoulders, we can actively take steps to find hope. It will require courage.
Courageous Step One: Have faith that we are the difference (not will be, not can be, are). We hold the key. Let’s examine our thoughts. What messages are we telling ourselves all day, every day? Put aside anger, jealousy, and revenge. As we change our thinking, we will evolve. Let’s answer the call to accept, tolerate, and love others.
Even as we continue to face lunacy, our standards of behavior must not waver. During World War II, resistance movements existed in every occupied country. The current war is not limited to countries. The other world wars were misnomers. We are in THE World War.
Courageous Step Two: Plan a course of action. Even though we are being forced to travel on a road paved with the souls of innocents, let’s work patiently toward positive change. We have choices of how to behave in every situation. The time to sit on the sidelines has passed. We can no longer wait for someone else to make sense of what is going on in the world. It is senseless.
Courageous Step Three: Find purpose in the small things. Everything we have experienced or are experiencing has life-giving potential. As we work through the pain, let’s look for the gift. How can our heartbreak work a greater good in us, in others? What can we learn? How can we show compassion? Some of our greatest moments are those when we touch the life of another. Replace selfishness with selflessness – one act at a time.
Courageous Step Four: Don’t condemn others. Mankind has always acted with inhumanity against humanity. Let’s not fall into the trap of hating in return. Attaching reason to a madman’s behavior is impossible. We cannot comprehend the motivation behind someone who is willing to shoot people at random, bomb an airport, or run over bicyclists. At the same time, letting our hearts be poisoned by their actions will kill us, also.
There have been too many atrocities. It would be easy to focus on the horrible actions of others. Nevertheless, we need to start with ourselves. Examine our lives. Do we condemn what we don’t understand?
Courageous Step Five: Believe in God. Let us take an honest look at how we have managed our lives. Have our choices served us well?
For me, my faith in God gives me the strength to hope and to act. It is hope which has kept me going through my darkest struggles.
As you may already know, for the last year, I have been looking at my life and how I treat people. I am convinced that it is possible not only to love my neighbors but to love my enemies, as well. What has happened and will continue to happen in the world is demanding that I move earnestly towards my destination.
However, I know one thing: The madman is mad. He gave himself over to evil.
For our struggle is not against flesh and blood, but . . . against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. (Eph. 6:12, NIV.)
Has it ever happened to you? You are washing your hands and, without thinking, you look up and see some stranger in the mirror looking back at you? In that split second, you are shocked. “Who is that person,” you wonder?
I mean, I know it’s me. Yet, it’s not Me. It’s not the Me I was. It’s not the Me I thought I would be. It’s not even the Me I think I am.
So, who is that person looking back at me? What do people see when they look at her? Who do they think she is?
Just the other week, someone said to me, “You know, you don’t look sick.” Do they mean I don’t look like someone who needs a wheelchair and is, therefore, faking it somehow? Or, do they mean I look better than someone should look when they are mobility challenged? What does sick look like?
Does it even matter?
This is a strange concept to me. I don’t look sick. Hmmm. Does that mean that I need to wear sweat clothes and gym shoes? Does it mean I should not wear makeup? If you saw someone wearing sweat clothes, would you say, “Oh, look, that person is sick.”? How about if you saw someone without makeup on? What conclusions would you draw?
And, if I were to dress in a different way, what would I be saying about myself? What would I be saying to you? Some people have no choice. They have been burdened with a stroke or paralysis. This does not mean they are sick. They are disAbled, mobility challenged, and dependent on a caretaker.
My reflection has changed. My disease is changing my face. And, I don’t always immediately recognize that woman in the mirror. Still, she doesn’t look sick.
I keep coming back to the same question: What does it mean to look sick? I don’t have an answer.
What I do know is that I don’t look sick because I’m not – sick.
As I face the demons of unrealized dreams squarely, it occurs to me that they are just that – unrealized dreams. Nothing more. Should this loss be so traumatic that I should feel hopeless? Is it even possible to feel hopeful?
Adding to my personal loss, the stress of living in a world where tens of thousands rally around banners of hate, my heart aches for those who are facing loss caused by these monsters of society. Is it even possible to feel hopeful?
Yes, it is. I sit calmly with hope in my inner being. Not because I refuse to face the turmoil of loss, but because I have a faith that goes beyond today.
When I first lost mobility and the resulting loss of dreams, I was frustrated at how little I could do and how little I felt understood. It was overwhelming; not only was the world’s situation hopeless, but my medical team held out no hope to me, as well.
Over time, it occurred to me that I needed to examine my thoughts, challenge my mindset, and make decisions that provided me with a clear vision. My struggles would serve me and others. Each challenge would work a deeper truth within me and, as a result, carry the potential of life-giving gifts to those around me.
Hope keeps me going through my darkest times. As I encounter challenges, I have the option to face my tribulation with faith. In truth, the greatest moments are those when I have suffered with purpose. For suffering produces patience, and patience develops character. As character matures, hope emerges.
“To live without Hope is to cease to live” ~Fyodor Dostoevsky
th 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.
In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel. The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.
Is it even possible to feel hopeful?
The rePurposed Life 