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).
Admission? FREE FOR THOSE WITH DISABILITIES.
Anyone up for a road trip to Texas?
It was one of those mornings, Spring shining through the windows. The promise of warm breezes and light jackets. My favorite way to wake up. Smiling, I lifted myself up. Wait, no. Rather than sitting up, I had remained prone. Okay, I’ll try to push a little harder. Nope. That didn’t work. Time and time again, I tried – and I failed. You’ve heard of frogs turning into princes. Well, I guess I had turned into a turtle on its back.
I happen to be married to one of those sweetheart kind of guys. Knowing that if I quietly called to him, he would wake up and eagerly help me. I guess I could say he loves his turtle. Yet, there was no morning urgency to rise. So, instead of waking him up as I had in similar situations in the past, I decided to let him sleep. This old turtle could wait out the time with prayer. Eventually, he stirred and my prince charming turned me into his princess.
The before Rose – the one who existed before a degenerative neuromuscular disease claimed her body – she would not have been given to wait out any situation. She was always having to do, to go, and to act. There are many disadvantages to living trapped in a body that doesn’t work very well, but there are some advantages, too. This morning’s advantage was to let myself be helpless. Rather than thrashing out against an unmovable force, I chose contentment.
It has not been an easy metamorphosis, and I am not changing from an earthbound, crawling bug into something that can fly in the light. My conversion is taking away freedom of movement, incremental, almost indiscernable pieces of my life – my physical life. In its place, I am finding an upside down turtle. My choices are obvious. Do I pull myself into my shell and hide away? Or, do I lie there vulnerable and patient?
Patience and contentment are choices even when my life is not upside down.
It all started simply enough. Jasper wrote a post (An Amazing Choice) about a young man, Marshall, with cerebral palsy. As typical for him, Jasper piece was insightful and thought-provoking. At the end of the piece, Jasper offered his readers the opportunity to contribute to his post.
As someone who has made certain discoveries and choices with how to live with a chronic illness, much of what Marshall had to say vibrated within me. So, I made the following comment:
“Jasper, thank you for sharing this post. Just recently, I have been formulating a concept that there is the Gift of Suffering. In its most basic form, the idea is that our suffering adds to our spiritual maturity. As we continue to add to our faith, we grow in our relationship with Christ. Once we trust God with our lives (and, we, who are disabled, know the meaning of this), we can move forward in our appreciation of God’s plan for us. One gift: tribulation develops patience; and patience, character (maturity). Another gift of suffering: we can then comfort others with the comfort that we received from Christ.”
Having the opinion that there can exist such a thing as a Gift of Suffering does not dimish the hardship that suffering brings with it. Do not misunderstand me, please. suffering is not a preferred way of life, but it can change us into more compassionate, patient, thoughtful, kind, loving, enthusiast, insightful, creative, and respectful people. There are other ways that these attributes can be added to our lives, but disabilities have a way of hurrying along the process.
Again, do not misunderstand me, please. I am not saying that if you have a chronic illness, you will automatically join the club of those who have found the secret of being content with their situation. It is a choice – always and daily. Jasper made that choice.
In a more recent post, he wrote:
“I was in awe when I realized how my experience and gradual understanding of the suffering surrounding my ABI reflected the comment you made a few months ago. I would reflect on your comment at times and anticipate a blog post in which you had developed your thoughts further. Talk about mutual inspiration and support. . .”
To read more of what Jasper shared, please click on The Gift of Suffering
How many of us are done? Done with the demonstrations, the riots, the “Build the Wall” chants, the Islamaphobia, the cry to dismantle elements of our constitution, and done with hatred in general. I am. Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
What happened to: “Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!”
Somewhere along the way, a seething, acrid rage began to smolder in our country’s belly. Hidden behind the smiles and proclamations of acceptance, we ate the poisoned fruit of jealousy and hatred. Until, finally, with glad relief, we spewed the foul bile from our hearts. And, what happened then? Did we look upon our vomit and hastened to sweep it into the trash? No, instead we declared it good.
“Look!” we cried. “Finally, my passions of greed, jealousy, lust, pride are unbridled, and I am ecstatic.”
Honestly, how many of us can follow our roots to the indigenous people of this land? We are an immigrant-founded country. Yet, we want to close our borders to the “alien,” the “illegal,” and the “refugees.”
We blame others for our failures. Our appetites are insatiable. Just like children, we dream of the good life – which has yet to be achieved because it is unachievable. Our bellies grow as we lust after more.
It is time to grow up, America. Look in the mirror, and ask yourself In what ways am I responsible for my life? Am I willing to change? What can I do be positive? In what ways do I take offense? How often does bigotry play a part in my actions and thoughts?
There seems to be a prevailing consensus that life should be good. Period. No ups and downs. No struggles and successes. No failures. We want things the way they were – as if our memories are accurate storytellers.
Life doesn’t always have to be good. In fact, life is pretty darn hard most of the time. Many of us face financial troubles, relationship dilemmas, or health issues. Yet, we find ways to cope. When I look around me, I see potential. Everyone I encounter has the ability to do good. No matter what you are experiencing, you have the option to think well of people or to complain and find fault.
Life doesn’t always have to be good for you to be good, to do good, and to think good.
9/22/2016 “As I walked out the door toward the gate that would lead to my freedom, I knew if I didn’t leave my bitterness and hatred behind, I’d still be in prison.” – Nelson Mandela
The above photo and quote are reblogged from the Eyes & Words blog site.
In 1962, Nelson Mandela, an anti-apartheid activist in South Africa, was sentenced to life for conspiring to overthrow the state. Due to international pressure and fear of a racial civil war, he was released after serving 27 years in prison.
Even though he had justifiable reasons to be angry and to encourage his supporters to seek retribution, he chose the path less traveled. His decision to forgive and forge forward is helped him to be a great leader. We all could stand to learn from his example.
Often, we imprison ourselves by our perceptions, attitudes, and thoughts. We react to situations rather than respond. Whatever situation you are facing right now, the choice is yours.
Do you choose bitterness or freedom?
For more of Eyes + Words blog posts, click here
“It . . .is . . .just . . .too . . .much . . .work.”
Frustration breaks our resolve, and our hearts collapse from the strain.
Chronic illness, which we must eat every day, is a fruit that’s bitter from the first bite. The monotony of our psychological diet leaves us malnourished as we struggle to find the strength to fight to live a life beyond.
So, at some point, even the brave, whose banner reads “We will find a way to be content,” find themselves prostrate on the ground. As you lean your ear to their mouth, you will hear them whisper, “It . . .is. . .just . . .too . . .much . . .work.”
Then, slowly, they bend one knee and then the other. Grasping a handicap bar, they pull themselves up. Their eyes tell the story: clear and focused on the day and its promise of pain, fatigue, trouble, and frustration. With the smiles of Mona Lisas, they ask themselves, “Do we cry out to heaven with bitter tears? Are we defeated?”
“No!” Birds scatter as the sound carries from sea to shining sea.
The more I read, the more I find a deep resolve in the Chronic Illness Community. Our struggles cannot be easily understood by those who do not experience the realities of our daily lives. At times, darkness settles on us, and we do not have the energy to fight. The length of time it takes for the depression to lift is unknown, unpredictable, and capricious. We know it will release us, eventually. However, in those bleak moments, it is just too much work. We need to remove ourselves from the demands around us.
Nevertheless, the more I read blogs written by people suffering from the wide blanket of chronic illness, the more I am amazed at their spirit. The heartbreaking and heartwarming stories carry the same underlying theme: It is just too much work, but I will not give up.
I love this aspect of my community. For the past six years, I have been determined to live despite my disease. I want to do all that I can for as long as I can. Sometimes this means tackling two steps to enter a friend’s house. Sometimes it means that I spend time with family even though I can hardly stay awake. Other times, I need to listen to my body and bow out of activities I was looking forward to attending. In the end, I have articulated my determination into the motto Never Give Up.
Often, I see wheelchair-bound people without any spark in them. My heart bleeds for them. Could it be that their resolve has been broken by daily frustrations? I watch them look at me, then my wheelchair, and then into my eyes. I smile a little; they smile a little in return. As we engage in an easy conversation, their words expose their pain. The mirror reflecting their value is cloudy, and their reflection distorted. In the midst of despair, they fuss and find reasons not to participate in any activities. Even though we both hope that the feeling will pass, their eyes reveal their secret. As they complain to me, they are covertly saying, “I don’t want to do anything. It’s too much work.”
They’re right. It is too much work – but, we will encourage one another to do it anyway. After all, what are our choices?
Recently, I read an article wherein the author, who has lived with a chronic illness his entire life, was lamenting how he felt pressured to “put on a happy face.” His main complaint focused on the inability of the people in his life who were reluctant to address the depression and dark moments that the chronically ill face, especially death. The author was angry that he had no outlet to express his feelings. Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who chronically ill and at peace with death must be “faking it.”
Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who is chronically ill and at peace with death must be “faking it.”
While I acknowledge that dark moments are part of the human psyche (chronically ill or not), not everyone fears death. Personally, I know of three people who were at peace with the inevitability of their death: my first husband, my niece, and a friend. However, I have also watched others who faced death with anger, fear, and resentment.
There are at least two issues underlying the ranter’s anger: (1) The perceived pressure to “put on a happy face” when the author would rather have talked about his impending death, and (2) the author’s assumption that everyone fears death. In fact, the author went so far as to say that if the dying person was content with the situation, then they were faking it. He said he hated those fakers.
I feel sorry for the author. He is facing the end of his life, he is angry, and he can only see the world from his point of view. To be at the end stage of your life and only see bleakness is a horrible way to spend your remaining days. I am also sorry that he does not have the support that he needs. (I wonder if the support is missing or if the support is not what he wants to hear.) Many people do not want to talk about death and they do not want to be around angry people. He might be in a Catch-22 situation. No matter what the specifics of his situation, I wish there was something that could be done to help him.
My chronic illness puts me at risk for a stroke or sudden cardiac death. Rather than churning my insides into a rancid soup of anger and hatred, I made the decision to be happy and do as much as I could for as long as I can. One of my new mantras is Don’t Give Up – Ever. I fear that the author has given up – on themselves and on others. Hence, the Great Divide and why he can’t understand how people can choose a different approach.
If we were to meet one another on happenstance, I wonder how the author would react to my words? Would he believe me that not everyone fears death? The range of feelings surrounding death are as varied as there are people. It is not a simple matter. In truth, the way we feel about death has a lot to do with the way we feel about life.
The three people I mentioned at the beginning of this post (who were ready to face death) were Christians. Whether or not you believe in God is not the point. My point is that Christianity gives the believer hope about the future and strength to face the present.
Please don’t misunderstand what I am saying. All three people had to deal with pain, a slowly deteriorating body, and dark moments. Still, spending time with them was a rewarding, enriching encounter. The more that they released themselves to the passing, the more serene they were in spirit. They had hope and a vision.
On the other hand, I have known people who did not have faith in God. As they faced death, the angrier they became. They spent their last days spewing hatred. Their beliefs had a deep impact on their feelings and psyche. Before you jump all over me, I know that there are people who do not believe in God but have passed away in peace. Still, there is a Great Divide about facing death.
Is death an end or the beginning?
You just might be wrong.
Because you believe something doesn’t make it true. Your perception is a reality, not the reality.
Take my uncle for example. Diagnosed with myotonic dystrophy in his 40s, he was scuttled off to live with his 82-year-old mother. As soon as he heard the news, he was done. It was his free ticket to sit all day, watching television, while his mother did all the work. He did nothing – not one thing.
For four years she waited on him. By the time my grandmother was 86, she needed help herself. So, we made room, and they came to live with my family and me. Four adults and two children in a three-bedroom ranch. The roles were modified. Now, my grandmother and uncle both sat and watched television from morning to night. They did not
participate in any family events. They did not want to do anything. They did nothing – not one thing. I did all the work. It was okay with me. I did it because it needed to be done. No expectations and no rewards.
So, what was my motivation? My grandmother and uncle needed help. Neither one had ever been kind to me. It was a fact. I didn’t care. The relationships were determined the moment I was born. (Probably before I was born.)
What does this have to do with truth and perception? My uncle was a skeptic. He would tell me I had an ulterior motive. “What motive could I have?” I would ask. “You have nothing. Grandma has nothing. I am taking care of you because you need a caregiver.” He never answered the question. He refused to believe that I took them in because they needed help. He would not (could not?) understand that their lack of grace towards me did not determine my actions towards them. He could only see life as a reflection of himself.
Grandma’s point of view? I don’t know. She would tell me stories of her life. In all of them, she was the sad victim. I would wipe her tears. Unhappy and dissatisfied, she looked at life through a glass streaked and stained with misery.
Today, I live with myotonic dystrophy. I do not sit all day watching television. I write, read, and paint. In addition, I visit people and invite people into my home. I attend church, a writer’s group, and a painting class. What do I see? Hope and love. Why? Because my belief is based on a faith in God.
For the last three months, I have been working on a portrait. It is still in process; an unfinished, challenging, ongoing, all-encompassing activity. In fact, it is a series of problem-solving steps. Every brush stroke is a considered motion. Ahead of that, there is the choice of hue, value, and type of brush for each stroke.
Yet, before I even contemplated the paint colors, I needed to have a vision of what I wanted to paint. After some time spent looking through photographs (life model was not available), I made my decision. Finally, I knew what I wanted to paint, who I wanted to paint, and what I wanted the painting to look like when I finished.
This brings me to today. Just as with any creative process, there is labor. Oil painting is something I love to do; nevertheless, there is frustration and aggravation. When I am not painting, my mind often wanders back to the canvas. In fact, I take several photos so that I can examine the current state of my painting. What can I do better? Where are the problems? How can I improve the image?
I have probably wiped down and scraped off more paint than is currently on the canvas. In fact, I am positive of it. Some of what I rubbed off was good. Indeed, one image was beautiful. Nevertheless, it did not reflect my plan. A portrait is more than capturing the likeness of the person; it is an attempt to capture the character of the individual.
We have all see portraits of dignitaries or famous people. Have you ever noticed the tilt of the head, what they are holding in their hands, what type of clothing they are wearing? All of it is designed to convey an important fact. The intention of the artist and individual is for you to know an answer to a “who” question. That big consuming question for so many of us.
All of this got me to thinking: our lives are canvases. We began life with an image already imprinted before any paint was applied. Upon birth, our parents started to add the paint with their brushes. They took a beautiful plan and added to it. Some of what they applied was solid and worth keeping. Much of it needed to be wiped off – maybe, it needed to be scraped off.
As you matured, you also began to add to your image. Eventually, at some point, you took the brush out of the master’s hand. Formulating a plan in your head, you changed the image. You might even have painted something beautiful – probably not. After awhile, your portrait started to have problems. You started to ask yourself What can I do better? Where are the problems? How can I improve?
At this point in your life, you might be struggling with a disability or some other difficulty. They are wayward strokes. Unlike other times when you could wipe down or scrape off unwanted “paint,” these strokes are permanent changes. It could be that the problems have helped you to focus on what needs to be changed. Maybe, you are finding that your troubles are developing your character. As we examine our lives, we are afforded the opportunity to stand back and unearth the original vision. The discovery process, the hard work and frustration, is answering the “who” question.
It may not be a neurotypical life; it may not be what you or I envisioned for our lives. Nevertheless, the portrait is not to be trashed. Your character will shine through. There is still a beautiful portrait sitting there – unfinished.
“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.” ~ C.S. Lewis (1898-1963)
Found this quote on The English Lit Geek blog site. C.S. Lewis’ words ring true today. What do you see and hear?
“If you don’t know me, then don’t tell me I inspire you,” she wrote.
When I read the above statement, I had to read it a second time. Wow, I thought, someone has had enough. I wonder what happened. Was it a specific “I am fed up” moment? Or, was her aggravation a compilation of unwanted “back slappings?”
Whatever had triggered her reaction, it had denotated an explosion of words. Her anger told a story of the internal angst that grew to the point of pushing people away. Obviously, she didn’t feel as if they knew her and her struggles. Maybe this is what she meant when she wrote, “If you don’t know me, then don’t tell me I inspire you.”
Over the last several years, people tell me I inspire them. It’s an odd experience because I don’t feel inspiring. In fact, I am not given to such ideals. Energy is leaking out of my muscles as if I were running on a bad battery. With no way to recharge my ions, I am consumed by living – today – in this moment. I have no alacrity to spend on being inspiring. My drivers are simple emotions: don’t give up, do as much as I can, make every moment count, and love and encourage others.
I can’t speak for the author of the above quote. However, I can tell you about me and what the word “inspire” triggers. For the first few years, an emotional weight was placed my back the moment someone told me I inspired them. I felt confused. What did they mean? My thoughts were as jumbled as my bewilderment. Oh, no, they think I am Herculean. At some point, I will disappoint them. What do they expect from me? I am not sure what it is, but I am already carrying a heavy load. Most certainly, I don’t feel capable of anticipating their needs. What if I fail at it? How can I be inspiring when it takes my all to just get through the day? I wonder what I inspire in them? Do I motivate them? Are they galvanized? If so, to do what?
I guess that was the crux of the problem for me: I interpreted their words to mean that I was fulfilling an unspecified need of theirs. My perception of the transaction carried a meaning not intended by the other person. All on my own, I took a kind word and turned it into a duty to perform.
Recently, someone took that burden off my shoulders with a simple qualifying statement. They said, “You inspire me to keep trying.” Bells ringing, lights flashing, and clouds whisked away. Ah, ha, they are inspired. Whatever they are facing, whatever trouble is looming in their life, they are motivated to keep going. Good. I am glad. They are encouraged.
All along, people have been giving me a gift. A kind word and a gentle love. No burden or pressure to perform. It was never about me doing for them. They are trying to encourage me, to give me something in return. They are attempting to make a deposit in my “bank of good feelings.” It was my goals being lived out in others.
They are galvanized to not give up, do as much as they can, make every moment count, and love and encourage others. They are inspired. It is a good thing.
Even if you don’t know me, I hope you are inspired.
With one final I want to jump, my mind took off with exhilarating memories of bouncing on trampolines and flying through the air. Two things I enjoyed as a kid: swimming and jumping. When small, personal trampolines first hit the market, I was right there in line to buy one. For years, I enjoyed bouncing – tiny, little flights of gravity-defying moments.
All those memories were buried away deep in the past. Until recently, when I took my grandson to an indoor trampoline park. If you ever have the opportunity, go.
The indoor place near me has four separate areas. Each one designed for a different purpose: freestyle, a basketball room, a dodgeball section, and a foam pit area. You can even bounce off the walls!
As I sat there watching my grandson bounce, jump, and fly into the air, I felt intoxicated. My body craved to fly. I wanted to bounce, to lift my feet off the floor. I wanted to defy gravity once again. For a serious moment, I contemplated it. For a very long, serious moment.
Then reality seeped into the crevices of my gray matter. Do I have the core strength to bounce? How uneven is the supporting edge? Would I be able to get to the mat and back? What if I fall? No, better not try. Maybe? No.
I live in a new world, the world known as You Can’t Do That Anymore – But You Can Remember.
Some people advise us to forget the past. They say it is best to live in the moment. “The past is too painful,” they preach. While I agree that living Right Here, Right Now is a healthy lifestyle choice, the past should not be forgotten. Memories of how things were before we became disabled don’t have to be pushed away. Our previous experiences add a richness to our lives. Not only are there valuable lessons to be learned, but there are pleasures to be relived.
To reminisce and, once more, taste the pleasure of precious moments are treasures to be discovered. Just like the unsolicited recall of an uncomplicated time in my childhood, we can choose to remember with joy – not pain or regret.
I may not be able to jump, but I can fly once more.
Even though muscular dystrophy attempts to lay claim to my life, I have found a few ways to come out from the shadow of my disease. One of my pleasures (and therapies) is painting. This creative form affords me the freedom to live beyond the limits of my physical world and to express feelings that expand beyond the limits that words impose. The more I paint, the more I feel compelled to paint. It is addictive and healthy. As I work to bring an oil painting to completion, I am restoring little pieces of me.
Two years ago, on a sunny, winter day, I was admiring the beautiful shadows trees were casting on the snow. The more I thought about those shadows, the more I felt motivated to paint their beauty. Then, the clouds came and refused to go away. Weeks passed without any sustained sunlight; brief moments were followed by long, gray days. There were no shadows. How symbolic! How often do we who feel as if our disability has made us shadows of our former selfs have taken the opportunity to hide?
Finally, the sun returned and the shadows could hide no longer. Fearing that they would quickly retreat again, I had no time to waste. Making changes to his day, my husband lovingly agreed to take some pictures with the hope of capturing those elusive beauties.
As soon as he returned home, I scrolled through the photos until I found the one that revealed their complex beauty. Taking printed photo in hand, I went to work. After some time, the painting was finished. The shadows would forever declare their presence to the world.
Now, for the final step: varnish to keep the elements from eroding and dulling the paint. Some artists advise that there should be a six-month waiting period before varnishing a painting. However, this time, I followed the advice of an expert who counseled that a painting could be varnished right away – if done within two weeks of the original drying time. So, after a week-and-a-half, I started to brush varnish on my painting. Suddenly, to my horror, I realized that the white paint was smearing and making the entire painting milky in appearance. I stopped immediately,
With painstaking effort, I slowly removed the varnish from the painting. Using dry brush after dry brush, I wiped away as much of the milky, white paint as I could. Then, I left the painting on the easel. I wondered, “Could it be restored?”
Returning to the painting two days later to assess the damage. There were areas that needed to be reworked. Mixing the paints slowly, I contemplated how to go about the process of showing those shadows how beautiful they were. Could I remove the stains? Would the shadows allow themselves to be restored?
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
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)
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.”
We all suffer from hopelessness. Those what’s the point, who really cares, whatever I do won’t matter thoughts can drag you into an Eeyore existence without notice. One moment, you are making plans and whistling a tune, then, bam, the next moment, you are moping around.
This emotional roller coaster of life begins the moment we enter this world. Although those with chronic illness have a slew of additional weights (pain, limitation, physical and emotional distress). If we are not careful to watch what words are floating around in our minds, we can lose hope. What happens in those moments when we move from hopeful to hopeless?
Recognizing the catalysts of hopelessness could help to alleviate the depression, and maybe, we will move quickly from hopelessness to hopeful.
You know who they are. These spewers of hateful messages. They love to find fault in you and the world Underlying their crushing message is the motive to oppress you. Their desire is to keep you contained, controlled, and powerless. If you can’t avoid them, restrict their influence on you. Refuse to believe what they say. Toss their garbage out.
Do you feel disconnected, alone, unwanted? Maybe you are struggling with feeling unworthy of love, care, and support. These emotions can drive you to withdraw which, in turn, will exacerbate the situation even further.
Having a purpose-driven life can keep you from falling into the trap of feeling afloat. Every person has abilities. Often, the tendency to compare one set of unique attributes with another person’s can lead to feelings of inadequacy. Honestly, every person can be a gift to someone else. If you set out every day to encourage, love, and help others, you will find hope. For in the process of reaching others, you are giving them hope. And, hope is contagious. You will catch some for yourself along the way.
When we feel incapable or unable, we focus on all that we cannot do. This is especially the case for those with limited opportunities due to poverty, learning disabilities, and physical handicaps. You cannot change many things about your life, but you can change your mindset. Rather than focus on what you cannot do, focus on what you can do. And, you will find, you can do a lot.
This overwhelming sense of doom is one of the strongest drivers to feeling hopeless. If you find yourself facing serious financial problems, life-threatening illness, or chronic illness or pain, hopelessness can settle in for the long term.
The complexities of mind-spirit-body dynamics are often ignored. We are driven by our beliefs, thoughts, and emotions. Our desire to control our lives can be so strong that we harm ourselves. We hold our opinions too strongly. Our grip on our reality refuses to consider other possibilities. Examining your thoughts and replacing negative conclusions with positive attitudes can be one of the most productive habits you adopt.
Our mind is very powerful, and we ignore the talents of our spirit. Every thing that you can see, touch, smell, feel is temporary. Your spirit is waiting to respond to your command. Let yourself move beyond the physical world. Take the opportunity to adjust to your new reality. Don’t cope, hope.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. (2 Cor. 4:16)
The sand at my feet haunts me with memories:
Me, as a child, playing at the beach; Me, with my child, playing at the lake.
My heart beckons me, and I respond, “Yes, yes, I will find new ways to have fun.”
So, now, I dig deep into my soul. Pouring out my pain. Fun can be, is redefined. Laughter bursts. I find joy in watching others play in the sand and water.
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?
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.)
I have hope.