Author: Rose Wolfe (Living Free with disAbilities)
Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately.
It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities.
Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.
I’m writing to you from my bed at Stanford Hospital, not to sound dramatic, but it feels very fitting that I should start my letter here.
When I was fifteen I had a tumor the size of a small orange removed from my brain. I’m here now, thirteen years later waiting to see if I’m a candidate for a third surgery, this time to stop my seizures.
Before every appointment, before MRI, I went to you to help me prepare myself for what was to come. Whenever my mom hears you on repeat she knows where I have gone in my mind.
My siblings, 12 and 14 years older, started listening to you in high school, so naturally, I started listening to you as a toddler. You became my comfort, my reminder of my sister after she left for college. You were my…
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.
Faith McCord’s recent experience is a sad commentary on a certain subset of doctors. I am sure other individuals with chronic illnesses have stories to tell, as well.
#disability #chronicblogs #chronicillness
My doctor – the one I trusted (past tense) – earlier today, informed me I was a fraudster.
I was shocked and so was my fiance.
I normally do upbeat posts because that is how I try to be in my everyday life. This post is a true account of what happened to me today. If you wish to skip it, of course I’ll understand.
I had to have a doctor’s note for the government department that deals with my disability benefit, and since the Nasty Party is in government, disabled people are put through the wringer – I have yet another assessment, just 8 months after the last. For nine years I am disabled with severe unrelenting pain. I am barely able to walk a few steps and then I’m unable to. Neuropathy and inflammatory pain just doesn’t disappear! (I wish!!). Anyway, this doctor’s note was…
My daughter called me the other day. It was one of those “just to say, ‘Hi,'” phone calls. Nothing important, no purpose – a lunchtime catch-up. Although it was a sweet moment, this isn’t what made me cry.
We talked about her job and a recent promotion. I am very proud of her work ethic and her accomplishments. I am delighted when others see in her the beauty of her mind and her soul. My love for her flows to those around her. She has worked hard to gain the respect she deserves, but this isn’t what made me cry.
Recently, in a moment of high energy, I took a moment to do a little, silly “dance.” It all started as I was leaving the sanctuary and I noticed a friend enjoying the closing song. Most of the congregation had left, but a few of us remained. Rising out of my wheelchair, I grabbed my friend’s hand. Together, as we sang and swayed to the music, another friend joined us. (My husband caught the moment on his phone and had sent the video to my daughter.) My daughter and I laughed about the joy of the moment. As I related the story behind the video, we talked about spontaneous physicality and about how few of these opportunities were available to me. The energy required to stand and sway is not often possible. Usually, my heart wants my body to participate, but my disease refuses to comply. However, this isn’t what made me cry.
She turned the conversation around to me. “How are you doing?” she asked. I told her that I was taking a painting class at the local art museum, again. This time around, the art instructor had demonstrated a technique that had broken a creative barrier for me. I was elated with the new style and eager to generate some new pieces. (Maybe even a Christmas gift or two.) This isn’t what made me cry.
My refusal to give in to my disease keeps me busy (with lots of naps). Once a month, I attend a writing group. They are a great group of people, and I told her about the inspiration and constructive insights I have gained from their critiques. We meet in the late evenings, and I need to take a long nap before I head over to our meetings. The energy cost is high and the next day is spent in bed. Nevertheless, this isn’t what made me cry.
Finally, the conversation turned to the progress of my disease. I told her that I have had more incidents of the falling/slipping out of bed. My husband springs out of bed and rushes to me as I quietly call out in the middle of the night, “Dennis, help me. I am falling.” In addition, I am starting to have trouble sitting up in bed in the morning. My brain tells my body it is time to wake up; my body refuses to comply. I cannot sit up or roll over. I just lie there: observing the war between mind and body. Again, I need to ask my husband for help. “Dennis, I can’t sit up. Will you please come help me?” As always, my husband responds quickly. Telling her about this isn’t what made me cry.
When I finished telling my daughter about the physical problems I am having, I said, “I don’t know what I do would if something happened to Dennis.”
Immediately She said, “Mom, you would come to live with us. Not in our current home. We would get a different place that would accommodate your needs.” You guessed it. This is what made me cry.
I was standing at the very edge of a pool – the kind used in ancient days – a healing pool. Suddenly, children were walking toward me. Each one reaching out a hand for me to pull them out of the water. They ranged in age from 2 years to 18 years old. As I grabbed them, they stepped aside and stood behind me. No one spoke – not even me.
With the last one lifted out of the water, her hand in mine, I turned to survey the sea of children. The older ones held little ones in their arms.
We all understood that each one was responsible for the other. But, I knew that ultimately I was to care for all of them. Somehow, I needed to find a safe haven. They needed food and clothes and a place to stay. How can I feed all of them? I wondered. There must be at least a hundred children.
Flowing together, I lead the river of lives as we streamed down the crowded streets. Even now, we made no sound. Not knowing where to go, I wandered – each step with the weight of a hundred souls. As if it were the line from a psalm, the words How can I feed them? kept cycling in my mind.
Winding our way through unknown streets, I became disoriented, but the children continued to follow me unheeded. Where will these children be safe? I can’t take care of them. Look at how the older ones care for the younger ones. What am I going to do?
We came to a clearing – a piazza akin to the kind in Rome. At the far end stood a Cathedral. I headed there. Certainly, they will help me. As I drew closer, the lines across my brow disappeared, and I smiled at the children nearest me. I nodded my head in the direction in which we were headed, for an orphanage stood 300 yards away.
Nuns dressed in the traditional habits worn in the 1960s or earlier stood in the courtyard of the orphanage. Brushing dirt from her skirt as if the swiping action of her hand could remove the stains from a garment that had been worn beyond its useful years, one of the nuns approached me. Her clear, brown eyes scanned the children and came to rest on me.
“Good afternoon,” she said with a voice as pure and clear as her eyes.
“Hello,” I replied – hoping that my panic was not too evident to the children. “It seems as if I need some help. We need food and a place to stay. Actually, the children need food and a place to stay. I am not asking that you care for me, also.”
Tears flooded her eyes. “We have no food, and we are at full capacity – beyond full. There is no room for more.”
“I understand.” As I reached out my hand in farewell, she closed the short distance between us and hugged me. The embrace felt natural as if she were my sister, and I hugged her in return. Then, I pulled back and looked once more into her eyes. She understood, also. No words were necessary.
Turning away from the orphanage, I noticed the faces of the children. They calmly stood before me, waiting to follow. They understood, too. They always had.
“We have not found home, yet. Let’s continue onward,” I called out to them.
They said nothing in return. Their silence was a comfort to me. It was at that moment that I knew that my search was over. There was no other place for them; they were my children. Hadn’t I pulled them out of the healing pool?
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?
When I read the following post, I identified with the adjustments we make when first diagnosed with a chronic illness. Her storytelling skills will draw you into her experience. Hope you enjoy it as much as I did.
I have never heard of charcot marie tooth until my son was diagnosed with it approximately ten years ago. I always knew something was “wrong”. He was clumsy and fell often but i thought he was just growing into himself. One day in second grade, his teacher called me. She was screaming at me and asking me what is “wrong with your son?” “Doesn’t he realize he walks into everybody?” “I can’t have this in my class”. She basically went on a screaming tirade about my son. I hung up both so angry at her words and they way she spoke about my son that I wanted to just march up to the school and get her fired and then kick her ass. But I didn’t. I took a few deep breaths and remained calm. After a ton of research I had him tested at a local hospital. They did a myriad…
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.
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.
“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?
There we were at WalMart. I know, ugh. Shopping is not one of my favorite activities and, if I were to pick where to go, it would not be WalMart. It is too big, and I find it exhausting. But I needed to get a spill-proof cup because I have a tendency to tip over my water glass in the middle of the night. Anyway, the three of us (my husband, my caretaker, and I) were out shopping.
At first, I thought I would just head out on my own. It seemed reasonable: I would roll my wheelchair down to the car, press the button on my handicap-conversion van, roll up the ramp, and transfer to the driver’s seat. Of course, clamping the wheelchair into place presented a significant problem. With myotonic dystrophy weakening the muscles in my hands, there was no way I could secure my wheelchair. So, the necessity of someone coming with me, and both companions wanted to accompany me.
It is a wonderful life I have to enjoy the company of two people who care for me with loyal devotion. However, I am ashamed to admit, sometimes it drives me crazy. Buying the cup, for example. As the three of us approach the aisle, my two loving companions spring into action. As with the flutter of two birds, they set about selecting cups and showing them to me. As I reject each choice, they happily return it for another option. Now, they are trying to find what I am looking for and are doing a fantastic job of it. Nonetheless, I start to feel overwhelmed and cranky.
Rather than having the opportunity just to look at the display, I find myself having to explain what I am looking for and why their selection does not fit my requirements. At this moment, I feel as if I have lost adulthood status. No longer am I in a position to take care of myself. First, I can no longer just hop in the car. Second, I cannot drive myself to the store. Third, half of the shelves are out of my reach. Lastly, I am not in a position to quietly make a minor purchase choice on my own.
As I think back on this scenario, it occurs to me that I could have told them how I was feeling. It would have been easy to say, “Thank you for being considerate. However, I would like the opportunity just to look at the cups and ask you to reach the ones that I cannot.” Yes, it would have been easy. Yet, I did not. Maybe next time I will remember.
Living in a wheelchair has robbed me of my adulthood in many situations. Most of the time, I can acknowledge the feeling, understand the source, and avoid the tension. Sometimes, it just gets to me. I am not proud of myself. It is a weakness.
In some ways, it is akin to what elderly people have told me. As they become unable to care for themselves, their children start to take on the parental role. This status change upsets the emotional wellbeing of the parent-adult. For the elderly and for me, to lose status and become dependent on someone else is a significant loss of equilibrium. I believe it is the result of the loss of the I Can Do It Myself feeling established in early childhood. It is when you are no longer you.
Probably, you remember those first occasions of being able to tie your shoes or button your coat. Those were glorious moments of independence and sense of self. Sadly, as we weaken from disability or the aging process, those moments are slowly replaced with attempts to reaffirm our status. But it is a losing battle. The body will not obey, and we are slowly delegated to a subadult status.
This is not the end of the story. Even though my body is wasting away and I am losing my status, I am afforded the opportunity to mature in my spirit. For as I develop patience, I cultivate the character to understand that my struggles are momentary, but my hope is eternal.
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (2 Cor. 4:16-18)
Revised August 9, 2016
Originally published Feb. 23, 2016
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
I watched him approach, the summer sun reflecting off the white stick making its own music, tap-click-tap-tap, as it hit the sidewalk. The girl holding his hand looked to be about 11 years old, my age. Fascinated by his blank eyes that looked heavenward, I found myself unable to turn away. Knowing that it was rude to continue my scrutiny, I forced my chin to move; my eyes following at a slower pace. It was then that I noticed her eyes. Those clear, brown eyes were staring at me; then, just as quickly, she tilted her chin and looked at the ground.
Eventually, the girl and I became friends for a school year. Because it was just the two of them, her life centered around her dad’s needs. Even though I was responsible for the laundry in my home, I still had plenty of time for me. She didn’t. Back then, there was no ADA, no reasonable accommodation, and certainly no stoplights that talked or beeped. It didn’t occur to me until just recently how difficult her life must have been.
A parent with special needs compelling his child into a life of servitude. She never complained. He always complained – about the failure of social services.
The next summer, they were forced to move into a housing project that was a community of the marginalized, poor, and disabled.
Where was our charity?
I grew up reading Charles Dickens. Loved the guy with his embellished stories and characters that were characters .
With strong imagery to support his rich and complex stories, there was much to glean from his writing. Nevertheless, Dickens’ social criticism bore into the inner layers of my young heart. The contrasts between the lifestyle of the affluent and the destitute were strong and severe. Lurking in the background, society’s lack of compassion compelled the orphans to be pickpockets and the beggars to be connivers. Otherwise, they could not survive. Having lived in a time when America’s streets were not congested with the disenfranchised, who were forced to expose the intimacy of their lives, I wondered how could respectable people walk by the needy without acknowledging them.
Then, the 1980s hit, and President Regan made changes to the Housing and Urban Development’s policies. Trickles of homeless people started to leak onto the streets. Today, we have neighborhoods of cardboard homes tucked away in the dirty corners of unwanted land. These communities are filled with the mentally, physically, and financially disabled. Dickens’ world is our world. History has repeated itself once more. We have become the respectable people who walk by the needy without acknowledging them.
Where is our charity?
In 1990, the American Disabilities Act provided for regulation of handicapped parking spaces. Based on my observations at the time, the spaces were usually empty. So, I concluded that there were too many spaces set aside. Besides, I thought, how many disabled people could there be? I knew of only one. My uncle – who never went out unless it was for a doctor’s appointment. Yes. I was ignorant and callous.
Nevertheless, the handicapped spaces were left pristine.
Today, violations are rampant. It is common to see people park in handicapped spaces without the required placard or plate. Setting aside those who appear to be healthy but are justified in their use of handicapped spaces, we know that there are many people who use the spaces illegally. In San Francisco, the misuse of the spaces is so egregious that the fine for one violation is $1,000. Yet, the law has no bite.
We have become a society that clamors for justice. However, when it comes to examining ourselves, well, we don’t.
Will there be charity?
“Did universal charity prevail, earth would be a heaven, and hell a fable.”
Charles Caleb Colton
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.”