Invisible Fences

It was one of those glorious Sunday afternoons. The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.

I was at a family gathering. Didn’t matter that it was a baseball game. Yes, I am one of those people who doesn’t really care for baseball. I know, I know, it’s America’s favorite pastime. Or, so I’ve heard all of my life. Nevertheless, even though I am a born and bred American, it is not my favorite. Honestly, it would never even appear on any things-to-do list of mine.

Yet, there I was with the gang watching baseball. And, I wasn’t only sitting there passing time until it was over. Nope. I was yelling and whooping. Yes, I had become a fan in a few short moments. Mimicking the guy behind me, I called out such terms as, “Good eye.” (Huh? Good eye?) What happened? My grandson was playing.

Funny how one’s perspective can change with the slightest alteration in circumstances. It happens all the time. We just don’t notice until something unique comes along – such as my grandson being part of a baseball team. Surely changed my perspective on baseball. (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)

There is another area where my perspective has changed, also. It is the number of invisible fences that the mobility-challenged face every day, every where.

For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people. The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks. All this fabulous planning and accommodation helped make my day more enjoyable.

However, challenges still needed to be faced. Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands. In between? A sea of rough, uneven gravel. To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot. Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow. I can’t even imagine how difficult it would be for someone using a walker.

The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game). It is that time when praises are given and awards are handed out. Only, the dugout was another sea of gravel away.

So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.

World’s First All-Accessible Water Park

Inspiration-Island-Map

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?

Do You See What I See?

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Faces? Vases?

Initially, which did you see? How long did it take until you could see both easily and clearly?

Our eyes see more than our brain interprets. Visual cues all around us are being filtered out, and our awareness is limited to our experiences.

When you encounter a set of stairs leading to a building, what do you see? How about a soap dispenser attached to the wall above a sink? What about a store’s double-door entry with no handicap button? The last question gave it away, right?

If you are ambulant, then you probably don’t give much thought when encountering the above situations. Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting. For the wheelchair roamer, we see obstacles. In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away. And that it how it feels. We are turned away from participating, turned away because we are powerless, turned away because of an oversight.

“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled. ‘There was an oversight,’ one official conceded.” (The Week, December 23/30, 2016, p 6)

Facing Death: the Great Divide

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?

Off Topic For A Moment

Heart-on-a-String

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)

Catalysts of Hopelessness

BLUE-HEART-Cropped-WEB — Oil Painting by Rose Wolfe

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.

Some People Are Hope Killers

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.
Feelings of Alienation

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 No Goals

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.
Feeling Restricted

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.
Feeling Trapped

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)

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#DontCopeHope
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The Ability In disAbility

Countryside-Web — Oil Painting by Rose Wolfe

Toiling with the earth and fighting a year-long battle against nature, farmers hope for high yields from the perfect crop. Even though the farmer knows that nature will always win (for she has an arsenal at her disposal), the farmer seeks to control that which cannot be contained. Untameable, nature arbitrarily sends drought, flood, ice, and weeds. One such challenge is the feral stinging nettle plant.

Carried by the wind, the seed settles in the farmer’s fields. The misery of the plant is hidden on the underside of its heart-shaped leaf where there are tiny hairs that will bite you with an irritating sting. Even so, arms at the ready, workers set out to eradicate the plant from their fields.

However, the nettle is more than an unruly nuisance to be yanked out by its roots and tossed into the fire. Surprisingly, the leafy green herbaceous contains a whopping 25% protein and a slew of nutritional vitamins and minerals.

Just like the farmers, we toil for perfection; although, our crop is the perfect life. Convinced of our omnipotence, we make plans as if we are the masters of our lives. Oblivious to the reality that nature cannot be controlled, life is not perfect, and troubles will come into our lives, our plans are ill-conceived. Therefore, it is not surprising that we are dismayed when stinging nettles blow into our neat schemes. And, with the strategy of a general, we raise our banner of war against the unwelcome intruder.

Most Americans strive to live a life free from all difficulties. We dream of attaining the perfect life — which is nothing more than a life of ease. How many of us want to be the occupants of an Adirondack chair nestled at the edge of the Mediterranean Sea? Or, maybe, we prefer a cabin in the woods overlooking a calm lake with no one else in sight.

Whatever form our perfect life takes, it does not include tribulations. When they come, we are quick to beg God to remove them. Maybe we become angry and lament, “Why me?” Most often, we are slaves to our delusion that bad things only happen to other people. But, they don’t. Stinging nettles settle into our lives and illness, disease, accidents, and pain disrupt our lives.

Chronic illness cannot be eradicated. There is no miracle cure. We, who suffer from chronic heart-stinging nettles, learn that we cannot wage a war against that which cannot be controlled. Eventually, we take a different approach: we consume the plant before it consumes us. Having fought the war for years, we evolve into warriors with the ability to be nourished by the nettles.

Please don’t misunderstand me. I am not saying that suffering is good. What I am saying is that we can turn our lives around when they have been turned upside down. As much as we want our chronic illness, our pain, our depression, or our anxiety to disappear, we are not masters of nature.

By devouring our chronic illness, we develop patience. From our patience springs wisdom. We see differently, feel differently, and understand differently. Living with a chronic disease teaches us hard lessons. Every day is a new challenge, and we continue to learn how to live with our disability. We may not be able to do much (if any) physical exercise, but we strengthen our minds by taking our thoughts captive.

Fueled by our decision to devour the weeds in our life, the stinging nettle provides us with insight, sensitivity, and tenderness. Our ability to comfort others is intensified. Our purity of heart shines through our words and deeds.

Our disAbility has given us the ability to live beyond our disability.

View From My Wheelchair: Weighing Your Words

Prov-16-24-WEB

Seeing an aquaintance, I smile. We have both been busy and have not had the opportunity to hug. I am glad to see her. She looks great.

“I like your haircut,” I say. “It looks cute on you.”

“You need to stop losing weight,” she replies and touches my cheek. “You don’t want to lose too much weight. Your face will get too thin.”

“Is that a compliment? Because I feel great.”

“Well, just stop losing weight because you don’t want to lose more.”

For most of my life, I was thin. In fact, when I was 16 years old, I went on a weight-gaining regime. With the research available at the time, I tried a 3,000 calorie/day diet. It was crazy – peanut butter sandwiches and strawberry sundaes prevailed. The result: a rash from too many strawberries and no significant weight gain.

After the failed experiment in trying to gain weight, I resigned myself to being angular, lanky, and thin. As I matured, my metabolism slowed down, and I filled out. Eventually, in my middle years, my weight was within a healthy range.

Muscular dystrophy changed everything, and the pendulum swung in the opposite direction. Even with a 1,300 calorie/day diet and regular exercise, I gained more than 20 pounds in two years. I knew that my disease was making mush out of my muscles. So, I resigned myself to the weight gain while I still adhered to counting calories.

Noticing the toll on my energy and mobility with each pound gained, I struggled to lift myself and walk short distances. A new cycle was formed: less mobility – weight gain – fewer calories burned – weight gain – less energy – weight gain.

Then, one day, I decided to seek the advice of my friend, Beth, who adheres to an anti-inflammatory, gluten-free diet. My motivation had nothing to do with weight. Even though I was already adhering to a healthier food approach, I was interested in the gluten-free aspects of her lifestyle. Armed with experience and knowledge, she filled me with delicious bites of information. Venturing into the world of glycemic indices, food additives, and alternatives to refined sugar, I discovered new food combinations that are beneficial and nutritional. I am glad that I decided to ask her for help. My friend has been instrumental in guiding me on my personal journey to a new lifestyle and has been my recipe guru.

Quite the opposite of my failed experiments with calorie counting, the switch in my approach to my food intake has had positive results. I feel better. Just recently, I painted for two hours. May not sound like much to you, but I was down to painting for 30 minutes at a time. Even though my energy is still low, I do not feel fatigued all day long.

Another gain from the change in my diet is that I have lost 23 pounds in seven months. Along with the nutritional benefits to my body, I am convinced that my weight loss is contributing to my increased energy levels.

I am happy. More energy, less weight to lift, and feeling productive have all given me a boost. The quality of my life has improved.

The encounter, I described at the beginning, with my acquaintance is not an isolated event. Startingly, people feel free to make negative comments on my weight loss. What gives? According to my doctor, I am within the ideal weight range for my age, height, and gender. Nevertheless, rather than complimenting me on losing weight, some people feel the compulsion to complain about it. Funny, they don’t tell me I have lost too much weight; they tell me I might lose too much. How do they know? Do they realize that what they say hurts me?

As a disAbled person, I am forced to live in a world of neurotypical patterns and ableist attitudes. Every day is a struggle. Speaking for everyone who is facing tribulations: We are wounded warriors. Please restrain from offering unsolicited advice on what we need to do or do not need to do. The old adage: if you can’t say something nice, don’t say anything at all should be your mantra when engaging with a disAbled person. Positive words are welcome. Negative words are damaging. Be an encourager.

Kind words are like honey–sweet to the soul and healthy for the body.
Proverbs 16:24

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View From My Wheelchair: Accessible Air Travel

If you have the ability to move, even if it is from a wheelchair to an airline seat, you may not have realized that airline travel is not an option for those individuals whose cannot make the transition.

Recently, the Muscular Dystrophy Association has been working on making changes to travel accommodation for individuals with disAbilities. In two recent posts, they have articulated changes that would improve life for the mobility-challenged and the current challenges. In addition, you will find useful links.

“Accessible Air Travel Resource Center

Access to air travel is an important element in living life without limits. The ability to travel by air impacts many aspects of life including options for employment, education, and whether you can get back and forth from a clinical trial or a specialist’s office that is far from home.

October 2016 is an important milestone in accessible air travel as it marks the 30th Anniversary of the Air Carrier Access Act (ACAA), which requires equal access to air travelers with disabilities. The law explicitly prohibits discrimination against travelers with disabilities, and applies to both domestic and foreign air carriers who operate in the U.S. A few years after the law was enacted, the Department of Transportation (DOT) issued rules and regulations governing the application of the ACAA. These rules define the rights of passengers and the requirements of the airlines under the law (Title 14 CFR Part 382). You can read the full text of the rules here, or a summary of the rules here.

As the 30th Anniversary of the ACAA approaches, we celebrate the great strides that have been made in making air travel accessible, but are also reminded of the opportunities that remain to improve the experience for air travelers with disabilities. MDA is working with policy makers, industry, stakeholders and disabled travel advocates to support initiatives and activities to increase accessibility in air travel.”

and

“Accessible Air Travel: An Important Element of Living Life Without Limits

by Kristin Stephenson | April 4, 2016

wing-221526_960_720 In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel. The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.

As the 30th Anniversary of the Air Carrier Access Act (ACAA) approaches, MDA celebrates the great strides that have been made to increase air travel accessibility. In the three decades since Congress passed this landmark legislation that requires equal access to air travelers with disabilities, the law has permitted thousands of MDA families to travel more freely – something that would not have been possible before the ACAA. MDA also appreciates the efforts that air carriers have made to help disabled passengers access air travel.

In light of the many positive changes that have taken place, however, disabled passengers continue to face significant challenges—and we recognize that there is still work to be done. MDA is working with policy makers, industry, and other stakeholders and disabled travel advocates to support increased accessibility to air travel. A few of the ways that MDA is engaged include sharing information about resources available to disabled air travelers on our Accessible Air Travel webpage, partnering with airlines to provide feedback regarding the information they provide to disabled passengers, and participating in the Transportation Security Administration’s (TSA) Disability Coalition.

MDA is also actively engaged in supporting legislation that would:

Study the use of in-cabin wheelchair restraint systems;
Identify best practices in airport accessibility;
Examine training policies regarding assistance for disabled air travelers; and
Create an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of disabled passengers.

MDA particularly supports the concept of a study to examine ways that wheelchairs could be accommodated in-flight through the use of cabin wheelchair restraint systems. The potential for disabled passengers to remain in their wheelchair in-flight is important as travelers must currently transfer multiple times—even when taking a direct flight. In fact, up to five transfers per flight segment are required for many passengers—from wheelchair to aisle chair, from aisle chair to airplane seat, from airplane seat back to aisle chair, and from aisle chair back to wheelchair. Such transfers are especially challenging—or even impossible—for those living with muscle debilitating diseases, and each transfer comes with the risk of injury. The potential for a disabled traveler to remain in his or her wheelchair in-flight is imperative to study as such an approach could not only potentially enable safer travel, it could also significantly decrease damage that occurs to wheelchairs when they are placed in luggage/stowage areas for transport.

As these and other efforts regarding accessible air travel evolve, we will keep you up to date. To receive information related to accessible air travel and other policy and advocacy initiatives, register to receive MDA’s Advocacy updates here.”

Which Came First? Expectations or Beliefs

Seed of Change Cropped — “Seed of Change” oil painting by Rose Wolfe

Several years ago, I came to the stunning realization that I was wasting my life. My pre-judgments were determining my perception of events. I should have figured this out long ago, but I was too busy reacting.

You’ve done it, too. Someone looks at you. You interpret the look, and, boom, off you go with your emotions riding high.

We have a predilection to interpret events based on our assumptions. In fact, we will often lie to ourselves. “I am right.” We tell ourselves. No reason to test the veracity of what we think. Humbleness is a lost art – if it ever was an art.

I wonder, do we have the capacity to be less reactionary? Why do we jump from perception to conclusion? What dusty rooms in our collective minds need cleaning out and rearranging?

Every time we agree or disagree with someone, we are reinforcing a belief – the unspoken adherence to a system of truths. Most often, we do not bother to test out our theories before we adopt them as truth. It is this factor alone that bothers me the most. I know I am guilty as charged. Yes, I have a trailer truck of conviction debris that I am pulling along behind me.

Acknowledgment is good, but how do we unshackle ourselves from our burden of labeling others (and ourselves, also)?

Let’s start at the beginning. How would we describe our childhood, our adulthood? What did we expect to happen along the way? What do we believe to be the reasons behind the events of our story? Come on, we all have a story. We have written it and are now living it. It is our reality.

The next part gets tricky. Our reality feels very real to us, but it is not reality. Huh?

I don’t know which came first, expectations or beliefs. What I do know is that they are circular. Our expectations and beliefs drive each other. The end result is our reality. Nevertheless, we can change it. How? By changing them. Challenge our expectations, beliefs, and interpretations. It may feel as if our landscape is quicksand, but we are not stuck. The way out is through the pathway of self-examination.

The journey to a new reality begins with a reinterpretation of our story and, by default, a redefinition of our personal reality. Start telling yourself new stories. Not only who and what you are, but tell yourself new stories about the guy you pass every day. You know, the guy begging for money.

How would you describe him? Have you written him off as an alcoholic, a druggie, a bum? What if you are right? Does it matter? Does it relieve you of compassion?

One time, I was sitting in my wheelchair waiting for my husband to pick me up after a doctor’s appointment. It was a beautiful summer day, and I rolled over to a nearby park. Across the street was an elitist residence tower for the rich and wannabe famous. My book was tucked behind me in a bag just out of reach. As the noble walked by, staring straight ahead, I attempted to get their attention.

“Excuse me.”

“Wait, I don’t want any money. I just need . . .”

“Please, could you . . .”

Over and over again, I tried. Not one person even turned their head.

Finally, a little woman pushing a shopping cart piled high with plastic bags, shuffled over. “Do you need help?” she asked.

“Yes, would you reach into my bag and get my book out?”

She reached in, handed me my book, and smiled at me.

I smiled back.

The Social Construct of dis.a.bil.i.ty

Disability. Dis-ability. disAbility. Dis.a.bil.i.ty.

Charcoal sketch by Rose Wolfe

I have a label. It is dis.a.bil.i.ty: an impairment of function. You might think that it doesn’t matter. After all, there is nothing tragic about wheeling around in a wheelchair. You’re right. Until I try to become part of the world around me.

Making the decision to participate in the public arena takes courage. Frequently, people react to my presence with patronization, irritation, intrusive gazes or disregard. In effect, I am marginalized. Garnering the strength to face the pity, hostility, and condescension requires planning and determination on my part. The effort is physically and emotionally
draining. Sometimes, I do not have the fortitude to face another day wherein not only am I struggling with my impairment, but I am also wrestling with a myriad of social barriers. Even with ADA requirements, society functions with the assumption that everyone is healthy and non-disabled. Although, the most egregious barriers are the unacknowledged prejudices that are prevalent in society.

Recently, I went out to lunch with a friend. The bathroom (which had the compliant ADA handicap symbol) was not large enough to accommodate my wheelchair. I had to use the facility with the door to the stall left open. This humiliation is not an uncommon experience. Many times, public facilities lay claim to being compliant, but in reality they are not. Checkout counters are blocked by display cases, napkin holders are out of reach, doors are without an activation control button, and stairs are without ramps. Physical barriers prick my energy, but the subtle hostility of people lance me and drain me of all tolerance. I am constantly confronted with the stranger who is prejudiced against anyone who needs special treatment. There is an unspoken expectation that my needs should not be greater than theirs. They are jealous that I get a special parking spot, that I need chairs moved out of my way, or any number of other disruptions to society’s organization of how things should work. I am stigmatized.

These struggles are not mine alone to bear. They are borne by all who have a dis.a.bil.i.ty. Bearing this socially construed label brings harm to the psycho-emotional well-being of all of us who have been, are, and will continue to be stigmatized. We are battered by the demand to be un-disabled. However, the struggle against an affliction (which limits our ability to function) is light in comparison with the feelings of being worthless, a failure, burdensome, and crazy. If we are not careful, we will be brainwashed and internalize the oppression that we face every day.

How often do we try to pass as being able? How often do we excuse rude behavior? Are we allowing our self-esteem to be damaged? We know that our caretakers get drained and that the public does not understand our daily battles. Therefore, we feel pressured to accommodate the abled individual. The result? A loss of our value. The hidden emotional toll of anxiety and loss of community burrows into our heart. Another energy drain.

Rather than being disabled, we need to disabuse the public of their labeling system. As another blogger (Tony Single) stated, “Labels are not for people. ..We’ve lost touch with our hearts. Our identities are rubber stamped. Society dictates our self worth.” (unbolt.wordpress.com.)

Not only do we need to change society’s understanding of who we are, we need to stop our own madness. We are not our disease. All of us are functionally limited. Working together, we can empower the individual to become part of the whole. For we are a socially-conscious unit, and what we do to each individual has an effect on the whole. There is a Bible passage that states this concept eloquently:

“The eye cannot say to the hand, “I do not need you.” Nor can the head say to the feet, “I do not need you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and the parts we consider less honorable, we treat with greater honor. And our unpresentable parts are treated with special modesty, whereas our presentable parts have no such need.

But God has composed the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its members should have mutual concern for one another. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” (I Cor. 12:21-26.)

The Truth is relevant.

Suffering Changes Our Reality

Chalk Heart

You can’t choose what happens to you,
but you can choose how you respond.

Recently, Faith McCord observed that “(W)e choose happiness – a quieter, deeper, different kind – despite and because of poor health.”

Having lived with myotonic dystrophy for years, I can attest to the veracity of her statement. Chronic illness demands an awareness not only of our bodies but our disposition, as well. Suffering puts everything in perspective.

Suffering Changes Our Reality: So much of what we think or feel is metamorphosed not only by what happens to us but by how we interpret those events. Have you ever experienced something so intense that you felt as if you were observing life rather than living it? Our senses become heightened. There is a similar experience for those who suffer. Over time, we become more real.

A good example of this is in the children’s book The Velveteen Rabbit:

“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse.”It doesn’t happen all at once. . .It takes a long time.”

Facing chronic illness drains the superfluous sentiments from our lives. Over time, we start to care about what matters. Reality is redefined. There is a realness that we did not feel before. Acquiring things is not as important as having basic necessities: health care, medical equipment, and physical and emotional support. We learn the value of friendship and love.

A Mystery of Suffering: We learn something else, too: Happiness is not happy feelings. There is the “quieter, deeper, different kind.” For those of us who have had to endure hardship develop a maturity. The deep cut to our heart, the anguish felt to the core of our being opened us, and we became real. We are wiser.

Recent events in the United States, Brussels, France, Somalia, and Afghanistan have changed reality for the world. There are no safe places. We have been exposed to a sudden, permanent transformation. The chronically ill have had a permanent transformation, as well.

Of course, the psychological impact of terrorism has a unique niche. However, suffering demands attention. We cannot ignore our pain, our depression, or our anxiety. Solutions need to be found.

In trying times, we can choose to grow more real. In the easy times, we can choose to enjoy. In all times, we can choose happiness; the quieter, deeper, different kind of happiness.

Faith McCord is the author of the site Oscar Dandelion WordPress (click to view her blog).

A Journey with Bare Feet on Sharded Glass

Hawaii Beach

We might be tempted to think that life should be as easy as walking on soft, powdery sand. I don’t know how this idea started or, even, when it started. Certainly, it was not the mindset of people 100 years ago. Our grandparents knew that life was hard. Not only did they experience civil wars and world wars in their lifetime, they knew what it was like to miss meals and live without heat and clothes. The Great Depression was a hard taskmaster, but those who lived through the tribulation learned valuable lessons: work is hard, health is precious, happiness is a choice, and life holds no promises.

My grandfather managed to get his wife and young son out of Eastern Europe between World War I and World War II. When she arrived in the United States, my grandmother worked as a cleaning lady at night and prepared all homemade meals, cleaned her home, and used a wringer washing machine to wash clothes. They were hard-working people, and they were happy with their simple life.

But, not us. Even with bombings, terrorism, and school shootings, we persist in our fantasy that everything is possible if we just believe. Somewhere over the rainbow, we adopted a cultural delusion that “dreams really do come true.” In fact, we hear it, we see it, and we proclaim it as “the American Dream.” We all know the mantra: If we work hard, we will be successful (as in rich); if we fail, then we didn’t try hard enough. If we dream it, we deserve it. All of our aspirations are within our grasp.

What happens when dreams fail? How do we cope with disappointment? I would venture to guess that there are more people on the road of sharded glass than on the ladder of golden rungs. Our lives have left us in pain as our ambitions bleed onto the landscape. Nevertheless, hope does spring forth from the sanguine fluid.

Being disAbled has afforded me the opportunity to meet many people facing chronic illness, pain, and the accompanying fear and disappointment. We belong to an exclusive club as our lives are parsed out in days segmented by fatigue and frustration. Still, I am amazed at the presence of hope. Of course, we have our days of ranting against the system. We are ignored, marginalized, and patronized. Yet, we are a positive, realistic bunch. How did this happen?

Living with a chronic illness requires adaptation. As we adapt, we learn how to be creative and flexible. Just like the Great Depression taught our grandparents hard lessons, our suffering has schooled us on being patient, persistent, and prepared. We have faith.

The road might be paved with broken glass, but because we have faith, we have hope.

View From My Wheelchair: Who Is That? Do I Look Sick?

Rose Wolfe eyes

Has it ever happened to you? You are washing your hands and, without thinking, you look up and see some stranger in the mirror looking back at you? In that split second, you are shocked. “Who is that person,” you wonder?

I mean, I know it’s me. Yet, it’s not Me. It’s not the Me I was. It’s not the Me I thought I would be. It’s not even the Me I think I am.

So, who is that person looking back at me? What do people see when they look at her? Who do they think she is?

Just the other week, someone said to me, “You know, you don’t look sick.” Do they mean I don’t look like someone who needs a wheelchair and is, therefore, faking it somehow? Or, do they mean I look better than someone should look when they are mobility challenged? What does sick look like?

Does it even matter?

This is a strange concept to me. I don’t look sick. Hmmm. Does that mean that I need to wear sweat clothes and gym shoes? Does it mean I should not wear makeup? If you saw someone wearing sweat clothes, would you say, “Oh, look, that person is sick.”? How about if you saw someone without makeup on? What conclusions would you draw?

And, if I were to dress in a different way, what would I be saying about myself? What would I be saying to you? Some people have no choice. They have been burdened with a stroke or paralysis. This does not mean they are sick. They are disAbled, mobility challenged, and dependent on a caretaker.

My reflection has changed. My disease is changing my face. And, I don’t always immediately recognize that woman in the mirror. Still, she doesn’t look sick.

I keep coming back to the same question: What does it mean to look sick? I don’t have an answer.

What I do know is that I don’t look sick because I’m not – sick.

Do You Feel Hopeful?

Orange Heart Is it even possible to feel hopeful?

As I face the demons of unrealized dreams squarely, it occurs to me that they are just that – unrealized dreams. Nothing more. Should this loss be so traumatic that I should feel hopeless? Is it even possible to feel hopeful?

Adding to my personal loss, the stress of living in a world where tens of thousands rally around banners of hate, my heart aches for those who are facing loss caused by these monsters of society. Is it even possible to feel hopeful?

Yes, it is. I sit calmly with hope in my inner being. Not because I refuse to face the turmoil of loss, but because I have a faith that goes beyond today.

When I first lost mobility and the resulting loss of dreams, I was frustrated at how little I could do and how little I felt understood. It was overwhelming; not only was the world’s situation hopeless, but my medical team held out no hope to me, as well.

Over time, it occurred to me that I needed to examine my thoughts, challenge my mindset, and make decisions that provided me with a clear vision. My struggles would serve me and others. Each challenge would work a deeper truth within me and, as a result, carry the potential of life-giving gifts to those around me.

Hope keeps me going through my darkest times. As I encounter challenges, I have the option to face my tribulation with faith. In truth, the greatest moments are those when I have suffered with purpose. For suffering produces patience, and patience develops character. As character matures, hope emerges.

“To live without Hope is to cease to live” ~Fyodor Dostoevsky

Do You Feel Hopeless?

Kate Heart — The Crying Heart (by Kate at 5 years old)

Because we live in the foggy mist of our lives, we often lose perspective. Hurrying against time, we rush from one obligation to the next. With mobile devices always within arms reach, our minds are constantly bombarded with information. Multi-tasking along the way, we try to fit everything into our day.

Exhausted and overstimulated, we collapse into bed. Looking to get a good night’s sleep in too few hours.

At the same time, the world is going mad around us. Suicide bombings, shootings at schools, angry mobs, and the use of excessive force by those paid to protect us. The noise of fearful voices and crying eyes is all around us.

Peace seems unattainable, even by those who declare it as their battle cry.

Hopelessness hides in the corners of our minds. We fear that its tentacles will reach out, grab our heart, and pull us into the chasm. So, we continue to overstimulate in order to avoid our feelings.

Our dreams are fading. Nightmares haunt us.

Do you feel the hopelessness?

I do, but I’m not.

Hope does not disappoint (Rom. 5:5)

What Do You Believe?

I am going to net it out. No extraneous words. No gentle approach. My disease is not the result of my belief or unbelief. Period.

There is a subset of people who think that they have a special insight into my disease process. They are not part of the medically trained, and they do not have myotonic dystrophy. In fact, they don’t live with, nor are closely related to, anyone who has a chronic illness.

What they do have is an inordinate belief in themselves. They are ordinary people who think they have special wisdom Maybe they do, but I’m not buying it.

If they do have special wisdom, then why are they so obtuse? Instead of considering the harm they are causing, they speak their truth as if they were imparting an here-to-fore untapped resource. They single out the weak and sick. We, who are already fighting against our diseases, must also have to hear how it is our fault. Ultimately, we are the cause of our suffering.

I am on a rant today!

Imagine being told that your height is the result of your unbelief in the power of positive thinking or the result of your childhood. Yes, I did just say that.

A couple of years ago, I was blindsided by a woman who approached me with her special knowledge. If I would only open myself up to let the Supreme Being (her god) heal me, she admonished.

“Your childhood is holding you back,” she emphasized, “Your body is being traumatized by negative parenting.”

Somehow, she had decided that she knew the cause of my disability.

What she didn’t know was that I have myotonic dystrophy and that it is a genetic disease. Her lack of knowledge didn’t stop her, though. Her special insight had revealed exclusive divination to her. She was only the messenger, and I needed to heed her message. She was adamant and convinced. Oh, there was not a doubt in her mind. This wisdom was so rare that I needed her to tell me.

This was not an isolated event. Strangers and friends(?) all feel at liberty to reveal to me how I can be healed if only I believe in whatever they believe. Oh, of course, I also have to believe that they are in possession of revelations.

The latest experience occurred just a few days ago. Someone I have known for years sent me an email in which she told me that she, too, had received a special revelation. Interestingly, her message was vastly different from the woman I mentioned above (and the others that have approached me over the years). In the email, my friend told me that I needed “just to believe” that there was no such thing as disease. If I could just un-believe in the reality of illness, then I would not have myotonic dystrophy. Her reality is the reality.

My counsel to all that wish to share a truth: Make sure it is the truth and not a truth. Second, seek a second opinion about that truth.

To all the special messengers: If your words are dishonoring, disrespectful, and disheartening, keep your message to yourself. Period.

Whom Do You Hate?

Recently, I heard someone say that they think people are basically good. I am not so sure, anymore. I believe it is more likely that people are basically selfish (me, included). Just take a moment to think about your thoughts and behaviors. When driving, do you practice generosity or are you more concerned with getting to your destination? How about grocery shopping? Do you look for the shortest line and make a beeline to it before anyone else can get there?

Okay, okay. I know. I am bringing up minor instances of selfish behavior. However, it does reveal that our underlying, well-hidden nature is more base than we are willing to acknowledge. Still, somewhere along the line, we were taught to be kind (some more than others). Remember being forced to share? Over time, the socialization process became ingrained and, if nothing else, we learned to be socially prudent and, maybe, even kind. Probably the majority of people fall into this category.

Can selfishness and goodness co-exist? Are they mutually exclusive? Is kindness equivalent to goodness?

Recently, my caretaker and I were on the highway. Suddenly, right in front of us, we witnessed a van careen into a semi-truck. With horror, we watched the truck skid, flip on its side, and, within seconds, burst into flames. Without time to think, people stopped their cars and ran to the injured. Because of these kind strangers, the truck driver was pulled out of his cab just before it was entirely engulfed in a raging fire. Yes, these people ran toward danger to help a stranger and displayed courage and compassion in a moment of no-time-to-consider. Am I disproving my point?

In contrast to the few that ran toward the injured, most people either drove off immediately or stood on the sidelines gawking.

So, we have the lovers and the others. There is a third group. They plan and conspire to maim and kill others. Are they truly evil, I wonder? Are they the modern mini-versions of Hitler and Idi Amin? The recent bombings in Beirut, Brussels, Pakistan, and Paris are evidence of hearts gone wrong. They are the haters of the world. Do they hate themselves, also? Is that why they can self-destruct?

Do we see ourselves in them? Do we hate? How much time do we spend with the word “I” rattling around in our minds? I want, I need, I have, I deserve, I . . . ad nauseam. At one point in history, the world changed from spending our days worrying about our next meal to spending our days worrying about ourselves.

Hate does not spring out from our hearts spontaneously. We feed hate a regular diet of jealousy, pride, greed, envy, and self-importance. As we focus on all the slights and offenses we have experienced, we fail to consider if we have done the same actions. Our training becomes undone, and we are left with childish thoughts. It is a poisonous diet. Eventually, we have no room for empathy or sympathy. Our passion has no compassion.

If we can learn anything from the haters, I hope we learn to let go of petty grievances and forgive others. There are plenty of reasons to harbor ill feelings. You might even hope that your perceived enemy comes to harm. Albeit they might deserve karma justice, loving them will add an intangible healing to the world and to you, as well.

The next time you hear about another act of terrorism, ask yourself, “Whom do I hate?”

“Love has bliss in it, hatred has despair, bitterness, grief, affliction, wickedness, agitation, confusion, darkness, and all the other interior conditions which compose hell.”

– St. Symeon the New Theologian (949-1022AD)

The Way to Start a Perfect Day

It may have only been 5:30 a.m., but I am already at my computer getting ready for the day. Although I would have preferred to still be in my warm bed, my mind had other plans. That evening I was leading a discussion on “The Perfect Life,” and I wanted to review my notes.

Only moments into reading, I hear Teddy bark . . . and then, another bark. Holding my breath, I wait – hoping that he would settle back to sleep.

All is quiet. Then, another, “Woof. Woof.”

My quiet morning had dissolved. A barking dog might be a good alarm clock, but my husband would prefer to sleep for another couple of hours. Since I am already awake, I have no choice but to convince Teddy to be quiet.

Struggling to get out of my chair, I grab onto my walker and roll to Teddy’s bedroom (the large bathroom on the first floor). I tell my 15-year-old dog to be quiet.

“Hush,” I say as he wags his tail at me. “Be quiet.”

Just as I manage to get back to my chair and sit down, I hear his short bark, pause, and another bark. I know if I let him out of his bedroom, he will bark at the squirrels having their breakfast at the bird feeders in the back yard.

So, I whisper, “Teddy, quiet.”

“Woof, woof,” Teddy replies.

After a half-an-hour of repeated trips and corrections, I labor out of my chair one more time. Thinking that maybe he needs to relieve himself, I amble to the side door and let him out. Happily, Teddy takes off to roam our wooded back yard.

Giving him a few moments, I call Teddy to come back in the house. I get no response. Each minute I lean on my walker calling Teddy feels like an hour. I continue to get no response. Because it is 42 degrees outside, I cannot leave the door open. The morning has taken a toll on my body, and I can feel it starting to quit on me. I don’t know what to do.

I wonder, “Should I just leave him outside?” Just as I begin to think this is the best solution, Teddy comes around the bend and stands about 15 feet away from me.

“Teddy, come,” I command several times.

Finally, Teddy decides to comply and trots over to me. Getting halfway through the threshold, he changes his mind, turns around, and bolts out the door. He scampers 10 feet away, stands erect and calls out, “Woof, woof.”

I have now made matter worse. Not only am I concerned about Teddy waking my husband, but I also have my neighbors sleep to consider. In my frustration, I decide that I can walk down the stairs and get Teddy.

“It is only three stairs and 10 feet,” I tell myself.

Letting go of my walker, I shuffle out the door and grab the handrail. As I manage to get down one stair, my body has had enough and, luckily, just sits down. In the meantime, Teddy continues to bark.

It is 6:15 a.m., I am sitting on my stairs, in my pajamas, in the cold, and sobbing. Teddy barks. I cry some more. Teddy barks some more.

A loop of thoughts keep running through my mind, “What am I going to do? Dennis is asleep on the second floor on opposite side of the house. I am getting colder.”

I try pulling myself up. . .three times. I cry. . .three times.

“Okay, God, I get it. Here I am, trying to do it all on my own. I do believe that I have the perfect life. Not because my life is perfect or I am perfect, but because You are Perfect. I need Your help.”

I grab onto the newel cap and pull myself up. Suddenly, I am standing on solid ground. With shivering legs and cold hands, I cling to the posts. Each stair a struggle; I climb the three steps.

Leaving Teddy, I close the door. It is now 7:00 a.m. Shivering, I shuffle to the stair lift and ride to the second floor. I grab my walker from the landing and open the bedroom door.

“Teddy is outside barking. I crumbled on the stairs trying to get him. Please bring that dog in the house,” I tell Dennis.

He immediately jumps out of bed. Covering me up and tucking me in, he asks me if I am okay.

“Yes,” I reply. “Everything is okay. Thank God.”

As I fall asleep, I say, “Thank You, God, for Your Perfection and for my perfect life.”

“My help is enough for you; for my strength attains its perfection
in the midst of weakness.” (2 Cor. 12:9, NCV)

WHAT IS ON YOUR BUCKET LIST?

Hope — “FAITH, HOPE, LOVE REMAIN” by Rose Wolfe

“WHAT IS ON YOUR BUCKET LIST?”

Shifting his weight, he tried another position as he sought to find a comfortable spot. The morphine drip took the edge off for awhile but never long enough. Feeling helpless, I sat next to his bed and held his hand.

He was only 25 years old, and cancer devours the young as well as the old. For six short months, we had battled together to fight this invader. Now, the war was over, and we had lost.

We were young. Around us were people who told us that he should put together a bucket list. They didn’t understand. We had one, and it was short. Spend as much time together so that our four-year-old daughter’s heart would be imprinted with her dad’s love and joy. If she couldn’t have him physically, then we wanted her to have him spiritually.

Now, it seems as if most people have a bucket list. I guess it is a way to cheat death or enhance their life in some way. Maybe they want to have an excuse for risky behavior or spending money they don’t have. Regardless, the items are as varied as the people behind them. It is incredible the things that people have on their lists, from traveling the world to achieving their ideal weight.

What does it matter if you learn a new language and you expire tomorrow? When someone dies, how many of us say, “Well, at least he saw the Grand Canyon.”?

There is nothing intrinsically wrong with having a wish list. In fact, having goals and making plans to achieve them is admirable. Although, it seems to me as if there as two types of bucket lists: (1) the Rusty Bucket List, and (2) the Legacy Bucket List. The first list consists of temporary achievements that have no enduring value. The second list is what remains after someone passes away.

As I think back on the lives of those who have died, it doesn’t matter if they had the opportunity to scuba dive the Great Barrier Reef. Rather, I am struck by their legacy. Did they leave behind love? Were they the reason they were estranged from others? Is there guilt or anger?

I might live another ten or twenty years, but I doubt it. My disease continues to strip my muscles. My energy is wasting away. The bell is tolling faintly in the distance. There is no time to squander. Which bucket will I choose?

I have made up my mind. The decision has been made. I choose to love, encourage, and accept. No saint here. That’s obvious. Nevertheless, the time has come. The battle trumpets are sounding.

It may be another lost war, but I will continue to forge ahead. May faith, hope, and love remain.

“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal.” Matt. 6:19

View From My Wheelchair: The Art of Me

Finally, I finished my latest painting, “A New Day.”

As I mentioned in a recent post (VIEW FROM MY WHEELCHAIR: RENEWAL), my disease robs me of energy. Still, I make plans, and even if I am waylaid, I am content in every situation. However, my life is not only a mirror of what I say and do. It is also a reflection of the light in my soul.

So, I continue to wage a war against my disease – not in anger but in determination. I know that my moments are strung together. It is as if time were paint, and I hold the brush by which I make bold strokes on the canvas of my life.

Each response applies a color. Beauty and depth are created with blues, yellows, and reds. Carefully, I work to avoid muddy colors that can dull or darken my life. Reactions such as anger and hate destroy the picture and leave my dreams unrealized.

Today was a good day. Tomorrow will be, too.

VIEW FROM MY WHEELCHAIR: RENEWAL

“Will it be a great day?”

Hoping to start a new painting, I make preliminary plans for the day. Lately, my energy has been in the toilet. But not today! Finally, I feel 75% of the old me. Not wanting to lose my burst of vitality, my caretaker helps me to get dressed, and off we go to my painting space.

These moments are precious. They can slip away without notice and fall away. It is as if I live on the edge of thin, spring ice. My footing is tentative on the slick surface of promises.

Living with a deteriorating, chronic illness requires me to assess everything I do. All the time, I need to make sure that I am not operating under the wrong assumptions. One day I can open a container of yogurt, the next day, I can’t. Then, suddenly, a week later, I can again. As time creeps forward, the “I can days” are being outnumbered by the “I cannot days.”

It can be quite maddening – plans need to be conditional. Without notice, I have to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity of daily living needs to be examined. “Is it a good day for a shower? What else would I like to do today?”

Finding the way through the uncharted territory of my new life, I know that there are two rudimentary reactions to the fickleness of my days. I can view them with as robbers of my life, or I can dig deeper and discover new ways of being me. For me, the option is obvious.

So the process begins: my new life is defined. I am renewed.

Phil 412 version 2

View From a Wheelchair: To the Man Who Yelled at Me

Watch Where You Are Going

Michigan Avenue. Ugh!

Maneuvering down the crowded sidewalk and dodging people, I call out, “To your left.”

Tourists and Chicagoans alike ignore my warning. To them, I am just another obstacle in their quest. They continue to cut in front of me. Many don’t even notice me in my big, looming wheelchair. Because my chair is controlled by a joystick, it has no brakes and rolls to a stop. If someone were to cut in front of me too quickly or stop too suddenly, there is a high risk of me running into them. I know that most people do not think about the mechanics of wheelchair driving. Thus, I try to warn them to watch where they are going; that I am here. I exist.

I know the dangers. Seriously, someone could get hurt. So, as I cruise along in my 355-pound, roll-over-your-foot, knock-you-over, sidewalk-legal, personal-mobility tank, I call out, “To your left.”

Suddenly, a 60-something-year-old man starts to veer to his left, cutting close to my right side. Fearing that I will run into him any second, I call out louder, “Be careful. I’m right here to your left.”

By this time, we are in the middle of the street, and he turns sharply to look at me. “Watch out yourself,” he growls and continues his collision path.

Now, he is dangerously close to being hit. To ward off an accident, I swerve to my left, narrowingly avoiding a car that had crossed the white line before stopping for the red light. As I do so, I say, “I have no brakes. It would be terrible if I were to hit you.”

He quickens his pace and yells over his shoulder, “That’s your problem. You need to watch where you’re going!”

Just like the crowd on Michigan Avenue, we see others as obstacles to our quest. We look neither to the left, nor the right. Caught up in the day-to-day routines and demands, we put our heads down and forge ahead.

Of course, sir, you are right. I do need to watch where I am going. In fact, we all do.

View From a Wheelchair: The Perfect Life

As I look up, I can’t fail but to notice my wheelchair. Tucked into a corner, still it sits predominantly in the room. This is my reality. I do not deserve more – nor do I deserve less.

Over the years, friends have told me how unfair it seems to them that I have myotonic dystrophy. These kind words reveal at least two things about them: (1) they are sorry that I have to contend with a debilitating disease, and (2) because I had already had some tough times, I should not have to experience more troubles. I am grateful for their love. Still, it made me wonder. What does anyone deserve?

It has become increasingly difficult not to consider the big picture. Our Western minds are geared to be positive and assumptive. History has been charitable to us. We have won wars, ruled over others as if we were benevolent dictators, and enjoyed a lifestyle unequaled in many parts of the world. Even our poor are not poor when compared to third-world countries. Not until 9/11 did we stop to think that maybe other countries could hate us.

Our self-assuredness and entitlement run deep in our souls. We tell ourselves that we are God’s elect. When troubles and suffering are experienced, some believe that we are being punished by God. Karma is at play. There are underlying assumptions here: good things happen to good people; bad things happen to bad people. We want justice. We want ours!

This concept of the perfect life can leave us feeling unfulfilled. We compare to our demise. Our definition of what constitutes the good life can cause us to feel cheated. Do you think that if you work hard, are kind, and follow the rules, then you are guaranteed a wonderful life?

Why should we expect a certain outcome? Do we deserve anything? There are no guarantees. Nothing is fair. Nothing is perfect. There is no perfect spouse, child, job, home, country, or life.

You don’t need a perfect life to be happy.

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NUTTY GRANOLA RECIPE

SIGGI’S YOGURT TOPPED WITH NUTTY GRANOLA

Time for a little diversion. We need to feed our bodies as well as our minds and souls. So, I am sharing my favorite homemade granola. It is good in a bowl with some almond milk, as a topping on yogurt, or just for snacking.

INGREDIENTS:

1 cup organic, rolled oats (certified gluten-free)
1/4 cup sliced, raw almonds
1/3 cup coconut sugar
1/4 tsp Himalayan salt
1/4 tsp. Ceylon (or Mexican) cinnamon
1 egg white
3 Tbsp. water
3 Tbsp. raw, organic honey
1 tsp. grapeseed oil
2 cups raw walnuts
1 cup raw pecans
1-2 handfuls of raisins

DIRECTIONS:

Preheat oven to 300 degrees.
In a food processor, combine the oats, almonds, coconut sugar, salt, and cinnamon. Pulse until you have a rough chop. Do not pulse until you get a flour. Pour into an additional bowl and set aside.
In the empty food processor, add the walnuts and pecans. Pulse to break nuts into pieces.
In a large mixing bowl, beat the egg white until foamy (but not stiff). Add the water, honey, and oil; whisk to combine.
Add the walnuts and pecans pieces to the bowl of liquid and completely cover the nuts. Use your hands.
Add the oat mixture to the bowl with the nuts. Using your hands, cover the nuts with the oat mixture. You will have more mixture than nuts.
Spread the mixture onto a parchment-lined baking sheet.
Bake for 15-20 minutes. Watch carefully to prevent burning. After 7 minutes, gently stir the mixture.
After removing from oven, add the raisins.

View From a Wheelchair: Finding Truth

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Even before I opened my eyes, I knew something was wrong. Peeking out from under the covers, I saw books, lamps, chairs, everything floating around the room as if in a slow-motion tornado. The strangest of all was that when I stood up, rather than floating, I remained standing. My feet steadfast to the ground. Grabbing hold of my walker, I moved through the room as I tried to make sense of what was going on. Then it hit me; the world had finally fallen apart completely. Up to that point, we had been holding on to some semblance of reality and truth. Now, all the competing truths had finally pulled us apart. We knew it would happen eventually.

For years, truth and reality have been losing their objectivity. Many people no longer believe in an absolute truth. Everything is relative or situational. Crowds are clamoring for social justice, but we cannot even agree on what defines it. Recently, the Michigan State Board of Education outlined, in a memo, voluntary guidelines to make schools safer (and supportive) for lesbian, gay, bisexual and transgender students. Still under development, some of the proposals would call for students: (1) to be addressed by names of their choosing, (2) to use the restroom of their liking, and (3) to have access to the locker room in accordance with their gender identity. Of course, these recommendations ignited a new uproar. The rights of one group are in conflict with the rights of other groups. Somehow, we have lost our way.

Rather than focusing on the merits of the above recommendations, I want to go back to the loss of truth and reality in our lives. How many of us are swirling around the room with the furniture? Are we willing to stand firm and gently pull others to the ground with us? Or, are we looking to yank others into submitting to our way of thinking? Do not misunderstand me; I am not advocating debating with others. Arguments just give birth to more arguments. Is it possible to convince a radical to take a more liberal approach? Do mobs act rationally? Can truths be beaten into another?

My wheelchair confines me, but it also has liberated me. Taking time out from all the activities that can fill our day requires consciousness of ourselves and our surroundings. All the competing noise of the world fills our heads. We do not stop to think about what we hear and what we say. Often, at the end of our day, we collapse into bed, grateful that it is over for the time being. We fool ourselves. The world has been pulled apart at the seams. Foolishness swirls around us 24/7.

Dr. Martin Luther King tried to instill wisdom into a world full of noise and hate. We did not listen then. Will we listen now? He said, “In international conflicts, the truth is hard to come by because most nations are deceived about themselves. Rationalizations and the incessant search for scapegoats are the psychological cataracts that blind us to our sins. But the day has passed for superficial patriotism. He who lives with untruth lives in spiritual slavery. Freedom is still the bonus we receive for knowing the truth. ‘Ye shall know the truth,’ says Jesus, ‘and the truth shall set you free.'”

Even though Martin Luther King was talking about the Vietnam War, we can apply the same philosophy to what is happening in our world, our country, and our lives. Reality is now malleable. Our experiences and mindsets will influence how and what we perceive and understand. The difficulty will be defining truth. Some will even contest the existence of truth. Nevertheless, I would like to examine Dr. King’s statements a little further:

(T)he truth is hard to come by because most…are deceived about themselves. Even though Dr. King was addressing nations, we can decide (our reality) whether or not this comment has validity. Be careful now, I am asking you to choose. Is it true? Are people deceived about themselves? If so, does that make it hard to know the truth? Is there a truth?
Rationalization and the…search for scapegoats are psychological cataracts that blind us to our sins. Situational ethics and the willingness to blame others for our troubles are tools that have used since the beginning. Our unwillingness to acknowledge our weaknesses makes us vulnerable to pride and arrogance. I know the term “sin” is now very unpopular and out of date. However, it would benefit us and help the world to stop its nauseating gyration if we were willing to acknowledge and admit when we have behaved with immorality. Are we ready to consider that acting out with love is better than acting out with selfishness, rationalization, and hate? Are our cataracts so thick and our blindness so severe that we have become comfortable in the darkness?
He who lives with untruth lives in spiritual slavery. Although you may now turn away, it is time to delve into spiritual matters. We can no longer afford to live in a fantasy world where there is no absolute truth. The consequences are too great. Our world has lost its bearing, and we are spinning out of control. While I agree that social justices are being violated (sometimes, in the name of God), we need to look squarely in the mirror and account for our own misdeeds. It is we who are spiritually dead, not God. We are so unglued that our lives have no meaning outside of what we think. We put more weight on our current sets of beliefs than we do on authority other than that which aligns itself with us. In fact, we use authority as a club to beat others.

So, what is untruth, then? Will you admit that pretending is just that, pretending? We pretend that we care or that we don’t care. We pretend that we have more money than we do. We pretend that we are not afraid. We pretend and we lie. We want to live a life without rules for us. We might even live a life of poverty and abstinence because of some social conviction we found along the way. Our sacrifices are limited and shallow. All this, the lies, the sacrifices, the abstinence, will fail to satisfy us. Maybe you are the opposite. You live for today; tomorrow be damned. You have rejected all concepts of reality and truth, other than what you have determined them to be. Still, deep down you still crave meaning. You know that untruth exists. If you are bound to deny, suppress, and repress a reality that is greater than you, then you are a victim of your own doing. Your spirit is chained. Break your bondage and acknowledge that if untruth exists, then truth exists.

Freedom is still the bonus we receive for knowing the truth. “Ye shall know the truth,” says Jesus, “and the truth shall set you free.” Freedom is more than being free from something. It is also a state of being free to be something. I may be bound to a wheelchair, but I am grounded. I am free because I know that both untruth and truth exists. I live beyond any momentary affliction. This decision not to be trapped in a mindset of my own doing does not mean I do not feel the anguish or heartache that is part of life. Instead of being tossed about by every emotional whirlwind, I choose to live outside of my emotional distress for I have an anchor to which I have attached myself. My reality is not limited to my mindset.

Dr. King is respected in many communities; yet, how many people fail to see the connection between Dr. King and his Truth? He aligned himself with Jesus. There is something greater than striving for our gain or, even, for social justice. We have lost our moral compass. If we continue to travel on the winding road of deception, rationalization, and scapegoating, then we will continue to lose our footing in the hurricane of spiritual slavery. There is freedom because there is Truth.

“I am the Way, the Truth, and the Life.”
(John 14:6)

Essential Attributes of a Caretaker

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Caretaker or Care Taker?

One common, compound word: caretaker. By definition, it means someone who maintains something (a building, an estate, a person). Albeit maintaining is crucial to the welfare of the building, estate or person, maintaining does not automatically include improving, enhancing, or giving care. Over the years, I have learned that someone can be a caretaker without being someone who takes care, a caretaker.

The relationship dynamics between caretaker and the disabled person have been examined in books and movies over the years. Usually, in order to sharpen and create tension, the writer will develop stereotypical characters. Two examples are: (1) an over-the-top thriller movie, “What Ever Happened to Baby Jane,” which highlights the wheelchair-bound individual’s dependency on another. In the case of this movie, an unstable caretaker; and (2) a more realistic example is “You’re Not You,” which illustrates how a caretaker can augment the life of another. Even though both movies are stereotypical, I recommend both for they clearly demonstrate the powerful role that a caretaker plays in the life of a disabled person.

When I first had the opportunity to bring a professional caretaker into my home, it was an unsettling process. In addition to having a stranger in my home with access to everything, they were independent people who made decisions for me without consulting me. Where I live, many of the agencies that provide home health care carefully screen potential caretakers for criminal backgrounds, but they do not screen them for the attributes that make a good caretaker. The soft side of the individual is ignored (caretaker and client). Consequently, I have had to contend with all sorts of people, from the angry to the apathetic. My current agency not only carefully screens the background of their applicants, but they spend time training them to care. Through my personal experiences, I have learned that it takes a special person to be a

Through my personal experiences, I have learned that it takes a special person to be a caretaker. Below, I discuss what I would consider are seven essential attributes.

Sacrificial

Above everything, an excellent caretaker is someone who puts the needs of the disabled person first. When I was 30 years old, my husband was diagnosed with cancer. As his health declined, my role as wife and mother diminished as my role as caretaker intensified. At first, he only needed me to drive him to his appointments. In the later stages, he was bedridden. Nothing mattered more than his comfort and needs. My world was his world. As the physical demands became greater, so did his need for emotional support. Although I wanted to take time for me, I knew that my sacrifice paled in comparison to his suffering.

My role as caretaker was shortlived. Some caretakers have no end in sight. Their role seems endless and their needs have to be met. If the caretaker is a professional, they can get their rest and relaxation at the end of their shift. However, if the caretaker is a family member that lives with the disabled individual, then they have to learn how to take time for themselves. A bedraggled caretaker cannot provide the needed care. Boundaries need to be articulated and established. Making time for rest and relaxation is crucial for a healthy relationship.

That being said, sacrifice is necessary. The caretaker has a role: to take care of someone. Remember, the one who is receiving the care would love to be able to do things for themselves. There is nothing more discouraging than to feel as if you are a burden. The emotional status of the chronically ill is delicate and to feel as if you are a burden is equivalent to feeling unloved and unwanted.

Compassion

We all thrive in a positive environment. Treating the disabled with kindness, respect, and empathy goes a long way in making their life more tolerable. The disabled have frustration (and some have anger) at the way their lives have evolved. Consequently, more than ever, a tender hand and a kind heart are imperative.

Recently, while at the hair salon, I watched a caretaker assist a frail, elderly lady transfer from her wheelchair to a hair washing sink. The caretaker failed to stand close enough to the lady, did not use appropriate techniques to assist the lady in standing, and almost dropped her in the process. Observing the caretaker’s face, I could see the look of someone who was not engaged. She rolled her eyes and frowned the whole time. The lack of compassion was evident.

Reliable

In every career, reliability is a basic standard of performance. When one person is dependent on another, reliability is paramount. Last year, I had a caretaker who would fail to show up for work. She just took random days off. This left me with no food and no one in my house with me. The agency would then have to scramble to find someone to fill in. Many times, it would be 1 p.m. before someone came to give me breakfast. My caretaker could not (or would not) understand that a late night partying was not substantially good behavior (or reason to call off) for a caregiver. Even though I liked her, she knew that failing to show up for work would leave me without food and care. This woman did not have an essential attribute for her position.

Adaptable

Often times, we have our own ways of doing things. I happen to like clean kitchen counters, my clothes organized in my closet, and my food prepared a certain way. Even though it might appear to be arbitrary decisions, I have reasons. Clean kitchen counters translate into less likelihood of food contamination; an organized closet makes it easier for me to pick out clothes; and, I am committed to eating healthier food.

Doing the above tasks the way I prefer them to be completed makes my life easier. Both my husband and my professional caretaker have adjusted their styles to assist me. They are conscious of how their flexibility helps make my life more enjoyable. In fact, when they help me get dressed, I can tell them exactly where to look for a particular item of clothing (for example). This attribute of adaptability is pivotal as they adjust their behavior and become an extension of me. Through them, I can accomplish some fundamental tasks.

Agreeable

You might think that agreeable could be included in the above category, “Adaptable.” However, there is a distinction would mentioning. While someone might adapt their behavior to another’s way of doing things, performing it with a smile makes the whole process less stressful. I am sure that you have experienced times when someone has been patient with you. It is a gift. The relationship is deepened and strengthened just by having an agreeable companion. The journey’s burden is lightened.

Confidential

Knowing that you are in control of your information and your life helps to maintain a sense of well-being. From the unimportant minutiae (how I like my clothes folded) to the important details (what medicines I am taking), they all a part of me. They are my being, my personhood. When someone violates confidentiality, they are violating boundaries. Two years ago, I heard the news about a disabled woman’s murder. It turned out that the woman had a caretaker. The caretaker had a boyfriend. The boyfriend was told about the medical condition, habits, and items in the home. The result: the boyfriend broke into the disabled woman’s home, killed her, and robbed the home of money and items.

Teachable

Being open to learning a new or different way of performing tasks is a valuable asset for life in general. When it comes to being an extension of another person, being teachable is essential for the caretaker. Learning how to assist the disabled person gives the disabled a sense of accomplishment.

One recent caretaker made fabulous meals for me. When she first started, she had some knowledge about healthier food choices. Over the year, she learned about scallions, shallots, white onions vs. Vidalia onions, portobello and chanterelle mushrooms, spices, seasonings, salmon, tuna, grapeseed oil, parmesan and asiago cheese, serrano peppers, quinoa, brown rice, and how to make homemade chai nuts, granola, guacamole, pico de gallo, and mango salsa. Actually, the list could be longer. My point is that learning how to be the arms of another, while letting the disabled still have whatever control remains, is life affirming to the individual receiving care.

Faith

When facing difficult situations, any individual with a strong belief usually finds a way to persevere. For a caretaker, their faith gives them the added benefit of a sense of purpose. I have known caretakers whose only motivation was to get a paycheck at the end of the week. While this is an undeniable motivator for most people, it can leave the caretaker feeling uninspired. Over the past four years, I have worked with caretakers who did not believe in anything. The odd discovery of working with them was that most were often angry and erratic. However, the caretakers with faith believed that they were serving an important role. And, I can tell you, they do serve an important role!

One Final Word

Caretakers who are caretakers are caregivers. They promote and support the intangible needs of the disabled. Speaking for the disabled, “Thank you.”

View from a Wheelchair: Expectations

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Imagine you are in a Disney film. As you raise your head, you discover your arms are shackled to a prison wall. The ray of thin, blue light filtering in from the barred window reveals a bleak room. In anger, you scream at the shadows about injustice. This is not how you expected your life would be. Somehow, something went awry. Maybe, you are living with a chronic illness, or you are taking care of someone who is disabled, or you lost a loved one too soon.

“Life is unfair,” you whimper. “God, why me?”

Rather than continuing your rant, you change your stance. As you slowly let go of your anger and frustration, tiny rays of beautiful light start to emanate from you. The more you surrender, the stronger the light and the bigger the rays. Eventually, the rays are so abundant that they form a bubble of intense beauty. To your surprise, you are no longer shackled and the bubble envelopes you.

When you open the door to your prison, you discover a dark world that is being transformed into a beautiful and colorful world with the passing of your bubble. Continuing along, you encounter people. Some of them need help; others have hurt you and need forgiveness. As you attend to them, your bubble grows larger. Now, they and their surroundings are part of your bubble. All around you, the world is a better place because of your bubble of acceptance, forgiveness, and love.

I know the above scenario is a little too much, but the hope that we can help ourselves and others is my dream. Of course, I fail to keep my emotions in check at all times; however, I do want to make every effort to add to my faith. Letting go of all the disappointments and hurt feelings is a priority. It is a constant battle for it seems as if we prefer to harbor perceived offenses. Somehow, we have to change our mindset and realize that feelings are just feelings. And, you have some say in what you do with those feelings.

You might have heard me say this before, but I say it again, you are in control of your reality; you can decide what feelings you will attach to any circumstance. It will not be easy, but it is possible. Start small. Think of a situation in which you were less than happy. Now, examine the feeling and identify the feeling, the emotion, and the cause. You might find that the reason relates to a past disappointment. Maybe the cause is an emotionally charged, historical trauma. As you discover the root of the emotion, you will have the opportunity to spend time resolving the feelings.

Another technique that my husband uses all the time is to ask yourself what matters to you. Do you love the person who has hurt you? If so, then choosing to love them at that moment will diffuse the situation for you. If it is someone who always seems to irritate you, ask yourself what is the real cause of the irritation. Again, the source might be a historical catalyst.

Many times, the problem stems from unrealized expectations. What you thought would happen did not occur. I believe that this is a significant reason for conflict between people. Hopes are dashed, and feelings get hurt. As our emotions kick in, chemicals are released into our bloodstream, and we react rather than respond.

It might seem silly to you, all this talk about finding ways to forgive and the bubble of hope, healing, and delight that will be the result. All I know is that as I spend time looking at myself and finding the cause of my feelings, I can forgive. I have a long way to go. Some people were evil enemies in my life, but I am determined to find a way to love and forgive them. I do not want to be a hater. I choose not to spew more disgusting wickedness into the world with negative attitudes.

The world is turning and twisting in a whirlwind of violence, hate, and selfishness. Minds and hearts are lost in darkness. Those of us who can see the shadows have the discretion to make a difference. Every one of us lives in a bubble of our making. We can live in a bubble of hope or despair. My choice: finding a way to add to my faith goodness, neighborly love, and agape love (sacrificial love) is a worthwhile activity.

My expectation? To possess faith, have hope, and enjoy life with others in a colorful bubble.

View from a Wheelchair: Easter

Easter

Although you would not know it from all the fanfare given to Christmas, Easter is the most meaningful holiday for the Christian. It is the day that Old Testament prophecy was fulfilled and a New Covenant was established. For believers, it signifies atonement and rebirth.

Sitting here, in this wheelchair, as I think about the coming high holiday and the promise of rebirth, I am struck by the weight of the entire story: God and man; birth and rebirth. Even if you do not believe, does the idea of having the opportunity to begin anew entice you?

When I was young, all I wanted was to get along with people and to have a good time. With the birth of my daughter, I matured instantly. As I looked at her innocent face and delicate body, I was infused with a strong desire to do everything I could to protect her and give her a good life. I failed miserably, but I loved her. I still do, love her.

Knowing how much I love my daughter gives me an inkling of how much God loves me. To live with love is a gift. To give love is an honor. Even though I have many shortcomings, I am continually being renewed. My temperance is strengthened and I find hope in every day.

Now, rather than just wanting to have a good time and to get along with people, I have a purpose. The wheelchair does not limit me. Rather, it gives me freedom to consider others, to notice them, and to reach out to them. I am different. I am a new creature.

Many people think of Christians as judgmental or even hateful. I am distressed by this common portrayal of Christians for it includes me. Here is an insight into what God requires of me: “To do what is right to other people, to love being kind to others, and to live humbly, obeying my God.” (Micah 6:8)

So, Easter is a time of celebration. I am mindful of God’s New Covenant and of His love for all people. Also, it is a time to gather together and celebrate love and relationships. We were created to have partnerships. Even though I am mobility challenged, I will spend the day with my daughter and extended family. Everything has been planned and arranged to accommodate me and my wheelchair. We will start the day with attendance at a church service and end the day with extended family time.

There is no greater gift than love.

How Many Days?

A Season for Everything WEB_edited-1

Living with a chronic illness has changed me. Most of my life, I roamed my environment without giving my body much thought. If I wanted to take a walk, I made arrangements to allow me the time to do so. If I needed to go grocery shopping, then I did it. If I wanted to take a shower, I got up and took one. You get the picture. I enjoyed “movement without thought.” It is natural – for the able-bodied.

There are many like me: those who have been changed by a chronic condition. It is a new time for us. It is a time to mourn our loss and to weep over what might have been. We experience a harsh reality.

Myotonic dystrophy is a demanding master that looms over me with a whip and a chain. Only with permission am I able to move from one spot to another. It requires me to reassess everything I do. My assumptions are called out and shown to be false. Yesterday, I could remove an outer coat. Today, I assume I will be able to do the same action. Only, now, I find that I cannot slide my arm out of my sleeve.

For those of you who have not had a similar experience, it is difficult to fathom the process. How could you? Even I cannot anticipate the changes occurring in my muscles. One day I can open a shampoo bottle; the next day, I cannot. Then, suddenly, a week later, I can open it again. There is no rhythm, no pattern. It feels arbitrary. I am kept off balance.

Over the past seven years, I have lost the ability to take care of myself. The number of things that I can no longer do has grown. My heart still yearns to move without thought. It would be pleasant to wash and fold a load of laundry. Even more, I would love to be able to walk in the woods with my grandchildren. These lost moments sit quietly in the recess of my mind. They haunt me in my sleep.

It can be quite maddening – plans need to be conditional. Without notice, I find the need to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity needs to be taken into account. “Is it a good day for a shower? What else would I like to accomplish today?” I must find a way through the uncharted territory of my new life.

Underlying all this talk about movement hides the unspoken question: “How many days do I have before my “I can days” stop altogether?” Muscular dystrophy does not care about my dreams or wishes. Just like it robs me of movement, it is robbing me of time. Just like there was a time to be born, there will be a time to die.

This question of how many days is not just for the terminally or chronically ill. It is something that everyone should be asking themselves.

If you know someone who is struggling to live each day as it comes, take the time to reach out to them. They need to know that their value is not in what they can do for you or for themselves. Do not wait until they are prone and all their days of “can do” are gone.

If you are losing your “can do days,” mourn your loss, but find your joy, too. There will be plenty of time for weeping. Now is the time to heal and build relationships; remember to laugh at yourself and with others.

“There is a time for everything,
and a season for every activity under the heavens;
a time to be born and a time to die,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance” (Ecc. 3:1-4)

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Some People Are Hope Killers

Feelings of Alienation

Having No Goals

Feeling Restricted

Feeling Trapped

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“Accessible Air Travel Resource Center

“Accessible Air Travel: An Important Element of Living Life Without Limits

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Disability. Dis-ability. disAbility. Dis.a.bil.i.ty.

Charcoal sketch by Rose Wolfe

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“My help is enough for you; for my strength attains its perfection in the midst of weakness.” (2 Cor. 12:9, NCV)

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Caretaker or Care Taker?

Sacrificial

Compassion

Reliable

Adaptable

Agreeable

Confidential

Teachable

Faith

One Final Word

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“My help is enough for you; for my strength attains its perfection
in the midst of weakness.” (2 Cor. 12:9, NCV)