View From My Wheelchair: The Art of Me

 

A New Day
“This is the day that the Lord has made; let us rejoice and be glad in it.” (Ps. 188:24)

 

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: 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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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)

 

 

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.

Disabled? Now What?

 

 

 

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Farmer’s Market by Rose Wolfe

 

Every experience, skill, or career has foundational basics.  When you were in school, before you could solve an algebraic formula you needed to learn basic math skills.  Foundational skills, truths, or assumptions have an impact on everything we do.  We live out our lives using these elements as the groundwork without giving them much thought.

For example, imagine you just walked in the door of your home, and it is time to make dinner.  You don’t know exactly what you will be serving, but you toss some onions and vegetables into a pan and let them work their magic.  These basic ingredients for a savory meal can morph any ingredients you choose.  As the onion and peppers release their delicious aroma into the air; everyone who catches a whiff is enticed with the promise.  Sometimes, the ingredients are determined by what is available in the pantry.  If you are an experienced cook, then as long as you have some foundational elements, you will cook with confidence.  You have faith in your basic ingredients and in your skills developed through experience.

Living with a chronic disease is similar to being a cook with a limited pantry.  What we do each day is determined by what energy or help is available to us.  Yesterday has no bearing on today.  We do not know what we will have at the end of each day.  We create our experience as we go along.  Nevertheless, we always start with the basics of our beliefs based on our experiences.

So, what do we believe, and what interpretation do we make based on our experiences?  It seems that it would be to our benefit if we could find a way to articulate our basic beliefs about what we need, want, and expect.  I know that it would help me.  For example, last night just as I was going to sleep, I mentioned to my husband that I wanted to take a shower before heading off to church in the morning.  I had already mentioned it to him the day before, but I wanted to remind him so that he would set the alarm clock to allow us enough time.  Because I need his help to get showered, dressed, and hair dried, the time required is significantly different then days when I skip the shower before church.  He responded with a less than enthusiastic reply.  At the time, I let it go.  Now, hours later, I am playing the events over in my head.

This is the moment where I begin to cook my experience.  What are my basics, my onion and peppers?  What do I believe, and what interpretation do I stir into the mix?  Do I tell myself that my husband is unhappy or frustrated or some other emotion?  How do I respond to my belief?  What type of meal am I making?  Will it be savory or bitter?  Now is the moment of decision.  All realities are available.  All avenues of emotions are ready to react.

By conscious decision, I need to reign in and take a survey of what ingredients will I be using from the pantry of my experiences.  Why would I choose an interpretation that is less than favorable about a man who thinks about my comfort and needs all the time?  Just maybe I heard something that wasn’t there.  What I expected and wanted was an acknowledgment of a previously agreed to activity.  What I need is more tenuous.  This is the thin, tender layer that covers my heart.  I need to feel as if I am not a burden.  So, any little imagined or real indication that I might, just might, be a bother puts me on edge.  Nevertheless, I need to respond and not react.  I don’t even know if I am correct.  Even more important, even if I am correct and he was less than enthusiast about helping me shower in the morning, so what?

There are times when I am unable to think rationally and clearly.  This is not one of those times.  The more that I practice asking myself the critical questions (What are my basic beliefs?  What do I need, want, and expect?  What is my interpretation?), the better I will get at responding and not reacting.

Our lives are complicated and arduous.  We face demanding situations every day.  Let us choose to add love, hope, and peace to the mix.  Onions might be a basic to making a savory meal, but love is a basic ingredient to living a life that has a pleasing aroma; everyone who catches a whiff knows that a promise is being made.

What about you?  What are your basics?

How Many Days?

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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)

 

Who Is Disabled?

You can’t miss me.  My physical disability is obvious.  You may not know the reason, but it is impossible to miss the big, black mass in which I am seated.  Not alone in this world of having to navigate barriers of all kinds, I have a few friends who also roll around in chairs, and I know a few more who use rollers or canes.  When in public, we are challenged by stairs, gates, and doors.  If you are not physically challenged, you would be amazed at how many times we cannot go forward without asking for help.  Many times, we need the assistance of an able-bodied person to help us manage our environment.

Not all physical disabilities are readily apparent. In addition to those using wheelchairs, rollers, and canes, there is another group.  All around us are people who struggle every day with depression, anorexia, or autism.  They, too, need help to manage their daily lives.  It may not be a door that bars their way, but they encounter barriers to freedom.

Sadly, I have discovered a third group whose disabilities are more severe than either of the two mentioned above. Their illness is hidden and apparent.  They are concerned only with themselves.  With all the physical and emotional strive that is a constant companion for the other two groups, this third group is the most challenging to encounter.

Recently, some friends invited my husband and me out to dinner.  Even though it was a Tuesday night, everyone was out enjoying the warm weather.  Greeting us warmly, the hostess led us to our table, in the middle of the room.  Uggh.  In order for me to get to our table, we had to ask other patrons to get up, move their chair, and let me through.  Person after person rose, some congenially and some unpleasantly.  This is not uncommon.  By the time I arrived at the table, multiple apologies had been extended on my behalf.  Because I was sensitive to their reactions, I felt obligated to apologize that I was in a wheelchair and that they were inconvenienced.

Today, many people are aggravated.  Period.  I think that they live aggravated lives.  I am sure you have come across these barely-sociable characters.  They are the ones that push their way through, demand to be taken care of first, and are unsympathetic to the needs of others. Because there is no way I can avoid making my requests, I encounter a plethora of angry people.  I watch them.  Sometimes, they verbally complain about having to accommodate me.  Most of the time, they use their bodies to communicate clearly their annoyance. Since my physical disability trumps their needs, they are forced to comply with my request.

In recent years, teenagers have been given the opportunity to care for a mechanical baby.  It is a tool to educate our young people about responsibility.  I would love it if there were a program where adults were required to manage life in a wheelchair for a day.  How would they handle all the barriers that the mobility-challenged face every day?  Maybe then they would discover how difficult it is to ask someone to move, or open a door, or fetch something out of reach.

We have all probably felt unsympathetic to another’s plight.  Nevertheless, it does not
excuse the behavior.  If we do not make every effort to change our thoughts, to take them captive, we will continue a downward slope to inhumanity.  Living with a disability or engaging with someone who has a physical disability gives us the chance to learn empathy, sympathy, and patience.  As we encounter the socially-disabled individual, our response may not change them, but it can change us.
Are you disabled?  I may be physically disabled, but I am determined to live in a continued state of deepening faith and love.  First, by living a life that bears the fruit of the Spirit (love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control); and, second, by learning to love everyone with whom I engage.

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control.” (Gal. 5:22) 

“Love your enemies and pray for those who persecute you.” (Matt. 5:44)

Love your neighbor as yourself.” (Lev. 19:18)