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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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?

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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)

 

So Goes My Nutrition, So Goes My Health

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Recently, someone mentioned to me that I talk about food too much.  In fact, they think I am obsessive about it.  It is a funny feeling to be criticized for caring about nutrition and the effect it can have on your body.  I am still trying to figure out if it is true.  Am I obsessive about food?

When I was diagnosed with myotonic dystrophy (DM), I started to conduct research on my disease and what I could expect.  Since the cause of  DM is a mutation in my DNA, it has a wide-spread impact on my body.  In addition to weakening and wasting my hands, legs, and core muscles, the disease has and will continue to damage my heart and my lung muscles.  I have a high likelihood of becoming insulin resistant.  One of the scariest problems is that I have difficulty swallowing my food, and choke easily (even on water).

When I discovered that my muscles were being destroyed, I knew that I needed protein, that sugar was best to be avoided, and that I could help myself by being proactive.  I decided to make a difference in my experience.  The more I read, the more I learned that many diseases can be affected by consuming the right types of food.

My journey has taken me to a different level of awareness.  Some of what I learned, we all know.  The difference is that I decided to stop eating fatty or fried meals, refined sugar, and processed foods.  Simply put, I eat mostly organic, unprocessed foods.  Lately, I removed gluten from my diet.  The more that I take care of myself, the better I feel.

Just doing a cursory glance at food and disease, we can see a connection.  Diabetics need to watch their fat, sodium, carbs, and calories.  People with hypertension should avoid sodium, sugar, processed foods, coffee, and alcohol.  If you have a heart condition, you are advised to avoid sodium, processed meats, and refined sugar.  See the pattern?  Of course, many other physical ailments could benefit from a more balanced nutritional intake of foods.

So, knowing what I know, how could I continue to take in foods that are harmful or potentially harmful to my body?  Making the decision to take care of myself was a given.  If I can slow the disease process and improve my overall health, then I will do whatever I can.  The process to change lifelong habits takes time and commitment.  Finding recipes and new ways to prepare food has helped me to keep interested in making the changes.  Planning weekly meals helps to budget grocery bills, reduces waste (waist), and adds variety to my diet.

This past summer, my husband had a heart attack.  His recovery has been remarkable, and the cardiac rehab people were amazed at how quickly he was able to regain strength and lose weight.  A significant contribution to his recovery was his decision to move his dietary habits to align more closely with mine.  You all know the drill: reduce high-calorie foods, avoid refined sugar, limit sodium, and try to replace processed foods with unprocessed foods.  I am not a strict-adherent prophet calling out the warning to change your food choices because it does not work if you end up feeling as if you are on a diet.  It is a lifestyle change.  Listen to your body.

I modified my approach to food because it will (and has) a direct effect on my body.  Just like I changed by exercise pattern immediately upon diagnosis.  The doctors and healthcare professionals are human beings with their own agendas.  Some will take an interest in nutrition and some will not.  I had a nutritionist who provided me with a sample meal plan that included Saltine crackers for a snack every day.  It was at that moment that I knew I needed to take care of myself.

If I do talk about food too much, then so be it.  I plan on being around as long as possible, and what you eat can shorten your lifespan or lengthen it.  It’s your choice.

4 Ways Handicapped People Are Risk-Takers

Living in a wheelchair is risky business.  The able-bodied world holds danger at every corner and on every street.

Street-Danger-1Risk #1:  The Street Risk.  Mobility-challenged people are quite willing to acknowledge that the ADA has encouraged the implementation of friendlier access to public spaces and transportation.  However, in many cases, the practical application has failed to provide the intention of the law.  For example, curbs.  The curb in front of my building was modified to accommodate the requirement of the ADA but failed in its accommodation for the user.  Instead of having two ramps for each crosswalk, the developer saved money by making the ramp at the apex of the corner.  Because of this design, I am forced to leave the crosswalk and place my wheelchair (and me) in the path of oncoming cars.  You may ask me why I do not choose another way.  The answer:  the other way has an alleyway that does not have a curb cut at all.  So, I am forced to roll into the street.

Another time, I was happily rolling along on my way to the store when I found my way blocked.  Instead of a sidewalk, there was an orange cone in the middle of a gaping hole.  Turning around, I backtracked to the nearest corner.  TStreet-Danger-3o my dismay, the busy street had no pedestrian crosswalk to get to the other side.  Again, I was forced into the street.

The street risks are endless.  In addition to curbs and missing sidewalks, there is the all too common problem of cars sitting in the crosswalks or blocking sidewalks.

 

Pedestrian-DangerRisk #2:  I Might Run Into You, After All, Risk.  Most pedestrians are oblivious to the world around them and, especially, to the mobility-challenged.  Whenever a physically disabled individual ventures into the general public, they carry the burden for the general population.  For example, I live in an area where there is heavy foot traffic as well as street traffic.  Everyone is busy.  Everyone is oblivious.  I am amazed at how many people do not pay attention to their surroundings.  Because I am concerned about running into someone, I call out a warning.  “I am on your left.”  Many times, actually most of the time, it has no effect.  I am invisible, and my voice is unheard.

There is a real risk of an accident.  My electric wheelchair has no break.  I control my movemenPedestrian-Danger-2t with a joystick.  If I let go of the joystick, I roll to a stop.  It is a frightening experience to have someone walk in front of me.  There have been too many times where I cried out in fear of hitting them.  Their reactions fall into two general categories:  (1)  Oh, I didn’t know you were there; and (2) Watch what you’re doing!

 

Risk #3:  The Swinging Door Risk.  Public doors have the handicap symbol but do not have a handicap button.  Yep, it’s true.  The physically handicapped person has the following options:

  1. If you have the use of both arms and hands, try to open the door (before getting hit).  Now, attempting to open a door and operate a joystick at the same time is very tricky.  Doors usually open on the right; they swing open to the right; since I am right-handed, my wheelchair control is operated by my right hand.  Imagine this: I grab the door handle with my left hand while seated; then I pull the door to the right while rolling backward.  If I am successful, I am now behind the door to some extent, and I need to get around the door while holding it open.  It is an almost impossible task; or
  2. Sit and wait for an able-bodied individual to open the door for us.  This may sound as if it is an easy solution, but it is not.  Think:  snow, cold, rain, and appointments.

On a side note: One time, I was yelled at by the receptionist at my doctor’s office.  Their office door is frosted glass; they have no handicap button and no door bell.  I rolled up to the door and tried to open it and could not budge the heavy glass door.  So, I knocked.  No one responded.  So, again, I knocked a little harder.  Still, no response.  On my third try, I knocked harder.  This time, I got a response.  A receptionist swung the door open in a rush, looked at me, and said,  “You could have broken the glass!  Why didn’t you just come in?”

I looked at her in amazement and calmly said, “How?  Why don’t you have a handicap button?”

“Humph,” she replied and stomped away.  But, she did hold the door open for me first.

 

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#4:  The Hidden Dangers of Parking Lots.  Wheelchair-bound people are short.  Well, we are all different heights, but we sit below most individual’s peripheral vision.  As a result, knowing that we are already invisible to the general public, when in parking structures, we have to look for people getting into cars; watch for exhaust fumes; avoid being clipped as cars quickly pass us; and be on alert for backup lights.  There is no safe place in parking lots for us.  We are in constant danger of being hit by a car.

 

The above examples are just a taste of the risk involved for the mobility-challenged individual.  I am sure that you could make a list of four more risks.  We live in a risky world full of opportunities, challenges and struggles.  As we gamble to venture out, we are making ourselves seen and heard.

 

Thirteen Steps to One Lesson

 

Stewing, yep, I was stewing in a mixture of emotions.  Feeling frustrated, discouraged, ignored, discounted, slighted, perplexed, surprised, and pressured.  It was unexpected, but, then when would I expect to have no access to a public building in Chicago?

Sitting at the bottom of the stairs and looking at the problem, I was tempted to turn around and leave.  We were at a cathedral for the funeral service of a friend’s mother.  My friend was not expecting me, but I was concerned about her.  She loved her mother deeply, and I wanted to share in her loss.  How was I going to get up those stairs?

My husband (Dennis) and I had driven in from Michigan, in high winds causing whiteout conditions the day before, and spent the night in a hotel so that we would arrive on time without any hassles.  Yet, here we were facing a big one.

Of course, being handicapped meant no front door for me;  I had entered the building via a side door.  As Dennis opened the large, oak door and I rolled in, immediately, I saw the problem: a looming flight of steep stairs.

“This is the handicapped entrance?” I wondered.

Then, I saw the wheelchair lift to my left.  I rolled over, opened the door, and eased into the small space.  Looking for the key to start the lift, only then did I notice that it only went down to the basement.  There was a flight of stairs over my head.

I wondered, “Do they have an elevator somewhere else in the building?  Do I have to go down to get access to the elevator to go up to the sanctuary?”

Just then, a priest appeared out of nowhere.  “Will this lift take me to an elevator so that I can get to the main floor?” I asked.

“Oh, no,” he said as he pointed to a worn out chair lift on the other side of the entryway.  “The wheelchair lift only goes downstairs to a small chapel.  We only have the stair lift to get upstairs.”

Now, that was a problem.  “How will I be able to into the cathedral if I had to leave my wheelchair behind?”  I asked.

“We’ll carry the wheelchair up the stairs,” he said.

“The chair is over 350 pounds.”

“We will get you up the stairs and then carry the chair.”

“No, the chair is 350 pounds without me in it.”

“Well, we only have the stair lift,” the young priest replied.

So, I rolled over to the stair lift wondering what I was going to do once I got to the top of the stairs, if I got to the top of the stairs.

I lifted myself out of my wheelchair and swung around to sit on the stair lift.  As soon as I sat down, I started to fall.  I cried out in fear of hitting my face on the marble floor.

“Help! I’m falling! Help!  Help!”

Luckily, Dennis was right there and caught me as I slid down.

The seat was broken.  The whole front half of the seat was missing support.

“Hmm,” the priest said, “We will have to get the engineer to put a piece of board under the seat.”

“How am I going to get up the stairs?” I said perplexed at his lack of compassion and empathy.  He could only address how to solve the seat and not even address that I almost fell to the floor flat on my face?

“I don’t know,” he responded and walked away.

Yep, he walked away.

It was decision time.  Would I just leave?  I sure felt like leaving.  What a waste of energy and money to come this far just to turn around and leave, I thought.  What about my friend?  She just lost her mother.

Dennis suggested that I try to walk up the stairs.  He would be there to help lift me up.  Holding out his arms, he said, “Susan will want to see you.”

“Okay,” I told him.  “Let’s give it a try, but I am not sure about this.”

I scooched over to the stair railing.  My hands were too weak to hold onto the wooden handrail. So, I wrapped my arm over the handrail and in-between the wrought iron vertical slats.  I placed my left foot on the first stair, then after I was steady, Dennis (holding me at my waist), lifted me up as I raised my right leg.  Step by step, we followed the same pattern.

After several stairs, I started to pant.  Midway through, I needed to rest.  Finally, exhausted and out of breath, we reached the landing.  Now, the next problem that needed to be solved loomed before us.  How was I to get into the sanctuary and to the nearest pew?

“How far do I need to walk?”  I asked.

“About 100 feet,” came the reply.

By this time, a woman had stopped to help (others had passed us by without a word).  This kind stranger held me by my right arm and Dennis by my left.  Bent over, struggling with every step, spending all my energy, I eventually reached the pew and collapsed onto the wooden bench.

As I looked around, I discovered that I was 200 feet away from where everyone had gathered.  All that work only to be removed and isolated.

Trying to gather my thoughts and feelings, I asked God for help.  “What can I learn from this?”

Without delay, the answer came:  Sometimes, our path requires extraordinary effort.  Not everything will be easy even when the motives are pure.  Patience is born out of adversity and hope springs from courage.

 

 

The First Step of Encouragement

Living with a disability presents daily challenges. Not all of them are obvious.  In fact, most of the time, the trials are small, little aggravations that accumulate over time.  The over-arching experience will distill the personality of those in the midst of a struggle.  The distilling process will eventually leave us with a solution of vinegar or wine.  We have all met someone whose temperament is sour and others whose temperament is sweet.

Not all disabilities are of the physical world.  Many belong to the psychological, financial, or familial impairments.  For example, many people are suffering silently from depression or other forms of mental illness.  Everyone lives with a chronic condition.  We are all partners in our struggles.

Sometimes, a little fun, hope, and faith can lighten the load.  My goal is to engage you in a dialogue about all that matters to anyone living with a chronic condition.

I hope you find encouragement here.