Statuses

Is Inspiration A Bad Thing?

Sunset

“If you don’t know me, then don’t tell me I inspire you,” she wrote.

When I read the above statement, I had to read it a second time.  Wow, I thought, someone has had enough.  I wonder what happened.  Was it a specific “I am fed up” moment?  Or, was her aggravation a compilation of  unwanted “back slappings?” 

Whatever had triggered her reaction, it had denotated an explosion of words.  Her anger told a story of the internal angst that grew to the point of pushing people away.  Obviously, she didn’t feel as if they knew her and her struggles.  Maybe this is what she meant when she wrote, “If you don’t know me, then don’t tell me I inspire you.”

Over the last several years, people tell me I inspire them.  It’s an odd experience because I don’t feel inspiring.  In fact, I am not given to such ideals.  Energy is leaking out of my muscles as if I were running on a bad battery.  With no way to recharge my ions, I am consumed by living – today – in this moment.  I have no alacrity to spend on being inspiring.   My drivers are simple emotions:  don’t give up, do as much as I can, make every moment count, and love and encourage others.

I can’t speak for the author of the above quote.  However, I can tell you about me and what the word “inspire” triggers.  For the first few years, an emotional weight was placed my back the moment someone told me I inspired them.  I felt confused.  What did they mean?  My thoughts were as jumbled as my bewilderment.  Oh, no, they think I am Herculean.  At some point, I will disappoint them.  What do they expect from me?  I am not sure what it is, but I am already carrying a heavy load.  Most certainly, I don’t feel capable of anticipating their needs.  What if I fail at it?  How can I be inspiring when it takes my all to just get through the day?  I wonder what I inspire in them?  Do I motivate them?  Are they galvanized?  If so, to do what?

I guess that was the crux of the problem for me: I interpreted their words to mean that I was fulfilling an unspecified need of theirs.  My perception of the transaction carried a meaning not intended by the other person.  All on my own, I took a kind word and turned it into a duty to perform.

Recently, someone took that burden off my shoulders with a simple qualifying statement.  They said, “You inspire me to keep trying.”  Bells ringing, lights flashing, and clouds whisked away.  Ah, ha, they are inspired.  Whatever they are facing, whatever trouble is looming in their life, they are motivated to keep going.  Good.  I am glad.  They are encouraged.

All along, people have been giving me a gift.  A kind word and a gentle love.  No burden or pressure to perform.  It was never about me doing for them.  They are trying to encourage me, to give me something in return.  They are attempting to make a deposit in my “bank of good feelings.”  It was my goals being lived out in others.

They are galvanized to not give up, do as much as they can, make every moment count, and love and encourage others.  They are inspired.  It is a good thing.

Even if you don’t know me, I hope you are inspired.

 

You Can’t Do That Anymore


Sitting in my wheelchair, on the edge of a trampoline mat, the same thought kept running through my head.  I want to jump.  Nah.  Yeah.  I want to jump.

With one final I want to jump, my mind took off with exhilarating memories of bouncing on trampolines and flying through the air.  Two things I enjoyed as a kid: swimming and jumping.  When small, personal trampolines first hit the market, I was right there in line to buy one.  For years, I enjoyed bouncing – tiny, little flights of gravity-defying moments.

All those memories were buried away deep in the past.  Until recently, when I took my grandson to an indoor trampoline park.  If you ever have the opportunity, go.

The indoor place near me has four separate areas.  Each one designed for a different purpose: freestyle, a basketball room, a dodgeball section, and a foam pit area.  You can even bounce off the walls!

As I sat there watching my grandson bounce, jump, and fly into the air, I felt intoxicated.  My body craved to fly.  I wanted to bounce, to lift my feet off the floor.  I wanted to defy gravity once again.  For a serious moment, I contemplated it.  For a very long, serious moment.

Then reality seeped into the crevices of my gray matter.   Do I have the core strength to bounce?  How uneven is the supporting edge?  Would I be able to get to the mat and back?  What if I fall?  No, better not try.  Maybe?  No.

I live in a new world, the world known as You Can’t Do That Anymore – But You Can Remember.

Some people advise us to forget the past.  They say it is best to live in the moment.  “The past is too painful,” they preach.  While I agree that living Right Here, Right Now is a healthy lifestyle choice, the past should not be forgotten.  Memories of how things were before we became disabled don’t have to be pushed away.  Our previous experiences add a richness to our lives.  Not only are there valuable lessons to be learned, but there are pleasures to be relived.

To reminisce and, once more, taste the pleasure of precious moments are treasures to be discovered.  Just like the unsolicited recall of an uncomplicated time in my childhood, we can choose to remember with joy – not pain or regret.

I may not be able to jump, but I can fly once more.

Split Infinity

GeraldTheWriter’s current post will bring some laughter your way.  Just take a moment to read the following:

My body isn’t speaking to me. Last night I told it to play capture the flag with a thirty something, a twenty something, and a dozen eighteen and under caffeine like humans with legs made of rubber…

Source: Split Infinity

Restoration

Even though muscular dystrophy attempts to lay claim to my life, I have found a few ways to come out from the shadow of my disease.  One of my pleasures (and therapies) is painting.  This creative form affords me the freedom to live beyond the limits of my physical world and to express feelings that expand beyond the limits that words impose.  The more I paint, the more I feel compelled to paint.  It is addictive and healthy.   As I work to bring an oil painting to completion, I am restoring little pieces of me.

Two years ago, on a sunny, winter day, I was admiring the beautiful shadows trees were casting on the snow.  The more I thought about those shadows, the more I felt motivated to paint their beauty.  Then, the clouds came and refused to go away.  Weeks passed without any sustained sunlight; brief moments were followed by long, gray days.  There were no shadows.  How symbolic!  How often do we who feel as if our disability has made us shadows of our former selfs have taken the opportunity to hide?

Finally, the sun returned and the shadows could hide no longer.  Fearing that they would quickly retreat again, I had no time to waste.  Making changes to his day, my husband lovingly agreed to take some pictures with the hope of capturing those elusive beauties.

As soon as he returned home, I scrolled through the photos until I found the one that revealed their complex beauty.  Taking printed photo in hand, I went to work.  After some time, the painting was finished.  The shadows would forever declare their presence to the world.

Now, for the final step: varnish to keep the elements from eroding and dulling the paint.  Some artists advise that there should be a six-month waiting period before varnishing a painting.  However, this time, I followed the advice of an expert who counseled that a painting could be varnished right away – if done within two weeks of the original drying time.  So, after a week-and-a-half, I started to brush varnish on my painting.  Suddenly, to my horror, I realized that the white paint was smearing and making the entire painting milky in appearance.  I stopped immediately,

With painstaking effort, I slowly removed the varnish from the painting.  Using dry brush after dry brush, I wiped away as much of the milky, white paint as I could.  Then, I left the painting on the easel.  I wondered, “Could it be restored?”

Returning to the painting two days later to assess the damage.  There were areas that needed to be reworked.  Mixing the paints slowly, I contemplated how to go about the process of showing those shadows how beautiful they were.  Could I remove the stains?  Would the shadows allow themselves to be restored?

 

Restore-with-Gentleness-WEB
Oil Painting by Rose Wolfe

 

Insomnia is Making Me Crazy

Uggh, 4:23.  I don’t want to wake up.  Breathe deep.  Take it in, and, now, let it out – slowly.  Relax.  Go back to sleep.  No thinking.  I wonder, what should we have for dinner tonight?  No, no thinking.  Go back to sleep.  Relax.  Good morning, Lord.  Thank you for the day.  ‘This is the day; this is the day that the Lord has made.  I will be glad and rejoice in it.’  No singing.  Go back to sleep.  Relax.  Maybe I will paint this morning.  I wonder if I should add a little bit more Burnt Sienna.  That will make it warmer.  Stop it!  No thinking.  Relax.  Go back to sleep.  I wonder if I will be able to take a nap today?  I have been very weary lately.  And, now, I am awake instead of sleeping.  As usual, Beth was kind yesterday.  She’s a real trouper.  Always right there.  Helping me stand up for songs.  Why can’t I just stay seated?  It is getting hard to stand.  Cut it out!  Go…back…to…sleep.  My stomach is starting to churn.  It’s no good getting all worked up about not sleeping.  Oh, my.  I am awake.  Yep, no trying to deny it any longer.  I wonder, do other insomniacs go through the same routine?  I might as well get up.  What time is it?  5:13.  Uggh.

Insomnia is not really making me crazy, but it does play havoc on the mind and body.  Lately, I have been weary to the point of crying.  The feeling is not fatigue; it is beyond fatigue.  Thus, when insomnia kicks in, I feel challenged beyond my ability.  How can I operate on little sleep when I am already weary from fighting the war against my disease?

Every day is a struggle, to reiterate, every day is a struggle.  My body is at odds with my mind.  I am grateful that I can think, and write, and paint.  Nevertheless, the fight takes energy that I don’t have in reserve.  Picking up a glass of water takes forethought and purpose.  Eating is a mindful activity.  Cutting my own food is nearly impossible.  Every little thing takes determination.

My mind swirls.  With the sand running thin on the hourglass of my life, I want to give everything now – not get, give.  So, I  push my body, and my body is starting to push back – hard.  Weariness has set in – deep, dark weariness.

Now, I am fighting on two fronts:  my physical body that demands to do nothing and my emotional well that has run dry and demands rest.  Two fronts, both wanting me to stop.  Just stop doing, they cry.

How can I stop?  What will remain unfinished?

My mind swirls.  The waves of confusion are crashing over the sides of my ship.

Maybe, insomnia is making me crazy.  Wait, I still have hope.  Sitting right there in the middle of the storm.

How many of us are operating at a less than an ideal energy load?  Disabilities take an additional amount of emotional and physical effort not easily understood (if it is even possible) by neurotypical people.  However, we all feel exhausted, at times, from life’s challenges.  The day-to-day battle is not mine alone to fight.  The storms we face churn our hearts with an ache for calm.

As we wait out the raging emotions and the weariness, our patience will bear fruit.  We find a place of refuge.  Suffering is a vehicle that can drive us crazy for a season.  But the insanity will subside.  We become resilient.  We know hope – for hope is the child of patience.  And, hope never fails.

Have Courage to Hope
Oil Painting by Rose Wolfe

Falling Out of Bed

 

Hope-and-Joy
Art Work and Quote by Rose Wolfe

 

What would I do if I lived alone?  It is 5:30 a.m.  Waking, but still asleep.  Nature calling me out of my dreams, I roll over and sit on the side of the bed.  Only I misjudge and end up on the pillowtop edge of the mattress.  Uh oh, I think.  Scrambling as only someone with weak muscle strength can hustle, I try to push myself up.  No point in trying that maneuver; I am going down.

My husband (who sleeps on the cusp of alertness) asks me, “Are you okay?”

“Nope, I’m falling,” I reply as I struggle.

Hustling as someone with real muscle strength can hustle, he is on the side of the bed and holding me.  The comedy of the situation is not lost on me.  My husband moving with the speed of The Flash, and I moving with the sluggishness of The Blob.  Together we aim for a safe landing.  Failure.  I am now at a perilously steep angle.  The Flash is now The Hulk, and he lifts me up.

The Hulk calls out, “Push.  One.  Two.  Three.”

Ah, that magical number, three.  I love it.  Somehow, it is the key to success.  Between his superhero strength and the incantation, I am now sitting firmly on the mattress.  Disaster averted.  The floor will need to wait for another time.

Today’s routine was number four in the last three years.  The odds of fending off winding up on the floor is a 50-50 proposition.  This morning’s event was precariously close to changing the odds in favor of the floor.

Every time I see the neurologist, they inquire into how many times have I fallen since my last visit.  The assumption is that I have fallen.  So, I surmise that falling is a hazard of myotonic dystrophy.  Makes sense.

Now, sometimes falling is a good thing, such as falling in love.  Other times falling is an unpreferred result, such as falling on the floor.  I wonder, could the preposition be the culprit, in as opposed to on?  Probably not.  Just a wondering thought.

All this brings me back to the question, What would I do if I lived alone?  The answer is obvious: You can’t live alone.  Another loss hidden away in the sheets of my life.

I cannot live alone.

We begin life dependent on others for our survival.  All through those years, we yearn to be free, to be independent.  During our years of independence, we make our decisions and determine our fate.  Eventually, and it will happen to all of us, we return to a state of dependence.  We learn, no, more than learn, we are forced to depend on another.  Otherwise, we cannot survive.  It is the final cycle.  And, I have entered it.

Suffering and loss will happen; they cannot be avoided.  If I am willing to be patient in the midst of hardship, I will develop character.  The kind of person who will find joy because hope resides alongside the hardship.                            Rose Wolfe

Who Are We. . . Now?

Charity-Prevail
Photograph by Rose Wokfe

I watched him approach, the summer sun reflecting off the white stick making its own music, tap-click-tap-tap, as it hit the sidewalk.  The girl holding his hand looked to be about 11 years old, my age.  Fascinated by his blank eyes that looked heavenward, I found myself unable to turn away.  Knowing that it was rude to continue my scrutiny, I forced my chin to move; my eyes following at a slower pace.  It was then that I noticed her eyes.  Those clear, brown eyes were staring at me; then, just as quickly, she tilted her chin and looked at the ground.

Eventually, the girl and I became friends for a school year.  Because it was just the two of them, her life centered around her dad’s needs.  Even though I was responsible for the laundry in my home, I still had plenty of time for me.  She didn’t.  Back then, there was no ADA, no reasonable accommodation, and certainly no stoplights that talked or beeped.  It didn’t occur to me until just recently how difficult her life must have been.

A parent with special needs compelling his child into a life of servitude.  She never complained.  He always complained – about the failure of social services.

The next summer, they were forced to move into a housing project that was a community of the marginalized, poor, and disabled.

Where was our charity?

I grew up reading Charles Dickens.  Loved the guy with his embellished stories and characters that were characters .

With strong imagery to support his rich and complex stories, there was much to glean from his writing.  Nevertheless, Dickens’ social criticism bore into the inner layers of my young heart.  The contrasts between the lifestyle of the affluent and the destitute were strong and severe.  Lurking in the background, society’s lack of compassion compelled the orphans to be pickpockets and the beggars to be connivers.  Otherwise, they could not survive.  Having lived in a time when America’s streets were not congested with the disenfranchised, who were forced to expose the intimacy of their lives, I wondered how could respectable people walk by the needy without acknowledging them.

Then, the 1980s hit, and President Regan made changes to the Housing and Urban Development’s policies.  Trickles of homeless people started to leak onto the streets.  Today, we have neighborhoods of cardboard homes tucked away in the dirty corners of unwanted land.  These communities are filled with the mentally, physically, and financially disabled.  Dickens’ world is our world.  History has repeated itself once more.  We have become the respectable people who walk by the needy without acknowledging them.

Where is our charity?

 

In 1990, the American Disabilities Act provided for regulation of handicapped parking spaces.  Based on my observations at the time, the spaces were usually empty.  So, I concluded that there were too many spaces set aside.  Besides, I thought, how many disabled people could there be?  I knew of only one.  My uncle – who never went out unless it was for a doctor’s appointment.  Yes.  I was ignorant and callous.

Nevertheless, the handicapped spaces were left pristine.

Today, violations are rampant.  It is common to see people park in handicapped spaces without the required placard or plate.  Setting aside those who appear to be  healthy but are justified in their use of handicapped spaces, we know that there are many people who use the spaces illegally.  In San Francisco, the misuse of the spaces is so egregious that the fine for one violation is $1,000.  Yet, the law has no bite.

We have become a society that clamors for justice.  However, when it comes to examining ourselves, well, we don’t.

Will there be charity?

“Did universal charity prevail, earth would be a heaven, and hell a fable.”
Charles Caleb Colton

 

 

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)

 

Words. Wound.

Seems obvious, doesn’t it?  Words wound.

 

Talking over the television, I say, “Mom, how are you today?’

“Oh, okay,” she mumbles.

“I like your pink sweatshirt.”

“Hmm, hmm.”

“Is it okay if I turn off the television and take you go out for dinner?  Then, on the way back, we can stop for Butter Pecan Ice Cream.”

“I want some chicken.  And ice cream.”

“Okay.  We can go to the little Italian restaurance you like on Taylor Street.”

“I want some chicken with mashed potatoes.”

“Okay.  Do you have your keys with you?”

“What?”

Your keys.  Do you have them?”

“I don’t know.  What keys?”

“The keys to your room.  Let’s find them and turn off your television before we leave.”

“Ah, here’s your keys,” I say as I touch the ribbon around her neck.  “Shall we go?”

As I push my walker towards the door, she turns to look at me and says,  “What’s wrong with you?”

“I have muscular dystrophy.”

“Well, you didn’t get it from me.”

“No, Mom, I didn’t get it from you,” I reply and close the door behind us.

 

 

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

#ChronicBlogs
#disability

 

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 Crop

“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  | April 4, 2016

wing-221526_960_720In 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.”

View From My Wheelchair: Some Summertime Fun


Everything we know, knew has been turned around. Chronic illness took our definitions and buried our sandcastles. Yearnings remain, unrealizable. 

The sand at my feet haunts me with memories: 

Me, as a child, playing at the beach; Me, with my child, playing at the lake.

My heart beckons me, and I respond, “Yes, yes, I will find new ways to have fun.”

So, now, I dig deep into my soul. Pouring out my pain. Fun can be, is redefined. Laughter bursts. I find joy in watching others play in the sand and water. 

The rePurposed Life

The rePurposed Life

When I started writing this blog in February, I wanted to engage the topic of living outside of our disAbilities. After all, everyone struggles with a disability and not all struggles can be neatly categorized (nor acknowledged by the afflicted).

My disAbility is obvious. Your eyes rivet to my rolling chair as I enter the room. The first seconds of meeting, we negotiate a social awkwardness.  Eventually, I come up with a  lighthearted quip, hoping to put everyone at ease. With children, it is different. They stare at me until their parent becomes uncomfortable. I don’t mind their straightforwardness. They are real and honest with curiosity.  As our eyes meet, I smile and try to elicit a response. It allows me to engage with them about their unanswered questions.

Anyway, because I have failed and succeeded in my new role as a physically disabled person, I thought my focus would be on encouraging anyone who is struggling. My mistake was focusing on “disabilities.”

My life is not about my physical and mental limitations. It is about finding a rePurposed Life. Moving forward from a scared child to a petulant youth. . .until, finally, an earnest adult. But my disease changed me further.  It was another twist in the narrative of my life’s story – a page turner.

Because of (and in spite of) muscular dystrophy, I reexamined my life again. I found it wanting – lacking vision.  What did I desire?  Over and over, I asked myself to define my purpose. The answer exploded in my heart as I watched one, two, three, four, five people die. What legacy did they leave?  What legacy did I want to leave? To love others (family, friends, neighbors, enemies) and to encourage them.

Yes. It was time to take the focus off of me, the petulant youth who never grew up. I want a life that has meaning – with God centered.

No preaching. No condemnation here. Just honest conversations about how we think and what we do.

So, I am thinking about renaming my blog from Living Free with Disabilities to The reRepurposed Life. (The url will remain http://livingfreewithdisAbilities.com.) What do you think?