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.”