It Is Just Too Much Work

one-step-at-a-time

 

“It . . .is . . .just . . .too . . .much . . .work.”

Frustration breaks our resolve, and our hearts collapse from the strain.

Chronic illness, which we must eat every day, is a fruit that’s bitter from the first bite.  The monotony of our psychological diet leaves us malnourished as we struggle to find the strength to fight to live a life beyond.

So, at some point, even the brave, whose banner reads “We will find a way to be content,” find themselves prostrate on the ground.  As you lean your ear to their mouth, you will hear them whisper, “It . . .is. . .just . . .too . . .much . . .work.”

Then, slowly, they bend one knee and then the other.  Grasping a handicap bar, they pull themselves up.  Their eyes tell the story: clear and focused on the day and its promise of pain, fatigue, trouble, and frustration.  With the smiles of Mona Lisas, they ask themselves, “Do we cry out to heaven with bitter tears?  Are we defeated?”

“No!”  Birds scatter as the sound carries from sea to shining sea.

The more I read, the more I find a deep resolve in the Chronic Illness Community.  Our struggles cannot be easily understood by those who do not experience the realities of our daily lives.  At times, darkness settles on us, and we do not have the energy to fight.  The length of time it takes for the depression to lift is unknown, unpredictable, and capricious.  We know it will release us, eventually.  However, in those bleak moments, it is just too much work.  We need to remove ourselves from the demands around us.

Nevertheless, the more I read blogs written by people suffering from the wide blanket of chronic illness, the more I am amazed at their spirit.  The heartbreaking and heartwarming stories carry the same underlying theme:  It is just too much work, but I will not give up.

I love this aspect of my community.  For the past six years, I have been determined to live despite my disease.  I want to do all that I can for as long as I can.  Sometimes this means tackling two steps to enter a friend’s house.  Sometimes it means that I spend time with family even though I can hardly stay awake.  Other times, I need to listen to my body and bow out of activities I was looking forward to attending.  In the end, I have articulated my determination into the motto Never Give Up.

Often, I see wheelchair-bound people without any spark in them.  My heart bleeds for them.  Could it be that their resolve has been broken by daily frustrations?   I watch them look at me, then my wheelchair, and then into my eyes.  I smile a little; they smile a little in return.  As we engage in an easy conversation, their words expose their pain.  The mirror reflecting their value is cloudy, and their reflection distorted.  In the midst of despair, they fuss and find reasons not to participate in any activities.  Even though we both hope that the feeling will pass, their eyes reveal their secret.  As they complain to me, they are covertly saying, “I don’t want to do anything.  It’s too much work.”

They’re right.  It is too much work  – but, we will encourage one another to do it anyway.  After all, what are our choices?

Published by

Rose Wolfe (Living Free with disAbilities)

Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately. It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities. Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.

13 thoughts on “It Is Just Too Much Work”

  1. I know this feeling of despair that wraps itself around us…but then I also know a strength that goes beyond pain..and a Faith that carries me when I can’t stand..we are broken..but absolutely not OUT!!! Us chronic sufferers might lack ability in some areas..but we have an inner strength that grows tremendously!! Great blog Rose…

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  5. It is a blessing in this darkness to find kindred souls, such as yourself, Rose, although it is dreadful what we must endure (I wouldn’t wish chronic illness on anyone). There are times when the stresses mount and I seek solace (quietness, my animals, creating) alone, whilst at the same time, paradoxically, yearning for the friendship of others. Now is such a time.

    Sometime we have to just go a little slower, but we mustn’t lose heart…faith, love, hope.

    “Keep love in your heart. A life without it is like a sunless garden when the flowers are dead.” – Oscar Wilde

    http://www.whatchristianswanttoknow.com/bible-verses-about-strength-25-encouraging-scripture-quotes/

    Love + HUGS my Friend.

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  7. Until finding your blog, chronic illness wasn’t a topic I’d given much consideration. Other than passing condolences to persons outside my circle of interaction, I’ve never been close to someone with chronic, degenerative or life altering illness. Thank you for a perspective that otherwise wouldn’t have entered my world.

    That said, I can’t shake the term depression. I was 7 years old the first time I watched my mother taken away in a straight jacket. Her depression shaped my life – in and out of the psych ward, calls after I left home threatening suicide. A published writer, artist and extraordinary woman shackled by depression.She just turned 81, has been blind for 10 years, and never figured out how to live without depression. I may be way off base but can’t help but consider depression a chronic illness. Thanks for listening. 🙂

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    1. I am glad to have met you. There is a spark in your writing, and you write with unabashed truth. Honestly, until I was diagnosed with muscular dystrophy, I hadn’t given chronic illness much thought – which is odd since my father and uncle had muscular dystrophy. At one point in my life, I took my uncle in and cared for him. The story of your mother’s struggle with depression is very powerful. You are right on track, depression is a chronic illness. Mental illness is often misunderstood and even mistreated. Depression is an “invisible” chronic illness that carries a social stigma – which aggravates the condition. Thank you for your thoughtful comments.

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      1. Your opening remarks mean more than you’ll ever know.When I started notestoponder I hadn’t written a word in 30 years, a few months in I pressed “publish” on “Regret”, https://notestoponder.wordpress.com/2012/11/28/regret/
        Shortly after that, Recollections flowed –

        Recollections


        I believe people manage as best they can, life doesn’t come with a manual or promises. Rich, poor, black, white, theist, atheist, disabled, intellectually challenged, degenerative illness, victim of physical or sexual abuse, mental illness, phobias…. people whose only difference is in challenges faced. No one better or worse than another, simply persons deserving of compassion, support, understanding and equality. Sigh.
        If you can stand one more link, I think this post speaks volumes –

        Dear Erin

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