VIEW FROM MY WHEELCHAIR: RENEWAL

“Will it be a great day?”

Hoping to start a new painting, I make preliminary plans for the day.  Lately, my energy has been in the toilet.  But not today!  Finally, I feel 75% of the old me.  Not wanting to lose my burst of vitality, my caretaker helps me to get dressed, and off we go to my painting space.

These moments are precious.  They can slip away without notice and fall away.  It is as if I live on the edge of thin, spring ice.  My footing is tentative on the slick surface of promises.

Living with a deteriorating, chronic illness requires me to assess everything I do. All the time, I need to make sure that I am not operating under the wrong assumptions. One day I can open a container of yogurt, the next day, I can’t. Then, suddenly, a week later, I can again. As time creeps forward, the “I can days” are being outnumbered by the “I cannot days.”

It can be quite maddening – plans need to be conditional. Without notice, I have to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity of daily living needs to be examined. “Is it a good day for a shower? What else would I like to do today?”

Finding the way through the uncharted territory of my new life, I know that there are two rudimentary reactions to the fickleness of my days.  I can view them with as robbers of my life, or I can dig deeper and discover new ways of being me.  For me, the option is obvious.

So the process begins: my new life is defined.  I am renewed.

Phil 412 version 2

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.

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