When You Are No Longer You

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There we were at WalMart.  I know, ugh.  Shopping is not one of my favorite activities and, if I were to pick where to go, it would not be WalMart.  It is too big, and I find it exhausting. But I needed to get a spill-proof cup because I have a tendency to tip over my water glass in the middle of the night.  Anyway, the three of us (my husband, my caretaker, and I) were out shopping.

At first, I thought I would just head out on my own.  It seemed reasonable:  I would roll my wheelchair down to the car, press the button on my handicap-conversion van, roll up the ramp, and transfer to the driver’s seat.  Of course, clamping the wheelchair into place presented a significant problem.  With myotonic dystrophy weakening the muscles in my hands, there was no way I could secure my wheelchair.  So, the necessity of someone coming with me, and both companions wanted to accompany me.

It is a wonderful life I have to enjoy the company of two people who care for me with loyal devotion.  However, I am ashamed to admit, sometimes it drives me crazy.  Buying the cup, for example.  As the three of us approach the aisle, my two loving companions spring into action.  As with the flutter of two birds, they set about selecting cups and showing them to me.  As I reject each choice, they happily return it for another option.  Now, they are trying to find what I am looking for and are doing a fantastic job of it.  Nonetheless, I start to feel overwhelmed and cranky.

Rather than having the opportunity just to look at the display, I find myself having to explain what I am looking for and why their selection does not fit my requirements.  At this moment, I feel as if I have lost adulthood status.  No longer am I in a position to take care of myself.  First, I can no longer just hop in the car.  Second, I cannot drive myself to the store.  Third, half of the shelves are out of my reach.  Lastly, I am not in a position to quietly make a minor purchase choice on my own.

As I think back on this scenario, it occurs to me that I could have told them how I was feeling.  It would have been easy to say, “Thank you for being considerate.  However, I would like the opportunity just to look at the cups and ask you to reach the ones that I cannot.”  Yes, it would have been easy.  Yet, I did not.  Maybe next time I will remember.

Living in a wheelchair has robbed me of my adulthood in many situations.  Most of the time, I can acknowledge the feeling, understand the source, and avoid the tension.  Sometimes, it just gets to me.  I am not proud of myself.  It is a weakness.

In some ways, it is akin to what elderly people have told me.  As they become unable to care for themselves, their children start to take on the parental role.  This status change upsets the emotional wellbeing of the parent-adult.  For the elderly and for me, to lose status and become dependent on someone else is a significant loss of equilibrium.  I believe it is the result of the loss of the I Can Do It Myself feeling established in early childhood.  It is when you are no longer you.

Probably, you remember those first occasions of being able to tie your shoes or button your coat.  Those were glorious moments of independence and sense of self. Sadly, as we weaken from disability or the aging process, those moments are slowly replaced with attempts to reaffirm our status.  But it is a losing battle.  The body will not obey, and we are slowly delegated to a subadult status.

This is not the end of the story. Even though my body is wasting away and I am losing my status, I am afforded the opportunity to mature in my spirit. For as I develop patience, I cultivate the character to understand that my struggles are momentary,  but my hope is eternal.

“Therefore, we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  (2 Cor. 4:16-18)

 

Revised August 9, 2016
Originally published Feb. 23, 2016

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.

8 thoughts on “When You Are No Longer You”

  1. When my four year old grandson say, “But I can do it,” even when it’s too difficult he is projecting his hope of believing that his initial attempts now will lead to one day being able to master a skill. You beautifully juxtapose the youthful hope of growing in skills with your desire to grow – your inner spirit, discovering in your heart who you are.

    Liked by 2 people

  2. Thank you for sharing your story, it is was so inspiring. It gives me a better understanding of what my mother is experiencing as she is getting older and simply how she must feel now that she nearing her 80s. Thanks again!

    Liked by 1 person

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