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April 25, 2015 / 6 Iyar, 5775
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Finding Yourself In Someone’s Shoes… Or Wheels

Mina was married for over 36 years. For almost 25 of those years, her husband had a worsening chronic illness. He has been in a wheelchair for the last several years. Mina told me that he was very independent, despite the chair. He shopped by himself, drove from the wheelchair, worked full time etc. In all those years he had had many harrowing experiences. Occasionally a wheel fell off the chair, leaving him on the ground and at the mercy of bystanders, or he might get a flat tire and need assistance. Once he went through a newly cleaned sliding glass door, thinking it was open. Sometimes Mina was with him, and sometimes he was alone. Despite her own experience with the catastrophes, Mina told me that she really never fully understood her husband’s day-to-day challenge, until last week when she was alone and came as close to his experience as a person could.

 

Mina was shopping in a very upscale shopping center. She had her 18-month-old granddaughter with her. The child was in her stroller. Mina entered a department store she occasionally shopped at. This particular store was known to be very posh. From the high quality of the items for sale, to the glistening displays, to the attentive sales people; this store’s service was impeccable. Needing to go to the second floor, and not finding an elevator for the stroller, Mina decided to venture up the escalator. She was immediately stopped by a very concerned store manager who, fearing for the baby’s safety, assured Mina that the store indeed had an elevator. Politely, he told her to go to the china department and follow the red line from there to the elevator. Following the instructions, Mina quickly saw she was in the wrong place. Asking another sales associate, she was sent back to the same general direction and told, this time, to follow the yellow lines. After a few minutes, Mina thought she had found the place, but knew she was wrong when the yellow line led to a seedy looking storage door, behind which were empty boxes and bins. And so Mina returned, yet again, to find directions to the elevator. Mina was shocked to discover that she had been given the correct instructions each time. It seems that the only elevator in this upscale store was a freight elevator. The freight elevator was located at the end of the red line. The red line had intermittent yellow lines as well. It looked as if someone had run out of red paint every few feet and used yellow. Mina followed the lines on the floor until she came to a big ugly door. She had difficulty opening the heavy door and manipulating the stroller through it. Once inside she was shocked at what she saw. On one side of the door was an elegant store and on the other a dump, literally. What Mina saw was a huge warehouse with unpainted cement walls and unwashed floors and very poor lighting that barely illuminated the dark and dingy warehouse. Bins of merchandise were strewn about, and she could not see or hear anyone. Mina was surprised and somewhat frightened. She continued to follow the red/yellow line through dark twists and turns, sidestepping boxes as she went until she finally came to the biggest elevator she had ever seen. Looking around, she found what she thought must be the button for the elevator and pressed it. Slowly, creaking all the way, the elevator doors opened. There was a bit of space between the floor of the elevator and where she was standing. Mina was concerned about the stroller possibly getting stuck in the opening. She thought about calling for help, but she hadn’t seen or heard anyone and couldn’t really decide if calling a stranger would be a good thing or a dangerous one. She manipulated the stroller onto the elevator, pressed “two” and listened anxiously to the strange noises as the elevator creaked its way to the second floor. Once there, she experienced the same scene she had on the first floor, until she finally opened the door and like Dorothy in Oz was once again in the luxurious store.

 

For the first time in her life, Mina told me, she began to really realize, emotionally realize, what her husband faces every day. If it was Mina’s husband who was trying to get to the second floor, how would he have gotten through the doors? What if he had needed help and called out? What disaster might have happened if the wheels of his wheelchair had gotten caught in the elevator opening? What if once on the elevator he could not reach the button? Each “what if” left Mina cold as she realized she had just walked through, for just a few minutes, something her husband and all handicap people face 24/7.

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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