Pages of my life…

There Is No Such Thing As Fair

Posted on: August 2, 2009

  August is a funny time of year.  Most people are planning their return to school…or cramming in the last bits of summer vacation.  For our family…it is the time of year when one birthday in particular is front and center on everyone’s mind.  My stepbrother must have been born under an unlucky star.  As a child…it was discovered that he had juvenile diabetes.  From that point on…his life was a constant task of weighing and measuring…checking blood sugar and perhaps not watching his diet as closely as he should have done.  He was about forty when his eyesight had failed to the point he could not longer have more laser surgeries.  It would be months before the floaters in his eyes settled down to allow him to get new glasses.  He often said it was like looking through a piece of plastic.  While he awaited further surgery on his eyes…his dad brought him to come and live in California…where the winters would be more forgiving and the demands of everyday life…less of a chore.  He showed up at my doorstep one day unannounced and unexpected.  He simply arrived and proclaimed that he had always wanted a sister…and now he had one.  Our parents had been married for about twenty years.  I had seen him only once for a brief few moments during all that time.   He brought his RV to maintain his independence and parked in the lot in front of my townhouse.  He would stroll in at seven in the morning and leave around midnight each night.  Having my children around was like a breath of fresh air…and every night we played Scrabble after dinner to pass the time.  I quickly learned everything there was to know about Diabetes.  I measured food and checked for calories, food exchanges and content.  Despite watching every morsel that went into his mouth…his blood sugar was bouncing all over the place without explanation.  A complicated eye surgery was arranged and the long  awaited new glasses finally arrived.  For a brief moment…things were looking up.  I ascended the stairs and said goodnight on one particularly exhausting evening.  I woke out of a sound sleep without explanation…surprised to discover that I had fallen asleep with the radio on.  I reached and turned it off..only to hear the television was still on downstairs.  I peeked down the stairs and saw that my stepbrother had fallen asleep wearing his new glasses.  I called out to him…louder and louder…only to realize he was fast asleep.  If I had not been so concerned over him breaking the new glasses I would most likely have gone back to sleep.  The closer I got…the more I realized that something was not right.  His shirt was soaked all across the chest area.  He was not responding to my voice and did not budge even when I shook him.  I called 911 and immediately my mind went into overdrive.  He was not conscious to be able to swallow a bit of orange juice…or soda and anything sweet.  In a blink of an eye…it came to me.  A teaspoon of jelly has a teaspoon of sugar…and I was able to halfway revive him by putting jelly in his mouth.  The paramedics and hospital personnel worked on him for nine hours that night.  We got lucky.  More testing was done and it was discovered that the diabetic shock he had slipped into was caused in part because his kidneys were shutting down.  Dialysis is not an option until you are down to ten percent kidney function.  Once you are on dialysis…you can get on a list to hope for organ donation.  The rigorous testing prior to transplant approval revealed that he need to have a quadruple heart bypass surgery before he could be a transplant candidate.  He had the heart surgery and recovered nicely.  A bad pager cost him a good kidney…but he eventually got kidneys and pancreas from a donor…which meant that he did not have diabetes anymore.  The surgery is so long of a process…that the original organs are left in and "piggybacked" in case of failure.  He had long since been unable to feel his legs from the knees down.  It was a great source of embarrassment for him as he tried to dance on legs he could not feel and felt everyone would mistake his swagger for inebriation.   Some time later he got a small blister on the bottom of his foot.  The doctor said he should soak it in warm water.  He did…but the water was too warm…and he ended up having to get skin grafts to repair the damage.  Infection set in and he was devastated to learn his big toe would have to be amputated.  This would mean even further mobility issues concerning stability.  When he went back for his check up…it was learned the infection had spread further and the day before his birthday he was told they needed to amputate his leg immediately.  I threw the kids and the Scrabble game in the car and drove hundreds and hundreds of miles to surprise him at the hospital.  I shared with him my "they can kill me but they can’t eat me" philosophy…and told him he would need to make some adjustments within his own heart and mind to compensate for the missing leg.  Children would ask questions…people would stare…human nature being what it is…this would be unavoidable.  I suggested he either come up with a wild story about how it happened or to learn how to look everyone in the eye and smile.  Amputation is a funny thing…because they cut off a limb and then cast you into the world with little more than a few stitches over a nub and a bit of stretch bandage.  The process of shrinking the nub and preparing it for an eventual prosthetic device is a long and tedious one.  It was a sad day…and sitting at the dinner table that evening was even more tragic.  My Mom and his Dad both looked as though they could cry.  Eyes looked everywhere but at each other.  I announced that after dinner I was taking my stepbrother and the kids to the county fair.  We embarked on our journey with a wheelchair and a smile…and met each gaze with a heartfelt hello.  The next night I took him back and we went to the street dance.  Wheelchair dancing is something I had experienced before.  I have a serious rule about either dancing with everyone or dancing with no one at all.  Picking and choosing a dance partner because of their pretty face or stylish clothes has always seemed to be as unfair as only dancing once with someone who can clearly use some extra practice.  I once went to a club where the dance floor was filled with everyone but the one guy sitting in his wheelchair…so I asked him to dance.  He was so clever with all of his twists and turns and wheelie like moves that he did not sit out a single dance for the rest of the evening.  Anyway…in time my stepbrother learned to adapt.  Shortly after he got his first prosthetic leg…he and his daughter were on their way to a community affair…when their car was struck by a drunk driver going 85 miles an hour.  My stepbrother was pinned under the vehicle for several hours while the jaws of life worked hard to set him free.  He looked like someone had beat him with a baseball bat.  Five more prosthetic legs later…he finally could get around pretty well…and the unthinkable happened.  He found a girl !!!  After eleven years of being on his own…at last a girl to go places and do things with had come into his life.  They met in church and for the first time in a long time…all was right with the world.  And then the other shoe dropped.  It turned out that his original kidney had developed a horrifically painful and deadly cancer.  Chemotherapy and all forms or fighting were pretty well out of the question because they would fight the rejection drugs that would keep him alive.  If he quit taking the rejection drugs his organs would shut down even quicker…so he was handed a death sentence from which there was no escape.  We were all crushed beyond belief.  I flew everyone in for a birthday party for him…gave him enough resources to do anything he wanted for the rest of his short life…managed to get Willy Nelson tickets as part of a dying wish…the other half of which was locating his daughter and grand kids and bringing them for the party.  In keeping with the rest of his deepest disappointments…his little five year old granddaughter walked in with obvious eye problems.  She had been riding her bike into large objects without noticing them…and was holding onto objects as she walked across the room.  Can you imagine dying at such a young age as my stepbrother was…after all he had been through…and enduring the reality of his beloved first grandchild having a brain tumor that would render her blind before she started kindergarten ?  Most people would have lost faith in everything and everyone at that point.  A life lived in a purposeful fashion…hard working…kind, helpful and sincere…being swept away at the ripe old age of fifty one…made us all realize…life is not fair.  His little granddaughter drew gasps from the crowded restaurant when I walked her to the restroom last year.  Something about seeing a little girl with her blind cane sweeping the floor side to side touches your heart.  If you feel pitiful and have less to cope with than my stepbrother did…reconsider directing your energy toward something good.  If you know someone with diabetes…be kind and understand that there is so much more to this horrid disease than the inconvenience of poking your finger a few times a day.  If you have a birthday cake with more than fifty one candles on it…be thankful that you are one of the lucky ones.  Life can be cruel and unkind…even to those who complain the least.  Happy Birthday to my stepbrother and friend…this and every August.  We will miss you as long as there are stars in the sky. 


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