The Long Walk: A Huntington's Disease Story

     He walked up the long driveway along the edge of a forest that runs along a rippling stream.  He wonders what awaits him as he returns home from school.  His heart and stomach feels the dread as his brain tells him of what he may find.  He really has no idea.  It could be a fall, or a mess to clean up that he won't know where to begin with.  And it could always be, well, he didn't want to think about that.  He wonders why he has this burden at such a young age, at a time when his friends were all out enjoying themselves. Why couldn't he? 
     It all was just so unfair and it didn't have to be this way.  His sisters could have taken up a bit of slack but that was not going to happen.  He knew it and his father knew it.  He was tired, almost as tired as his father who was gone 14 hours per day to work.  His mother wouldn't accept outside help and didn't want anyone in the house.  She no longer wanted to be seen by anyone. Even though she would never admit she was sick, she obviously knew or she wouldn't create these restrictions.  He knew she couldn't help it, but he gritted his teeth at the thought of those who could have made a difference in his mother's life but didn't.  A difference that would have trickled down to his father and himself as well. 
     No one seemed to understand what a family with Huntington's Disease goes through and this caused him tremendous frustration. He knew his mother was suffering but he didn't know if he and his father's sufferings were less than, equal to, or greater than her's.  It was all so overwhelming to even add up.
     Some things were easier now that his mother could no longer walk.  She would no longer run away in fits of rage at an ill perceived slight.  She was no longer violent so his father's arms were no longer cut and bloodied from trying to restrain her during her violent outbursts seemingly over nothing.  But, she required total care it seemed.  She could no longer feed herself and she was incontinent.  She had to be bathed every day, sometimes twice.  His father would attend to the bath upon returning from work but he himself would change her and then feed her first thing from getting home from school.  It took some getting used to.  He never dreamed he would have to change his own mother but he had been doing it for some time.  He couldn't ever get used to that! 
    But none of this caused him the sick feeling he had in his stomach.  Instead, it was that she slept a lot and it was difficult to tell upon first glance if she was still with us.  Most of the time he would have to check to see if she was breathing, but her breathing was mostly very shallow so he would take her pulse just in case.  The worst case scenario never happened but it was always lurking there.  His father had prepared him for it just in case. Step by step instructions were written down and were gone over many times.  
     He often thought about why.  Why wasn't there help? He knew the answer since his father had discussed it with him and witnessed the walls and barricades that were placed before him time after time.  His father wanted home care but his mother wouldn't have it and the only way to get it was if she were declared incompetent, but that was always out of reach no matter the situation.  Medical professionals would never issue that verdict so we trod on. 
     For him, there was no understanding from those in his life that could have made a difference, such as his teachers.  Instead, they made it more difficult by refusing to correct assignments that were late due to missed time or just plain fatigue. Family members from all sides were absent and friends were falling away.  He could no longer find something in common with those his own age. He was bitter at 16 years of age.
     He would tell his father this evening that he would not be going back to school.  His education would have to wait.  He knew that his father would not be happy about the decision but he had to come to a realization that he needed him to stay at home and look after his mother so his father could work and his mother would not be alone for the few hours if his father was on a day shift. 
     He knew that he was becoming ill, but he wasn't quite sure what was the matter, but he felt a constant dread to each day and he couldn't stop washing his hands.  He talked about the same thing every night to his father, about how they were left alone and that it should not have been this way. But he didn't blame his father, but other family who allowed it to happen.  Those that shirked their responsibilities.  He was angry.
     His walk was now over and he stood on the doorstep.  He didn't look back, and entered the small house nestled back away from the road.  A new phase of his life was to begin at that moment.
     "Hi Mom. I'm home!"