The Seasons of Huntington's Disease
Where I come from in Nova Scotia, Canada there are four very distinct seasons. They are abrupt and seldom do they gradually blend into the next season. It always seems to happen quickly. Winter, Spring, Summer and Fall, or Autumn as some call it, all have their own personalities. Winter begins on December 21 and although we may have had a bit of snow beforehand the real hard winters seldom begin before that date. It is a difficult time for many with major storms making it difficult to get around and it can be expensive as well with heating bills and even for groceries since produce prices can sometimes be higher.
The same is true for March 21. It is a beginning that is usually full of promise of new life. We can be mostly assured that the trees won't be showing their buds or that many flowers will be in bloom before then and we can also count on the evenings being a bit too chilly for too many bonfires on the beach until that magical date of June 21 when Summer begins. It's my favorite time of year. Balmy warm breezes in the evening, get-togethers with friends on the beach along with many festivals and community gatherings to attend. It is a simpler time. Everything is in full bloom with most people planning weekends and vacations, enjoying families who are home from school, but as September 21 approaches I grow leery because although Fall is a beautiful time of year, the nights get cold again, the leaves fall from the trees and frost warnings tell us what will soon come. Fall is full of good and bad days. It can be lovely and warm one day and cold and rainy the next and then all of a sudden it turns to go through the cycle as expected. It is Winter once again.
For most with Huntington's Disease, it appears to me that it mimics the seasons.
In the Spring, we are young and full of life and promise. We bud and begin to bloom, preparing ourselves for life with eyes so wide and expectant of a bright future, then we reach our Summer.
Summer is that time of adulthood where we realize who we are and what we are capable of. We enter the world on our own and become something, whatever that is we find in ourselves. We may have chosen professional careers, or we may have chosen to flip burgers, but whatever we do we have found that we are like most other people. We may find someone special, maybe get married and or have children. Most of us are enjoying life's little ups and downs, successes and failures, happy times and sad times. But at some point during this time Huntington's enters our lives. It may not affect us yet, but we are thinking a lot about it and someone we know in our family is in a bad situation with it. We are about to enter the Fall of our lifetime.
For me as a spouse and a caregiver to someone afflicted with Huntington's Disease, the Fall was the worst of the disease. It was full of vile things, of times of trouble. I couldn't predict what would happen from one day to the next and nights seemed to blend with the days and vice versa. Don't get me wrong, there were also some wonderful days when things would go smoothly and happiness would prevail but then it would grow cold and distant and dark. It was becoming more difficult to get out in the world, and the damp cold would make my bones hurt and my backache. Sometimes the weather would make it difficult to travel to work especially when it got closer to Winter. The nights grew longer and seemed like they would never end, only to have a longer night the next day. And then would come the longest night of the year...December 21.
Winter has arrived and with it comes isolation. We can hear the cold wind blow with its mournful cry as we sit and watch our loved one wondering when this storm will be over only to start watching for the next to appear. It can also be a time of warmth as we sit around the fire basking in the fact that the situation is not so volatile as it was in the Fall. We reminisce and tell stories of the Spring and Summer, and in our minds, we know that this is not supposed to be how Winter should be. We long for the warmth of Summer and even find somewhere deep within ourselves a glimmer of hope that maybe, just maybe a miracle can happen, and Summer will suddenly burst into our lives again.
That warm glow of hope still resides in me, and I hope that no matter what season you find yourself in, that Summer will find you and that when it is Winter for you, it comes at the time that it should.