I’m tired…ALS is exhausting. In so many ways. ALS doesn’t believe in breaks. It has no sympathy. It cuts no slack. My favorite line from the movie ‘The Terminator’ says it all. “It can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity,or remorse or fear. And it absolutely will not stop… EVER! Until you are dead. ” So, yeah, I think most would agree that this disease is pretty much the fucking Terminator.
This disease is rivaled by few others. It kicks your ass every which way. It will turn the person who thinks they are strong into a weakened heap. But it can also bring out a strength you would have never imagined. Even then , it is a constant drain. Leeching your soul.
I am tired. Tired of the steady spiral downward. The ever growing loss of physical faculties. Vitality leaving my body. Tired of losing any sense of independence. I have to rely heavily on others for daily activities. And sadly , this weight falls largely upon the shoulders of my wife. I understand that that is the hand we are dealt , but there is also very little help offered.
I am tired of the dismissive attitude of the ones we hoped would step up. I am tired of trying to drop subtle hints that we are hoping for concern. Even if it is not genuine. I am tired of the excuses. Either it is important to you or not. Sadly, this story is played out too often for so many. I grow tired of the in consideration of those who cannot understand the difficulties we face. Sure, everyone is not living this nightmare, but common sense should prevail.
I am tired of putting myself out there to fall on mostly deaf ears. Society these days is all “me”. Most people are fickle and pretentious. I grow tired of the show. I try to open myself up on a deeper level to others. But bullshit reigns supreme and shallow is the word of the day.
I am tired in this fight. The fact is most people just don’t care. It is not under their roof. Out of sight ,out of mind. This starts at the highest levels. The strata,whose purpose is to lead in this fight is often self serving. Bureaucracies don’t budge because,well frankly they don’t have to. I am tired of the complacency riddled throughout our community. The refusal to come together as a united front. Far too many “sea lawyers”. Self anointed experts with all the answers.
I am tired of looking at the horizon for hope that is still so far out of reach. But all of this is why I have to fight on. None of this will change if I decide to throw in the towel. This disease exposes our true nature. It kicks me when I am up and has no shame in kicking me when I am down. I will continue my fight. I just need to let out some steam.