When a well meaning, but ignorant bystander learns of the death of a child who has lived a life of mental and physical trauma, and comments that he is in a better place now; he is an HD angel, I will not respond that the comment is the most amazing blather. A bystander, who has never witnessed the destruction spiraling downward through generations of his family, cannot know the pain. I will accept his good intent.
I cannot tell the bystander that a child is dead who should be just beginning his life and that his death had taken a part of each person who loved him.
I have often been told that my family lives a positive life with HD. It is a paradoxical statement, but I think it is true. We are fortunate that we earn our living from the company that Tony started so many years and so many personalities ago. There is no one to discharge him summarily with no concern for his well-being. Tony enjoys the challenge and thrives on little accomplishments, and has earned the admiration of everyone he encounters. I tell myself that I must never allow him to hide away from life the way his mother was hidden away. Our sons work there and Tony takes great satisfaction in their accomplishments for his company. And we are fortunate that we have a close family and that our sons respect their father, are sensitive to him, and hold his heart, his pride and his soul with gentle hands.
But sometimes, a fog of black resentment fills my room and I cannot breathe. It usually comes when I least expect it. It comes when a neighbor, whose most serious and risky challenge in life is which dress to wear to which party, calls to ask that I keep her pool plants over the winter in my greenhouse. I listen to her nonsensical blabbering about the cost to keep the pool pretty and I tell myself that I will not shout out my resentment at her request. I will not tell her about the challenges of a caregiver or that there is no time in my schedule of responsibilities to water her plants. Can’t she see that? I will not tell her that I must tell Tony that it is no longer safe for him to negotiate the stairs to his television room. I will not explain to her that it must be done in a way which will not strip away his independence and self worth. I will not tell her of the little battles that I fight nor of the multi-faceted totality of my being, the anger, the pride, the frustration, the admiration, that is who I am today.
And I ask myself would I trade places with the shallow woman who becomes horrified at an uneven summer tan. I think not. And I let it go.
When Tony joyously tells me of an event that happened only in his imagination, I will not contradict him except for his own safety. I will listen attentively and remember the young man who, with confidence and enthusiasm, told me about the dreams that he had for the future. I will remember that he always took my hand when I was afraid and taught me to be strong. I will remember the young man who shared a rare, wild orchid plant growing on a wooded mountain side with his son and who taught his sons to sail, with only wind power, on beautiful lakes in the Ozarks. He taught his sons to be the best that they could be and to follow their dreams and their hearts.
I will not be prideful and will accept help when I am not strong enough and Tony is not stable enough, even if the offer comes from a stranger. I will be gracious, in keeping with my southern upbringing. And I will remember that the kind outnumber the unkind and not knowing what to do is the only reason most people don’t reach out to help. I will tell myself not to lose faith in the goodness and benevolence of mankind.
I will tell myself many things. Thoughts precede emotions. One of the most powerful tools we have to control our attitudes and personality is self-talk. If a student tells himself that he is not good at mathematics, he will be instilled with fear. But if he can learn to control his inner dialogue he can begin to control his emotions and reactions and thus his life.
Positive self talk is a tool which I will use to help me to become a better caregiver. Is it magic? Of course not. I will still be annoyed or confused or frustrated. It will not enable me to wiggle my nose and turn my destiny. I will still have to fight the same fights but it may help me to put a bounce in my step when I am too tired to take the step. It may help me to do a better job, or at least an adequate job, for both myself and for Tony.
I will use it to help control anger. Anger is a normal, usually healthy human emotion and can vary in intensity from a mild irritation to intense rage. Physical changes occur during periods of anger, heart rates and blood pressure go up as does adrenaline. The instinctive way to express anger is with aggression, a necessary protection to our survival. Anger can be caused by both external and internal events. A traffic jam is an external event which may cause aggression or anger and a deep resentment of a personal situation is an internal event which causes a destructive anger. I caution myself to watch for the signs of anger in order that I can let it go so that I can live a more rewarding and useful life.
I ran head on to an external source of my anger yesterday which caused a rage within me reminiscent of my Irish grandmother whose fiery black eyes could control a misbehaving grandchild from across a crowded room. Tony and I shopped at our local Super Center and he roamed the isles like a five year old on the week before Christmas. With only one more errand, I was ready to go, but Tony insisted that he needed a haircut. I dropped him off at the shop and returned for him after my errand. I saw instantly when he came out of the shop that the day had been too much for him and that he was too fatigued. He staggered from one post of the covered walkway to the next in a half running gait, clinging to each post for temporary balance until he was able to stagger to the next post. Such dramatic chorea happens when he becomes overly tired.
He caught the attention of two women parked in the car next to me. They began to laugh and point at the man, obviously intoxicated and unable to walk. Tony made his way to the space between our two cars and I vacillated between my growing anger with the women and their ridicule and my concern for Tony. He staggered into my car an then into her car. He opened my door carefully to avoid hitting the woman’s car and she rolled down her window. “Do you want me to back out and give you more room, honey?” Both women laughed, a loud high pitched cackle. It was not a question based in kindness but one of ridicule at the situation she did not understand.
I heard my anger in my voice and the staccato words being hurled at the woman. A look of total astonishment and perhaps a little fear came over the woman’s face. She had not expected such harsh retaliation for her brief moments of merriment. She rolled up her window, quickly backed out of the space and left the parking lot. Tony, laughing, pulled on his seat belt. “Why did you call that woman a jerk?” And I shot back, “because she is.”
We said no more about it, but he knew that he had a fierce gladiator to defend him and his right to dignity. And I told myself that I will always defend him.
I did not hold on to the anger and it was gone as quickly as the woman. By holding on to the anger, I hurt only myself. I could not punish her; she did not know me and had little concern for my opinion of her. I tell myself that I must always let go of the big anger or the smaller irritations. It is a method of survival and happiness.
When I cry, I will cry alone. And the tears will rejuvenate my resolve to do this task without the addiction of self pity. I will tell myself that self pity is a negative emotion which comes when I feel helpless and unable to cope. Helen Keller, who had great reason for self pity said, “Self pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” She was not content to be frozen in a soundless world of darkness and self pity. Neither am I. Like Keller, there will be days when I want to sit down and quit, days when the road is too rocky, days when the enormity of the task is too much for me, days when I would be content to add my self pity to the pity of others observing my plight. I will tell myself that I must drag myself to my feet and go on as best I can without self pity.
Self pity cannot exist without self doubt. Our negative emotions are not harmful to others, only to ourselves. We must let go. I will remember Nelson Mandela who described how he forgave, without self pity, those who had imprisoned him for 27 years, “I had to let it go. They took the best years of my life…they destroyed my marriage. They abused me physically and mentally. They could take everything except my heart and mind. Those things I would have to give away and I decided not to give them away.”
I will cope. Huntington’s Disease has taken so much away from my family, but it cannot take my heart and mind and, like Mandela, I will not give those away freely. As long as I hold on to negative emotions, they are in control of me and prevent my growing and living a happy life. I will tell myself to let go. My life will never be one of greatness as the lives of Keller and Mandela, but I tell myself that I must strive each day to do my best. And I know, without telling myself, that this is where I belong and that I could be in no other place.