It has been two months since Daddy took his life. I constantly acknowledge how his life was cut short internally and aloud to others, but somehow writing that simple sentence has brought with it a cascade of emotions. I miss him. I know I should have seen him more. Picked up the phone more. Loved him harder, so he would understand I still needed him. I still need him.
I know that I took him for granted in my constant rush and hectic life as an adult. I should not have. I would do most anything to have him back. To kiss his cheek. To hold his hand. To tell him I love him. To tell him what his crazy grandsons have been up to lately. To cut his hair and make a mohawk (temporarily). To laugh with him. To watch his eyes light up. I can no longer have more of those moments. In my hustle and bustle of work and parenting, I missed giving him his final haircut. Something I did not realize I had cherished over the last two years. He wrote, "October 17, 2018 haircut" in his notebook, but I did not give him that haircut as that was my busiest time of year at work. My mother did it instead and that haunts me mercilessly.
I truly believe my busyness coupled with our disease (genetic form of ataxia. He was symptomatic due to age, but my brother and I are not. ) is why he is gone. Do I understand why he did not want to continue his downward decline of mobility and speech? Yes. Do I wish that he had talked to me, us, about it? Yes. Do I love him less because of his choice? No. Am I angry at my father? Yes. Why? Because I know at some point I too will weigh my own quality of life versus the quality of life my life brings to my family and friends. Also, his death led me to promise my child that I would not make the same choice as my father. Yet, I know I might (years down the road when our disease has taken the ability to do the things I love away). While it will not be a decision on my own, in the night with a gun. I do know, as I often tell my husband, that I would like to be able to choose a dignified death when I am ready. To me as of now, that remains choosing medical assistance at a time when my life still resembles my life and not one bound by immobility and speech that no one understands.
That is something most do not understand. You do not get to be you when you can no longer do the things you love that make you, you. I long for a way to extend my full years of life. Simultaneously, I am frustrated that the medical advancements we were promised in 2004 are not here. I made my decision to bring my own children into this world based on those advancements and can only pray that they are available soon. For my brother. For my boys. For me.
People do not understand why I am the person I have become. Most do not know that I know what lies ahead for my life and how bleak it seems. While I do my best to trust God, I know my outlook on the future is grim. I only hope when I experience the psychiatric changes (both my grandmother and father experienced extreme paranoia and explosive anger) that I can maintain some semblance of myself and my thoughts of positivity through darkness prevail.
All of this brings me to my goal for the immediate future. Get back to me, the old me despite my future prognosis. That starts with my health, because I believe that will be found to be vital to slowing the physical advancement of our ataxia.
Am I going to eat only whole, unprocessed foods? No. Am I going to cut the foods I love, sweets and cheeses, out of my diet? Hell no! Am I going to cut my portions on indulgences? Yes. Am I going to increase my activity level? Yes. Increase my water intake? Yes. Increase my gratitude for the life I have been given? Yes. I am going to get back to the young woman that answered her father's questioning of himself- what he had unknowingly bestowed upon his children with, "What disease you have given me does not make my life not worth living. Instead it makes it more worth living. I would rather have 40 or 50 great years knowing what lies ahead than no life at all. Daddy, please don't regret giving me life, because I am glad to have a life to live." Those wise words at nineteen are not reflected well at thirty-four. I am going to do my best to get back to that wise and grateful mindset.
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