Worst Days Looking Forward???

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.

Judging Others Grief or Maybe Not

Let me start by saying I've lost another person whom I love. In my thirty plus years, I've lost great grandparents, grandparents, uncles, aunts, cousins, friends, friends who were like grandparents and an unborn child. I have finally come to the conclusion that no two people grieve the same way. I have had this realization while reflecting on my own varied displays and ways of dealing with grief. Each time I lose a loved one my behaviors are different or the ordering of my series of behaviors is different.

I always cry at some point. When I learn of the death; the months leading to the death; when I experienced the miscarriage; what would be their birthday if they weren't in Heaven; when I'm feeling like no one understands me and miss the way they always got me, it's inevitable for me the tears always come.

At first, I thought this time my lack of tears at the funeral was because of my guilt for not being there to help care and nurture my loved one, but I was wrong. I had witnessed others physical and mental decline as they became ready to leave this world and I could but do it this time. Yes, you may call me selfish, but I'm the one that must decide what my mental health status will be. I decided that I would not force myself to see another loved one slipping away while it plunged me into a depression that I would hide from my family and friends. Hiding the depression just causes me to lash out at the slightest transgressions because I am emotionally distraught and no one realizes. Even the man I share my life with and my children do not know because I choose not to tell them. They see me cry when most do not, but I do not tell them the depth of my despair. Only a glimpse into the cause of my anguish that this time will be much shorter. In the past, I offered care; I sat at bedsides; I laughed with the one suffering to ease their pain. And it hurt me immensely to see their pain and be unable to make them better for months and even years during the decline. So, not this time. I chose me and my emotional well being over the one who had cared for me and helped make me who I am. I regret not being there, but I know myself and my immediate family are much happier because I kept at a distance.

Then I tried to blame it on the way I was raised. "Be strong. Don't cry. Be brave enough to take everything on by yourself." I cried as a little girl. I cried as a teen. I cry as an adult. In the last five years, I've probably quadrupled the number of people that have seen or heard me cry. I'd guess that other than family members fewer than fifteen people have witnessed my tears (Interestingly, I don't count people that may have seen me cry at other funerals. These are groups of mourners and I doubt they notice my tears.). The first time I recall my dad crying was when I experienced what I call sexual violation through voyeurism in a public restroom. Though I was physically unharmed and just made to show my body it rocked my dad to his core. It changed me too, in ways that I wouldn't realize until I had children of my own. Maybe I'll visit that another day. My mother cried at funerals and when she felt threatened. Surely, they were the cause of my lack of tears, but I looked over at my older brother and saw his tears. Then felt his shoulders heave up and down with his sobs as I rubbed his back in an attempt to comfort him. I realized he grew up in the same home with the same emotional displays from our parents and that it must be something wrong with me.

I looked around the room and noticed some of my cousins weren't crying. Ones that spent countless hours on the lap of our loved one many more than I had. Ones that spent their nights at sleepovers through out the years with them. Then and only then did I realize that there was nothing wrong with me, nor with them. I don't know if they spent every moment of solitude of the days after the death and before the final send off in tears as I had (my poor car and bathroom at home would have horrible soundtracks of my sobs if they had recording devices and replayed them). And if they didn't, I realized that was okay too.

I guess there is no real point to this entry other than my own self examination and journey, but it is now memorialized on the internet for others to find. Who knows, may be it will help someone heal or realize they're not the only one with dry cheeks at a funeral.