"Maybe you have to let go of who you were to become who you'll be."- Carrie Bradshaw
This is definitely an update post, as I haven't done much of anything in a while. Lately, there's been a lot going on in my life and the lives of those I care about.
As many of you know, I am a member of the NYA and in the last few months many of my friends have lost a parent to Huntington's disease... Even being so far from them all and not knowing their loved ones personally, I still feel an uneasiness, a sadness deep within my heart and soul. I feel very lost and afraid for my own family when it comes to HD. As the past four months have been the end of lifelong battles for so many, could my family be touched by this pain next? My dad has been extremely restless these last couple weeks, still eating but with more difficulty and we're having to get creative with shakes, and not nearly as "talkative" as he was. I look in his eyes and see much exhaustion, tears and fear. I too am afraid... Growing up in an HD family and having prepared myself the last few years for what is inevitable, I can't help but realize how scared I am to really lose my dad...
My brother, Bryan, has been living in a group home since October and has been doing very well there. I find myself always feeling bad about his situation. I do wish he were home and we could be closer, but he behavior is still erratic and unpredictable. We went to visit him for Easter at his caregiver's home, and she welcomed us with open arms. He was happy to see us and we were happy to get to spend time with him. Bryan has difficulty walking, talking and eating, but still able to do much on his own with supervision. Perhaps one day he will return home with us, but for now the arrangement we have is working much better than what we had before.
I had started working part time for a funeral home in the Fall, and in January I received another part time position working for a behavioral health and mental health counseling facility in the town where I live. I am ten minutes from home in case something were to happen and my position at the front desk uses of a lot of the skills I had learned from previous jobs, but also with HD. I have recently become a property owner, and hope in the next several months to have a new home of my own next to my family.
For the past several months I have been working hard on the NYA and Convention planning, but even as busy as it has kept me I feel a large void in my life... I fill my time with projects, and not people. I often wonder, no matter how much I love the NYA, if I've gotten in too deep? Maybe it is my survivor's guilt? Or perhaps my own desperate need for approval, but sometimes I feel like there is so much potential if only I were not a part of it, like I am too consumed. I also feel like I don't have much in the way of close friendships, everyone I know is merely an acquaintance. There is no deeper connection with anyone, no matter the battle we've faced "together".
I have felt very lost lately, too many deaths, too many changes, too much going on and also too much not happening. Shouldn't I feel something different? Where is the support for the person trying to help everyone else, where is the care for the caregiver, the overachiever, the negative for HD person that feels lost in a world consumed by HD?
