So three months later… here I am writing again.
As I said, my life is crazy! I realize that I have become a human doing rather than a human being in order to survive my life. Caring for my husband who can no longer walk and who struggles every day to feed himself, plus my almost four year old son, plus working a full time job and maintaining a household, plus having no family in the area… I’m surviving.
My To Do list has always been the way for me to master my life. It keeps me organized, sane, in control, sort of… or at lest the illusion of control. Plus, I’m afraid to stop. If I stop and think about any of this for any length of time, I will crawl in my bed, pull the covers up and not come out again. So I keep doing, rather than being, but it’s wearing me down. Often my focus on doing keeps me from laughing with my son, or turns my husband into a burden rather than someone I love, or leads me to prefer washing the dishes rather than sitting with my family and watching TV.
But I need rest. I had been good at keeping yoga and meditation in my life and I need to get back to that, I’m not sure where I lost it. Probably somewhere between getting a wheelchair and wheel chair van and scheduling my husband’s feeding tube placement surgery and trying to potty train my son. (so insane. what’s really weird is watching my son’s development grow and see that he is gaining all of the abilities my husband is losing. what in the world is up with that?!) I know that if I can keep meditation and yoga as a foundation it will give me more energy, it’s just hard to convince yourself of that when your alarm goes off at 5 a.m. and all you want to do is sleep… and forget for a little while longer that this has become your life.
I guess that is what is hardest, that my life has been hijacked by this horrible disease called ALS. I find myself grappling to maintain some semblance of who I am. I don’t want to lose myself in this. When I’m really sad I listen to Sara Bareilles’ song “Used to Be Mine” over and over again which talks about a woman who has lost her identity. (huge SB fan btws) This is why I started taking music lessons even though I have no time or money to do so and why I so desperately want to blog and to love my job and have friends, I don’t want to lose me in this. As much as I don’t want my husband to die, I want to live.
So, again, not sure if anyone will read this, but I’m putting it out there. I hope to write again soon because this is me and my story needs to be told.