There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up. This past week has been full of them. I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia. From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior. Then when it empties it is like having a baby pass from my stomach to my small intestine. From there it can sit for days…until it eventually moves into my large intestine. It just grows until my abdomen is tight and painful. I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long. I have dealt with this for six weeks. I had a seizure and I haven’t been quite right every since.
I have lost close to 20lbs, but have managed to add some weight on. I don’t want to be sick-thin. I am having trouble taking my vitamins and it my energy levels. I have calmed down my level of activity at PT and Dance because I have been having issues and falling.
All of this seems unreal to me as I look back at what I just wrote. It feels like last week I was living a normal life and now all of that is gone. In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time. Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears. I always wonder if I will recognize my daughter in ten years. Will she stay twelve in my head forever? Seems like I saw her yesterday but she has been gone for almost a week. I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life. I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.
Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues. Every night when I go to bed, I pray that I wake up to something different…just not worse.
This is my reality that I have to accept again every morning.