Fight or Flight

Nausea. Pit in my stomach. Heart in my throat. Shaking. Heart palpitations. Headache. Adrenaline pumping. Edge of my seat. Sweating. Muscles tighten. This is what happens when the body is in a fight or flight state. A state I am in much of the time. Constantly on alert. Danger is all around me. It’s impossible to calm this reaction when anything can trigger that grief wave to come crashing over me. Danger is lurking in every corner, in every possible interaction, in any song that may come on the radio, in any book. Nothing is safe. Imagine being in this state. Now imagine being in this state more often than not. Sounds exhausting, right? It is. It is draining, debilitating. It’s why I would rather stay home. Home is safer. I have control at home. I have no control anywhere else.

Now imagine feeling like this but then being in a situation that heightens your response even more. It’s horrendous. Today I was with someone when he met with a radiation oncologist to discuss treatment options. I have taken him to several appointments but previous appointments did not trigger me as I pretty much stayed in the waiting room. But this one. This one brought me back. Brought me back to the radiation planning and radiation appointments with Ariella. I felt like I was physically back there, discussing my daughter, with all the hopes and fears that went along with it. Though the situations are very different, this appointment was not so different. We discussed the preparation leading up to radiation and what the schedule would look like. Just like we did at Ariella’s consult. Ariella’s radiation appointments weren’t so bad. She did have some nasty side effects but she managed to have fun at her appointments. She liked the techs and she was always her goofy self when changing and wearing her gown. She laughed quite a bit and made me laugh too during those appointments. I wish. I wish that’s where I was today. Discussing Ariella’s radiation plan. Because we knew Ewing’s responds extremely well to radiation. We just knew radiation was going to kill those tumors. We were so hopeful and knew that with the radiation we were likely nearing the end of the next phase of treatment. And radiation worked. Scans following radiation showed no evidence of active disease. All I could think about at this appointment was how happy Ariella was even during her radiation. How she could make any situation fun, how lively and exuberant she was, how hopeful she was. That she was alive with no idea what was coming. It was everything I could do to keep from screaming, to keep from running out of the room, to keep from crying loud, ugly tears. I couldn’t wait to get out of there.

I’m sure others may think I’m crazy for doing this again. Going to oncologist appointments, reliving my nightmare. But I can’t avoid it. Not in this situation. And I’m generally glad to do it. I know I serve as a comfort to this person and he repeatedly assures me that if it’s too much I can stop anytime. But life doesn’t work that way. It’s unfair that cancer has touched us again so soon but we do what we have to for the people that need us. And helping him gives me a sense of purpose and meaning which I have pretty much otherwise lost. Today’s appointment just happened to be especially hard.

Surprisingly to me I have not lost my survival instinct. As I’ve mentioned before I no longer fear death and in fact I would welcome death with open arms. I frequently think that if I was in a situation that could become dangerous I would not try to avoid it. But today I had to slam on my breaks to avoid hitting a deer. Maybe it was because I had someone in the car with me. Maybe it’s because while I’m not afraid of dying I am afraid of being in pain. Maybe it was just a reflex. I know this is a very uncomfortable subject but it is a truth among bereaved parents. I have heard from many, many parents who have all said they want to die. Most have said they would not commit suicide but I would say a good number have a death wish. Though some have said that they take comfort in knowing suicide is always an option “tomorrow”. That’s how they get through each day. There are articles and books discussing this taboo subject. It can’t be ignored. Many bereaved parents, myself included, feel like life is no longer worth living. And the pain we have to endure for another lifetime. Why should we go on living a life full of anguish and torment when we have no reason to live anymore? Telling me I’m loved and important to others does not make a difference. Because feeling unloved has nothing to do with my reasons for wanting to leave this world. I know I’m loved and I know others would be in pain if I died. But to me now everything is meaningless. I don’t want to live without my daughter. I don’t want to live with this never ending heartache, despair, and longing. Now matter how loved and supported I am my reason for being is gone and the pain will never go away. That is why I am not afraid to die. That is why I wish my life would end.

I promised myself that I would blog my truth. I keep to myself a good bit, I’m not good at small talk, and I generally do not feel comfortable talking about how I’m feeling, especially when reaching into the darkest parts of my soul. But I need for others to know how I’m feeling, to know I’m not okay, and that includes sharing the ugliest of truths. And I also hope by sharing my darkest of thoughts other parents in similar situations will take comfort in realizing they are not alone.