It’s always there. Sometimes a whisper. Sometimes a touch. Sometimes a loud din that is hard to hear beyond. A hum. A bright overpowering visual. A darkening of my perspective so that it is hard to distinguish figures. But, always there.
I survey my body from my mind. Sometimes I touch and push on the area where I believe it to be. Is it worse? Is it the same? Is it better? Is the medicine even real? Are the scans? Do they matter? Do I?
It lives underneath the laughter, the silence. When I speak, when I am mute. It causes me to be mute at times. It takes me away from other events that really matter. Events of joy, grief, celebration, mourning. I’m not fully there. My constant companion communicates with me and when I request it to stop, it takes more of me away so I try to ignore. I laugh beyond and I mourn in spite of.
I can’t get upset about a person’s behavior. I am alive. So that is why I am not upset at this slight, this unkind word that I have heard about. I am not fully with all of you. My unwelcome passenger sometimes overwhelms your words and laughter and demands my attention when social problems arise. I am not completely a part of them and now can’t fully understand.
I used to. I remember that girl. She laughed too loudly. She cried readily but recovered and then felt better for it. That was a girl traveling without this unwelcome passenger. She didn’t have the distractions, the unknown inside of her trying to take her down. She didn’t know. She was free. Her body was hers.
I don’t tell people. I worry they will think me crazy. Over reactive. Self-consumed. Socially inept. Strange. Different. Other. Scary. So I feel and hear my parasite and ignore as best I can. But so persistent. Relentless. Humming and then a louder din. I’m never sure how it will present but I know it will. In some form that is not within my power to manage.
The topics are counter to the outside world. They are dark. Death. Defeat. Pain. Loss. Death. Fear. Uncertainty. Blurs. Voids. Death.
People are laughing. So I will laugh. They are talking. So I will try to listen. They are looking at their phones and laughing. So I ask to see. I don’t know what it is. But they laugh. So I laugh. I laugh harder because they like it when I laugh. They laugh at me laughing. When do I stop laughing? Are they laughing at the phone image or at me? I’m not sure. I’ll smile. I’ll chuckle. I will de-escalate slowly so that it’s not discernible.
The hum is here. I hear it. I feel it. It’s on my right side. It’s in my liver. Has it moved? Is it bigger? Has it gone to other areas? Don’t fear. They’ll see. They’ll think you’re crazy. They won’t like you.
What time is it? What else is there to do? Schedule? Yes, schedule. What’s next?
The hum is louder. It is trying to take me down. It is trying to make me fall into the pit. I see the pit. I’ve been there. I got out but I don’t know how. Maybe this time I wouldn’t get out. It would hold me. I would become one with the pit. Don’t look. Try to walk away. Try to run. It’s behind me. I made it. This time.
I am inside myself. You are not with me. You can’t be. You say you want to join me but I know you don’t. I don’t want you to. I don’t wish you to understand this. Yet it keeps me a stranger because you don’t and can’t. It has made me strange. I know it. I feel it. I see you seeing me with my parasite. Like me you ignore. But I see that when you ignore, you succeed. It’s my parasite. So I don’t. I have to allow it. Last time they took the parasite. This time, it has to stay. And it wants all of me. It has teeth and it bares them when I least expect it.
I tried to be nice to my passenger. That’s when I first went into the pit. When I am nice to my passenger, it shows me the pit and laughs. Anger doesn’t work. That only takes me to endless paths that lead nowhere. Not as scary as the pit but isolating. I am not with people when I am on the nowhere paths.
Indifference is the best. It brings me to the world beyond my parasitic passenger. The problem with indifference is you can’t try for it. If you try to be indifferent you go to a path or a pit. Indifference has to just happen. When you notice it, it’s no longer indifference. It’s a goal but a goal I can’t work toward. I have to hope that it just happens and somehow not notice it too much when it does.
I want to be there, not here. But I am both and not fully there. I usually am not. I’m sorry. It is who I have become. I am me with my parasite. All the time. I want to worry about what you worry about. I can’t fully. I used to. Remember?
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.