January 16, 2014. We talk around it and around it as we discuss appointments and treatments and the prognosis from the latest appointment about treatments.
But we never say it.
In the middle of an update that includes body parts and surgery terms my mom pauses, “Ever since we found out she…” Her sentence left hanging there in a pause and heavy cellular air, “Since she was diagnosed…”
Yes. Avert your sentence from landing on the one word with more weight than we know if we can carry. Pause and re-route so you don’t jump off the cliff into the abyss of fear and the unknown and be careful not to say it out loud because that means it’s real.
A mystery mass found during a routine test is obscure and emotionless. It becomes only slightly more personal after that first appointment where the doctor says they have a lot to figure out. Less questionable is its offense as the tests come back. Irrefutable when the appointments turn in to plans that include chemo and surgery and more chemo. It has a name when the prescription medicine that prepares your body for radiation starts…today.
I don’t know why that word is so damn hard to say out loud. Maybe because it holds so much association with human frailty as it mocks us. Maybe because it exists only in the worse case scenario of our thoughts about the future and our loved ones. Maybe because it signifies that there really is much we don’t know and it slaps us with the realization that the details of the future and this life is not ours to determine.
It challenges our invincibility, our perspective, our assumptions on control and death and choices. It opens up doors to fears that we didn’t know were residing and strange thoughts that we wish had no place wandering around in our heads. I am surprised as I make a vow to contemplate the eternity of a soul separate from the body so that I hurt less when bodies fail. I am surprised when I take in information with little emotion and respond with logical questions. I am surprised when it hits me all the sudden in the middle of the night and I fight tears that simply mean I don’t know what is going to happen.
It is hard to be blunt and honest in this situation. While I desperately want the clearest and most accurate information, I also want to be protected from having to think about the ways things could derail.
Here is what I know: I love my family desperately. As my grandmother enters the first week of chemotherapy next week I will wish I could be there, but understand that I cannot. I will make plans to be home for the surgery and I will risk my job in doing so. I will hate certain days and certain moments and I will love others. I will try to get her to write that god-damn book about her life that we have been begging for, but I won’t push too hard because I don’t want to give the impression that time may be shorter than we would like. I will try hard to focus on the positive, on her fortitude and tenacity and the fact that many tests have come back ideal for the situation.
I might not even say the word out loud, my own act of rebellion. I might not tell many people what I am dealing with or how heavily it weighs on me, my own act of defiance. I might not understand the weight that we all carry until the weight is lifted over time, over good news, over healing, over life.
Update: This post was really hard for me to publish. I wrote it in January, left it sitting there until March, published it one night, woke up in the middle of the night and took it down, and am now republishing it. Here are my thoughts: This is really personal. It is my PERSONAL reaction to news from back home. It may sound more or less dramatic, fearful, hopeful than other members of my family are processing the same information. It was the beginning of a journey that had a lot of questions and uncertainty and I don’t operate well with uncertainty. On March 6, 2014 my grandmother had her final chemo and radiation treatment and is now about to recuperate and heal for a few weeks. I am so thankful – the word “joy” comes to mind as I realize the beauty of passing through the last six weeks. Armed with that information and a desire to connect to people that are processing their own uncertainty – for whatever reason – I decided to let this back into the world. At least for now.
Will you tell me about your reaction to uncertainty? Do you thrive on the unknown or do you wonder what will happen? Have you ever gotten news from far away that you just weren’t sure what to do with and had a hard time talking about?