I’ve done a lot of journaling today exploring my prompt: What is it like to be me in the world today? Honestly, it’s kind of a mess. I just got over the 24-hour stomach flu. It was wicked. I could hardly get out of bed yesterday except to throw up. I had R most of the day and he was a free-range toddler, playing with toys and watching movies. Around 5 pm he asked me for a hot dog and a shake. I could hardly summon the energy to get out of bed to defrost a hot dog and make a protein shake. I understand that this is not the most balanced dinner but I didn’t have the energy to argue about food choices. I fixed him his requested items without throwing up in the process (win!) and crawled back into bed.
I know that stomach bugs happen and they are nothing to get too emotional about, but this was very emotional for me. It was my first major sick day as a solo parent. It was my first experience with wanting to will myself off of the bed and into the kitchen to prepare something really simple for my son, and struggling, deeply, to do it.
This, mixed with my upcoming trip to NIH for cancer follow-up, brought up some feelings for me. I was diagnosed with cancer in 2005. That year I had two laparotomies to excise three tumors and a third surgery to excise a tumor from my left neck. The two laparotomies were terrible surgeries. In the first, I was cut from about four inches above my belly button to about two inches below. The tumor was located behind my pancreas, which is at the very back of the abdominal cavity. So to get to it, they had to remove/move all of the overlying internal organs. This surgery was my most painful.
I remember, distinctly, sitting up on the edge of the bed and feeling like the entire contents of my abdominal cavity might spill out onto the floor. It was in a private hospital and because of insurance and need of beds, etc., they wanted to remove my epidural pain relief after, I think, three days. (It’s hard to remember time in that state.) To do this, they transitioned me to oral pain medication, which made me vomit. Vomiting was extremely painful given what had just been done to my abdomen. I remember going through the process of eating—>pain pills—>vomiting over and over again. I remember lying in the hospital bed, trying not to focus on the pain but having it be so unrelenting that I could think of nothing else. I made it through somehow. I walked across the stage at my college graduation one week after being discharged from the hospital.
The second surgery was a bigger wound. This time the cut extended about six inches below my belly button. I remember it being less painful. I’m not sure if it actually was or if I was simply better prepared for the pain this time. I had this surgery at the National Institutes of Health and they were more lenient on how long one could keep an epidural so I think I had it for five days. But by the fifth day I had developed a cerebrospinal fluid (CSF) leak. I remember it was a Sunday because there was no anesthesiologist on site to help me right away. When you have a CSF leak it causes a headache. This is because your brain is normally floating in CSF, but when the tank runs low, your brain literally rests on your skull, which is painful—very painful. I remember sitting up on the edge of the bed to use the restroom. The nurse was right beside me and I rested my head against her leg for a moment, the way a child does while standing next to his mom, because the pain was so intense. Thankfully the on-call anesthesiologist came in and performed a blood patch, which is where they put some blood in the location where the CSF is leaking that clots and effectively plugs the hole.
My third surgery was relatively easy. A four-inch incision in my neck was pretty doable compared to the first two. I did sound like Minnie Mouse for a few months afterward. Surgery is so strange.
So today I’ve been processing emotion. Feeling how terrible it is to not be able to care for your child when you want to so badly. Being reminded of how devastating these physical ailments can be. Remembering how weakened I was after surgery. What might that be like now that I have R to take care of? It’s terrifying.
And then I came across this post from Elizabeth Gilbert’s Instagram:
Here is what I have learned about Grief, though.
I have learned that Grief is a force of energy that cannot be controlled or predicted. It comes and goes on its own schedule. Grief does not obey your plans, or your wishes. Grief will do whatever it wants to you, whenever it wants to. In that regard, Grief has a lot in common with Love.
The only way that I can “handle” Grief, then, is the same way that I “handle” Love — by not “handling” it. By bowing down before its power, in complete humility.
When Grief comes to visit me, it’s like being visited by a tsunami. I am given just enough warning to say, “Oh my god, this is happening RIGHT NOW,” and then I drop to the floor on my knees and let it rock me. How do you survive the tsunami of Grief? By being willing to experience it, without resistance.
The conversation of Grief, then, is one of prayer-and-response.
Grief says to me: “You will never love anyone the way you loved Rayya.” And I reply: “I am willing for that to be true.” Grief says: “She’s gone, and she’s never coming back.” I reply: “I am willing for that to be true.” Grief says: “You will never hear that laugh again.” I say: “I am willing.” Grief says, “You will never smell her skin again.” I get down on the floor on my fucking knees, and — and through my sheets of tears — I say, “I AM WILLING.” This is the job of the living — to be willing to bow down before EVERYTHING that is bigger than you. And nearly everything in this world is bigger than you.
I love her portrayal of the conversation with grief. Her unremitting response, “I am willing.” I am reminded that this is what living really means to me. It is taking what comes and saying, “I am willing.” It is allowing the grief AND the love to pass through me. It is knowing that love and grief are things that cannot be handled. It is understanding that one is not available without the other. It is staying open through all of it.
I am willing.
