Compartmentalizing

Yesterday, someone asked me if it was ok to share a Facebook post I made with an update about my daughter and a link to a research fundraiser. I don't post there typically until after I've mentally processed everything and feel like I can handle all the comments and messages. So, yes, it's fine. I made my page a digital creator page so that people could follow me if they wanted. My main thought was so that parents in the brain cancer groups I'm in could see more about treatments and disease progression. It has been really helpful for me to creep on others pages and just see where they found success and where they didn't. 

I thought about making a page specifically for medical updates as so many people do. But, I also don't want a lot of strangers following our "cancer journey." I heard it called emotional tourism when people get so caught up in strangers' lives and drama and illnesses, and it felt like a really apt term. I'm definitely a page creeper and have for sure done my fair share of emotional tourism, but I don't want to put myself in that position. It feels a bit gross on this side of it. 

So, even though some of my posts are public, I am still trying to think about what I am willing to share there and what I'm not. The private side of me doesn't understand the people who constantly post every thing about illnesses with pictures of themselves or their kids in their most vulnerable states. But I also understand that this shit is hard and sometimes social media is a place people can find support and community.

Anyway, my point is that I don't post on Facebook to process, but to let people know important information in one swoop and to hopefully get some good out of all this. Research funding, letter writing, whatever. 

In general, I am working on getting more distance from social media and compartmentalizing all of these emotions I have so that I can actually do work and function day to day. Last week a coworker caught me crying in my office. She sat down and we cried together about our issues. I guess that's what happens when you work with a lot of women. But, she also recommended working on compartmentalizing some. 

That same coworker was with me the week before when I was cornered in an elevator by another well meaning coworker asking how my daughter was doing. Everything was still a bit raw from a recent doctor's appointment, and I had to awkwardly extricate myself from the conversation. I later sent an email apologizing for being weird and explaining more, but ugh. 

A few months ago, a woman at work that I've talked to once came up to me at the end of a campus-wide meeting saying she just found out about my situation and asking if she could pray for us with her church. She later delivered a blanket and a prayer quilt square. It was very kind, but also, a college wide meeting is not the place to ask me about my kid's cancer. 

Today, when I was delivering Girl Scout cookies at work, a coworker casually asked how my daughter was doing, then remembered my kid has cancer, apologized and gave me a hug. Nobody is sure what is ok to ask me or talk to me about, and honestly, day to day, I'm not sure either. Hence, giving grace and compartmentalizing.

I have also been trying to be more mindful of what I'm looking at and thinking about during the day. Obviously staying off social media while at work is a big one. Being careful about the music I listen to is another strategy because it can really affect my mood. I've found myself recently returning to some albums I haven't heard in a while for that reason. During COVID, when the kids were crying and my husband and I were bickering because we had been cooped up for too long, I would put on Tom Petty's album Wildflowers and everyone would instantly chill out. I've been listening to a lot of Tom Petty again. If I could live in the vibes of that album, I would. 

One time, a guy I dated was playing some Tom Waits song and told me that if someone loved me, they would play it at my funeral. I thought it was a weird comment at the time, mostly because I just didn't get the appeal of the song. Now I think if someone loves me, they will play "Wildflowers" at my funeral.

A Song To Find Peace

Tom Petty, "Wildflowers"

Story Telling

Something that has been coming up a lot when I read about grief is storytelling and how, through writing, we shape how we understand our lives or our trauma. Some of the authors I've read - Geraldine Brooks, Kate Bowler, Joan Didion - frame it as control. In a situation in which we have no control, we can at least control how we talk or write about it. In Memorial Days, Geraldine Brooks quoted Salman Rushdie's speech at Columbia University in the midst of the fatwah. "Those who do not have power over the story that dominates their lives, the power to retell it, rethink it, deconstruct it, joke about it, and change it as times change, truly are powerless."  

I was reading a blog post this morning that talked about how, after traumatic events, the narratives we construct about our experiences can dramatically affect how we process and heal. It's interesting to me that as much as I've read about writing and as much as I have personally written through challenging moments in my life, I never thought about it in those terms - as taking control of a story and shaping how I move through it. I have always thought of my journaling as a tool to figure out why I was feeling a certain way and how to explain it to others. When I was younger, I felt like there was a stopper between my mind and my mouth preventing me from explaining out loud how I was feeling. And in some cases, there was a stopper between my emotions and my mind preventing me from knowing why I felt the way I did until I had a moment to really think about it. This is probably why I'm resistant to talk therapy. Well that and all the crying I'd do. 

But, writing about my daughter's cancer in this format is a way to enact some control on what is happening. It helps me to understand all the information doctors are throwing at us, to construct a timeline of what has happened and what may happen, to pull out the threads of meaning I can make sense of. 

It's also a way to help me remember these days. In The Year of Magical Thinking, Joan Didion keeps revisiting the same moments over and over. At times, it is a way for her to make sense of the chaos and shock, to try to remember how the events of her husbands death played out despite the gaps in her memory. At other times, it is a tool to remember all the little moments with her husband and their long life together so she won't forget them as she gets further removed from his living presence. 

I think about that a lot. Even before cancer. What do I remember about my children as babies? What do I remember about their little toddler mannerisms and all the cute things they used to say? What moments did I try to etch into my brain that are now gone? My mom tried to tell me to write it all down, but I didn't. Life was too hectic. And now as I try to reconstruct it, what story am I telling about who my kids were or are based on the things I remember and the things I've forgotten? 

Some memories I have of my oldest as a toddler that immediately come to mind:

1. She loves watching TV. When she was 2 or 3, We watched Trolls every day after school for at least a year and we listened to the soundtrack in the car. Her favorite song was "Get Back Up Again." She was Poppy for Halloween 2 years in a row. 
2. She is a completionist when it comes to TV and books. She wants to watch every episode in order and read every book in a series in order. We watched every episode of Octonauts in order at least twice. For a minute, my husband and I weren't sure we should be letting her watch it because she would get so stressed out and worried about the characters being in danger. 
3. She sobbed at the end of Smurfs: The Lost Village when <spoilers> Smurfette dies briefly. 
4. She would get excited when we went to playgrounds and "her friends" were there. Her friends were just other kids that she had never met before. 
5. Once, she told me that she wished all of our family lived in the same neighborhood. She didn't understand why anyone would move out of their parent's house. After some discussion, she said that moving to Charlotte would be ok. 
6. Once, she told me that she wanted to stay 3 because she didn't want to get married and she didn't want to have a baby. 
7. She used to be afraid of "darkie monsters" that lived in her closet. I taught her to yell loudly to scare them away. We would walk up the hallway in the dark trying to scare the monsters. 
8. When she was 4, she had a lot of questions about death. She asked me where people went when they died. When I didn't have a confident answer, she told me to Google it. She told me that wooly mammoths lived after the dinosaurs, and then asked what animal was going to be here after humans were gone. When I said I didn't know, she told me to Google it. 
9. She used to be really into "cute scary" Halloween. She wanted to be a banshee. We settled on a skeleton. When we would drive past graveyards, she would tell me that was where the skeleton people lived. 
10. During a lesson on penguins, she told her preschool class that babies come out of their mom's vaginas. The daycare teachers were not prepared for that. 
11. At preschool she learned about different types of families. When we were out places, should would point out different types of families...loudly. See a kid with two women - that kid had two moms! See a kid with three adults - that kid has two dads and a mom! She did the same thing when she learned about different skin colors. 
12. She memorized a ton of books. Her two favorites were The Very Hungry Caterpillar and The Berenstain Bears and Too Much Junk Food. The latter is so ridiculously long, I don't know how she memorized it. 
13. We went to the beach and a hermit crab pinched her toe. She talked about that for years. 
14. She used to tell me she had "pink magic." She was pressing on her eyes until she saw colors - magic!
15. She learned that plants like music and kind words, so she would sing to the tree in our front yard and give it hugs.

There's more I could list. These things are just snapshots of a person who doesn't even exist anymore. Childhood just flashes by, and I wish I could stop time and just live here for a while. 

I have a lot of art and school keepsakes in a drawer in my basement. One of my goals this winter is to put together a scrapbook with her. To let her go through things from preschool and early elementary school and select what she wants to keep. I also got a mother/daughter book with questions that we can both write our answers in. I know that I am doing these things because I feel like our time together might be shorter than anyone hopes they have with their children. But, also, aren't these things that all parents want to remember these days by? I have just been putting it off, and I don't feel like I can do that anymore. 

-----------------------------

And now, a weird coincidence to remember. Yesterday, I was talking about Taylor Swift with a few coworkers as you do. Unlike women a few years younger than me, TS was not the soundtrack to my teenage angst. A coworker brought up something Jewel said about TS, and it hit me. Jewel was MY singer songwriter. I had forgotten. I got her book of poetry in middle school and read it so many times. The only song I remember how to play on the guitar is "You Were Meant For Me." I played Pieces of You and Spirit all the time on my discman. I have not heard a Jewel song in years. So why, when I got in my car this morning, was Jewel playing on the radio? Are the spirits talking to me or did I just not notice her songs until today?

A Song the Car Spirits Sent Me

Jewel, "Long Way Round"

Happy New Year

Christmas Break is coming to a close, and I am not ready for it to end. We've slept in. We've visited friends and family. We've eaten on our own schedule. We've puttered around, getting rid of clothes and toys we've outgrown and reorganizing the nooks and crannies of our house. But, there is still so much we need and want to do. 

It's a new year, and I guess it's when we are supposed to come up with goals for the upcoming year. Since I've been teaching, August has felt more like a new year to me than January. Regardless of how or when I mark the new year, it doesn't change the fact that I cannot, in this moment, think about the future. I have some plans for January, February, and March mapped out as best I can, but beyond that, it feels too unsafe. To imagine ourselves in May, a year after the cancer diagnosis, to make plans for summer, is too much. It feels like if I allow myself to think that far ahead, I will jinx it all. 

A friend made lake house reservations for us for sometime in July. I don't have it on my calendar, and I couldn't tell you the exact date we planned to go. I'm afraid if I solidify anything that we won't make it there. 

I also used to be fairly driven professionally. I'd set goals, and I'd make it happen. Before the diagnosis, I really felt like I was kicking professional ass - presenting at national conferences, being asked to sit on a variety of committees, getting accepted to paid professional development opportunities, leading departmental initiatives, asked about promotions. Now? I couldn't care less. I am doing what is required to run my classes well and that's it.  Let someone else run things for a change. I don't want to. 

Making resolutions, setting intentions, or whatever is an optimistic act - in this most ideal future, here is what I will accomplish. It's not that I don't want to be optimistic about the future. I do, and I am trying to be. But, I also want to be prepared for a harsh reality. I am split in two - hoping for things to improve, or to at least remain the same, and steeling myself for a fall off a steep cliff. 

I asked my daughter if there was anywhere she wanted to go this year or anything specific she wanted to accomplish. She said she wanted to go to the aquarium in Atlanta and take a drawing class. My goal will be to make those things happen. 

In all honesty, the things I want to achieve are not things I have any control over. More time, more life. There is still so much to do. 

A Road Trip Song

Alex Lahey, "On My Way"