Day: February 13, 2022

Dear Readers,

This letter is a little bit different than normal because I’m in a very different headspace than normal. In the large scheme of my life, the setbacks of this past week are small, but the emotional impact of them is large. I use the word “impact” deliberately because I’ve experienced many of these things as body blows after which I have to stop and catch my breath. The disruption is real and made worse by the lack of space between them. Without space to recover in between, my anxiety engine gets revved up and everything feels dire. So, in an effort to process all of this, I’ve written this letter. In case you’re also standing in an emotionally complex place and need to opt out, some things mentioned in this letter are: mental health struggles with anxiety & depression, wrangling with the healthcare system for transgender care, surgery, and a car crash in which no one was seriously injured.

Additional note: It took a lot of work to distill the essence of what you’re reading. I could write another 5-10k words with additional supporting information about all of the emotional, physical, and medical decisions that have landed us where we are. If, after reading this, you feel compelled to help somehow you can post pet pictures or happy things on social media or send them as replies to this newsletter. At this time distraction is needed, not brainstorming or additional advice. (Also totally fine if you just want to read without responding in any way.)

My head was very noisy this past week. It was busy with:

• Fragments of contentious (but important) discourse inside my faith community
• Thoughts about my role as a parent for my adult son who was struggling hard with depression, anxiety, panic attacks, and sensory over-stimulation for several days in a row.
• My married daughter who had a car accident (no physical injuries to either driver, just smashed cars) and we were her support network for picking her up from the crash site, helping calm her distressed emotional state on crash day, and post-crash emotional processing on the day after.
• Thoughts from larger world discourse on the topics of reproductive rights, healthcare, transgender rights, climate crises, and economic uncertainty.

The key commonality in all of these things is that topic is very important to me, often affecting my life directly, but my power over the outcome is limited. I do not like powerlessness. It makes me afraid and my learned response to that fear is contingency planning. Lots of it. I rehearse conversations that will probably never happen. I think through if/then decision trees to preplan my possible actions, even though I know from long experience that when I come up to an action moment most (if not all) of those contingency branches will be irrelevant to the choice that is actually offered. If my anxiety is particularly wound up, I’ll find myself in catastrophization spirals where I imagine the worst possible outcome, feel panic as if that outcome is inevitable, then play it over and over in my head in the same way that people replay a car accident, trying to understand what happened and to re-write the ending. Only I’m making up the terrible ending and then spending time trying to re-write it or contingency plan to avoid it.

The amount of creative energy sucked up and wasted on these brain activities is significant. So I try my best to prune them off as soon as I recognize them. But even pruning takes energy. I was managing, hoping for a calmer few days. Instead I got a notification from a surgeon’s office that we had two weeks to get a second surgery clearance from a doctor so my 21yo can have surgery in April.

My children’s lives and stories are theirs to tell, so I haven’t said much about my non-binary child and their choice to have gender affirming surgery. It has been an honor and privilege to watch my child grow into themself, to claim a new name and new pronouns. It has been heartbreaking to realize that their progress is stalled by a constant awareness that their body is wrong for them. If you can empathize with all of the exhaustion I feel from the anxiety noise in my head that I described up above, I hope you can then turn that same empathy to imagining if your every movement, your own voice, felt wrong to you. The amount of sheer will it takes to keep pushing forward against that constant headwind of dysphoria is awe inspiring. For my kid, surgery is the gateway into a life with less headwind. Life is still life. Adulting is still complicated. But the constant noise will quiet down.

It took years for my kid to realize that surgery was what they needed to move forward.  Then we had to collect a pile of supporting medical evidence that they ought to be allowed access to this form of medical care. Then we waited six months to even get an appointment for a surgical consult.  Then we waited while insurance evaluated our paperwork offerings. We don’t get to pick our surgery date, we wait to be told when it will happen. It has now been nearly eighteen months in various waiting stages. During all of this waiting my kid couldn’t get a job or start college because we don’t know when surgery will land. I arranged my calendar for the first half of this year so that I could easily shuffle all obligations to manage post-surgical care. Finally we were told “sometime in April” which is good.

But then came the message that if we couldn’t come up with more paperwork (specifically a second Letter of Readiness for Surgery even though I’d previously been told that one was sufficient) by the end of February, we lose the April slot and go to the back of the line, which would put the surgery into August or September and in direct conflict with only events of my year that I can’t rearrange (Gen Con, the WXR retreat) Not to mention putting life on hold for nearly another six months.  It’s another piece of paper, should be easy. Theoretically. If I can get a doctor to see us on short notice, if that doctor isn’t transphobic in some way that hasn’t previously come to light, if the insurance company actually accepts the letter and doesn’t come up with some reason to reject it. 

We have been so very lucky in that every person, every doctor, every neighbor, every family member has been kind and accepting of my kid’s identity, even the ones who didn’t comprehend it. We got lucky again, despite the fact that kid’s long-term therapist is on maternity leave, despite our GP retiring last week, so we had to meet with an entirely new doctor. New doctor was 100% professional and her only questions were clarification requests to make sure that the letter she gives us meets all of the listed requirements. I did not have to cold call forty different doctors on the gender clinic’s list of gender-affirming doctors and beg, but I was prepared to.

So, all is well. Probably. Hopefully. There are still people and organizations who have power to deny us the surgery in April and my anxiety wants to plan for all the contingencies. We have done everything that is in our power to do at this time. Every time my brain wants to build a contingency tree, I instead focus it on the fact that currently all is well. My son who was struggling has bounced back and is doing much better. My daughter has re-established her emotional balance leaving only the annoyance of post-crash-paperwork. All the other world and community stuff is still out there, but I’m actively tuning it out because my circuits are overloaded.

Everything is fine, but my body has not exited fight or flight mode. I’m moving through the world as if surrounded by tigers that could pounce on me at any moment. I can feel something clenched up in my chest and I’m not sure it will unclench until we’ve reached post-surgical recovery.

I’m taking this weekend slow, not doing anything that isn’t essential, and being kind when I recognize how far under my usual capacity I’m operating. Yet I can’t stay in this mode for the next two months. I have to find ways to do creative work despite the noise in my head and the omnipresent anxiety spikes which I have to keep pruning lest they turn into full-blown catastrophization spirals.

In order to do that, I think back to the hours right after my daughter’s crash, how we brought her to our house and stopped her from obsessing over the if/only thoughts. We distracted her with a Tetris game. (Did you know that science suggest that playing Tetris in the hours right after a traumatic event reduces the severity of PTSD related to that event? Giving the adrenaline-soaked brain something rhythmic to hyperfocus on really helps.)  So I’ve picked up a new pattern matching game which I’m playing a lot of this weekend. Starting Monday I’ll follow the script we used on the day after the accident, where my daughter still hung out with us and we prevented obsessing, but she decided to repair my purse for me. It was a small, concrete project which made the world better. I notice that when I do focus on small concrete tasks the anxiety doesn’t have space to ping around as much. So I’ll be keeping busy, trying to experience as much normal as possible.

Will my creative output be reduced in the next month? I can’t tell yet, and that is the wrong question. Measuring output is the wrong focus for me right now. Instead I need to slice my work into small portions and acknowledge each tiny moment of completion. Small task after small task will carry me forward until I have enough balance to look up from what is right in front of me and think longer thoughts again.

Though I would really like for next week to be boring. In fact, on Thursday evening as I was driving my other son (the fourth child who has not featured in this letter prior to this paragraph) home from work, I told him he was under orders to have a very boring weekend. It could be as interesting and pleasant as possible for him, it just needed to be boring for ME. He laughed and agreed that he would do his very best to be boring. So far so good.

Readers, thank you for spending time with this letter even though it verged more into the personal and familial than I usually do. I suspect writing it all out in this way is one of my ways to process it. I hope that your week has been far less eventful than my past week has been. And if you are wresting with events of your own, I hope you are able to be kind and patient with yourself as you find your way through them.

All the best,

Sandra