This past week felt harder than usual.
It started last Wednesday, when I saw a new neurologist to figure out my new medication, which would be a pen injection I’ll have to give myself once a month.
Then, later that day, when I had to send a break up letter to my last neurologist, for abandoning me during my flare up. Then, the next day, when I had to speak with a nurse about everything to keep in mind while taking the new medication.
It all started to feel like… too much. I know I can take on anything, but I just didn’t want to. I was tired. Another doctor. Another medication. Just as my eyes were finally starting to feel better, I now had to put my energy into how to deal with my MS, and it started to feel like I never had a break to breathe. I also felt scared about starting a new medication and needing to inject myself.
I know a lot of fear comes from the unknown. Maybe it will be fine, and even better than before, but for now I am just in this in between place of feeling scared and nervous and burnt out. It feels as if now that I’m gotten over the physical hump of my surgery, the emotional burnout of it all has caught up with me, and I am just deeply exhausted.
I usually say yes to everything, but lately I feel more inclined to draw inward and focus on myself. To conserve my energy. I am sure this period will break, but I’m also letting myself acknowledge that maybe it’s also my body needing to rest for a while.
Everything seems in flux at the moment. But I am trying to stay mindful of these changes, rather than judging myself for feeling more tired than usual. So, I decided to lean into this energy, and write a poem about it all— this medical trauma, this sadness that lingers in my chest even though I know things are heading in the right direction. It feels very vulnerable to share, but that’s the point of this whole newsletter after all, so here it is:
A Break-Up Poem To My Doctors
I’ve had my heart broken many times, But not by lovers Only doctors Medical professionals who insist they will help me And then let me down, again and again With love, you can protect yourself Create a hard shell that no one can penetrate So that you are safe So that you will never feel hurt if they leave, not really But with doctors, you are theirs, and there is no way to hide They don’t just see me Sitting there in the examination room They can see my entire medical history And my parents’ history And grandparents’ history With them, there is no pretending They can see what’s in my blood, my genetic predispositions They can see the back of my eyes They can see right through me, read MRIs of my brain and spinal cord Lovers cannot do this They can only see so much of you They can only see how much you are willing to show them But doctors have all of you Your whole body Your aching heart And your trust That you must give to them, willingly or unwillingly, because that is how it is You have no other choice When a doctor hurts you, it cuts deeply, like a pain I never knew When a doctor blinds you instead of keeping you safe When a doctor tells you to move on to someone else because you “ask too many questions” about the chemotherapy treatment When a doctor looks you in the eyes and promises they will help you, and never returns your calls I’ve written many break up letters to doctors Some of them go on the online portal and I never see the doctors again Some of them stay in the notes app on my iPhone and are never seen by anyone Because I am afraid of what would happen if I cut them off and need them again Every time I meet a new doctor, I am filled with a small bit of hope, but mostly dread That they will be like all the others and hurt me and leave me and not listen when I tell them I'm in pain But I keep going, because my sight, my body, my life depends on it I cannot keep my heart safe All I can do is hope that the next person who holds it Is gentle with it the best way they can
And then, something shifted. On Tuesday, my friend June came over and we got ready for Clown Couture night, a clown fashion show in Bushwick.
I find there is often a lot of negative talk around clowns, because of how clowns are portrayed in popular mainstream media (scary, big red nose, floppy shoes). But I’ve always been fascinated by the circus and clowns since I was a teenager. And as I got older, I’ve only loved this world more. It’s a space to be silly, creative and fully yourself. In fact, I feel more beautiful and confident with a silly outfit and covered in face paint than when I’m wearing a nice dress and some make up.
When June arrived at my apartment to get ready, we were both having off days, but as soon as we put clown makeup all over our faces, our energies transformed. We were giddy, light. Stepping into a new world.
We took an Uber to the bar, and even with our faces covered in paint, we were able to talk about our hearts and the relationships in our lives. There was something so comical about it, which was maybe the point of clowning, too. To not take anything too seriously. That real pain and heartache can feed into the comedy of it all.
When we arrived at the show, there were so many stunning acts, including a clown fashion show. I stood there posing for the photographer under the bright lights, and was struck by how different I felt, how much energy I had, after feeling down all week.
It didn’t negate how I had been feeling, but made me appreciate how deep moments of grief can lend themselves to deep moment of joy, too.
In fact, exactly last April, I went straight from a long MRI appointment to a clown event. Apparently, I seem to need a strong burst of silly joy to lift me out of my medical low spirits. I even wrote about it in this very Substack, for a post called “From (MRI) Gown to Clown.”
It’s funny that these intense medical experiences in my life are repeatedly punctuated with absurd clown events, but I don’t think it’s a coincidence.
I was really scared to share my poem because of how it speaks to these sad parts of me that I sometimes wish didn’t exist. But if I only shared my fun clown journey, it wouldn’t have the same context. It wouldn’t feel as significant.
We need to feel these deep bouts of grief, so they can help us embrace these moments of joy even more. It’s what makes the moments stronger and more powerful. I don’t need to shy away from this sadness in my chest, but let it live there, alongside all this joy I feel when I am dressing up and being silly and alive.
Being a human is tricky, and we feel a wild range of emotions all the time. Sometimes, I feel overwhelmed by this, but I’m appreciating how these emotions can feed into each other and make us better humans and clowns.
Love,
Julia
This is excellent. Would love to have guest post on my newsletter sometime
love this essay & the clown pics are amazing!!!