What I learned from spending 3 months in bed

Content warning: surgery and other medical topics, suicide

I haven’t posted in a while. Here’s why.

After graduating from Tufts this spring, I spent a week shooting in Puerto Rico for my last project with the Program for Narrative and Documentary Practice. When I got back, I had big plans to apply for freelance newspaper photography work in Boston and then move to Washington DC at the end of the summer.

That didn’t happen.

Instead, one of my spinal discs went from slightly ruptured to catastrophically ruptured, filling most of my spinal column with disc material. I became unable to walk, stand, or even sit without pain. I won’t describe how it felt, other than to say I was trying to send a full lower body’s worth of nerve impulses through a twentieth of the space it needed.

I spent 3 months waiting for back surgery, leaving bed only to go to the bathroom and make excruciating journeys to my orthopedist’s office. There were about three positions that didn’t give me shooting pain or make at least one of my legs go numb. I could barely handle watching Netflix on my phone, let alone hold my camera up safely or write in a notebook for more than a few minutes at a time. I was lucky to have a boyfriend, friends, and family who brought me food, visited me, and helped move me and all my belongings back into my parents’ house when my lease ended. And I was luckier to have an amazing therapist, Jason Mihalko, who let me Skype into my sessions every week and listened patiently to all the weird anxieties I had while I was trapped in bed.

I, and the rest of the people who care about Jason, lost him to suicide at the beginning of September. He died about a week before my surgery. I was devastated. He always made it a point to tell me that I could call or text him any time I needed to talk between sessions, and knowing he was there for me was one of few things that made me feel like I could deal with the fear and anxiety that comes with months in bed followed by surgery followed by months of recovery.

I’d already lost agency over way too much – what I ate, where I could go, how I could move – and for Jason to die felt like a further slap in the face from the universe, just one more reminder of how helpless I was. How dare I assume that I could hold onto anything or anyone that made me feel safe or normal? How dare I forget that everything goes away eventually, whether it’s the ability to stand or the presence of someone I care about and love?

Even with the support of the people in my life, I felt incredibly alone. Healing from surgery was even more painful and undignified than waiting for it had been. It seemed like no one could help me. Sure, they could bring me food and narcotics and sit next to my bed and chat, but they couldn’t make me heal faster, and they couldn’t take away my grief. The only person who understood exactly what I was going through and what I needed was me.

I was the only person who could sit with my thoughts in the moments I was terrified I would spend the rest of my life in bed. I was the only one who could face my fears about my body and disability, my independence, my future, my self. I was the only person who could talk me, step by step, through the pain of standing up and walking downstairs for a meal for the first time in months. I was the only person in this body, and it was on me, alone, to pay attention to my pain, figure out what it meant I needed, and then find a way to get that.

It’s disheartening to fully apprehend just how alone you are in your body, how alone you are in your head. You already know you’re alone, but you don’t really believe it until you experience it in such an extreme way.

The upside, however, is that now I know what I can do. I sat with myself through things I thought I could not endure, which no one else could sit with me through or relieve me from, and I made it. I know exactly how patient I am. I know that if I pay attention, my body and my brain will often tell me what they need. I know I can find ways to take care of myself, even if I can’t move. I know that we hold trauma in our bodies, in a literal, non-new-agey sense, and it is possible to find it the places we are keeping it and try to expunge it. I know how much trauma I am carrying in this body. (It’s more than I thought.) I know that even when I am sure I can’t go on, I will go on anyway. And I know that even when it feels like all agency has been stripped from me, I still have the agency to choose. I chose to hold on. And I’m still here.

I’m doing better now. For one, I can walk. And I’ve been doing lots of sitting in chairs. A few months ago, I had the great privilege of taking the pictures for the ACLU of MA’s 2018 annual report, and I’ve started taking on more work as I’ve become strong and stable enough to do it.

This is not where I expected to be at the beginning of 2019. But I’m glad to be here at all, and I’m glad that I’m beginning to get to do what I love again. And I’m very glad not to be writing this from bed.