19. I am not my illness

A new podcast about navigating relationships with mental illness and an essay on sharing the news of my first job and the humanity it brought with it

Hello from beautiful Vermont!

I cannot tell you how happy I am to be home after this past flurry of travel. Though my trip to Michigan and time in Boston were wonderful, there is just something about August in Vermont — cool nights, bright days, and a light breeze — and of course, being home with my whole pack! I also am so psyched to be working. I know that might sound silly but I am genuinely so excited about what’s to come and have some fun developments to announce soon.

This week, I have Chapter 17 for you. This chapter holds a memory I cherish daily and writing it felt entirely joyful. I hope that comes across in the piece. This week, I also have a new podcast for paid subscribers. This podcast is about relationships and mental illness. In the episode, I told the story of the two most pivotal relationships in my young adulthood and shared all that I learned along the way with my rapidly declining mental health. Recording the episode proved far harder than I anticipated but hopefully, some of it resonates and the contents shared within the episode offer a solid foundation for future episodes with Dave.

Paid subscribers can listen to the episode now and if you are not subscribed but are interested in doing so, you can upgrade your subscription here. A paid subscription costs $6 a month or $60 a year.

Paid Subscriber Benefits Include:

• Access to The Patient is In — a podcast exploring serious mental illness through the lens of those affected. Each episode includes an interview with someone touched personally by my lived experience of mental illness and explores it through their perspective. You can listen to the most recent episode here.

• Access to the audiobook version of Maura + Me — you can listen to the first four chapters here.

• Exclusive Content where I answer your questions or share behind-the-scenes photo essays. You can read the most recent column about navigating how to support someone who is struggling deeply with shame here.

• Access to Community Chats where you can connect with me and the community, at large. Note: these chats are currently only available on the substack app (free to download).

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And now, without further ado…

19. I am not my illness

I could not contain my smile as I walked to my truck that afternoon. Beaming brighter than the noonday sun, I kept re-reading the paper copy of my signed employment agreement. I had a job. I had a real job and the papers were proof of it. They were also the result of an unconventional conversation I had had with Bob Drake mere minutes earlier. 

Determined to hold onto the high that getting my first job held, I had asked Bob Drake to photocopy the paperwork. This request had felt aggressive at the moment but, without batting an eye, he had willingly obliged while I gushed about how I was going to hang the copies up on my apartment wall and keep a copy in my glove compartment for safekeeping. I had said that keeping them around in physical format was the only way that I could remember that today was real and that the job was officially mine when my psychosis got bad. After I made my unusual request, he had given me 5 copies of the paperwork “just in case”, and as I sashayed my way to the truck, I clutched the pages to my chest knowing exactly who I was giving the first copy to – Maura, my beloved Maura.

I lay the copies beside me in the front seat and flattened them, just as I had done with my crumpled dress an hour earlier. I thought about buckling them in with the seatbelt and only after I tried and almost wrinkled them aggressively, did I feel the hilarity of such an endeavor. Chuckling to myself, I drove straight to the hospital. I parked in visitor parking for the first time ever and walked myself and my work papers into the hospital without my usual hesitation. Care team rules be damned. I was visiting Maura that day. I was sharing this good news with her in person because this job was our victory. This job was our proof that recovery really was possible.

I walked through the hospital with ease, an ease I had never felt in that space, and I strode into the unit with a newfound confidence and a wide smile. I was still dressed for the interview and buoyed by my good news, and as a result, I felt like an entirely different person. I was treated like one too. A staff member held the locked door open for me, no questions asked, and when I introduced myself at the nurses’ station as a visitor with quiet self-assurance, the two nurses on duty – two nurses who had cared for me for over 8 years – didn’t even recognize me. 

Nothing had changed and yet everything had changed. I was still the young woman who was a frequent flier there – the young woman who had been written off as terminal ten hospitalizations ago. I was also still the young woman who was consumed by psychosis, debilitating Obsessive Compulsive Disorder, and PTSD so brutal that I still defecated myself in fear more than twice a day. But this time, in that blue-lit, cold, and hollow ward, I was treated like a human. And this time, in that ward, I also knew I was a human, and that really was something.

The nurses began their formulaic questionnaire. I was entirely familiar with it. I had heard it countless times… Do you have any sharp objects with you? Are you wearing a belt that your patient might take from you? Do you have any medications on your person? Are you giving anything to your patient and if so, can we please inspect it? I answered politely, biting my tongue at how they always used “your patient.” It was as if Maura was no longer her own in that place. It was like being called a patient wasn’t adequately dehumanizing and they had to also relinquish ownership of herself to really convey the power dynamic at hand. 

Only at the end, once I had appeased their many safety concerns, did they finally ask me for my name.  It was a simple question – one that anyone could answer. But that day, I realized it was also a complicated and heavy one for me. That name – my name – held the weight of my illness, the depth of my darkness, and a code linked to my patient ID number. That name held my hell within it and tied me to the invisible being I used to be in their presence. But I was no longer invisible, so I paused and as they asked again, I made the second big decision of that day. I renounced my legal name for my pen name, the name I had always daydreamed that I would write books under to protect my family and friends from being attached to my truth. So, just as I had practiced for my interview in my parents' hallways, I reached out my hand and made steady eye contact while leaning in. “Hi, I’m Kate Speer.”

Both nurses shook my hand and both nurses made eye contact with me as they did so. Though this sounds minute, it was revolutionary for in that moment, I was worthy of their attention and good manners. At that moment, I was worthy of their humanity. After making pleasant small talk for a moment, they invited me to sit down and wait for the Attending doctor they had paged. Maura had had ECT treatment that morning and they needed his sign-off to wake her up for visitation.

As I waited for the Attending, I sat in a lonely armchair, the one reserved for visitors. I would usually be terrified of such a reality – to have the Attending, the highest authority on the medical team totem pole, called and come out to meet me but instead this time I felt calm, practically at peace. I was armed with a new job and a new name and the confidence they both brought with them. Tap-dancing my feet on the icy tile, I took stock of the pile of magazines they hadn’t replaced in five years and surveyed the space. It felt completely different than it had before. It was smaller, less authoritative, and certainly less scary. It was just a room that day – a waiting room that happened to be behind a locked door.

I waited patiently for twenty or so minutes and danced my feet along the tile floor the whole time. Even with my professionalized persona, I could not contain the joy that flourished within me. When the Attending arrived, he cocked his head like a confused dog and took a few steps back studying me. It took him a second or two to get his bearings before he finally spoke to confirm his suspicions, “Kate?! Is that you?!” I laughed at his question and nodded as he remarked on how incredible I looked. Then, as if remembering his alpha role within the ward ecosystem, he forced a stern stare across his face and took a seat begrudgingly beside me.

The nurses watched with scrutiny, internalizing their own frustration and shame that they hadn’t realized who I was, and upheld the iron-clad rule that I was not allowed to visit Maura for fear of suicide contagion. Fully aware of their stares, the Attending sighed and paused, as if trying to decide if his role and the respect of the nurses or his deep pride in my recovery mattered more. Head bowed as if resigned to the character he was cast to play, he launched into a well-rehearsed monologue about my safety, the ward’s policies, and the importance of my respecting them. He droned on for a while, appeasing the nurses' glares, but nothing he said extinguished the smile on my face or my dancing feet on the tile below.

One of the nurses, so frustrated by my cheery demeanor, finally interrupted the Attending with a scolding, telling me to stop with my insolence. But even then, my joy still beat strongly within my chest because that day, I wasn’t a patient. I wasn’t an illness. I wasn’t an identity that was intrinsically attached to my disability, hospital ID number, or anticipated life sentence in a residential treatment program. No, that day, for the first time, I wasn’t any of those things. Instead, I was a human. I was a girl with a job. I was a writer with a pen name. I was a woman who had just told her whole truth out loud in a professional job interview and been celebrated and rewarded for it.

As the Attending continued his lecture, I realized the power of this truth and surprised us both by standing up brazenly. He jerked back, startled by my assertive behavior, a stark departure from my typical people-pleasing ways. But this time, I didn’t care. Instead, I handed him two copies of my employment paperwork and told him that one copy was for him and one copy was for Maura to hang on her wall. It was the perfect “just in case” moment. It was exactly why Bob Drake had given me five copies. And before he could read them and see, in writing, that I was so much more than any one of the care team had ever given me credit for, I danced right out the door.  The nurse’s stern scolding faded into silence as the locked door closed behind me.

And that day, for the first time, I left the ward with pride instead of fear of their words and scorn because I finally knew that it didn’t matter what they said. I finally knew that it didn’t matter that they were mad at me. It didn’t matter that I had broken the rules and my psychiatrist was going to hear all about it. No, it didn’t matter at all because, for the first day in my life, I felt the truth of my being in that ward. Yes, for the first time, I felt the truth that I was not just a patient and I was not solely my illness. 

I was a whole human being. I was Kate Speer and even if they didn’t like me, I finally did.

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Thank you so much for being here with us and supporting us as we adventure forward.

Wishing you a weekend and sending lots of love your way.

Kindly,

Kate, Waffy + Tug