The Prognosis

“What is your favorite discovery?’ asked the boy. ‘That I am enough as I am,’ said The Horse” — Charlie Mackesy

This essay captures a conversation I had with a psychiatrist the month I turned thirty — April 2019. Prior to the appointment, I took a picture, a “selfie”, in the mirrored elevator, on my way to the psychiatrist’s office. I can’t explain why I took the photo— probably for the same reason I wrote this essay —it’s important to document the moments I show up for myself, and for others, even if it’s not in the ways I would have hoped. Because, today as I write this, and I think about showing up to that psychiatry appointment, with a giant bucket bag purse on my shoulder, I am filled with gratitude for past Jesse. A Jesse who was actually quite frightened to be standing in that elevator, but as I return to that day, through writing, somehow my reality, past and present, feels a little less frightening. It is my hope for the reader, that by stepping into another person’s reality, my reality, even for just a moment, they might find their own circumstance, or reality, less frightening. I guess I never want anyone to feel alone, in one of the loneliest places I’ve visited: a psychiatrist’s office.

Take good care, and thank you for reading.

Always with love,

Jesse

“Have a seat,” the psychiatrist says as she sits down, in an upholstered desk chair, facing the wall and begins to collect papers from her desk — pen in hand.

“Thank you,” I say to the back of her chair as I sink into an olive-green love seat and set my overstuffed bucket bag on the carpet with a loud thunk. I watch the bag quickly lose its shape and topple as its contents spill onto the floor; my jewel toned running shorts, a sports bra, and my red running shoes with no tread — shoes I should have replaced months ago. I reach across the floor, scoop my clothes back into the bag and glance up at the psychiatrist’s back, I rearrange my bag securely against the couch and watch her elbow move back and forth as she writes.

I cautiously break the silence to say, “I’m sorry I had to cancel our appointment last week, my daughter, Nora, was in the hospital.” She turns in her swivel chair to face me, with a clipboard and my intake paperwork across her lap.

“Not a problem,” she says as she glances at the clipboard, “What brings you in today?”

I stare back at her, then at the clipboard filled with my writing. You know exactly what brings me in today I think to myself. I explain verbally what I had already written on the form, “My primary doctor is changing her practice. She was the only doctor in her group to still be prescribing this medication. Apparently, it’s heavily regulated.”

“Well, yes. It’s really just red tape and such. We need a lot paperwork and documentation to prescribe it. It makes sense she referred you here. When did you start taking it?”

“About a year ago. It helps me stay present. It seems to be helping with my overall energy.”

“Hmmmmm, well that’s good. Are you taking any other medications, besides this one?”

“No. Although I do have prescriptions for Xanax and Zoloft. My primary prescribed Xanax when Nora, my daughter, was diagnosed with epilepsy and an abnormal brain structure— when she was 3-months-old.” I watch the psychiatrist’s eyes widen as she absorbs my words. I watch her face as I continue talking, “When we brought Nora home from the PICU — after her diagnosis, my primary told me I could take up to three Xanax an hour. Is that typical?”

“Well, no.” She replies, her eyes still wide — fixed on my face. “How old is your daughter now? What is her prognosis?”

I feel myself begin to retreat — into robotic numbness— I hear my voice answer her question with a question. “She’s five. What do you mean prognosis?” But I know what she means. I just don’t want to talk about it.

“What is her life expectancy?” The psychiatrist asks bluntly, eyes still wide.

I feel my head spin and I start to feel sick — nauseous. I lean forward and cross my arms across my stomach, holding my belly tight. I tell myself to sit up and breathe, but I can’t. Instead, I look deep into my bucket bag — where I can see the toes of my red running shoes — pointing up. I take a deep breath and hear my voice answer her question, “She is a palliative care patient at Children’s. Life expectancy for children with her syndrome— Aicardi Syndrome — ranges, but there aren’t many girls with Aicardi Syndrome in their twenties. Does that answer your question?”

“I see,” she says,“That must be hard, because you are living and grieving all at once.”

I quickly let go of my stomach and sit up — defensive. I fix my eyes on hers and I feel my shoulders expand and set as I sift through my racing thoughts: don’t you dare say I’m grieving. I am not grieving —do you grieve the sun because the night is coming in a few hours?  It’s the world who’s grieving —it’s you who is grieving. Nora is perfect. I continue to stare at the psychiatrist, but instead of saying anything, I take a deep breath and bite my lip; I know she will only assume I’m in denial. Of course, maybe I am in denial. Or maybe, I just consider myself an expert on my own reality, and the reality is my life, and Nora’s life, are gifts worth celebrating.

I take another deep breath and reply, “What’s hard is when one person’s health in a family is fragile, it means everything, and everyone else is fragile too. It impacts everything and everyone —me, my husband, and our two-year-old son, our marriage, our mental and physical health, our ability to be involved with our family, our friends, and our community. I feel so vulnerable all the time —that’s what’s hard.”

“Hmmmmm,” she says. “That makes a lot of sense. Do you need a new prescription for Xanax?”

I relax my shoulders before I reply, “No. I hardly take it. I used to take it whenever I had to take Nora to the hospital. I don’t know when that changed — probably when I was pregnant with Everett, and Nora was in and out of the hospital almost every month. I had to find other ways to manage stress in those settings.

“I’ll write you a new prescription.”

“I think I have plenty.”

“Well, then you have it in case you need it. I’ll add it on to this other prescription.”

I nod silently as the psychiatrist continues to write. But I said I don’t need it I think to myself.

“What else did you say you are you taking?”

“I have a prescription for Zoloft – I started it two days after my son was born.” I take a deep breath. Inhale. Exhale. “My water broke while I was at Nora’s hospital bedside — she didn’t come home until much later. My husband went back and forth between all of us in the hospital. Nora had a G tube placed just a month before, and she was having almost constant atonic seizures. She lost all of her skills — I can’t even explain it…” I take another deep breath, “The day after Everett was born, I thought he was having seizures too — even after everyone told me he was a healthy baby.” I pause as the psychiatrist looks down at her clipboard to write, I watch her pen move across the paper as I say, “They said that about Nora too— until the day she ended up in the trauma room at Children’s Hospital. I actually requested a social work consult before Everett and I were discharged. I knew I needed a plan.”

“Hmmmmm,” she says as she looks through her papers.

I continue to talk, “I came off Zoloft late last spring. About the time I started running. I knew I probably needed exercise to get through the winter months without having to go back on it. I ran through the winter — mostly in the dark with a flashlight.” I say with a laugh. “I’m not opposed to going back on it if I ever needed to.”

“You run?” She says, delighted. “That is so GOOD. Good. Good. Keep doing that.”

“I actually brought my running stuff.” I say as I gesture toward my bucket bag – in case traffic is bad on the way home and I need to wait it out. What’s it like going East?”

“Traffic is usually pretty bad going that way…” she trails off as she continues to scribble across her papers. “Now, I have to go over a few standard questions with you…”

I listen and answer the psychiatrist’s questions about general health, alcohol consumption, drug use, and smoking. I stare out the window, as she writes on her clipboard until I hear the question, “Do you have frequent crying episodes?”

I take a deep breath before I reply. “I’m actually not a big crier. But lately yeah, only if I’m like, really sad, under extreme stress, or if I haven’t slept— it’s been a lot lately.” I consider explaining how just last week, during Nora’s hospitalization, I wound up crying on the side of the road, as a stranger pulled tight to the curb to ask “are you okay?” Of course, I would never tell the psychiatrist, or anyone, about how when I eventually walked back into Nora’s room, I slipped out of my red running shoes and tossed them in the trash—it was time to buy new shoes anyways. It wasn’t the shoes I wanted to throw in the trash — it was that moment of side-of-the road vulnerability, of instability. That night I fished them out of the trash. Because I never finished the run.

I stare out the window, and continue talking.

 “I would guess sleep probably has something to do with the crying, and my overall energy. Nora has seizures at night, my husband or I get up to be with her. And she’s also been so sick recently which means we are taking care of her at night — doing her breathing treatments or making her comfortable. Even when she’s healthy, she often needs a change, or to be repositioned, in the middle of the night.”

“How many hours of sleep are you getting?”

“I don’t know.”

“If you had to guess…”

“Maybe 6 to 7 nonconsecutive hours?”

“It sounds like you are sleep deprived.”

“What mom with two children under five isn’t sleep deprived?”

“Well, I guess that’s true. But you should really try for 7 to 8 hours of sleep.”

I consider repeating myself, weren’t you listening? Nora needs help at night — my daughter needs help. But I don’t. Instead, I smile and say, “I like the sound of that. 7 to 8 hours is great goal.”

The psychiatrist smiles and says, “I have to say, you are really navigating all this — your life— with grace.”

I stare back at her, confused, as I think to myself, weren’t you listening? How can you call this grace? If anyone sees any grace in this they aren’t seeing me — they are seeing Jesus. I take a breath. Inhale. Long exhale. I say, with a crooked half smile, “I actually get that a lot from people in healthcare.” And add, internally, and it makes me wonder if anyone is paying attention.

“Hmmmm, well you are, and I really mean that,” she says as she reaches for a stack of papers from her desk and continues to write.

“Thank you. I appreciate that.” I reply as I reach into my bucket bag for my phone. I open the “maps” app while I wait for her next set of questions. I begin to create a running route — along the coast —a gradual uphill road through beach cliffs. When I reach the top, I’ll run the the dusty, gravely, switchback trail to the shoreline. I know it may not be a graceful run— slipping and sliding down gravel with no tread, but it will certainly be a lively run— a finished run worth celebrating. I move the map and fill the screen with the blue of the Pacific Ocean and I decide, quite suddenly, that when I reach the water, I will slip out of my red shoes, and throw them, one at a time, into deep water.

I look up at the psychiatrist, resolved. I watch her pen move back and forth across her clipboard and notice the word, “grace,” still hanging about the room filling the space between the doctor and her client — a client resolved to her circumstance — a mother in a position of surrender, holding her family tight, and praying the same prayer, “I can’t do this alone.” Grace isn’t human I think to myself. Grace is a breath that fills empty spaces and quietly whispers, “You are enough.”

Photo Credit: Jessica Rice Photography