When there's no choice but to be the Patient.
On adjustment, trauma responses and navigating this new daily routine.
This night feels too familiar.
It’s 11:30pm, and I’m sitting alone in the dark. The glow of my laptop screen illuminating the space just in front of me. My heart feels heavy. The ache is both deep and wide, spanning the present the past and the future. Last night I was in bed from 8pm to 8am, but I only slept from 12:45am-3am, and again from 6:30am-7:15am.
I have no idea what’s taken away my ability to rest. I’ve taken every medication and supplement I have available for me in these situations - those to deal with anxiety and pain, nausea and exhaustion. Except, I don’t actually think any of them are working. And honestly, that’s terrifying.
I’ve been sharing bits and pieces in different places and pockets around the internet - snippets of these last few months mostly via Instagram captions and Substack journal entries, some via Facebook comments and text threads. But I’ve also carried a lot close to the chest this time around. Why? Because it’s been A LOT. And a different kind of lot than I’d felt for a long long time.
My health went from problematic to declining to the center of my world seemingly overnight. I just spent 9 consecutive days in the hospital, which was during my fourth hospital admission in just as many weeks. During that time I found myself sinking into old spaces - vacant rooms in my head ready for reminiscing, for turning over and over stones that I thought had already been laid to rest, wondering and worrying and constantly thinking about how this web I was spinning was doing the opposite of helping, but rather harming - deeply harming my mental health.
On Sunday and Monday, during the first 48 hours that I was home from the hospital, I showered, did laundry, watched approximately 18 episodes of tv across 6 different shows, painted my toenails, spent a few hours trying to reply to emails and organize my life and my brain, made to-do lists, purchased and loaded a mini-fridge for my bedroom to accommodate my current all liquid diet, had my home health nurse come to re-access my port, got set up to run IV fluids on my own each day this week, purchased several shirt options online to wear while using my port, thought about how my port has saved my life and allowed me so much medical freedom (including in this very scenario I’m currently living from my bedroom and not my hospital room) and how I also feel very self conscious and apprehensive about it having to be seen “in the wild” and also thought deeply and wistfully about where my life and my health currently stand, how I will move forward as soon as the chance is available to me, and how much I hope I can in retrospect give myself grace for however I am able to survive this riptide current tearing my apart inside.
That one sentence paragraph - that’s how my brain has been functioning lately.
It’s loud. Crowded. Too fast. Too muted. Numb. Blurred. Agitated.
I want to say wait.
Slow down.
Shhhhhhh.
It’s okay to rest.
It’s okay to feel anger.y Frustrated. Devastated. Terrified. Impatient. Annoyed.
Nauseous. Pain. Anxiety. Cramping. Stomach churning. Dizzy. Disoriented. Confused. Overwhelmed.
Eyes welling up with tears. Heart beating too fast, too hard. Heart sinking.
Whatever I do, or don’t do today, or this week, or this month as I wait and pray and pray and wait for a surgery date that is feasible - it’s not going to make or break anything.
This is one season.
It’s one small chapter.
Things have been this hard before. Similar hard, even. Just over nine years ago, while I waited to get my gall bladder out, for example. I would go over to a friends house weekly for dinner bringing my Ensure and Gerber Graduate Tiny Tot ravioli “meals” to the table while their 1 year old daughter ate hamburger and french fries off her mama’s plate. I felt no hope then. But I also had no responsibilities beyond graduate school. I just had friendship and darkness and the web of other patients online I was just starting to navigate. I didn’t know about patient advocacy. I didn’t even know I’d be a patient forever at that time. I just knew I had to put one foot in front of the other.
This time is different. I have a four year old who wants to know everything. I keep having to look for and find language that fits to explain to her the way her mama has and is changing, the way my ability and availability has been compromised, and that my love for her is constant, never changing and only always growing.
This time I know more. I’ve earned a Masters in Public Health and am working on a professional certification in Narrative Medicine. I’ve worked in clinical trial recruitment, retention, coordination and demystification. I’ve advocated for myself and others in countless situations. I’ve used my voice and my passion in the spaces of healthcare and rare disease. I became certified and practiced as a postpartum and infertility doula. I taught childbirth education classes and built a business that supported others in the most fragile places. I birthed and buried twins. I’ve grown stronger and more fiercely in my ability and passion for articulation, for storytelling, for the narrative intersection of humanity, connection and healthcare. I’ve realized how high the stakes are.
I’ve also come full circle. I went from healthy to a full time patient back to somewhere along remission, and this past year specifically I’ve experienced a number of setbacks - this one which has planted me directly in the center of the full time patient role again.
It’s just not the only role I want to carry.
My brain and my heart need more. I’m just trying to convince my body we can find the balance. Have you found the balance? What’s it like? Is it actually possible to be a full time patient and a part time anything else (or several part time something elses?) Asking for myself. <3