The Day that Changed Everything
It’s been a long time since I’ve put words down on paper, not because I haven’t wanted to, but because I haven’t been able to.
On Wednesday, November 29th, 2023, I went to bed early with a pounding headache. I took my migraine medication, put on my eye mask, and immediately was unconscious.
The following morning, my alarm went off at 7:30am for an 8 o’clock telehealth therapy session. I vaguely remember texting my provider that I had a migraine, I couldn’t sit up, and I needed to cancel our session.
The next thing I knew, I was sitting in a wheelchair in the Emergency Room.
My husband knew I had three telehealth appointments that Thursday, and apparently tried to wake me up at some point during the morning. I was mostly unresponsive, saying things incoherently, and burning up with a high fever. Thinking I was experiencing an adrenal crisis, he administered my emergency steroid injection, dressed me, and basically carried me out to our car. He drove the 10 minutes to our nearest emergency room and brought me inside.
As I drifted in and out of consciousness, I remember profusely sweating, feeling nauseous and dizzy, and the most overwhelming pounding in my head.
I was admitted to the hospital and for three days I laid in the dark, crying with any movement or sound, trying to communicate to the doctors that my head had never hurt this bad in my life. They tried so many IV medications, but nothing made a difference.
Nearly four years ago, my mom had benign meningiomas removed from her brain, and my grandmother has had some removed as well. My husband finally asked the doctors if it was worth doing some brain imaging since I wasn’t improving.
After a CT scan, I had an MRI without contrast, which showed a spot on my brain. This MRI was so overwhelmingly painful and traumatic given how loud the machine was. When they told me I needed another MRI with contrast, I sobbed. I remember coming out of that MRI thinking this better be beneficial somehow. When a 6mm abscess was found in my brain, one I had to be reminded about the next day, a lumbar puncture was ordered. This extremely agonizing procedure indicated that I was facing bacterial meningitis.
It wasn’t until way after that day did I learn that only 1 in 100,000 people get bacterial meningitis, totaling approximately 3,000 people a year in the United States.
Here are some numeric facts:
From my day of diagnosis onward, I proceeded to spend 16 days in the hospital during three separate admissions.
50 days of IV antibiotics
4 Brain MRIs
3 Brain CT scans
1 Lumbar puncture
112 sets of infusions at home + 26 sets of infusions in the hospital (3x a day, 3 hours each) totaling nearly 700 hours attached to an IV pole
11 doses of Daptomycin
75 doses of Vancomycin
138 doses of Meropenem equating to 276 bags of medication
7 additional weeks of IV fluids and medications to manage the forever lingering migraine.
Going on 14 weeks straight of a needle sticking out of my chest, I’ve dealt with a hell of a lot more than what can be depicted in numbers. My team (my sister from another mister, my husband, and my 4.5 year old daughter) has held my hand and often times navigated for me logistical things things like damaged medication deliveries, countless hours of phone calls, organizing and inventorying supplies, several routine appointments with infectious disease, neurology, neurosurgery, GI and endocrinology to navigate the ways this brain infection has and continues to harm and change my body, waiting to feel comfortable driving again, waiting for the throbbing in my head to finally stop, waiting for my short term memory to be back at 100% - waiting for months and months and months to hopefully one day say that this chapter is finally behind us.
In the interim, I continue to notice things that have improved, and things that are still a struggle.
This journey has been so much harder than I ever could’ve imagined.
On November 30th, 2023, my world came crashing down around me. We hope the worst has passed, but there’s still a level of terror I live with everyday - fear of developing another infection, of recurring meningitis, of the symptoms never going away, of me not returning to full capacity. I’m just starting to understand that this has translated a lot into a fear of germs, a fear of leaving the house, an astronomical fear of trusting my body, and a fear that my brain might not continue to heal.
Last week, I went through 8 hours of testing for a neuropsychological evaluation. As I await for the results to be compiled in a report, I keep turning over something that was said to me during the assessments. The doctor felt it was important for me to understand that this infection in my brain, it’s healing pattern is a lot like someone trying to heal from a traumatic brain injury (TBI) resulting from something like a car accident. And just like that accident wasn’t their fault, this infection hasn’t been my fault.
And that statement opened the floodgates. When I left the testing facility I spent two days trying to wrap my head around the immense amount of guilt I’ve struggled with over the last three plus months.
Guilt about what my family has had to watch, endure, and assist with.
Guilt about spending such little time with my daughter.
Guilt about not being able to contribute to our household when it comes to simple things like laundry, cooking, cleaning, running errands.
Guilt about not being a strong partner to my husband.
Guilt about taking time off of work (and the slow paced ramp up that has finally started).
Guilt about the resources I’ve needed, the energy I haven’t had, the emotions I’ve been flooded with.
To have someone who has just met me a) be able to see that guilt through answers to straightforward questions, and b) try to relieve me of this guilt was something I never expected - but here I am, trying to sit with that information.
Trying to reduce the ways I blame myself.
To try to remember what grace is.
That after writing this, I’ll need to rest.
That rest isn’t an elective, it’s required.
That I have to say no to some things so I can say yes to others, even when I really really want to say yes to all of them.
Finding myself after all of this has been a challenge I didn’t even identify until recently, and I know that it’s going to take time, energy, patience, grace, and help from others. I honestly don’t know what this will look like, but I’m trying hard to be open to the possibilities. I can only hope that one day, I’ll be able to repay those I love for all that they have done for me during this chapter of my life.