It’s been hard to write lately.
When I poise my fingers over the keyboard, I squint, trying to focus on individual letters. Instead, words swim in front of me. Sometimes, my hands weaken, and I can barely move my fingers. My typing speed is slower than usual.
Sitting upright, bookcases drift right and left, and the kitchen table jolts backwards and forwards. I feel nauseous.
I try standing, but sometimes, I need help to rise from the couch. Walking means lilting to one side, crashing into door frames, stumbling, losing sense of reality, and nearly pitching headfirst into the side of the car.
I briefly tried medication, but it sent me into a mental spin, and I couldn’t make it past the first hymn last Sunday morning. We left the assembly and drove home.
I’ve barely driven for the last month and a half, relinquishing the steering wheel after dizziness advanced so suddenly during one trip to town that I couldn’t see the road. I pushed myself to drive through the woods to a safe pull-off overlooking the West Union Covered Bridge and sat in the shade for 45 minutes, nervously scrolling through Twitter to take my mind off of what had just happened.
After a month of this, double vision set in. Mysterious leg pain I’d previously attributed to wearing old work boots crept in again. I was convinced to go to the emergency room.
There, a bomb dropped: “We’re looking at M.S.”
The staff in the room left, a flurry of five.
I broke, gasping and sobbing and crying out while my significant otter and a dear friend rushed, one to either side of the hospital bed, to hold my hands and head. When a doctor returned, she explained that I was exhibiting all of the classic symptoms of multiple sclerosis and that I was at the right age for developing it.
An ambulance transferred me to another hospital so that I could receive neurological care. When I arrived, a friend stood waiting for me, smiling. I clung to her, and then the nurse came in with questions. Signing the paper on the clipboard, I could scarcely grip the pen.
I’m never going to be able to write again.
The next morning, the neurologist said, “There’s a list of things a mile long that could be causing the dizziness.” He ordered an MRI.
The MRI room glowed blue, illuminating glass panels etched with weaving grasses. An HD display of stars strategically covered a ceiling tile above the entrance to the giant plastic machine that would penetrate my brain. I sat in the wheelchair and stared, thinking about everything I could to keep the thought away:
Something could be wrong with my head. My mind.
Everything was becoming Real.
God’s presence richly surrounded me, held me.
New Zealand. Light. Sheep.
After the MRI, I could barely sit up, and I barely knew where I was. The nurse wheeled me back to the room, and as soon as she left, a panic attack I’d held back while in the machine broke loose, and again, emotion poured forth. My friends just sat with me, never saying it’s going to be okay or don’t cry or everything’s fine, you don’t have to cry.
They just let me cry.
Within ten minutes, the neurologist had looked at the MRI, and the nurse delivered the report: “The MRI is normal. The neurologist wants to see you tomorrow.”
All of the afternoon and evening were free. There was a lot of Netflix, Studio C, visiting, and eating weird-tasting pumpkin bread from the store.
The next morning, the neurologist said that my normal MRI had eliminated everything from that mile-long list except for M.S. He ordered another examination: an eye test that would look for inflammation.
This test was neither negative nor positive.
So the next step was a spinal tap.
Everything I’d heard about spinal taps had been bad. But it was a calm atmosphere, and the procedure went well. It wasn’t as bad as I expected it to be. Yet, something deep within me shudders thinking about the procedure now: the pressure on my spine, the six hours flat on my back to avoid a spinal tap headache.
I got one anyway.
Every time I sat up, the pain in my head would creep in, an iron fist set to crush my mind. Strong pain killers dropped my blood pressure so low I could barely function, and I couldn’t take them anymore. I had to lie down to ease the pain.
Two days after the spinal tap, the hospitalist said, “We’ll do a blood patch.”
Near the end of the day, I was called down to the procedure, where blood would be drawn from my arm and placed in my spine to coagulate and prevent further fluid leakage. My headache was so strong I could barely roll from the gurney to the operating table.
My mind could barely handle the procedure. It was the end of my fifth day in the hospital, a stay filled with examinations and the emotional shock of unexpected diagnoses. I panicked. I had to concentrate all my resources on controlling my breathing.
But as soon as I rolled back onto the gurney, I felt relief in my head, the pressure gone. I took a deep breath.
Then, I had to lie still for two hours, which turned out to be worse than the six hours after the spinal tap. Pain ratcheted to a 10 out of 10, and I could do nothing but grit my teeth and pray for the clock to move faster. I couldn’t focus on the movie playing on television, I couldn’t listen to poetry, I could barely think about anything but the pain.
All of that meant an unexpected fifth night in the hospital.
The next morning, release into the beautiful Indiana summer was sweet. The ride home found me rejoicing but still with a headache that forced me to lie down across the back seat. I’d attempted to eat lunch at HuHot Mongolian Grill, a promised meal, the thought of which kept me going throughout my hospital stay, but I was forced to abandon half of my food and lie down in the booth when the headache became unbearable.
I fought the headache for the next several days, hearing no news from the neurologist. This meant good news.
During a follow-up visit with the neurologist, the diagnosis was that I do not have M.S., and the dizziness was caused by mild vertigo combined with a concussion. The concussion had occurred in mid-August, but I had completely forgotten about it. Two doctors had asked me if I’d hit my head recently; I had replied that I didn’t think so. I didn’t remember it happened until halfway through my hospital stay two weeks after the hit.
Medicine for the vertigo was prescribed. Warnings of drowsiness accompanied it. The side effects for me were so severe, so intensely tiring and mentally draining, that I had to cease taking it.
The leg pain is still a mystery.
Not too long after leaving the hospital, waves of exhaustion began drowning me. I would be in the kitchen, putting away the dishes, when a wave would hit. Dizziness would ensue, and my knees would give out, causing me to lean heavily against the counter until a chair could be brought and I could sit heavily in it. Sometimes, I can’t even keep my head up, it becomes so heavy. My knees and ankles ache so much I don’t want to put any weight on them.
Blood tests continued past my stay in the hospital. There are some possibilities, and we have a direction to strike out on. I’m waiting to hear from a couple of specialists as to when I can be scheduled to see them.
There is still more to my life than health problems, even though it doesn’t feel like it sometimes. But being in limbo and the mental strain of that has been the hardest part of this process, especially with not having a diagnosis after spending five nights in the hospital. I haven’t been able to do much work on the farm, either, as lifting and handling animals has been difficult.
It has been frustrating, exasperating, and at times, downright scary.
I haven’t known how to write about it. This has been such a frightening experience. What do I leave out? What do I leave in? Should I even try?
Now, I do write. Unapologetically.
I write about this to honor my experience, to say, I went through this, and I’m going to make it so that I can write about sheep, moving chickens, rural life again.
I will take advantage of the times of day when I can type, when I can see my sheep, when I can work with the horses.
Because as my significant otter says, “Things may be different than you thought they’d be, but that doesn’t mean they’re going to be bad.”
The Lord Reigns Sovereign, and He wouldn’t lead me here and then leave me stranded.