Uncharted Paths: My Journey with MS

By Amanda Glover

I didn’t expect so much out of that medical visit, and neither did my mother. I expected to walk out of there with a diagnosis, some forms listing a treatment plan, a medication that would fix everything, and the promise from a doctor that I wasn’t going to die from whatever was going on with me. I danced around in the hope that I’d get sent home right after the visit and get a phone call a few days later explaining the positive results.

I knew some of the plans for the visit. My mother and I were to meet with a woman in a private office to discuss insurance payment plans and sit in a waiting room for who knows how long before I’d slide into another machine where the inside of my head was to be examined for possible “abnormalities.” Which I did, at least for a little while.

I had been to enough appointments that summer and it was only close to the end of June. I had enough weigh-ins, questionnaires, vision tests, and blood pressure checks. Little did I know that that appointment would be the one that determined my fate for the next six or so days.

Given the circumstances, I found the private waiting room my mother and I were in surprisingly calming. The dark blue walls and furniture created a soothing, peaceful environment.

When the secretary told my mother the cost of sticking me in the machine, fear rattled my insides. I had never considered myself to be a financial burden until then. My hands fidgeted with the zippers on my wallet before offering to assist with the payment. When my mother declined to accept my debit card, the secretary praised me for my kind offer to help.

After the meeting and moving into a smaller waiting area, I chose to stare at People Magazine covers from three years prior rather than waste my phone battery by scrolling through Pinterest. I used the lime-green walls as an excuse to pretend we were there for a more pleasant event. But my daydreaming was cut short when a tall man with wild hair and bright eyes informed me it was time. I did not have as much time to worry about the results. I reminded myself that I was that much closer to returning home.

Once I was lying somewhat comfortably on the table, I had to remove my glasses and piercings. Before I could complain about the icy temperature of the room, the doctor offered me a heated white-knit blanket to cover me from the neck down. I was given a large pair of black headphones before being asked what my favorite genre of music was. That surprised me because the last time I was in one of those machines, the only sound I had the option of listening to was the growls of the equipment.

After requesting pop music, I closed my eyes and let the cameras or whatever was in that machine look into my brain. Regret sat with me the entire time as one of the same ten songs I had heard play on the radio for the past two years invaded my ears.

In time, my experience with the machine had finally ended. I eavesdropped as the wild-haired man and I were joined by a female doctor who stood next to him as they pointed to images on a computer screen. I knew that we were not on Grey’s Anatomy, and I was not going to understand whatever medical terms were coming out of their mouths.

“Hospital. . . emergency room.” Those words were in no way confusing…

Part of me was terrified that they had found a tumor on my brain. The other part was annoyed that I would not be able to go home once they stopped talking. I heard Doctor #1, the one with wild hair, speak to me while I was led back to the original waiting room where my mother was waiting for me. He spoke to me like nothing was wrong– and he didn’t tell his colleague that he found something on my brain that warranted a trip to the ER for who knows how long.

As my mother and I waited for whichever doctor was supposed to speak to us next, I grew envious of Doctor #1, who had just delivered the most annoying, frightening news possible. He was smiling as he left the building for the evening right after messing up my entire evening. Plus, he was able to venture out into the beautiful summer day.

“Sit tight,” said Doctor #2 after talking to us, then disappearing down the hall. My mind never gave me time to take in how handsome he was. The word “tumor” never escaped his lips, but neither did a name for what was going on with me. After he left, Mom and I sat farther away from other patients and employees. I regretted the decision once I looked up and noticed the aggressive air vent trying to blow us away.

Sit tight. That was difficult for multiple reasons. One was the patient from down the hall and her insufferable moaning. I wondered why the doctors did not put her in her room instead of sticking her in view and earshot of other patients. I looked up the moment the patient’s sounds got louder. Another doctor pushed a woman with unkempt hair in a wheelchair. She leaned back in the chair with her tank top pushed to her chest, exposing her huge stomach.

Maybe she’s pregnant, I thought. But I was just relieved she was being moved somewhere else.

Doctor #3, a tall woman with thick blond braids led my mother and me to what would be our final stop at that hospital. It was a room that was completely white, similar to an admitted patient’s. Mom took the chair in the corner while I lay on the bed. While she enjoyed whatever BET sitcom was on, I was paying attention to the dividing curtain, hoping a doctor would soon deliver good news. My irritation increasing as the clock continued ticking. I’d never been a fan of doctor’s offices. Only during simple check-ups growing up did the worst I fear was strep-throat, and at the very least the doctors there were capable of smiling sincerely and not like they weren’t being paid to do so.

Doctor # 4 was a woman who looked a lot like one of my old retail managers. The way she answered our questions and flipped through her clipboard gave off the impression that I was her last patient of the day.

Plus, she spoke to me as if I was a child who had just been told she couldn’t get her teddy bear back, “Don’t you want to feel better?”

I guess I was making it obvious that I didn’t want to be there.

When my mother and I were told we were going to be speaking with another doctor through a teleprompter, I doubted that would work in my favor. I doubted talking to a doctor through a computer would get me out of there any sooner.

Teleprompter Doctor was as friendly as a teleprompter doctor could be. All she could do was her job while showing as little emotion as possible. I didn’t care because all I thought was, I’m one step closer to being able to go home. She spoke to my mom and me as we sat on my bed facing the monitor. My mother was all too quick and eager to tell someone else once again the story of how I got to where I was in that hospital.

It started on a road trip to Pittsburgh, Pennsylvania for another family reunion. It might have been normal to get sleepy on a long car ride, but I was exhausted during the entire five days away from home. My family and I had done the ten-hour car ride to Pittsburgh many times. My usual way of road-trip entertainment involved headphones, books, and daydreaming. That time, they pretty much all involved sleeping.

I had been dizzy and light-headed before, but the way I was moving, a stranger would have thought I was either drunk or hadn’t eaten in days. I was not taking summer college classes, so it wasn’t stress related. I had resorted to the possibility of me not eating enough, or the car ride had taken a lot out of me. I napped at every relative’s house we visited for the whole trip. I slept on so many different recliners and couches. You must’ve had a long drive over here. You must be doing a lot of work back home. Are you alright? Are you feeling okay?

I got asked almost every time I woke up.

On the drive home, I started noticing how blurry things had become. The traffic lights had expanded, and the words on my cell phone had blurred together. I’ve worn glasses since eighth grade, so I assumed my eyesight would change again…

After my mother and I finished telling the Teleprompter Doctor all of my symptoms, she decided to focus on the problems with my vision. She did tests like “cover one of your eyes, and tell me how many fingers I’m holding up.” No matter how proud I was of myself for cheating on her little tests, it wasn’t enough to save me for all that came next.

I’d heard of multiple sclerosis before, but I had no idea what it was. I assumed it was some hereditary illness that middle-aged women got just for being middle-aged women. It wasn’t a diagnosis but a suggested possibility by Doctor Teleprompter. She informed us that I would have to have more tests done to be properly diagnosed. That meant I still wasn’t going home.

“How many more tests would have to be done to get some answers,” my mom asked, doing her best to hide her irritation with our lack of answers.

“Lots and lots of tests.” That was our answer and my ticket to an undecided hell.

As I lay in my white bed waiting for the next doctor to tell me more bad news, I kept my eyes trained on the door outside my room leading downstairs. Mom and I could’ve walked right out and gone home. I didn’t think that I was dying, so I contemplated continuing to live my life not being able to properly see out of my left eye, walk straight, having constant fatigue, and hand tremors. I chose not to make a break for it and went on wallowing in bed. I just didn’t realize my mom and I had been asleep in that room overnight.

The plan was for me to get transferred to a different hospital that was more equipped to assist me and be admitted for a few days while they figured out the plan for me. The experience did not leave me with a clear memory. Therefore, I barely remember putting on the hospital gown before being transferred. I just remember leaving the first hospital.

My mom and I were introduced to two female EMTs around my age who were to transfer me out of there. Mom was to follow us in her car to the hospital. The first was African-American with long black and burgundy braids; she was the one who ended up driving. The second was Middle Eastern with a long straight black ponytail. I spent more time speaking to her on the ride to the next hospital. I could tell she had a nice smile, even though she was wearing a mask. It wasn’t hard to focus on. She sat across from me in the back of the ambulance. I was able to get a better view of her ID badge. I spent more time looking at her picture on the badge than remembering the name under it.

I found out how much the second EMT and I loved writing and reading. I wished the ride was longer so we could learn more about each other. That’s saying a lot, because small talk with strangers, especially when I’m somewhere I don’t want to be, does not always work in the stranger’s favor.

Considering I didn’t feel or look my best in the white-patterned hospital gown and the shy version of myself that resurfaced, I refrained from asking for her contact information. She talked about what she liked posting on her Instagram, but I didn’t have an account at the time and could not suggest we keep in touch that way.

“Maybe I could visit you in your room sometime if I’m around,” she suggested, referring to my future hospital room. I couldn’t tell if she was serious, but I still smiled behind my mask.

“She doesn’t want you visiting her,” the first EMT laughed. Little did we know that the COVID-19 pandemic had banned hospital patients from having any visitors.

I was glad I entered the hospital somewhat discreetly, but the sun was still as cruel as ever. I saw no other patients, just doctors and nurses. On every side of the elevator the EMTs rolled me into was a mirror. The second EMT and I continued talking about our lives to each other’s reflections. When I was not looking at her, I was forced to confront my reflection. The thirty or so minutes I spent with those EMTs was the most I had smiled in two days. As she wheeled me down the mauve-colored halls, I studied the framed pictures of employees on the walls. I did not see her picture, so I feared I’d forget her name and never get to talk to her again.

When their jobs were finished and we said our goodbyes, I was passed to another young woman, who wheeled me away. Once I got settled in my new room, my mother and I said, see you later. I felt like a college freshman saying bye to her parents after being dropped off at her dorm room, and I grew sad as I watched her walk to the exit. The beautiful, sunny day now mocked me as I returned to my sad, lonely room.

I don’t remember every single thing I did while in the hospital; I blame trauma and whatever medication they had me on. When I wasn’t being poked for blood, asked a million questions about everything, or having my blood pressure checked, I’m assuming I was catching up on sleep. The bed was protected by guard rails. When it was super late and I needed something to help me pass the time, I kept the TV on. I only spent one day being able to watch Disney before something changed with the remote and my only entertaining watch option was “Family Guy.” I kept my purse on the soft pink swivel chair because I needed it to be close to me at all times.

The food I was offered was nothing short of a tragedy. The smell released when the top of the tray was opened contributed to me throwing up twice. Big chunks of brown slime that tasted like a combination of every food group, meat that was dry and tasteless, and “dessert” that tasted like a cruel joke. Even now, I can still taste the one forkful of “chocolate” cake I ate. My dad brought me jerk chicken, rice with vegetables, and baked plantains from our favorite Jamaican restaurant. I felt bad barely eating it, but I no longer had an appetite.

On my last day there, a doctor wheeled a tray of food into my room. I did my best to hide the fact that I was covering my nose to shield the smell. Because I didn’t eat for almost five days in a row. Instead, I’d filled up on ginger ale, orange juice, and water.

I wished to look extra special that day, so my mother dropped off one of my favorite red knit hats and dresses. I hope that hospital gown has since been set on fire.

I wasn’t diagnosed with multiple sclerosis until maybe a month or so after I left the hospital. While on the hunt for the best neurologist in my area, I stumbled across an uncaring, insensitive, and forgetful dimwit of a neurologist who barely remembered who I was on my third appointment with him.

Amid the trauma, and my mother’s extensive research, she found Dr. Miracle. This was and still is the neurologist who changed the game on how I was treated for multiple sclerosis. He is also the reason why I can use both of my hands to write my story. He also remembered my name, which was a huge plus. Unlike Dr. Dimwit, Dr. Miracle asked questions that proved how much he cared for my recovery and that he had a plan. Because of him, I am receiving a medical treatment that allows me to move like I did before my diagnosis.

While the nerve damage to my left eye caused by my multiple sclerosis is irreversible, I barely notice it these days. Unless I close my right eye and only look through the left one, I forget how much my vision has changed.

Considering how far I’ve come since my diagnosis, it’s hard to believe it’s been four years. I’m forever grateful to Dr. Miracle and my family for helping me get where I am today. My neurologist and optometrist continue to give me the attention and compassion I wished the doctors had given me before my diagnosis. Knowing that there were (and still are) medical professionals in my corner during one of the most frustrating and nerve-wracking times of my life helped give my family and me hope while on this uncharted path.