On the way home, I had stopped at the clinic, picked up my MRI films, and was now sitting at the dining room table staring at them. It would be a few weeks before I received an actual diagnosis from the neurologist, but I had learned enough from numerous anatomy and physiology classes to recognize that the white spots on my brain were not supposed to be there. I was afraid my optometrist had been right, and I might have multiple sclerosis (MS.) He had suggested this before referring me to the neuro-ophthalmologist for the MRI, and these images seemed to prove him correct. This would change things forever, but at that moment I couldn’t have known how much.
I slid the films back into the purple-plastic sleeve. Falling apart wasn’t an option. I had to stay composed until Jason got home. If I broke down now, I knew I wouldn’t be able to put myself back together before he walked in. With a few hours to kill, I started cleaning the kitchen in preparation to make dinner. If I could keep my hands busy, I hoped my mind would follow. No such luck.
First, my mind was flooded with all the ‘why’ questions. Why me? I had finally put my wild ways behind me, settled down, and was focused on a solid path. The second year of my pharmacy education was starting in a few weeks, and I was looking forward to the challenge. Why us? We had recently celebrated our first anniversary; our story had barely started. We should get time to enjoy writing it. Why now? We were in the beginning stages of having our first house built.
The second wave of thoughts was about money. Jason was a contract worker at Lexmark, so he had little to no health insurance. I was a student with no full-time job, so I had none. In 2003, we were only twenty-four and had minimal savings. Our new house was only possible through a FHA loan, which made closing costs negligible. After seeing the charge for the MRI, I had no idea where we would find the money for that new bill, much less all that might follow.
The final one came crashing down, pulling me under, and making my heart seize—would Jason still want me? This wasn’t what he signed up for. I knew he said “in sickness and in health,” but sickness usually didn’t come this soon. This would impact all our future plans in some way. What if I couldn’t have kids? What if I couldn’t walk? What if I couldn’t work? Could he handle the possibility of these changes and challenges? We were already in the boat together. Was he willing to stay and row to help me navigate the rough waters ahead? Or would he jump and swim for solid land? I didn’t want him to bail in the future if the waters became choppy. It would hurt to lose him now, but devastating to lose him later. Of all my thoughts, this one scared me the most.
As my mind continued to spin, Jason walked through the door and tossed his bag down on the futon. Spotting the transparent-purple MRI sleeve on the table, his eyes immediately began scanning the room for me. By the time they locked on my face, I had already started quietly crying. Jason’s mere presence in the room had relaxed me enough to let my emotional barriers down. Instantly encased in his arms, I began creating a snot patch on his white polo. He let me cry until I began to sniffle and then gently wiped tears from my wet cheeks and told me— “Together, we can deal with whatever happens. We can do this.”
Picking up the purple folder, he asked me to explain the scans to him. We sat on the floor in the living room and spread the MRI images out in front of us on the beige carpet. I began showing him the spots that concerned me and explaining what the white areas might mean. It was now his turn to fall apart. We held each other and cried knowing these images held answers that could change our lives. When the tears finally ran dry, we spent the rest of the evening trying to avoid the five-ton elephant.
The next morning, my only task was to schedule a follow-up visit at the neuro-ophthalmology clinic to find out conclusively what the MRI showed. This not-knowing-nightmare had begun over a month ago, and I needed to wake up. Alas, I had the misfortune of speaking to a heartless scheduling lady who did not seem to comprehend the urgency of my situation. She couldn’t understand, or didn’t want to, how my life had been halted and was currently hanging in limbo. My voice grew louder and more forceful every time I refused to wait two or three months for an appointment. Every day of not knowing that passed felt like a month of my life had slipped by wasted, and I couldn’t take it anymore. Eventually, Miss Cold-Blooded dug up a date in three weeks, and I took it without hesitation and hung up.
By pushing for the earliest appointment, I locked myself into whatever opening was offered, but there was no alternative. Regrettably, this meant Jason wouldn’t be able to go with me, and I would be receiving my results alone. We had discussed this possibility earlier, and as agonizing and terrifying as this decision had been, we both knew I had to go regardless. Neither of us had slept well since my symptoms first occurred, and our sleepless nights needed to end. Good or bad, we had to know and couldn’t afford to wait.
So now, here I was three weeks later, sitting by myself in this sterile exam room’s uncomfortable tan chair, waiting to hear the official results of my MRI. The doctor was over an hour late, so I had used this time to foolishly convince myself everything was going to be okay. I rationalized he could afford to be late because my scans were obviously a false alarm, and I had been psyching myself out over a shadow on the film. Nothing was seriously wrong with me, therefore, I was the lowest priority in his book. Deep down I knew this theory was ludicrous. There was no correlation between the two, but logic had left the building. Anything like this imaginary pipe dream was fair game, so long as it kept my mind away from the “what if” scenarios.
When a doctor finally walked through the door, he looked like he was scarcely out of med school. I knew this was a teaching hospital, but didn’t that mean he needed a teacher? The tall, lanky kid barely glanced at me as he sat down at the metal consultation desk and started studying a thick, manila file that I suspected was my chart. Quickly scanning the notes, he flipped through a few sections, before turning and acknowledging my existence for the first time. Without any pleasantries, formalities, or a simple introduction, he bluntly asserted, “Well, I looked at your MRI films and I agree with the radiologist’s report—you have multiple sclerosis.” He closed my chart, gathered his things, and walked out of the room without another word.
My mouth was suddenly bone dry and swallowing had become complicated around the lump in my throat. MS was what I had feared when I looked at the images and had seen my brain speckled with white spots, but it felt different now that it was spoken aloud and confirmed. I could no longer hope and pretend that there was another, simpler explanation for my symptoms. This made it real. Final. My breathing became labored as I felt my eyes starting to fill. It took every morsel of my willpower to keep them from flowing over.
To distract myself and prevent a total disintegration, I shifted my focus to the insolent, unprofessional physician and started to get angry. Not only was he over an hour late but when he did grace me with his presence I also received no explanation or apology for his tardiness. He simply strolled in, dumped this life-changing diagnosis on me, and then moseyed out the door again. Taking no notice, or merely not caring, that I was alone, he left me to absorb the full impact of this bomb by myself. What kind of bedside manner was he taught? Wasn’t it his job, at the very minimum, to explain my new disorder and allow me to ask questions? I knew this was a neuro-ophthalmology clinic, so the doctor was undoubtedly used to dealing with mostly eye patients. However, that didn’t excuse him or allow him to treat me any differently.
At that moment, the doctor decided he had a few spare minutes to allocate to me and returned to my room. He again sat at the consultation desk and started flipping through my chart as if he had forgotten why I was there. Honestly, at that moment, I had no idea why I was still sitting there, either. When the physician did look in my direction, he seemed extremely surprised that I was upset.
“MS is not that bad anymore. I know many people with it that are getting along fine. We have treatment medications now, so you do have options. Do you know anything about those medicines?”
I stared at him in disbelief of his crassness. Biting my tongue, so I could just get this over with and leave, I shook my head. He made his recommendation, wrote a prescription, and referred me to the neurology clinic upstairs. Grabbing the script, I willed my static legs to stand up from the exam room chair and quickly left the office. My head was spinning, and I needed to be in the presence of someone who actually cared.
As I drove home, I tried to remember everything I had been taught and read in the past few weeks about MS. It summed up to...to...nothing: They didn’t know what caused MS or why it happened; they didn’t know how it would affect an individual, because no two cases were alike; and they had no idea how to fix it. So much for modern medicine. Turning into my apartment’s lot, however, I did recall one random piece of late-night research that might be helpful—wasn’t there something about an MRI not being enough to diagnose MS? Didn’t a different test need to be done to confirm it? Did that mean they may have misdiagnosed me? What was the name of that test?
Taking the stairs two at a time, I fumbled with my keys before eventually getting into our apartment and running down the hall to the computer. I found the evasive answer straightaway—a lumbar puncture. As awful as that sounded, I picked up the phone and requested the procedure. Surprisingly, I received a call within a few hours. The clinic had sent the order, and the hospital could fit me in the day after tomorrow. They had also slated my follow-up appointment with a primary care doctor for next week. It appeared I was being sent through the system as quickly as possible now; almost as if my name was marked with an asterisk signally an “aggravated/aggravating patient.” If that’s what it took, I wasn’t going to apologize.
Two days later, I was lying in the fetal position on a table, half-naked, and draped in a paper gown. The doctor told me the first shot—lidocaine—would feel like a bee sting and would numb my back. Later, when I played this back for Jason, all I could remember was it was an awfully large bee. As I lay on that table for the next forty-five minutes, I tried not to think about the four-inch needle in my back and instead just prayed that this was going to prove I had been misdiagnosed. The following week I would learn these prayers weren’t answered; I was undoubtedly living with multiple sclerosis.
Jason and I started scrutinizing and questioning all the plans we had made. Was it safe for us to have a family? Would I be able to finish pharmacy school? Work? What about traveling? We planned to go visit his family and my sister overseas—was that still okay? The single answer we received to all these questions was “It depends...” No one could tell us if I would get worse, and if I did, what to expect or when it might happen. Every answer we wanted hinged on these uncertainties. All they knew for certain was: 1) There was no cure, so I was trapped in this pitch-black tunnel for the rest of my life, and 2) I needed to start my Disease-Modifying Therapy (DMT) as soon as possible.
While I was waiting at the pharmacy for my Betaseron to be filled, I recalled a conversation I had had with my boss earlier this year. Filling an insulin prescription at the pharmacy where I worked, I remember telling the pharmacist: “I would hate it if I had to give myself an injection every day. I don’t think I could.” This wonderful jaunt down my memory highway continued as I called forth my next comments: “I would also hate it if my body quit working, but my mind was still fully functional. It would be like I was trapped inside myself.” These comments must have been too great a temptation for fate, and they broke his resistance.
This was years before the convenience of pre-filled syringes, thus that evening I had to mix my own medication prior to drawing up the injection. Jason wiped my hip with an alcohol pad before gritting his teeth and bravely administering my first shot. I had pre-medicated with naproxen and went straight to bed after the jab as instructed, hoping to sleep through any negative reactions. That didn’t happen. The pharmacy and doctor’s office had briefly skimmed over the possible side effects—fever, chills, muscle pain—but they had not fully prepared me for the agony and wretchedness of the next twenty-four hours.
First came the cramping and burning in my muscles. Lying on the bed, I curled into a tight ball and tried to will myself to sleep. It wasn’t long before I was overtaken with intense shivering, sweating, and nausea. I wanted to strip my clothes off, but also huddle under a blanket. Most crucial at that moment, however, was a mad dash to the bathroom across the hall to rid myself of dinner. When I returned, I resumed the fetal position in my sweat-soaked clothes and pulled a comforter over me. Until then, I never thought it was possible to freeze and sweat that much simultaneously.
By this point, Jason was panicking and convinced I was dying; I was hoping I would, so I would be put out of my misery. He sat vigil by the bed for the remainder of the night, occasionally checking to make sure I was still breathing. Meanwhile, I moved as little as possible, thinking this would make the pain stop. Somehow, I survived the night, and as light was beginning to sneak through the blinds, I fell into a fitful sleep. I never experienced another side effect from Betaseron after that night. Perhaps, since I had already survived them all once, there was no fun in torturing me further.
A few nights later, my dad finally called me, and I had a chance to tell him of my diagnosis. His matter-of-fact response: “Well, not surprised.” At that moment, I felt like I had been hit in the gut and my knees kicked from behind at the same time. There was just enough time to grab a dining room chair before my legs crumpled completely, and I met the kitchen linoleum. He calmly continued: “Your cousin has that, so I was expecting one of you kids to have it too. Just didn’t know which one yet.” He made it sound like I had won some prize in the genetics lottery. I was hurt by his insensitivity and callousness, but in the back of my mind I was asking myself, What did you want him to say? What do you want anyone to say for that matter?
A clear example of what not to say came a few nights later when a good friend from high school, and now my brother’s roommate, phoned. His opening question was “So, how long do you have?” I was once again doubled over, but this time from trying to hold in my laughter. MS wasn’t one of the most commonly talked about diseases, but surely people knew enough to know it wasn’t fatal...Right? I soon learned that people knew the title “multiple sclerosis” and they knew the letters “M” and ‘“,” but that was about where their knowledge and the association ended. Little did I know, I would come to rely on the explanation of MS I gave my friend that night and would have to use it frequently in the future.
One of the biggest questions hanging over our heads was: how was I going to handle pharmacy school? I had been able to go to classes for the past few weeks between my appointments because my school was conveniently located next to the hospital. However, entering the classroom now seemed like walking into a new world. The room hadn’t changed: still a hundred and forty chairs divided with two sloping aisles and a wall of white erase boards down front. My classes hadn’t changed: still three hours in the morning, three in the afternoon sitting in the middle section, second row. But I had changed: I felt I now needed to work twice as hard to prove I deserved to be here and could do this despite my MS diagnosis.
My professors were supportive and willing to assist me in whatever accommodations I may need now or in the future. They were all familiar with MS either from a healthcare, pharmacology, or physiology standpoint, so I knew I was surrounded by a group of very informed and understanding professionals. There was one, though, that strongly encouraged me to leave school. He felt it would be too much, and I should focus on and prioritize my health. I was stunned and slightly miffed that he would suggest such a thing. Nevertheless, it emboldened me to dig down deep and demonstrate to him, myself, and everyone else it wasn’t too much.
That night when I got home, there was a noticeably different spin on our dinner conversation. Instead of dwelling on what might change in the future, Jason and I made plans for how we would enjoy and take advantage of life right now. We would prepare for when things might get harder, but we wouldn’t squander any day before then. The “after” chapter of our eighteen-month marriage had just begun.
Author: Katie Yusuf
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