When I was in high school I had a teacher tell me that I would never make it in college or university. She was an English teacher. I ended up switching out of her class because I didn’t find her inspiring and also I wouldn’t have been able to get a grade that would successfully let me apply to the school I had set my sights on.
I don’t think that I will ever forget that day. We had just completed an in-class Shakespearean essay and after handing everyone’s out she told the class that we could appeal our mark. In High School, at UCC, I didn’t go about anything half way. I was involved in everything I could get my hands on and I would try my best in all of my courses. I had prepared as I could for this in-class assignment, I had re-read the play over and over to be able to skip to each section seamlessly to save time and studied my notes from previous classes. What I got was a 56%. I thought I understood the material. This had never happened in an English course before. I worked hard, I needed to fix this. I walked up to my teacher to ask what I could do better for the next assignment or if there was a make-up assignment, her response in front of my peers was, “Well if you don’t get it by now, writing I mean, you won’t make it in college or university”. I looked at her in disbelief. Did she just say that, and in front of people? I wasn’t going to make it? In life or in academia?
I remember looking down at my paper and then at her. I left the classroom and stood in the hallway for a moment. Teachers were supposed to believe in you, support you and encourage you, not put you down. She offered no constructive criticism in how I could correct it and do better, just that I would fail. Don’t get me wrong, it probably wasn’t my best assignment, but I was ready to try harder, do better. I walked down to the guidance counselor’s office, having a moment prior to entering the office of tears and feeling sorry for myself, but I had to make a decision to show her that her prediction wouldn’t be the outcome of my life. I would make it despite what she thought and said. As I asked to change my English course, my counselor said, “You must stay be positive.”
Fast forward to the London Health Sciences. I had now moved to the Neurology floor. It was overwhelming. It felt like the rooms were never-ending. In my new room I had a roommate, Gloria. She was an elderly lady who had ALS. My family came with me, huddled together in the corner by the window. My new home was cold and uninviting. There was no family waiting rooms with cozy chairs and couches to go to to take a moment to gather your thoughts and emotions. There were no garden rooftops to look out onto the horizon at the patients being wheeled around the perimeters of the hospital by nurses and family members. Seeing other people outside made you feel like there was some sort of normalcy out there waiting for you. Everything felt like a jail. The flickering lights. The tiled floor and even the walls. Another jail outside of my body, which I had been getting used to for the last four days.
For the first day, I had a young nurse named Katrina. Her primary concern was the fact that this was her last day on the Neuro floor and that she was moving to the cardio floor. This instead of bedside manner and compassionate care which I had grown used to at the Chatham-Kent Health Alliance. She failed to complete essential evaluations on me including fall risk assessment, flushing my IV and she continually used a pen test applying painful pressure to my affected limbs, specifically my nailbeds to see if there was still circulation present. I would ask her over and over again if she could do the prick test, but she didn’t listen. I couldn’t move my limbs, but I could feel everything that she was doing, including heat and pain. I would yelp in pain each time. My roommate Gloria would press her call bell and I could hear buzzers going off on her side. Five minutes would pass without anyone coming in, another five would go by and then at fifteen when I heard a painful moan so I pressed my call bell when no one would come for her to try and get someone’s attention to get help. What if something happened to her, they are just leaving her here. We are calling and calling. Does anyone care? But when I used my bell Katrina came right away, I told her it was for my roommate. After rolling her eyes at me, she attended to her. I thought if I could click my heels I would be able to go home. When I napped, I dreamed of Dorothy and red shoes. I just wanted to go home.
The next day I was waiting for my MRI. Waiting and waiting. I did this a lot. Waiting for my paralysis to diminish, waiting for doctors, waiting for test results. Once I had been brought down I was transferred to another stretcher by a nice porter. He was an amateur pool player pro and told stories of winning and of losing games and traveling to tournaments. You meet a lot of interesting people at the hospital. It was turnover, 7:00 pm, so the MRI technician had students working as well. He stayed later to see me enter the machine. Move me onto the machine because I couldn’t do it myself. I had to pull my leg along, like a forgotten sweater you bring when it is one of those Fall days. Not too hot and not too cold. A just in case sweater. But it gets really annoying to lug around when you go shopping because you have to carry it everywhere you go. You can’t leave it anywhere because you don’t want to lose it.
Before going into the chamber, she asked if my engagement ring was real because costume jewelery would have to be taken off. I remember thinking that is a funny question to ask someone. Of course, I am going to get dressed up for this and wear jewelry for you but forget to wear makeup and do my hair, however also how insulting it was. This is my engagement ring, of course, it is real. I know she was just doing her job and I was being overly sensitive but where was the compassion. Where was the kindness, did she not see what was happening to me? It couldn’t be missed, my face wasn’t exactly something you could turn away from right now.
After it was over I was wheeled up and left in the hallway for my trusty nurse, Katrina to get me safely into my room. I had to be transferred from the stretcher that I was on to a wheelchair back to my bed What she decided to do was grab my affected leg and pull it down without telling me mind you startling me. At this point, I was physically unaware of my own body movements, unable to control my left side, feeling like I had no grasp of my peripheral. Every movement was happening in slow motion and then it would snap back at me in lightning speed. When she grabbed me without telling me I couldn’t control my balance and grab something to hold myself up. “I have this. Please stop.” I told her sternly. I was done, over this. I didn’t want her to touch me anymore. She didn’t care. She was already done her shift as she clearly stated. I had almost fallen and she didn’t grab me. As far as I was concerned she was not in the right profession. There was no bedside manner, no kindness or warmth for her patients. I was determined to do it myself because if that was who they want taking care of me I was not going to get better. I managed to get into the wheelchair with the help of my Mom and Dad. Sid wheeled me in and I was put to bed dreaming of Dorothy and home.
After passing her duties onto the night nurse, she gave reports for each of us. She was telling Micah, our new nurse, our cases. Everything she was saying was wrong. The affected side was incorrect (she told him it was the right side), the date it started, how much was affected. I corrected her, but she told me that I didn’t need to worry. I thought, well yes I did. If you aren’t giving the right information, something bad could happen. My IV hasn’t been flushed in two days, I am sure that isn’t okay. Gloria and I had a wonderful nurse that night, Micah. He spoke French. Gloria was from Quebec so she took a special liking to him. I got woken up twice from junior residents that just wanted to hear my story in the middle of the night and try and put the puzzle pieces together. Sidney got to sleep on a stretcher this time. The night previous he had to sleep on the floor. The cement floor. They only had one family lazy boy chair that reclined and it was claimed. Throughout everything, it never left my side. I don’t know what I would have done without him. Looking in his eyes helped me to keep going through this hell.
It wasn’t until the next day that we had received the MRI results. Dr. George came in to discuss them with us. He asked if I had a lot of stress in my life and I explained I was getting married, I had my own business and was in the process of starting another one. He said everything came back normal which was great. What I was being diagnosed with was Convergence. He explained that due to the stress and events in my life that, this was the reaction my body was producing from the events. I was immediately devasted. I had done this to myself I thought. He told me to look inside myself to find what was the root cause and through physical therapy and therapy I would work through this. “But what about the migraines, I thought this was a migraine.” I asked. As I tried to sit up straighter in bed. “This is what we have come up with.” he said. “Well, when will it go away?” I asked, hoping at least this would be promising news. “That is something we don’t know. It could be s day or weeks. So we are going to be sending you back to Chatham to be closer to your family.”
After this, I blanked. I didn’t want to hear anything else. I continuously thought, I have had more stressful times in my life and nothing like this had ever happened before. I felt like I was in the twilight zone. I couldn’t hear anything and I couldn’t feel anything, but I could see people walking by and coming in and out of my room. I could only feel this dull stabbing pain in my heart and a sudden sadness come over me.
What was happening to me, how long was I going to be in this jail. One by one the therapists came in to close my case file. However, not without giving me their own tidbit of advice outside of their specialty. The Speech Language pathologist and her grad student came in to test what my eating capabilities were and if they had indeed improved from the previous day. I had to attempt to eat pudding. I always loved demonstrating this, at least they didn’t have me wear a bib. It brought me back to my days as a toddler, having an audience, using a spoon to catch the excess food I either couldn’t fit into my mouth or that spilled out of my mouth, taking small bites to be able to chew everything without choking and eating only soft foods. At the end of this session, she asked if I understood the diagnosis and if I had ever seen a psychiatrist. Of course, I understood the diagnosis. I was living it. I couldn’t move half of my body and I was going to be getting married in a month and a half. I looked at her as if I could have shot daggers at her with my eyes. What did she know about anything that I was going through. Her job was to help me get my speech back, not give me a mental assessment. I was holding back my tears. I was holding them back so hard my jaw was starting to hurt.
After she left a social worker entered. She was smiling from ear to ear. It wasn’t one of those comforting, everything is going to be alright smiles, it was the ‘I am just annoyingly happy all of the time smiles’. She had been in to see Gloria a handful of times so I had recognized her voice. Her uncalled for cheerful voice. Her mission and duty were to ensure that I was handling my news okay. I was still in a complete fog, silently staring down at my lap taking in the comments and my surroundings. I didn’t know where to go from here. I felt ashamed and heartbroken that my body had betrayed me like this. My family was quiet, on their phones letting me work through the process of accepting the diagnosis. She introduced herself and asked me if I understood my diagnosis, that I would be transferred back to my home hospital, which was the Chatham-Kent Health Alliance. I said yes, and repeated back what the doctor had told me. She then proceeded to put her hand on my right shoulder and said, “It’s important to remember to be positive.” Her voice ringing like church bells and, of course, smiling at the end. I am not sure if it was her putting her hand on my shoulder or telling me to be positive after everything that I had been through but a fire was lit inside of me. I looked up to her, glaring at her with an intensity and hate that I have never felt before and said, “Be positive! You want me to be fucking positive? Are you kidding me? I am 26 years old.” I then proceeded to lift my left hand up and drop it causing it to fall down. “Look at my hand. I am supposed to get married in a month and a half and I can’t even walk down the aisle. I can’t even walk by myself. Look at me. Look at my face. You guys don’t care about me. You’re shipping back to Chatham. See ya later. If you cared you would try and fix me, tell me when I will get better”. “Katelyn, that’s enough,” my dad said. Startled she looked at me and then back at my family and said, “Maybe, it’s best if I come back later.” she said and walked out.
I was sobbing so hard I couldn’t breathe. Everything spilled out. I felt like I was spewing fire and all of my feelings began to tumble out. Unfortunately, she was my target. To this day, I don’t feel bad about what I said to her because I truly feel that with her experience and education she could have chosen a different approach and words of comfort and direction. I am not really sure what she was trying to accomplish to be honest. Telling me to be positive with everything that I had going on was obscene. Tell me this sucks that this happens to you but you are strong and you are going to get through this. Tell me you have to fight show people they are wrong you can beat this. I felt like telling me to be positive was a cop out, a textbook answer to something she didn’t want to get into or relate to.
Sidney and my family took me for a walk outside. I watched nurses walking on their break, students walking to and from classes and cars whizzing past me. My eyes were puffy from crying and I could not muster any words to form an intelligent sentence as to how I was feeling. It was time to go home, back to Chatham.
Once back in the hospital room we were greeted by Dr. Cooper. He asked what Dr. George relayed to me regarding my diagnosis. I told him exactly what he said. That this had been a manifestation of my mind due to a stressful event, which is called Convergence. It was mumbled and toddler-like, but I was able to tell him everything I had been told. Dr. Cooper said no, that was wrong. He said I indeed had a hemiplegic migraine, what I had been told all along. Nerves were clamped down in my brain causing paralysis, I had to wait for them to release which could be days, weeks or months. This would be assisted with physical, occupational and speech therapy. It would also be recommended that I try Cognitive Behavioural Therapy. Relief rushed over me. I did not do this to myself. Well, I didn’t do this to myself directly. Migraines will always be a part of me, but I didn’t manifest this out of a traumatic event or stress. I was born this way. There are three genes linked with hemiplegic migraines which are CACNA1A, ATP1A2, and SCN1A genes. In any of these three genes, there are defects or mutations that lead to a breakdown in the body’s ability to make a certain protein. That protein is needed for clear communication among nerve cells. It was something that I was born with and was a part of me.
I was to go back to Chatham and start the path to recovery. Follow the yellow brick road down the journey of change and growth as a person. I knew that this event had changed me, but I didn’t realize how much it had changed me, emotionally and mentally.
I couldn’t leave without a cute picture of Ace.