“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson
First, a little bit about myself. My name is Jill McFate, I am thirty-nine years old, and my wife and I live in Chicago, Illinois, specifically, in a neighborhood known as the West Loop. While I grew up in Bettendorf, Iowa, Meghan was raised and trained for a life in hockey in Oil Springs, Ontario. To say she was born with hockey in her blood is an understatement. I couldn’t be any more different; I have always thrived on education, learning and am almost sponge-like in the way I soak up new information and knowledge. This is the part of me that truly became enlightened and sparked the warrior in me when I became sick; the part of me that was constantly striving for answers, for an explanation, to understand how this happened, and what exactly happened. It was devastating how long it took someone to believe and understand me, to validate that something was wrong and I really was sick. With each dismissive response, instead of retreating, I constantly pushed and challenged my doctors, took my notes with me and read to them describing what I could or couldn’t do, what was happening to my body, to my life. Instead of giving up, instead of believing them, I used every last bit of energy I had to get to Mayo Clinic. I am so thankful I found the strength and motivation in me to do this. My life, my warrior strength; I became my greatest advocate.
From the time I made a self referral to Mayo, it was less than two months later that I was embarking on the journey to Rochester, Minnesota. For those of you that don’t know, you can call Mayo Clinic’s general line and refer yourself. You will need the help of your local doctors in getting all of your medical records, slides and images to Mayo, and it helps to give your local doctors advance notice. The process of medical record requests is very archaic and time consuming, but just remember, once you give consent, these are your documents and you legally have the right to tell institutions where and when to send them. Do not let anyone tell you otherwise.
I strongly recommend anyone thinking of getting a second opinion, to go to Mayo to have this done. I eventually got here and had no idea how this place would remarkably change my life. In about a week and a half there, after a year of suffering, I was diagnosed with functional movement disorder. I had never heard of this disorder before and, so naturally, I tried to do as much research as possible. One of the things I learned is that functional movement disorder is overwhelmingly not documented in the medical community. From my understanding, research and experience, it is a disorder within the brain, that prevents the brain from being able to communicate with the muscles in instructing what muscle to move and in what sequence when you try to do anything: a step, raising your arm, sitting up, standing. Ultimately, because the brain loses this capacity to instruct, every single muscle in your body fires off when you try to do any kind of movement. Personally, through my diagnosis and recovery, I learned this disorder can cause a lot of damage, but can be corrected very quickly and easily with the right therapy program. With continued education and research and the right amount of initiative, Mayo created just this type of specialized therapy, known as behavioral shaping therapy. I saw tremendous success in completing this program and, with hard work and dedication, have since seen further improvements in strength and endurance.
Another thing I learned about functional movement disorder is that every patient has a different story leading up to their diagnosis. And so, because of this, I would like to tell you my story.
We begin in October 2015. Actually, more specifically, on October 5, 2015; a day that brings about feelings of trauma, but also naivety, as I had no idea the road ahead of me, the way my life was going to change so entirely that I would not even recognize myself or my own body. It was a Monday and I had just been at work the previous Friday. This particular week in Chicago was beautiful, having a stream of bright sunny days with above average temperatures in the 70s and 80s. I knew this as I continued to watch the news on the little, yet bulky, out-dated TV mounted in the corner of my small, window-less hospital room. I was hospitalized for four days due to an acute colitis infection or, in other words, a massive colon infection. Four days may not seem like a long period of time, but these were some of the longest days of my life. Not being able to get out of bed, barely able to eat, drink, sleep or shower, extremely sick, having my blood checked every three hours due to abnormal hemoglobin levels and tied to an IV and monitors, made every minute seem like an eternity, especially since prior to this I felt like my normal, healthy, active self.
My mom drove up from Iowa and stayed in the hospital with me every day; it was so nice to have her company and conversation, at the expense of her discomfort in the small, straight back chair she was sitting in. In between our conversations, my dozing off, nurses and doctors constantly coming and going, she provided an extra layer of reassurance; being a retired nurse, she was able to answer all of my inquisitive questions about what the doctors were doing and why and everything they were either talking about amongst themselves or asking me.
Meghan and I were also talking multiple times a day, and she made it her top priority to ensure I felt her unconditional love and support from over 1,500 miles away. With Meghan living and working in Calgary, Alberta at the time, we were smack dab in the middle of a long-distance relationship and, up until this point, traveling all over North America to see each other. What is amazing is that while our relationship turned into one of a patient and caregiver during this illness, it did nothing but make us closer and our bond even stronger. I could not be more grateful for the gift of our relationship and, now, our marriage. It was one of the many motivators and sources of strength for me during the battles in getting my life back.
My mom and Meghan were, incredibly, both equal caregivers at different points during my illness. Especially during the beginning, when the weakness took on a mind of its own, eating away at any kind of strength in my body. The ability to live independently or even by myself was slowly slipping away, as each week passing me by I saw one more obstacle to my life: not being able to walk, my legs giving out on me regularly or collapsing on me entirely; not able to stand up long enough to prepare meals or even lift a bowl into the microwave; not having the stamina to dress or even comb my hair after showering. These two amazing women established a newfound relationship and trust within each other, aligned with the same goal of taking care of me and being the arms and legs that mine weren’t.
As the weeks turned into months, I found myself lost for the summer like days before I got sick, often thinking about that last Friday at work or the last trip Meghan and I took that was symbolic of my being and feeling normal. It seemed so far away and so out of touch with my reality, my new normal. Bundling up to go to appointments in the middle of winter, with snow and ice on the ground and the harsh Chicago winds spitting cold air and whatever else into my face, it was hard to reconcile how I got here, how I got to this point. I was practically disabled, at this point walking with a cane, so slowly and with great difficulty due to a paralytic gait. The same streets I used to run on I could now barely walk. It was hard to look at my neighborhood, the city, with this new perspective. Everything seemed different; this city that is our home now all of a sudden seemed unrecognizable, foreign, hard to know how to navigate. It was perplexing and anxiety causing, sometimes inducing panic attacks when it was time to leave, requiring more and more confidence as I inched closer to the door.
It is hard to put into my own words for your clarity, but I’ll try: My stamina and fatigue were failing and at a rapid pace. Walking more than a couple steps anywhere was a chore, something I would have to gear up for mentally and physically. The hallway from my condo to the elevator was all of a sudden too long and there were days I could not make it without clinging to someone or leaning against something, often times the wall itself. Within a couple minutes of walking, it became painfully difficult to do so, as if I were trying to walk through quick sand. My legs would stiffen up within minutes, my knees would lock and I essentially became Frankenstein; at least this was my visual when this started to occur. At the same time, my skin and body would begin to hurt, as if my entire body was one bruise. My muscles throbbed and burned so badly I had to look at my legs to ensure they weren’t blood red or had swollen to the size of tree trunks.
The worst part was not knowing how this happened or what was continuing to happen to me. And I wasn’t sure how I was going to figure this out when there wasn’t a doctor within a 50 mile radius that believed me, understood and recognized what was happening and had any kind of explanation or diagnosis. And without any of those answers, a plan or any kind of treatment did not exist.
Depression. During the first stages of my illness, this was the consensus from many doctors after undergoing multiple tests, scans and blood work panels that all came back normal. Did you have a nervous breakdown; have you experienced a severe amount of stress; have you ever taken antipsychotic drugs. The notes I took with me to every appointment described physical and muscular symptoms and doctors were trying to uncover a mental illness or instability in order to diagnose them as psychosomatic. They improperly came to this conclusion because science and their test results told them it was okay to suggest depression; it empowered them to be able to utter this word, this diagnosis, and it gave them assurance that they found a reason, a cause, and that they did their job. They had no other knowledge or data to convince themselves otherwise and so they shifted the problem to me, to my mind, to my instability that was the cause and, therefore, my problem to fix and deal with. Which is most likely a good reason why mental illness has such a stigma in this country and why people who suffer from this striking and debilitating disease are scared to face this diagnosis head on. Doctors throwing around this word when their labs and tests show no other proof of a condition is devastating and doesn’t help, at all, those who suffer from depression.
In time, I slowly began to realize my doctors were neither listening nor looking at me; they weren’t even watching me walk, which was probably the most important key to this whole diagnosis. But I was tired of getting blank stares and perplexed looks, tired of stumping doctors, tired of doing so much research on my own to try to solve what was happening to my body. Why weren’t they trying as hard as I was to figure out what was wrong with me? Lost and confused, I was running out of places to turn, but still kept plunging forward, continuing to push and figure out where to go next. The condition I was in, the physical weakness that gripped me, while overwhelming, the warrior deep within me refused to be quiet, refused to give up, refused to accept the status quo that the doctors were too eager to accept. This inner strength within me was a growing fire that kept providing me the motivation I needed to take the next step, regardless of answers or not. I knew at some point there would be an answer, which would provide treatment and, with that, the gift of getting back to the life and people I loved so much. My life, my warrior strength.
My next push saw me challenging doctors to think in terms of a neurological path, rather than letting them settle on depression or anxiety. With that, I was referred to a neurologist, a doctor who specializes in the kind of symptoms and issues I was experiencing. At my first appointment, I had a written statement accounting for the months preceding our appointment. I told my story in my own words, trying to remember every relevant and important detail as best I could. I find it so much easier to bring notes to doctors, so you can plow through your story, no matter how long and, as long as you keep speaking, they essentially can’t interrupt you with questions and, hopefully, they are listening to every single detail. I started to have the realization that what was happening to me was quite abnormal, as my neurologist was quite horrified at how ill I was while in the hospital and was also shocked at the current state of my weakness, which apparently was not any stronger than gravity. Not any stronger than gravity: as in my body could not withstand the weight or force of gravity. Those words hit me like a mack truck and in short, summed up what was happening to me.
Again, I went through numerous tests and scans and, at the end, my neurologist arrived at the same conclusion that every other doctor had come to; they were all considered normal. Not knowing what was really going on, my neurologist deemed this to be a critical illness myopathy, a muscle disease in my proximal muscles that appeared to be a complication from the initial colon infection. While he was typing up these notes on his computer, I started looking around his small office and first noticed various Chicago magazine covers framed on the wall to my left, naming his practice one of Chicago’s best. I also noticed they were all hanging slightly crooked, so they probably hadn’t been touched in a while and so, I wasn’t sure the exact years that were being referenced. Medicine is like technology, continuing to be updated by the latest information and research. I couldn’t help but wonder what was the most relevant here: his information and research or these recognitions? I was sitting in a chair just slightly off center to his desk and a bit further away from a wooden bookcase. I started looking at each shelf and became acutely aware of all his family pictures and volumes of books about all the different neurological disorders. It was like an encyclopedia collection of disorders and yet none of them focused on myopathy. My mind wandered some more and became flooded with questions. Even though I had a word to explain what I was going through, none of it actually made sense and I couldn’t identify with it. How does a colon infection lead to a muscle disease and, was I critically ill in the hospital? What is a critical illness? And what in the world kind of infection causes this? Did I still have an infection? How long would this last? I had no clue, and to be honest, neither did a lot of my doctors.
At this point, it has been months and my short-term disability was running out, leaving me no choice but to apply for long-term disability. I was eventually approved, but getting to that point and the entire process of disability insurance was nothing short of a living nightmare.
To step back a little, just after being released from the hospital, my doctor did not want me to return to work for about a month. This seemed realistic, as I was still recovering from a major infection, could barely walk or care for myself and my energy was non-existent. Things were pretty bad, but I did not know how bad things could really get until I was forced back to work by insurance, almost three weeks earlier than what my doctor wanted.
Meghan took some time off from work to help me with daily activities: feeding me, helping me in and out of the shower, helping with laundry, groceries and cleaning. She knew as well as I did how incredibly sick and weak I was. We were both beside ourselves with this news when the call came. Insurance called me to tell me they did not agree with my doctor and were essentially rejecting the date my doctor instructed me to return to work. I picked up my notebook and pen, like I always do when taking calls from doctors or insurance, and proceeded to write down their exact words to ensure I had all the facts. I couldn’t believe it; how can insurance decide not to listen to a patient’s doctor? I thought I was safe and then all of a sudden I wasn’t. I felt betrayed, alone, scared. Then the panic and desperation set in and I was terrified of the thought of just one work day, getting ready for work, getting to work. I tried to convey this to them, explain my illness and my symptoms, to reason with them, pleaded with them to please listen to my doctor, but their ultimate decision resided on the fact that since I had a desk job, walking was not part of my job description. I must admit my jaw did drop at the mere mention of this and wondering what kind of inhuman robot I was talking to on the other end of the line. In my entire career, I have never read, nor wrote into, any job description where walking was a requirement. And I will tell you why: because walking is an assumption of every day life and being able to take care of one’s basic human needs, being independent and able to get to and from work every day, something you do not think about, a given. I could not do any of this. My mind was racing, panicking and I could barely believe their justification until the next sentence came: disability is not vacation. At that point, I knew any more energy spent on this conversation would be a waste, as I was just a number to them, not a person and definitely not a sick person. They simply did not care.
I knew I needed help and needed it now. I had no idea what that even meant or how I was going to make it happen. But this was my life and my body. I was so worked up, that I laid back against my couch and noticed how sore my upper back and shoulders were. I put my little notebook down and released my pen from my hand; I wasn’t really even aware of it until I realized I was clutching it. My body was burning and I was tired, but needed to push through and find the help I needed. My life, my warrior strength. I stepped up and paged my doctor so I could talk to him immediately and describe how it was not physically possible for me to work a full-time job with what was happening to my body. In an attempt to help me through what would be an extremely difficult time, my doctor put me on a rehabilitation work schedule, in which my work hours were drastically cut each day. It really did not help; the next month and a half to two months were a complete and total disaster, or as one doctor put it, “an epic disaster”.
When I was at work, I can’t really remember what I worked on. The most harrowing details were those of getting to work and to my desk. When either my mom or Meghan couldn’t drive me, I relied on Uber to physically get to work. I found myself grateful for living in a city that provided access to Uber; however, living in a larger city made it all that more difficult to get from one place to the other. I can’t tell you how many times I would be waiting for Uber to pick me up, while they were fighting off traffic, couldn’t find my location, or, worse, dropped me. The city that I knew and loved made it impossible to navigate. And these were just some of the obstacles in getting to work. The task of trying to get to my desk was humiliating and functionally excruciating. I became so acquainted with the details of the walls and the artwork that would get in my way when trying to cling to the part that didn’t have an exposed picture in my path. It was such a clunky and long path to get from the entrance to the elevators. From the elevator up to the fourth floor, I would need a break before attempting to get to my desk. If I didn’t take a break, there were times I would end up in a heap, collapsing from sheer physical weakness. You see, these were some of the longest walks I was functionally and physically asked to do since becoming sick and extremely weak. I would either sit in empty conference or training rooms, or, when they were filled, I would simply rest against the wall. At times, people would even have to grab a roller chair to get me to my desk. I felt relief just getting there; I would rest and then try to get some work done before gearing up to do this process all over again. The act of doing this every day, or lack thereof I should say, brought about intense feelings of trauma. I felt like I wasn’t able to be myself and was losing my purpose, my identity, and I really struggled with that. More so, because I still didn’t have a good grasp on what was happening to me.
This every day process when I was attempting to work really slowed me down, and I can’t even describe the unbearable pain I was in. My entire body throbbed all over, I could barely move and I knew I couldn’t continue like this. Subjecting my body to this kind of trauma every day was going to send me right back to the hospital. I needed to gather my strength for the next push, the next path to find a diagnosis and treatment. I had a life to get back to.
The next part of my journey took me to the Rehabilitation Institute of Chicago, the place I was at for a period of time prior to getting to Mayo. I met with a physical medicine and rehabilitation doctor and, to be clear, this was one of the doctors that helped to save my life. I am so grateful for meeting her and being under her care and compassion. My mom and I met with her for almost 5 hours in her small office. The walls were sterile white and, while there weren’t a lot of pictures to look at, I remember looking out the window to the east and seeing Lake Michigan, with her blue green waters. We had an elevated view and it was the middle of winter. I remember the lake having a contrasting view of the parts that were frozen and those that weren’t. This created a cliff-like effect about a quarter of the way off shore. It was stunning. I couldn’t help but think of that cliff as representing my life before and after becoming extremely and suddenly sick. It was such a swift and concrete change. Before, I was at work, heathy, active, strong; and now, I found myself so physically weak, I couldn’t even take my coat or boots off, could not get up on the examination table for my strength tests, could barely lift my legs off the chair or walk across the small room in my walking test. Witnessing this, my doctor had no choice but to recommend long-term disability, stop work entirely that day and immediately start physical therapy. I was so exhausted physically and mentally, I just broke down; I felt so out of control of my body and situation and was in so much pain that every fiber of my skin, body and muscles burned and hurt so incredibly badly. My body was literally failing me and I still did not have much clarity or reasoning as to why or how this could have happened. When we got back home after this appointment, my mom took a video of me attempting to walk from the elevator to my condo, just in case disability insurance rejected my case for long-term disability and mentioned again that walking was not a requirement. But this time, they didn’t deny me.
Going into February 2016, too weak for land physical therapy, I began hydro physical therapy in a rehabilitation pool and progressed to land physical therapy by May 2016. Still on long-term disability, my new full-time job was physical therapy and recovery. I was grateful to find a new purpose, something to shape my identity for this phase of my life. I was religious with my exercises and new regimen, the warrior in me motivated to recover and get my body back, get back to work, goals aligned with a normal every day life. I tried to remain as positive as possible and focus on our life and what we would do when, not if, I recovered and got my life back. However, the improvements I noticed were small over long periods of time, I was still battling fatigue and low stamina and my walking and gait were not improving no matter how often I was able to do my therapy and exercises. Not only did doctors fail to uncover a diagnosis, they also couldn’t explain why I was not improving, let alone getting worse. Things continued to derail and get worse until August 2016 found me in a wheelchair, unable to walk and being discharged from RIC’s physical therapy program. Because I wasn’t making any kind of progress or improvement, they determined they weren’t able to help me. So here I was, with no plan, no treatment, no direction, and my prognosis was getting tragically worse. I was going in the exact opposite direction I needed to.
The glimmer of hope and shining moment we experienced during this time, was that Meghan accepted a full-time job with the Chicago Blackhawks and would be moving from Calgary into what is now our home in the West Loop neighborhood of Chicago. It was the exact win we needed. We got engaged and planned for a long engagement since, at the time, I wasn’t exactly going to be able to walk down the aisle or do anything that required stamina and energy.
To say I had gotten to the point where something drastic needed to be done is an understatement. I was not only desperate for answers, I was desperate to see improvement and get my life back. I had gone through so many tests and procedures, and all my results were normal. I had gone through extensive physical therapy and gotten worse. I thought, how is this possible, how could I end up in this condition with nothing wrong with me. Not that I wanted something to be terribly wrong, but I was looking for a diagnosis so I could get started on a treatment and recovery plan that would work. My family and I started talking second opinions, and I knew I didn’t want to look up another doctor in the Chicago area just to be told again that there is nothing wrong with me. I instinctively knew that if I were to get a second opinion, it would need to come from Mayo. And so that is what I did, I pulled the last pieces of energy within me and put them all together for one more push. My life, my warrior strength. I made a call to Mayo and by some miracle, a nurse picked up the phone, no automated message or answering service. I talked to this nurse for a while, told her my story and, at times, choked up trying to get the words out to describe what had and was happening to me. She was so patient with me, told me to take all the time I needed. It was exactly the words I longed to hear. It was as if she wrapped her arms around my fragile body and gave me the comfort and understanding I needed at that exact moment. I slowed down, took several deep breaths, and proceeded to tell her my entire story, from the first day I was hospitalized to what led me to pick up the phone and call her. It felt like an amazing connection, as if for the first time I was actually being heard that I was indeed very sick. I told her I didn’t know where to start; internal medicine, neurology or even infectious disease. This was an automatic response. I had become so accustomed to figuring things out on my own and managing everyone else’s confusion, that when finally it wasn’t my problem to solve, a wave of relief washed over me, releasing the weight of the struggles of the past year. It was at that very moment a hand-off, the most important one of my life. I was able to turn over everything I had endured for almost a year, all my pain, trauma, trying to navigate life, my lack of diagnosis, not feeling heard or validated, feeling scared and lost, to Mayo, and they just knew what to do. This was the start of a new beginning for me, the start of me getting my life back. It was nothing short of a miracle. Something I will never forget and always be truly thankful and grateful for.
Mayo had decided I should start with neurology, and 8 weeks later, on October 4, 2016, I had my first appointment. Life is funny how it works out; almost a year to the day I started this journey in one hospital, I found myself back in another hospital, but for very different reasons and completely different outcomes.
I was, again, sitting in front of a neurologist. From the start of our appointment, there was something about this one that felt unlike any other experience in the past year of my journey. I can’t put it into words; it was more of a feel, an energy, a common ground of understanding and compassion, a confidence that this was my turning point. In preparation for sharing my story, I decided to write it out in a detailed timeline, to ensure I didn’t miss anything. It ended up being six pages; as I read my entire story aloud, she was extremely patient and compassionate in listening to me, handing me tissues as I needed them, not rushing me, allowing me to breathe and stop when the words became too much. Page after page flipped over and she wanted to hear everything, every tiny, little detail. She diligently took notes as I spoke. As I flipped pages, I could hear her also flipping pages of her notepad. We were a team, working together. After she was done asking me some follow up questions and examining me, she asked me to do something not many doctors had asked of me during this journey: she asked me to walk. I flipped the sixth page of my story over and came back to the first page, the act feeling symbolic of coming full circle, almost one year to the day of the story of my illness beginning. I put my story in my bag, wiped my eyes and put my tissue down on the bench we were sitting on. My cane was laying against the bench, by my side; I grabbed the handle and slowly stood up, took a deep breath, exhaled, then walked across her office.
I saw a recognition in her eyes and, after the second walk across her office, she expressed her belief that what I had was functional movement disorder. She proceeded to tell me in reviewing my prior medical records, tests and images, she already had an idea of this diagnosis. Before even meeting me, she had an idea. She then went into detail explaining the disorder and the symptoms. The more I heard, the more I identified with this name, this diagnosis. It was the first time an explanation felt real, that it told the story of what was happening to me, to my body. Answers I have been searching for and craving for so very long. There was finally hope, finally a path and direction to a plan, treatment, recovery and getting my life back.
The next step of this process was meeting with a physical medicine and rehabilitation doctor, to determine this was in fact the right diagnosis. It was confirmed and I was scheduled to begin Mayo’s behavioral shaping therapy program that helps to correct functional movement disorder. Within a week of completing this program, I had lost the need for a wheelchair and my cane, was able to not only walk, but run, jump and do some basic exercises using my arms and legs. This was the exact point of the cross roads for me; the end of the journey of my struggles and the beginning of recovery and getting my life back.
The warrior in me always believed one day this goal would be achieved, never gave up and constantly pushed me towards the next step, becoming my best advocate when it seemed no one else would listen to me or identify with me that there was indeed something wrong. My warrior strength, rising up at times I needed it the most, when my energy seemed to virtually hit rock bottom. In turn, this is my message to you: to never give up, to always listen to your mind and body and to follow your natural instincts, to feel identification and the emotions surrounding you when a doctor tells you their opinion, their belief. You know your body better than anyone else in this world and it is up to you to protect it, to be its best advocate, its shining light even in the face of the darkest moments. I plead with you to never give up, to never settle for an answer you don’t truly believe in and align with, to always choose light and life over anything less. Trust in yourself and trust in your strength coming to you. I promise you it will. Because it is your life, and it will be your warrior strength.