When you hear ‘lifelong friend’ the words that come to mind may be soul-mate, partner, best friend, or spouse. Those words might make you think of Valentine’s Day, which is when I met my new ‘lifelong friend,’ Multiple Sclerosis (MS). Like any relationship, my relationship with MS didn’t happen in one day, but began to progress a month earlier.
I returned to college in January and, although I was dreading the hard days of preseason lacrosse training in the weeks to come, I was excited to start a new semester. During our first week back at school students were given the week to have captain’s practices, which is less time and pressure than practices with the coaches. This way, we have time to adjust to being back at school and the start of classes. In spite of a having to complete a punishment jonsie run (the worst run ever), that week captain’s practices were enjoyable. They were a light and no pressure way to exercise and play lacrosse with my friends. At the scrimmage on Friday I subbed myself out because my left arm was tingling intensely and I went inside to speak with the athletic trainers. The trainers looked at my arm and conducted some range of motion tests. Then they set me up with a stem and heat treatment. The trainers sent me home, but asked me to come back the next day for the same treatment. I followed this routine everyday for the next 5 days. Throughout this time, the tingling only got worse and my ability to move my arm decreased tremendously.
Soon a new feeling came about, anxiety. I now had this overwhelming feeling that Division 1 lacrosse was too much, college in general was too much, and all I wanted was to be home with my parents. In addition to my newfound feelings of anxiety, my arm was basically paralyzed. I was unable to practice during this time and this caused me to miss the first official practice of the 2017 season. I often spoke on the phone and cried to my parents. I asked to come home. The following weekend, that is exactly what I did. When I was home for that weekend, I was still experiencing overpowering feelings of anxiety and my arm remained paralyzed. I had no idea what to do.
I returned to school on Monday and settled back into my routine of going to class, seeing the trainers for treatment, and observing practice. At this point the trainers sent me for an X-Ray of my shoulder and arm. This was strike one because the results came back normal, yet my arm was still limp. I decided to see my hometown orthopedic because he was trusted by my family and I thought that he may have some answers. The orthopedic also examined me and sent me for an X-Ray. Again, the results were normal. This was strike two. However, he then suggested an MRI of my spine, and the results showed an abnormality. I was sent home that day with some new information, but many questions were still left unanswered. All I knew at that point was that there was an abnormality on my C-Spine MRI, I needed another MRI and they would have me meet with a new doctor. Slightly relieved that I was starting to get some answers, I returned to school and relayed the news to my coaches.
The whole time I had been thinking that whatever was going on was muscular and related to a lacrosse injury. When I returned to the doctors for my next MRI, I found out it had to do with my brain. Now I began to worry that this wasn’t a simple lacrosse injury. After the MRI I met my neurologist and she asked me a few questions, took some blood, did a few physical tests, and then says she wants another MRI of my brain but this time with contrast. So I proceeded with that, and then returned to school with an appointment to see the neurologist again that Monday. It was a typical week at school. I played catch up in my classes, since I had missed so much due to doctor visits, I observed practice, and pretended to be a normal college student.
Monday, February 14th arrived and I showed up to my doctor’s appointment with not one nervous feeling in my body. I figured they were going to tell me what was wrong and fix my injury, simple as can be. They called my name, I walked into the office and sat down to wait for my neurologist to come in. Starting at this point, I don’t remember what happened. This is when the neurologist told me that I have MS, but I had no idea what that meant. All I knew was that she ordered me for high dose IV steroids over the next week and she said that it would help my arm. She arranged a nurse to come to my apartment at school the next day. She explained that the nurse would set up my port and that this port would stay in me for the next week. All I had to do was connect my IV bubble of steroids and wait 2 hours for them to drip into my body. None of this registered until the appointment was over and I was in the car reading the summary that stated "Grace's Diagnosis: Multiple Sclerosis." My dad was telling me everything was going to be alright and that we would work through this, but I figured he was just saying that because I was upset my arm was limp and I was missing my first game of the season. After he got me my favorite meal, I was on my way back to school but first I stopped at my favorite beach spot and googled MS. The first words I saw were ‘Rare, treatment can help but there is no cure.’ That’s when it really hit me. It was this very moment that I met my lifelong friend, MS. I did not choose nor want this, but I was stuck with it.
The months following my introduction to MS, I felt apprehensive about telling everyone what was wrong with me. Clearly everyone who saw me at school knew something was up. I was sitting out of practice, I was in and out of class because of appointments, and not to mention I got high dose steroids everyday so my face was blown up like a puffer fish. In addition, my mood swings and appetite were on a whole other level. It was now April and not only was my arm still limp, but now my eyes started to do this thing as if they were dancing in my head. All of this made school and lacrosse insanely difficult, so my doctors told me that until my health was under control to withdraw from classes. I did, but by doing this I lost being able to be apart of my team. I was no longer a student and therefore I could not observe practice, use the varsity athletics gym or equipment. Worst of all, for games I had to sit in the stands with the fans. These were the hardest months, because I felt as if I had lost everything. I was mentally and physically a train wreck.
In May things had begun to calm down and I thought I was in the clear. Everything about the last semester was over and it was summertime. I felt normal again. It wasn’t until a year later that I realized how wrong I was. I will never be normal again, and I’ve come to understand that this isn’t a bad thing. I am now a 20-year-old girl who is living with a life long disease that affects me every single day. It took a long time to adjust, both physically and mentally, and I am still adjusting. In the fall I was running away from my disease. I wouldn't talk about it. I would avoid anything that reminded me of it and I pretended I wasn't sick anymore. I wanted to reinvent myself where no one knew what happened to me and no one would know that I was sick. The times I did think about being sick, I would have all of these horrible thoughts run through my head that I was gross and tainted because I was sick. Something was wrong with me and everyone knew about it. Every time I would get these thoughts I would run even further away from disease. I thought as if MS had ruined my life and I lost everything and I would never get it back.
Now after 4 months of denial and self pity I have come to accept that I have a new lifelong friend and although I did not choose her, she's here to stay. I accept that everything is different now and it’s not going to go back to the way it was, but that is okay. Just like any relationship, there are things to work on and you don't know what those are until you are in the relationship for a while. Now that me and MS have been friends for a year, I know what I need to do to make this relationship work. I won't let MS or our relationship define me anymore. Instead I will face the challenges head on and deal with it day by day. I will not surrender to it and allow time to pass me by.
Happy Valentine’s Day from me and my life long friend: Multiple Sclerosis.
