I’m not quite sure where or how to begin this journey, but let me start by introducing myself.
I’m Jess, and up until a little over a week ago I was a healthy, normal (by my standards) 21 year old girl. My biggest worry was whether or not my ex had moved on with someone new or if I had gained an extra pound from being naughty over the weekend. Actually thinking about it now I may need to go back little further.
You see 2014 was less than kind.
Things took a turn when we lost our dear friend Taylor in a snowboarding accident in February. Taylor was Superman, the smartest one, the most fun, the kindest one, the one with the brightest future, and when life took him of all people it was bone-chilling. Life suddenly took on a different hue. We no longer felt like we had all the time in the world. A close friend’s dad once said that we must have felt like we aged 5 years in a couple of days and that was just the feeling. Life began to seem unfair and cruel. It had lost almost all of the sweetness it had promised us. But the thing about life is that it goes on. You do better each day. Little by little is reveals that sweetness to you again, and little by little you remember how to enjoy it. You create a new normal, and thats what we did. We miss you everyday Tay.
As the year progressed my relationship began to fall a part. I began to feel lonely and insecure and after a year of being with that person I decided I didn’t want to be feel like that anymore. Everyone seems to romanticize the idea of first love, but nobody prepares you for how badly it hurts when first love doesn’t work out. My boyfriend was one of my best friends. We had a wonderful time together and when I think of him now I still have kind thoughts and fond memories. The relationship taught me a lot. To be more open and vocal about my feelings, thoughts and true opinions. To never compromise who I wanted to be for who someone was telling me I was. That as cliche as it sounds we do truly need to love ourselves in order to love and be loved by another. Its a slow and painful process. You go through the typical cake and sad movie nights and the drunken episodes where texting or calling that person seems like the best idea. You do and think things you’re not proud of in the name of jealousy and you spend way too much time cyberstalking. But what no one also tells you is that there comes a day when you don’t cry, when you simply don’t think of that person. And then there comes a day when you find peace with that relationship, when you accept it for what it REALLY was, when you let that person go and when you embrace the idea of a new, different kind of love. For me that moment of peace came when I was sitting in a hospital bed across from my ex. Which brings me to the next part of our story.
After an interesting summer of grieving and healing I returned to University in the Fall sad, but excited at the idea of a new beginning in what had begun to feel like a sea of loss. The first month was a breath of fresh air. I was feeling like myself again, throwing myself into school life and focusing on things that made me happy. In my fourth year I was under the impression that I had become an expert at balancing university life. Between school, work, gym, social life and extracurriculars I thought I had finally figured out how to be perfectly and blissfully busy.
My body, however was not so convinced.
A month in I woke up one Thursday sick out of the blue. I had all of the typical flu symptoms, aches and pain, fever, fatigue, lack of appetite. The doctor told me to take advil and rest, so I did just that and never thought twice about it. But then slowly these symptoms started coming back and never left. Muscle and joint pain became the norm and I eventually stopped going to the gym altogether. I spent most of my time sleeping and miserable. I was in a state of perpetual self-pity. I can remember breaking down to a room mate once because I thought I was going crazy, crying over how I wanted to feel like my body was mine again. Getting dressed hurt, putting on boots was a struggle and the worst part was that I still felt like I was being a baby, like I somehow should be doing more. A year and a half before I had discovered some enlarged lymph nodes in my neck and that summer a biopsy had thankfully ruled out lymphoma. It never occurred to me that what I was experiencing was related to those small lumps I had become so used to.
After a weekend visiting home, I returned to school to be met with three sleepless nights of fever and chills. I remember texting my parents in the middle of one of the worst nights telling them that I had decided I couldn’t write my exam the next morning and that I was going to go to the emergency room. I never made it there. I received a call the next morning from a specialist I had been seeing regarding the lymph nodes and he told me to come home and that I was being admitted to the hospital. It all happened very quickly. I called my parents, they came to get me and by 4pm that day a bed was reserved for me. I was hospitalized for a week, what I can honestly say seemed like the longest week of my life. My mom, who I will be forever grateful for, slept in a chair beside my bed for seven straight nights. She’s my superhero.
I was on oxygen and IV and no one was really telling me what was wrong. The specialist had referred me to a rheumatologist and after speaking with her it became clear that I had a disease called Lupus. I had heard of Lupus, in fact I have an aunt who has had it almost her whole life, yet I knew nothing about it. Lupus is an autoimmune disorder which means my immune system does a bit too good of a job and attacks my body’s healthy cells too. It affects the muscles and joints but can also harm the body’s organs. My sickness or “flare up” was most likely brought on by stress and I had almost all the textbook Lupus symptoms. By the time I was hospitalized the Lupus had done some substantial damage to my muscles. I now know how truly blessed I am that it didn’t touch any of my organs. Beyond that how lucky I am that Lupus is a disease that is very manageable and treatable. I’m still learning and I don’t know much about my disease but I do know one thing: it could have been so much worse
And this brings me to now.
They’ve told me that I can’t go back to school this semester and some days I’m not even allowed to leave the house so I have chosen to write.
My name is Jess. I am 21 years old and in my last year studying Media and French at University. I’m single. 2014 was shit.
I believe hopelessly in love as a way of life, I have adopted gratitude as my daily goal, and I’m scared.
I have Lupus, I am not Lupus. I’m still that normal girl, just with a little extra.
This is my journey and these are my stories. I hope they will help you to grow and learn the same way they have me. They’re messy and often unrefined, but they’re mine. They can be silly, immature and dare I say less than groundbreaking, but they are enough. And most importantly they have all led me to this moment and I am exactly where I am meant to be.
Thank you for reading.