A few weeks before I moved to Richmond, I was told that the doctors thought I had MS but I was basically in the waiting stage, also known as “CIS” (Clinically Isolated Syndrome). CIS is used to describe a person’s first symptoms of MS while doctors are determining what the official diagnosis is. People can have CIS and never go on to have another flare up, and therefore never being diagnosed with MS. Six months down the road, I officially got the word but, in the meantime, I wanted to go about my life and hope it would never develop into Multiple Sclerosis.
I moved to Richmond to “start my adult life” and signed a year lease with my best friend, Emily in The Fan (where most post grad young adults live in Richmond.) Emily and I were at Ikea one afternoon (I was wearing my eye patch at this time) and I remember being close to an anxiety attack because of how much my eyes were messing up. Ikea is overwhelming for anyone; imagine Ikea in triple. Emily and I made our way through the store when I realized that I wasn’t going to be able to brush this off and go back to the way my life was before. My life was forever changed and it was time to accept that.
My new job in Richmond was an event promotion assistant for a couple different radio stations. This meant lots of late nights and early mornings, driving a big radio car, and long hours. I didn’t want to tell my new employer and coworkers what was going on because I wanted to be “normal.” I would wear my eye patch while driving and take it off whenever I got to my destination and would try to close one eye if I really needed to see something. I was exhausted from working multiple events in a day, sometimes working up to 17 hours in a day. Along with juggling my new job, I was trying to hang out with Emily and our friends in Richmond, keep up with my friends back in Fredericksburg, and drive up to Fredericksburg for doctor’s appointments all the time. I was spending more and more time in Fredericksburg because that’s where I felt most comfortable, it was my home. I needed to feel this comfort and be in a place where I didn’t have to act like nothing was going on. In the back of my mind I knew the best thing for me was to move home and be with my family and work at a place I felt comfortable. I didn’t want to accept that MS was affecting me so much that I needed to move back to Fredericksburg. I also didn’t want to disappoint Emily because we loved our apartment so much and loved living together; something we had dreamed of doing ever since we were little girls. I didn’t want to disappointment my coworkers and quit the radio job and come clean about my diagnosis, and I didn’t want to disappointment my parents in telling them that I really needed to just come home and I wasn’t actually doing “fine” like I kept telling them multiple times every day. They spent a lot of money on brand new furniture for my apartment and I felt terrible that we had to just put it back in a moving truck and place it in our basement. I was embarrassed that I had to move back home because of this disease after trying so hard to just ignore it, I felt like it had defeated me.
Emily of course understood why I needed to move home, but I felt awful about it. Not only was I leaving her in an apartment by herself, but she was going to keep trucking forward with her post grad life and I was going backwards, back to Fredericksburg, back to The Happy Clam (the restaurant I managed,) and back to my parents’ house. Looking back on this time of my life I truly believe making this decision was the best thing for me but I still wonder “what if.” What if I never got diagnosed, what if I somehow managed to stay in Richmond during this crazy time, and what if I never left that apartment with Emily. I can’t explain the roller coaster of emotions I went through during this time, but I know that if I tried to keep working 15 hour days with people that had no clue what was going on and establish a life in a new city, something very bad would have happened. It is so important with MS to get enough sleep and to not let yourself get stressed out, and those were two things that I was struggling with in Richmond. I almost felt like I was living a double life, I tried to act like nothing was going on at work and around my friends, but I really was exhausted, seeing in double/triple, and most of the time just wanted to cry.
Emily and I have always been obsessed with roller coasters so we decided to go to Haunt at Kings Dominion with our other two friends, Sarah and Mary. I was determined to not let my MS stop me from doing these spooky Halloween traditions. We arrived at the park in the early evening, the sun was going down. We rode a few roller coasters and I was fine besides my normal double vision but as it got darker and darker outside and the more neon lights lights came out it got tougher and tougher. I remember looking up at a roller coaster and it just being a blur, lights everywhere, and the monsters jumping out everywhere mixed with the screaming was just a bit too much for me. I sat down with the girls and they reassured me that we could leave, but I didn't want to ruin their good time. I didn't want to be the sick girl that had to go home. I walked around with the help of Emily's hand guiding me throughout the park for a bit longer, but then we realized it was time to go, it was too much for me to handle. It's these occasions that I realized I couldn't live in denial of this disease, this was happening whether or not I accepted it.
If you’re newly diagnosed with MS or with any disease, it is so important to be honest with yourself, with your friends, and with your family. It is SO okay, to not be okay all the time. This is something that I have learned in the past two years, something that took a while for me to accept. We just got diagnosed with a lifelong incurable disease; obviously we aren’t going to be okay! It is going to take a while to accept and face this, but it is so much easier if you have people behind you. You can’t do this on your own, you really can’t. It is totally acceptable to call up a family member and ask for them to drive you somewhere or tell your friends you can’t make that party you are just way too exhausted, I promise they will be more understanding than you think.