I was diagnosed with Multiple Sclerosis in July of 2012. I went to get out of bed to get my son and I face planted on the floor. It didn’t feel like I had a left leg anymore. I couldn’t feel it at all. I could mark my physical symptoms back to Memorial day of that year a few months earlier. We were having a BBQ and my leg was asleep the whole time. It only lasted a few days and once it went away, I figured I must have pulled a muscle or something. I had been having a ton of cognitive issues at work; thinking I had replied to an email or placed an order for things when I really hadn’t. I excused a lot of it based on working full time and having a 1 & 2 year old at home.
I didn’t know much about Multiple Sclerosis when I was diagnosed with it. I went to the Emergency Room on a Sunday. They ruled out a stroke first because my left side was being effected. I remember the ER was really crowded but every time they’d get a result, I would be whisked to the front of the next line. I was alone in the hospital when the neurologist on staff came into tell me (My husband had went home to get our kids from my sister who had been watching them all day and my best friend had finally went home after sitting with me all day.) He told me at 6:53pm. I remember the time because the only thing I remember hearing was the clicking on the clock and I just stared at the time. Both the day nurse that had been with me all day at the hospital and the nurse coming on at 7pm sat with me while I cried. I tried to take this all in and the only question I could think to ask was if it MS could kill me or not. When he said no, I decided that that meant I was going to try to spend every day living in the moment from there on out. He also told me that they just weren’t sure if I’d walk again or not because I could no longer feel my left leg; they would start steroids immediately and tomorrow I’d start intense physical therapy but we would just have to see if the feeling ever returned. In the mean time I was going to have to learn to walk with a walker and to not overexert myself, use a wheelchair. I spent 8 months learning to walk again. Today I use a walker or as I like to say, “I rawk the walker!”
As this pandemic has continued and I have had so much time to sit and think, I have really tried to figure out the definition of how I want to be recognized as a person living with MS. I live in this weird bubble, where I have MS, people who know me know I have MS and I am not ashamed by it, but I don’t want the only thing that you see me for is my MS. I am so much more than just my Multiple Sclerosis.
On the other hand, as it turns out, I am really good at sharing my journey of living with this disease and advocating for patients and myself. I have met amazing people, I have gotten involved in so many ways with the National MS Society and have found an organization who puts so much money, energy and focus into people living day to day with MS. I have found that I am a person that’s name comes up as a great resource for newly diagnosed people to get in touch with. I raise awareness for the disease by sharing my story and not shying away from it. As a child growing up in southern California, I always wanted to “be discovered and become famous”, maybe Multiple Sclerosis is what I become famous for in my little bubble. Maybe this is the role I play to change the world. And maybe this is exactly the way it’s supposed to be…
Image: Sarah getting her first Ocrevus infusion in October 2018. She is laughing because she is a big baby when it comes to needles.