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Chelsey’s NMO Story – Vision Without Sight

Posted by: The Sumaira Foundation in NMO, ON, Patient, Voices of NMO

In February 2019, I received an NMOSD diagnosis after nearly 11 years of being treated for multiple sclerosis…

I think when you are diagnosed with a chronic disease, knowing who you are is critical to how you move forward with living the life you want to live. With certainty, I can say that I live an amazingly full life. I’d also argue that while I do not define myself by a disease, being diagnosed has been the catalyst to the relentless pursuit of who I truly am. So, who am I? I am Chelsey! I am creative, vibrant and I love to laugh. I’m married to my best friend of nearly 12 years and together, we have 5 beautiful children. I’m an artist, writer, lover of music and a serious lover of people, too.

My story begins in 2009. I woke up and felt eye pain like I had never experienced before. I immediately noticed that my eyesight was impacted and the way I viewed color was significantly impacted as well. Prior to this, I had spent nearly a year visiting with many different specialists who were trying to put a name to the unusual collection of symptoms I had been experiencing. Frequent vomiting, numbness, tingling in my extremities, headaches, tachycardia and disabling fatigue were on the list of symptoms.

After being admitted to the hospital for the eye pain, I went on to be diagnosed with optic neuritis. I was given a formal diagnosis of MS after MRI’s and a lumbar puncture concluded that was most likely the cause of the symptoms I had been experiencing thus far. I also received a diagnosis of secondary POTS syndrome and secondary Raynaud’s phenomenon.

The first line of treatment was high dose steroids and finding a disease modifying drug that would help with the recurrence of relapses. I never found the medicine that worked for me. In fact, I believe there were some medicines that intensified my symptoms or were the catalyst for new symptoms. I was passed around by several doctors because my case was “too complicated”, “not typical” and/or “unusual” for MS. I was told the relapses I experienced were more aggressive than “normal”, particularly when it came to my eyesight.

At some point along the way, I began to wonder if MS was truly my diagnosis or if there had been a mistake. The years 2009-2017 were filled with a significant amount of instability with my health. I experienced 10 additional episodes of optic neuritis in my left eye and we eventually stopped treating it with steroids as my eyesight progressively declined with each additional event of optic neuritis. I spent a lot of time during those years wondering,

What was wrong with me? Why was I not responding to the medicine that should be working?

In the fall of 2017, I woke with the same unmistakable eye pain. This time, it involved both of my eyes. Through a series of MRI’s, a diagnosis of bilateral optic neuritis was confirmed. My eyesight had been profoundly impacted and my worst fear was being realized. At the time, my husband and I had just finalized the adoption of our third child. We had navigated the harsh world of foster care and the unpredictable progression of this disease, but nothing could have prepared us for what was happening now.  

I spent the next eight months legally blind in both of my eyes. It was like I was viewing my world through a piece of stained glass. Everything was blurry and the colors in my world were dull. I spent a lot of time re-adjusting and learning how to navigate my life. I asked a lot from my husband during this time.

I asked that he describe the details of our children’s faces and what color their eyes were. I had not paid close enough attention to the little details while I had the privilege of seeing them…

As he described them, I began to visualize them. This is when my love for art and painting was born. It didn’t take long for me to understand that I didn’t need my eyesight to have a vision. As soon as my sight began to return in my right eye, I began to explore painting. The first piece I painted was a guitar. I felt connected after I finished it. I felt connected back to how things were before I lost my sight and I felt connected to something higher than myself. My husband would often ask “who is coming in our house and painting these pictures?” Although he knew it was me, I feel certain we were both shocked by the new gift that had been discovered! I started to establish a new normal and redefine what life looked like for me and my family. I had hoped to never experience anything like this again.

In January 2019, I spent a week in the hospital being treated for an atypical allergic reaction to a medication that was being used to treat MS. Following my release, I developed bilateral optic neuritis again in my eyes. This time, my eyesight was catastrophically impacted like never before. My neurologist began to explore a diagnosis of NMOSD and through a series of testing and additional scans, I received the formal diagnosis in February. This explained so many questions I had spent the previous 11 years asking. I felt relieved and confident we could move forward in the right direction because we were finally treating the right disease!

Currently, each day brings something new.  I have days when getting out of bed and holding a paint brush is not an option. I have minimal color vision; I remain blind in my left eye and the visual acuity in my right eye continues to deteriorate. 

While I may not know what each day will bring for me, I know with certainty that NMOSD has given me far more than what it has taken.

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