It happened simply, without warning, no reason.
When I woke, there was white, endless, empty white. Half of my vision was missing, stolen in the night when I slept and could not defend myself. That thief left no handprints, broke nothing, all belongings where I had left them. It was only my vision, the sight in my left eye, nonexistent as if it had never been.
I raced to my family physician, who dropped his ophthalmoscope on the metal examining table where I sat. I remember that clang and felt it reverberate in my body, mixing rhythms with my quickened heartbeat. His eyes were wide. He was terrified for me. “Go to an eye doctor. I’ll make the appointment for you right now” and he darted out of the room, leaving me alone.
Thirty minutes later, I was sitting in front of Doctor Number Two, who announced it was optic neuritis. “Or inflammation of the optic nerve,” he explained, “and the causes range from bacteria and infections to autoimmune disorders.” His expression was too serious; I could feel something more lurking, something he did not want to say. “I’m going to schedule an appointment for you to see a neurologist immediately” and he, too, bounded from the room. Immediately? I thought. A neurologist? But this deals with my sight...
Still, off I dashed to Doctor Number Three. “Multiple sclerosis,” he declared, sitting on his stool after performing a gamut of tests that included analyzing my eyesight, checking numerous joints, and inspecting my walk up and down the hallway. He was an older doctor with white hair and a white matching beard, the type of doctor patients line up for because he has ‘experience’ and ‘wisdom’ and had ‘seen things in his career.’ He was the friendly type, too, one that spoke slowly but had a mouthful of words pouring out each time he took a breath. Or did he breathe? Maybe his words were his breath because he didn’t pause until reaching this sentence: “Multiple sclerosis – You have an autoimmune disease.”
That was five years ago when I didn’t understand what was happening, five years ago when the word ‘disease’ felt terminal. And I was only thirty.
I have since learned that the diagnosis of multiple sclerosis often follows optic neuritis. However, I have also learned that for each person, MS is different. More importantly, MS is not terminal.
When I was diagnosed, it was one month and three days before my wedding, which is why MS and my marriage seemed intertwined, impossible to separate. I remember being terrified I would not be able to see my soon-to-be husband at the end of the isle, that I would be stumbling blindly towards him, holding onto my father for a different type of support most brides don’t need. Luckily, none of that happened and I regained my sight shortly after intravenous steroid treatments.
Surprisingly though, the true pain came not from my diagnosis or the confusion of living with an autoimmune disorder or even the attacks that followed. My true pain came two years later when my husband and I got a divorce. This is why I write now. I want people to know living with multiple sclerosis can be challenging. But so is life.
I now hike as a way to escape and push myself past what I thought I could do. I also write and hope to publish a book, telling more on my diagnosis and personal journey because in the end, everyone needs an outlet and no matter if you are newly diagnosed or have had MS for years, it is important not to limit yourself because you can achieve more. Going through my diagnosis, living with my attacks, and coming out on the other end of a divorce, I am stronger and I would not change any moment of my past because of this. That is why it is important to remember you can never go back, only forward. And there is beauty is in that.
Do you ever experience MS bloat?