My First NMO Symptoms Appeared Years Before My Diagnosis

It didn’t start as a windy day. The sun beaming down on my face felt oh so good.

Spending time on the water with my family was one of my favorite activities. At first, I thought Dad’s 28-foot boat purchase felt excessive, but when we piled our entire family onto it one day about 20 years ago, the boat quickly felt like a dingy.

For most of that sunny day, we cruised through Georgian Bay in Ontario, Canada. We’d anchor periodically to fish, then travel through the locks to visit small shoreline communities for ice cream and baked goods.

While Dad would let others drive his precious boat, I was the only one who had demonstrated enough skill and care to complete the most difficult tasks, such as pulling the boat into the slip. It was a privilege to be trusted with docking the boat, filled with passengers, in just the right way that would make him proud.

Boating requires confidence. There are no brakes to stop you, just the quick reaction to slam the gear into reverse. Should things go wrong, you need to stay calm and rely on your passengers to take orders.

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As evening approached, it was time to head back to our home marina. Our slip was three in from the lake and faced another row of slips. This made the turn, with a single-engine motor propelling a large boat, already challenging. With the cover of darkness and a slight breeze toward the shore, mooring the boat was especially difficult, so Dad was behind the wheel.

I wore the shortest of shorts in the heat of the summer. I didn’t notice the temperature drop gradually. My favorite spot has always been the front of the boat. It has the best vantage point, and I love the wind in my hair. That day was no exception — I crossed my long legs into a pretzel for hours on end.

As our marina came into view, I prepared to jump off the boat and onto the dock. This was a key role, managing the lines that would secure the boat in place. Seeing how comfortable I was at the front of the boat, my mother offered to do the job instead. I hesitated, but her confidence changed my mind.

As we approached the slip, the wind started to pick up, the bumpers of the other parked boats slamming into the sides of the dock. Just then, I watched my mother miss the dock. She jumped too soon, hit her head on the dock, and was now pinned between the dock and our boat. I leaped to help her, but found I couldn’t.

My legs wouldn’t react.

My father hollered at me to take the wheel, knowing that I could reverse the vessel out of the slip without damaging other boats, but again, I couldn’t move.

With my arms, I lifted each leg to uncross them. They fell to the deck like they were filled with lead.

I was helpless.

My family managed to push the boat away from the dock and my mother. Our slip neighbors pulled her out, then Dad docked the boat safely. As we all disembarked, I was still stuck at the front of the boat.

I know Dad was disappointed in me, but not more than I was in myself. I blamed it on the cold; my legs felt icy. Maybe I had sat in that position for too long. Perhaps the stress of the situation made me freeze. My sister brought me warm blankets, and eventually, the feeling returned to my legs.

Six years later, when I had my first transverse myelitis attack, it was my uncle who reminded me of this day. “Hey, Jen, do you think that time when your mother fell into the water and you couldn’t get up was the first sign of paralysis?”

His comment didn’t resolve my guilt about being unable to help my family when I was needed, but it did provide an explanation. An MRI scan confirmed that a lesion of this size likely took years to grow until the fateful day of my first major neuromyelitis optica attack.

Please comment below about when you believe you had your first NMO symptoms.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).