Rare Diseases

Rocking The Boat

Even though my Mal de Debarquement Syndrome makes me seasick even on dry land, I took a multiday boat ride with my husband, and lived to tell the tale.

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I was terrified of the boat–a 57-foot-long narrowboat that topped out at four miles per hour. Admittedly, it was hardly the stuff of wild adventure travel.

But I have Mal de Debarquement Syndrome (MdDS), a rare neurological issue that causes the sufferer to feel like they’re constantly floating, bouncing or walking on a trampoline. In most cases, it’s initiated by a cruise or some sort of travel. In other circumstances—like mine– the symptoms can come on spontaneously. Depending upon the severity, it can range from prohibitive to life-altering and disabling.

There’s no cure or remedy for it and patients are often told they just need to learn to live with the feeling of continual motion. The diagnosis can take a toll on your mental well-being, so support groups are key. The online group I belong to is a safe place where we share research, coping strategies, successes and struggles. The companionship is essential to us, as only we can understand the frustration, anxiety, and hopelessness that comes from having this baffling syndrome.

We’re constantly questioning different theories and treatments, but the one thing most of us agree upon is that we avoid all possible triggers. These include carnival rides, zip lining, big box stores with fluorescent lights and, most of all, boats. So how was it that I was about to spend a week living aboard one?

A view of me in the 57-foot-boat we took down the English canals.

All Hands On Deck

This past December, my husband turned 50 and there was just one thing he really wanted to do: a narrowboat trip on the Oxford Canal in England. Throughout England, there’s a vast canal network brought to life with long, skinny boats. Some people live on the canals year ‘round. Others rent them for a day or a week. Gliding down the canal at little more than walking pace, you hop on and off, using a windlass to open the locks and bridges.  You moor wherever you think you’d like to be for the night, and at night, a walk into town culminates in a meal and a pint at the local pub. In theory, this sounded like an amazing, fun adventure. But in my reality, I was terrified.

Not wanting to deny my husband the experience, I formulated a plan for the trip. First, we invited my 29-year-old niece along to help out with the crewing duties. She, along with my 12-year-old son, would take on the bulk of the physical work required to manage the boat. Second, we agreed that, if needed, I could disembark at any time and stay in a hotel without any sort of guilt trip or persuasion.

My niece’s help during the trip was invaluable.

Keeping Quiet

As most anyone with a chronic ailment will tell you, however, we learn to hide it. In the case of Mal de Debarquement, the same reactions can be tiresome:

“Oh, I had that once. I did some exercises and it went away.”

“You still have that? Maybe you should go to a shrink.”

And everyone’s favorite: “Well, at least it’s not cancer.”

Let’s face it: no one wants to hear about how bad you feel. So we learn to keep things to ourselves.

It might have been difficult, but this kind of view is a once-in-a-lifetime experience.

On the first day of the trip, when I stood on the side of the canal at a lock, I desperately tried to understand the mechanisms of what was happening. My niece and son grasped the concept right away and they knew when to crank the paddles and when to open the gates. But with Mal de Debarquement, brain fog is a serious issue. With the world constantly in motion around you, your brain never shuts off and exhaustion and molasses brain quickly set in. I couldn’t grasp the concept of working the locks and it felt as if all cognitive function had completely shut off. It was frustrating and embarrassing and I hid in the bathroom to cry it out.

Fortunately, I’ve learned that sleep is good way to reset my brain when it’s overloaded. The next day, after a good night’s rest, I was able to explain that I was having some issues. The crew took over and I helped when I could. My husband got really good at steering the boat as close to the towpath as possible so I could hold on while getting off. And because there are no waves in the canal, the rocking of the boat at night was minimal. Yes, we all felt our sea legs when we visited the pubs at night, but it, fortunately, didn’t worsen my situation. At the locks, I had my niece explain what was going on—where the water needed to be and what the next steps were.

Besides the boat, I attempted a lot on the trip that normally I would avoid: the open-top bus tour, walking up to ten miles a day, wandering through museums with tall ceilings, jamming into the Tube during Rush Hour. Each little thing was, for me, a small victory. And when it comes to chronic illness, the small victories are everything.

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