Taking a ferry when you have Mal de Debarquement Syndrome

Last weekend, I took a ferry.

And it’s not something I did lightly.

That may sound like no big deal to most people, but if you have Mal de Debarquement Syndrome, or know someone who does, it’s a big deal.

Travel only when you’re ready
When you have Mal de Debarquement, whose very meaning is “bad disembarkment from a ship”, you think about it a lot before you agree to go on a ship. Three months ago, I don’t know if I would have been ready. Six months ago, definitely not. But I finally felt that I could manage it.

And it was a good thing too, because one of my childhood friends was getting married on an island in Puget Sound.

We left on Friday, drove 3 hours to get there. Sat in line for an hour, and then finally boarded the ferry for the 20 minute ride.

Even though sitting in a line for an hour waiting for the ferry felt frustrating at the time, looking back now, I think it was really helpful. It gave me time to walk around and let my brain “reset”.

Find a position you feel that works. And then don’t move unless you want.
The ferry ride turned out to be pretty good. I was nervous, but fairly confident that it would be okay. Once we had parked, I got out and went to the deck and I found the perfect spot to stand. I could hold firmly onto the railing and face forward. I also positioned myself by a raft crane that partially blocked my vision from 10-1 o’clock, that helped block out the horizon so I had something that was stable in my foresight and broke up the moving stimulus of the water. And then I didn’t move for the rest of the 20 minute ride.

The rest of the weekend I felt okay. It was a little set back, but nothing I didn’t expect. And it didn’t slow me down at all. I could just tell that standing was a little more tiring than usual.

Oh, and the wedding? It was fabulous. The wedding and reception were on a grassy lawn by a bay and the bride and groom left by flying off into the sunset in a seaplane!

Bring a ski cap or something to block the wind in your ears.
On the ferry ride back, I remembered to grab my ski cap that I had thrown into my bag last minute, and that made a huge difference. I pulled it down over my ears which blocked out the stimulus from the wind. I felt a lot more stable without having my ears constantly trying to adjust for the pressure of the wind and I ended up walking around on the deck quite a bit. Plus, there was the knowledge that I had a functional neurology appointment soon, so it was okay if I pushed myself.

Be prepared for a small setback
Unfortunately, taking the ferry did set me back a little. My next appointment with the functional neurologist wasn’t until Wednesday, so both Monday and Tuesday I felt “off”. I was really busy running errands and being out of the house those couple of days, which turned out to be a helpful distraction. I didn’t notice it too much unless I was sitting or standing and even then I only noticed some slight swaying happening. I think Wednesday morning it was the worst, but thankfully my appointment was that afternoon, so after that I felt pretty much back to normal.

I can now cross off “taking the ferry” on my list of things I thought I’d never do again. So grateful for progress.