When you have Mal de Débarquement Syndrome, it’s hard to explain to others how you feel. As a rare neurological condition, it’s not something that most people have experienced in their lifetime (and thankfully never will). The sensations are different and even a little bizarre. Most of us with MdDS describe the main symptom as feeling as if we are on a boat. If you think that sounds relaxing, it isn’t.
Most of the time, the “boat” is not a calm cruise ship with some gentle rocking you only notice slightly when you are sitting still or lying in bed. MdDS often feels like being on a small lifeboat adrift at sea, with varying degrees of waves rocking and tossing you across the open ocean. For me, the symptoms are there all day, every day, except when I’m driving in a car, riding my bike or swimming.
To help those who care about someone who has MdDS, I’ve written a story to try to explain what we feel and give you a glimpse into our somewhat strange world. In this story, I’m taking my friend Amy on an imaginary journey that’s very real to those of us who live with MdDS every day. We’ll be visiting a big carnival circus tent and you’ll experience several different rides and attractions – no clowns, I promise.
“We’re here. Welcome to MdDS Land,” I say to my friend Amy, waving my hand in front of the giant circus tent towering in front of us. “Cool, Sheryl, this looks like fun,” she says, reaching for the large flap of fabric that covers the entry. I step in front of her so I can warn her about the lighting before we go inside. Handing her a pair of blue light blocking glasses, “First you’ll want to put these on,” I say. “The florescent lights are going to feel different to you.”
“I’m never bothered by bright lights,” she says, dismissing my offer for the glasses. “Okay,” I say, pulling back the tent flap opening. Amy steps inside and is immediately assaulted by glaringly bright lights and loud carnival game sounds.
“Ugh,” she shouts, shielding her eyes. “The lights feel like the ones they use at the dentist, only there are hundreds of them.”
“That’s what regular fluorescent lights can feel like to us,” I say, handing her the glasses that she rejected earlier. Amy quickly puts them on, and I lead her to a large swimming pool set up in the middle of the tent.
There’s a single-person life boat raft gently drifting in the water and I pull it over to the side of the pool. I tell Amy to climb into the raft and hang on tightly. “Why?” she asks, after lowering herself into the small inflatable boat. “I’m barely moving.” Walking back to a control panel that operates a wave machine, I press start and remind her to hold on. Small waves start rolling across the pool. “This isn’t too bad.” She shouts out to me as the waves gently lift her up and down in the raft.
I tell her that the wave machine is set to level four right now, but goes as high as 10. “I’m setting it to about a six now, or what I usually feel in the afternoon and evening.” She holds on and rides the waves and seems to be having a good time. After a few minutes of adjusting the wave levels up and down, I pull her in and have her sit on a nearby bench. “That was actually kind of fun,” she says, “I would do that again.” I smile and sit down next to her on the bench. “Are you ready for the next attraction?” I ask.
“Sure, just give me a couple minutes. I still kind of feel like I’m on the raft. I just need a little time for this feeling to go away.” We sit on the bench for 10 more minutes and I ask again if she’s ready. “Sheryl, why do I feel like I’m still on that raft?” she asks. “I’m still bobbing up and down and forward and back.”
“I guess I forgot to mention something when we started,” I say, waiting a couple seconds to get her attention. “Everything you experience in this tent will continue after the experience is over.”
“Seriously?” she says, looking at me skeptically. She jumps to her feet, only to lose her balance and fall back onto the bench.
“If you try to stand up quickly in a boat, you’ll usually lose your balance,” I say. “You need to take it slow. Come on, there’s a lot more to experience.” I hook my arm through hers as we start walking. Amy takes her first step and quickly tightens her grip on my arm. “What happened to all the floors?” she asks while wobbling back and forth.
“They have all been replaced with rope suspension bridges,” I say, explaining that this is our next MdDS experience “This is how walking feels to me now. Many people describe it as walking on a trampoline, a mattress, or in a bounce house.”
“How are you supposed to walk on this? There aren’t any handrails.”
“I wish I could say you get used to it, but I really haven’t. It makes everything harder,” I say, helping her walk toward the next attraction. She stumbles a few times and reaches for walls as we walk. Most of the time there aren’t walls and Amy puts her hands to her side as if walking on a balance beam.
“Stop clenching your jaw.” I tell her as we walk. She didn’t realize she was doing this and I explain that I often clench my teeth in a misguided attempt to balance myself. “It doesn’t work, and you’ll find yourself grinding your teeth.” She bites her bottom lip instead and continues to stumble toward the next attraction – a giant pinball machine. Amy looks much less enthusiastic than when we started and glances at the exit door.
“Now that you’re bothered by the lights, bobbing up and down from the raft, and having trouble walking, we’re going to play some pinball,” I say.
“How would you play a game that’s so big?” she asks, smiling weakly. “Where’s the ball?”
“You will be the ball,” I explain as I walk her to the middle section of the life-size machine. She looks concerned and diverts her eyes from the bright flashing lights on the machine.
“We’re only going to be using the center part of the game.” I say and place her in the middle of the mushroom shaped bumpers. “This is the part of the pinball machine where the ball gets stuck and you rack up a lot of extra points.”
“I don’t think I want any extra points,” she says, grabbing onto the nearest giant bumper. I give her a strong push and step back. Amy bounces wildly off the four bumpers, side to side, front to back, side to back, front to side, and so on. After a few seconds, I grab her arm and pull her out of the human pinball machine. She stumbles out of the game and finds another bench.
“How do you feel?” I ask.
“I don’t know. My brain hurts. My head hurts. I’m rocking back and forth, or maybe side to side. I can’t tell. Plus I still feel like I’m floating or bobbing up and down in the ocean,” Amy says. “Are we done? Can I leave now?”
“Pretty soon. Just a few more things to explore,” I reply. Amy grabs her head and leans forward on the bench. “Sheryl, how do I stop this rocking? I can’t even sit still.”
“You are sitting completely still. You’re not physically moving,” I tell her, explaining that her brain is creating the sensation of movement. “But when the symptoms get really bad, you may actually be physically moving. It’s sometimes hard to tell.” She shakes her head in confusion while she grips the base of the bench. I leave her for a few minutes and come back with a shopping bag.
“What’s that?” she asks as I pull a heavy garment out of the bag. “This is a magnet vest,” I say, setting it across her shoulders and helping her pull her arms through the bulky garment. “You’re going to wear this for a few minutes, and we’ll be walking down a special hallway.”
“Okay, as long as I don’t feel like the ground is moving when I’m walking.” She looks at me and I shrug, then watch her face as she realizes what’s about to happen. “You mean to tell me that I’ll have some weird magnetic pull at the same time I try to walk on a rope suspension bridge?” Once again I take her arm and lead her forward. Every time she takes a step, a huge refrigerator appears in front of her and the magnet vest drags her forward while the floor is rolling underneath her. “Ugh, this is awful! It’s like someone is trying to push me to the ground.” I take the vest off of her after a few minutes and we walk back to the bench.
“I still feel like I’m being pulled forward,” she says, resuming her slumped forward position on the bench. “How can I be feeling all of this at once?”
“That’s pretty common. The gravitational pull is one of my least favorites. I often feel like I’m being dragged out of bed,” I say. I describe it as being a hot dog on one of those roller grills in a convenience store, except the grill is broken and it only rolls one direction. She grabs her head again and I suggest we take a break.
Directing her to the corner of the tent, I open the door to a small café. It’s a tiny room decorated in busy checkered patterns plastered across the floors and walls. It has just one small high top table in the center of the room. “Have a seat,” I instruct her and she climbs onto the only chair available – a tall bar stool with no back or arm rests. She immediately leans forward and grips the wobbling round table.
“What’s happening in here?” she asks, starting to rock visibly in her chair.
“Things like small spaces and busy patterns can increase the symptoms you’re experiencing. Plus sitting on a barstool can also make you feel unbalanced,” I say.
“I can’t stay in here. I need to get out of here.” Stumbling off of the chair and through the door she asks, “Now can we leave?” I shake my head and take her to a large “Whack a Mole” game situated near the café. “I’m pretty good at this,” Amy says, grasping the game for balance and feeling her hand around the edges of the game. “Where’s the mallet?” she asks.
“There’s no mallet,” I reply. “You have to try to smack down the moles on your own. Each one is labeled with a different MdDS symptom. Are you ready to start?”
“Not really,” she says as I press the start button on the game. The moles start popping up all over the board as she frantically tries to push each one back down using her hands.
Rocking, Swaying (whack), Bobbing, Gravitational Pull, Poor Concentration, Headaches (whack), Trampoline Walking, Rocking, Ear Pressure (whack), Poor Balance, Sound Sensitivity, Head Pressure, Fatigue, Gravitational Pull (whack), Light Sensitivity, Nausea, Headaches (whack), Bobbing, Ringing in the Ears, Brain Fog, Trampoline Walking (whack), Fatigue, Pattern Sensitivity, Rocking (whack), Headaches, Swaying, Poor Balance, Gravitational Pull, Rocking, Bobbing.
The game ends with a mocking tone and displays Amy’s score – the lowest score in the history of the game. “That was terrible,” she says. “I hardly got any of them, and the ones I did hit came right back. I couldn’t even focus.” She shakes her head and collapses onto the nearby bench. “Do you have all of those symptoms?”
“I’ve had most of them at one time or another and I always have the rocking, bobbing, trampoline walking and gravitational pull,” I say. “Having MdDS can feel like a game of Whack a Mole for many of us. We have good days, bad days, new symptoms, old symptoms. It’s frustrating and there isn’t any one thing that helps everyone.” Amy pulls her knees to her chest and wraps her arms around them. “Sheryl, can we leave now?” she asks, tears pooling in her eyes.
“Okay, let’s go,” I say and we walk unsteadily toward the exit of the tent. The outside light is bright as well, but Amy hesitantly pulls off the glasses I gave her when we entered the tent. “It’s all gone now,” she exclaims! “No more rocking, bobbing, swaying, headache, brain fog, light sensitivity, gravitational pull. It all went away!” She turns to give me hug, but sees my pained expression and stops. “You’re still in the tent,” she says slowly, now with tears rolling down her face. “You didn’t get to leave.”
“No, not today,” I say, looking away to hide my own tears. “Someday I hope,” I say, my voice cracking with emotion. She hugs me and walks me over to the car. “How about I drive you home? We’ll take the long way. That will take at least an hour.”
“That sounds good. Thank you,” I say, climbing into the car. Amy pulls out onto the road and the vibration of the car on the pavement starts to melt away everything. The rocking, bobbing, head pressure, gravitational pull. It’s all gone. I’m me again. I got to leave the tent as well, but just for the next hour.