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What My Family and Friends Want You to Know About Mal de Debarquement Syndrome

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June is the month to raise awareness for mal de debarquement syndrome (MdDS), a rare chronic invisible illness that leaves its patients feeling in a state of constant motion. I could write a story using statistics and my experiences to help others learn about this rare disease, but I thought I’d take a different approach this year. Rather, I asked my care team, my friends, my family, my students and those who see me live with this illness to share what they have come to see knowing me, a person who lives every day on the boat ride that never ends.

Here are their observations so you may learn more about what it is to know someone with MdDS:

“It’s your reality. It’s a grouping of conditions that you’re forced to battle and overcome. It’s not a traditional condition in that it’s not something you can take a pill for. It’s a chronic condition that you have to keep chipping away at.” — John, my husband.

“It’s an illness God gave you because you are strong and He knew you would use it to help others.” – My 11-year-old son.

“It makes you fall over a lot, so I get to sit on your feet to help you feel more grounded.” — My 9-year-old daughter.

“I can’t even pronounce it.” — My 7-year-old daughter.

“I’ve seen lots of tears, the look of fear on your face, the look of ‘I am going to throw up’ to ‘my head could pop off from the pain.’ I see the difficulty in remembering things. Again, I see many tears and the feeling of helplessness. The willingness to try anything but to later be disappointed.” – Penny, my mom.

“Your disease is hard to observe and understand. We only see each other a few weeks a year, but at first, I always see the Linny I knew growing up — wild, carefree and up for the challenge. Then, I witness the sickly version in the aftermath where you can barely open your eyes and move. It seems like a horrible hangover from the fun you had. It’s confusing and I don’t know how to support you other than to just listen.” – Laurie, my sister.

“To me, your disease — one day, everything flipped for you. You are in a constant state of motion. You reached out to anyone who would hear you and you would try anything to feel good again. You have good and bad days. Bright lights and motion really bother you. Some days, you struggle to even get out of bed. I’m really proud of you. You have never thrown in the towel and said ‘I quit.’ This wasn’t something you chose but you have stood up and fought. I know some days it slows you down, but maybe that’s not such a bad thing. You are amazing. Keep raising awareness, Linny.” — Elizabeth, my sister.

“I have observed Lindsay progressing from being protective of herself within her syndrome to stepping outside of that zone. Several years ago, she made the statement to me that she did not want to miss out on sharing new experiences with her family. Let me share a lake example. Two years ago, Lindsay would only sit on the house deck and often with her back to the lake. Just last week she was tubing, jet skiing and eating lunch anchored in the lake. Then she quietly removes herself to face the repercussions that impact her body as a result of her choices. I continue to observe, admire and wonder. I wonder what it must be like to be in her body. And I wonder if I could be brave enough to make the same decisions.” — Priscilla, my mother-in-law.

“I have seen my sissy improve leaps and bounds from the initial diagnosis date. Once unable to even look at a pool, lake or ocean, she now swims in the pool, tubes in the lake and stand-up paddleboards in the ocean. While I know these activities bring her pain and discomfort, she refuses to allow MdDS to steal moments and experiences with her kids and of life from her.” — Carrie, my sister-in-law.

“I have known Lindsay for many years even before her illness. Since I have known her before her syndrome, I see firsthand how it’s affected her. I really notice it when we travel together — having to guide her through airports, avoiding moving sidewalks, unique lighting and the motion of the airplane. It’s the simple things in life that we take for granted, that are struggles for people with MdDS.” — Steph, my best friend since high school.

“When I see Lindsay, I don’t see a chronic illness. I see a beautiful, loving, giving and strong woman. She is open, receptive and honest. When I see MdDS in Lindsay, I still see her but a slightly blurred version. (Maybe like Peter Pan’s shadow.) It may take the shape of gently leaning on the pews as she brings up the Gifts, locking arms as we go for a stroll or cuddling up with a cup of coffee and having a nice chat. On a bad day, we have the ability to simply tell her children to head on home after school while she is trying her best to find equilibrium. I would do better if I read the signs and interpreted them faster. Sometimes are all a little low on bandwidth. Lindsay has been a very important friend to me as she has showed me how to have deeper compassion and taught me to read the signs of someone suffering without complaining. We do not know the crosses of others. Even when we have been told, it is most times difficult to completely empathize; all we can do is love and support as best as we know how. I may not see chronic illness in Lindsay, but I understand the toll MdDS takes from her.” — Angie, my dear friend.

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“What strikes me about Lindsay is the grace with which she handles situations the disease puts her in. By grace, I mean not only her decorum but also a spiritual strength that undoubtedly comes from a deep-rooted faith. That frame of mind serves as a beautiful lesson for us, her friends. Lindsay and I share a little something in common — “invisible diseases” — and while mine is very different, I am painfully aware of the difficulties one faces when feeling like sludge on the bottom of a shoe, but at the same time appearing as though everything is perfectly fine. When we talk, she always makes a point to ask how I am doing. Most people would use that question as a cursory start to a conversation, but I know Lindsay is asking from a more meaningful place. Each time she asks me I am grateful somebody truly understands. I do worry for Lindsay, however; I hope she calls on her friends enough for strength and support (and errands, pick-ups, meals, etc.). Her disease is draining, but as her friends, we hope to fill her up.” — Andrea, my dear friend.

“After Lindsay explained to our class about her MdDS illness, I feel like our class had a better understanding about why her physical tendencies were the way they were, and we were able to appreciate her in a deeper way. Although she couldn’t always look at our computers if they had a moving background, stand still with her feet together, sometimes had to take a breath because her head was throbbing, or she couldn’t find the right word to say, Lindsay never let anything stop her from connecting with all of us in a way we won’t forget for a long time. She was able to go beyond the limits of her rare disease to provide a classroom filled with laughs — and sometimes tears from all of us — and education at every chance she could.” — Emily, a former student.

“Although Lindsay struggles sometimes with her MdDS symptoms, she always stayed resilient and delivered an amazing education to her students. Lindsay may be diagnosed with MdDS, but she doesn’t let it define her.” — Joe, a former student.

“I had no idea what mal de debarquement syndrome was before I met Lindsay, which I assume is the truth for many people. Lindsay is one of the strongest people I know and seeing how some days this illness would leave her absolutely drained shows how secretly deleterious it can be. As one of the first journalism courses I took, Lindsay taught me that to tell a proper story and to report on humanity, we’d need to air the messy parts as well. I am now aware of the struggles that come with an illness that no one can see on the surface and what it means to persevere in the face of adversity.” — Rachel, a former student.

“If Lindsay never told me about her illness, I would have never noticed. I have never seen it stop her from living her life to the fullest, and I admire her strength both mentally and physically. Lindsay is truly a force to be reckoned with.” — Tina, a former student.

“Lindsay is the strongest person I know. She struggles every single day with her condition, often being unable to stand or plagued by extreme dizziness. But each time she walks into class, you would never know she has an illness. She puts on a smile and makes the most out of every day for her students. She never shows it when she is having a rough day with her condition. Even if she may not feel well, Lindsay puts her students first, and for that, I’m extremely grateful. Lindsay is one of my role models and has changed my life. She taught me to appreciate each and every day and to live life to the fullest, not by letting something hold you back, but by pushing through for those you love.” — Kendall, a former student.

I obviously have some work to do at home, but this exercise of collecting thoughts from my family, friends, and students was much more therapeutic than I could have imagined. Living with an invisible illness but knowing others actually “see” you is a beautiful gift. I would highly recommend others reach out to see how they’re doing at raising awareness for their rare disease.

Photo by Tandem X Visuals on Unsplash

Originally published: June 29, 2020
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