This is my daughter and I as our cruise ship is about to leave the harbor late last December. Little did I know what was to come.
If you’ve been reading, you know I wrote about having vertigo after that cruise. It turns out I don’t have vertigo. I have been diagnosed with something with the potential to be much worse. For starters, the name is worse. It’s called Mal Debarkment Syndrome. Sexy, right?
Mal Debarkment Syndrome is a fancy way of saying my brain never calibrated to being back on land. It can take three to six months to recover. Sometimes up to a year. Some people never recover. I’m pretending I don’t know that last one.
My husband jumped right on the research bandwagon and found there is not much in the way of treatment, other than time. He did, however, find an option at Mt. Sinai Hospital in New York City. I have applied to be accepted as a patient, and am anxiously awaiting a response. Interestingly, the application form specifically asked if I ever had Lyme disease. Hummmm…….
In the meantime, I am doing my best to keep perspective and remain positive. Oddly, the diagnosis brought a sense of calm. First, it’s always good to have a name for what’s wrong with you. Second, now I can get my expectations in the right place. Before I knew about the three to six month time frame I went to bed each night hoping tomorrow would be the day I woke up feeling better. Then when I woke up not feeling better, I’d be disappointed.
Now at least I know what to expect. And what I can expect is to feel badly. All day. Every day. For a lot of days. It’s Ok. It really is. There are people who face so much worse, so I am not going to complain about this. And I do believe it will eventually pass. I just need to hang on.
So, what is it like to have Mal Debarkment Syndrom? I feel very nauseated all the time. I am also very, very tired. I think my brain is working overtime to sort itself out. Sometimes I feel like I’m on a boat. Sometimes I feel weird pressure in my head. Sometimes my head hurts. Sometimes it’s not too bad and I can sort of function. Sometimes, it’s horrendous and I have to lay down and cover my eyes. Sometimes I can look at a screen or read a book, sometimes I can’t.
I spend most of the day in a comfortable chair, remaining as still as possible. Any movement whatsoever makes my symptoms worse. However, there is one exception, and apparently, this is a classic symptom of Mal Debarkment Syndrome. I feel fine when I’m riding in a car. That’s because my brain thinks I’m still on a boat, and therefore it’s calibrated for being in motion. Consequently, when I get in a car, my brain thinks all is well. The only downside is my symptoms flare when I get out of the car. It takes fifteen to twenty minutes to recover and get back to feeling regular crappy versus extra crappy.
It’s a funny little syndrome, isn’t it?
I can’t tell you any more about it, because I delegated the online research to my husband. In the brief research I did, I came across the words “devastating” and “debilitating” a few too many times, so I decided information is not power in this case. My husband is on it, and is keeping me on a need to know basis, which allows me to maintain my optimism.
Today marks exactly one month since I stepped off the ship and into this crazy syndrome. I have spent much of that time in my chair, which has given me plenty of time to think. And I can really and truly say I can find the blessing in this. My mind and body are so exhausted from trying to keep up with life while also battling lyme and anxiety, and my current situation amounts to a giant time out I never would have taken. I need this rest. I am benefitting from this rest.
You would think I’d be restless with this much down time, but it’s actually the opposite. I have an odd sense of contentment. There is no way to power through this and just keep up with life, so my only choice is total surrender. And everything that’s not important has fallen away. I simply feel too crummy to get wrapped up in the small things I usually get wrapped up in. As a result, my life is distilled down to it’s essence. I’m grateful to see the sun rise. Grateful to have a husband and daughter who love me. Grateful all our basic needs are met each and every day. We have food, clothing, shelter, love, and access to health care. Anything else is a bonus.
I know that all might sound overly simplistic or cliched, but I can promise you those are my genuine feelings. And I believe you can only come to a place like this through suffering. In my experience, suffering blows the clouds away from the sun and shines a blazing light on the things that truly matter.
I will recover from this. However long it takes. And I will be better for having gone through it.
Now, on a much lighter note, this may end up being a bigger problem for my husband than me. Apparently, I will always be susceptible to this syndrome, so once I get better, I am supposed to avoid anything that could possibly trigger it, which means I’m not supposed to get on a boat of any kind.
My husband is an avid boater. He owns three boats. Being on the water is one of the great joys of his life. We live in a water town.
So, there’s that. My poor husband.