It’s REAL and I believe you.
Thousands of people depart to go on a cruise every single day. It’s a huge industry.
Would you want to take that seven day Caribbean cruise if you knew there was the distinct possibility that you could get off the ship and never be the same ever again? I don’t mean that the fantastic experience of seeing new and exotic places, ancient ruins and historical buildings has changed your outlook on life.
I mean you get off the ship and the world feels as though you never disembarked. The world continues to rock and sway just like the ship did, to the degree that you cannot walk a straight line and have great difficulty doing ordinary things like putting on your underpants or repeatedly bending over to do laundry.
Is this a real thing, or have I manufactured it to create a form of conflict a fiction novel?
I assure you, I’m not making anything up. I’ve created some awful tortures and gross deaths. This is so insidious that I don’t think even I could ever conjure it up.
It is called Mal de Debarquement Syndrome (MDDS) and it is horrifically real. I know someone who is afflicted, and her story has inspired me to include the condition as a major underlying theme in my novel Arlyn: Adjutant & Apostle.
Many medical professionals have never heard of this, and will actually tell a patient it’s in their head. Some sufferers go to doctor after doctor, perhaps 8 to 10 physicians, before finding one who recognizes the symptoms and puts the mystery together.
Having the diagnosis does not mean it will go away, however. If you do a search for the term, you’ll find a study or two, and a website or two dedicated to educating the populace. The information is interesting but limited. The single greatest source of information, cruise lines, won’t cooperate in gathering information. Having the condition more widely known might hurt their bottom line, you see. It’s an unfortunate fact of big business to ignore that which may do them harm and hope no one notices.
The average sufferer is a woman between 35 and 55. Some may have had her period during the voyage, but the correlation is not proven. However, a girl aged 15 is noted, as is a woman nearly 70 years old. Men also get the condition, but in far fewer numbers. It also can happen from simple things like riding an escalator or an elevator, riding a train, though I did not find statistics on the frequency of those incidents. While we cannot point one single finger at the cruise lines, it’s impossible to ask an elevator to gather statistics on people who get off and the world is swaying for the rest of their lives.
If you really want to understand how horrific this affliction is, read the discussion boards. You will get a blunt and heart-wrenching view of daily life with MDDS, straight from the fingers of those who suffer it. Some have endured it for decades. Some were fortunate that it went away within a few months. It seems the longer a person has symptoms, the more likely it will be permanent.
See, there is no cure. There’s not likely to be one because there’s not enough work being done for it. There really isn’t much of any treatment either. Doctors try this drug and that drug, usually antidepressants. But if the syndrome is linked to hormones and hormonal changes (such as before, during, and immediately after a woman’s period), antidepressants really aren’t going to do much of anything.
Lying down helps some people, but makes it worse for others. People have to go to work. How can you go to work when you can’t sit up or sit at a desk? If the world is rocking so much you can’t sit up for more than a few minutes at a time, how are you supposed to drive yourself anywhere? Maybe the motion of the car might help, but that’s not certain for everyone who has the condition. Some sufferers are completely incapacitated and are disabled for the duration of their affliction. Might be half a year. Might be a year and a half. What if you’re still afflicted ten years later?
Sure, there are good days and bad days, but simply walking a curved path or watching a video of a person on a horse could change a good day into a horrible day. If it goes away, there is always the fear that it will come back again, at any time.
I was compelled to bring more attention to this vicious condition. I asked question after question of my friend, and she was as enthusiastic as I about spreading word of the ailment.
Once I felt I had what I needed, I stopped working on the last third of a book and went back to the beginning to edit in instances of the condition. I spent several days reading and finding places where it would assert itself, building slowly in frequency and intensity.
I believe I’ve created a compelling story. Certainly it is a topic not covered in any fiction book I’ve ever heard of. A search of Amazon for the name of the condition finds nothing more than album titles and a mention as a very small part of a much larger book about balance disorders.
There is an experimental treatment of subjecting a person to opposite motion from those that make them ill, with modest success; but it is years away from being available as a treatment. Then we have to talk about insurance even covering it. There is a billing code for the condition, but that says nothing about coverage.
Quite simply, there is no fiction story out there like this one.
There are, however, thousands of sufferers who have no hope for an actual cure. I cannot help them suffer less; but perhaps I can help others to understand better what those with the condition are going through.
It’s REAL and I believe you.
And you are not alone.
Arlyn: Adjutant & Apostle will be available to read on Halloween, 2017
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