Arlyn & Mal de Debarquement Syndrome

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
To Purchase, Click Here

If this sounds like someone you know, please share this blog with them.

 

Winky the Blind Kitty

Winky 1 -- brighter

This little sweetie is Winky. She’s missing one eye and the other doesn’t see. She’s a young one, new to her disability and very frightened. As of this post, she’s at the Long Island Save-A-Pet.

Yesterday I took my daughter there and we handed out quilted and crochet blankets I had made.

My friend/SAP Volunteer who drove us there got this little girl out of her cage. She was so afraid that she was a fluffy lump in her bed, unmoving and uncaring. When my friend brought her out of the cage, her legs were fully pulled up, tail curled under.

She was a lost soul and I could see it. She had given up. There was no joy normally present in a kitty. There was no life in her.

I spent about two hours with this scared baby in my arms. She was so afraid she curled up in my arms and lay her head down and wouldn’t budge. My friend had been concerned she was going to try to jump out and onto the floor, but I knew she wasn’t going to go anywhere. She couldn’t see the floor to know how far down it was. She didn’t know what the room looked like to know where to run and hide. No, she wasn’t going to be going anywhere.

With the last crocheted blanket over her and my arms around her, we sat on a bench for a good fifteen minutes to half an hour while my daughter petted her face and head and talked to her. Then I started walking around with her so she could hear different rooms and smell other animals. Those ears slowly started turning this way and that. Eventually the head perked up when she heard a voice she knew, so we went to that person to say hello.

Whichever way her head turned, that was the direction we walked. We smelled numerous other kitties, but they were mostly all sleeping. It was ticky nap time.

I went to the front entry where there was another bench and sat. Within seconds, the head was up and the ears were moving and that nose was-a-goin’!

WINDOW!!!

She knew what a window was, and actively listened to the cars and sniffed and sniffed at the cool air wafting in (it had started to snow on Long Island), and turned her head toward the door whenever someone came in. She remembered there was life outside that lonely cage.

She made no motion to leave my arms but did adjust herself a couple times, pulling herself a little higher over my elbow. I was happy she did that much. Would have been delighted if she’d tried to jump down, or even just purred. But…another day. Recovery happens in baby steps and just perking her ears to actively listen and turning her head to notice noises and be interested in them was huge enough for one day.

When it came time we had to leave, she went back into her cage…and straight to the blanket my friend/SAP Volunteer had put in first. It had her scent on it. My scent as well. Familiar and comforting and hers.

When I checked on her a few minutes later, and took a minute of video, her head was still up, her ears were still up. She was so markedly better that my heart was glad for her.

Sometimes, saving a soul isn’t about throwing money at a shelter. Sometimes it’s being held close to feel the warmth and heartbeat of another animal. Sometimes it’s just being held firmly and kissed and talked to and shown familiar things.

Sometimes, it’s just knowing you’re really not alone.

Quilts for Kittehs & Puppies

I have, in recent years, been giving away all the blankets and baby sweaters, cotton caps, scarves and drawstring bags that I’ve crocheted.

I’ve given them to the Ronald McDonald House of NYC for the children. I’ve given them to a nursing home for the residents. I took my daughter to the RMH twice so she would understand what it meant to give on so personal a level.

But that second time, one of the women working there was so snooty as she was coming in the door, telling my child “That’s right you stay there” that I’ve never gone back.

And then the nursing/retirement home. I learned that one of the employees took one of the blankets I’d made. I didn’t make them for employees. I made them for residents. So no more of that.

Having this pile of fabric, I’d thought to make quilts out of it. But who to give them to? Meanwhile, I helped my daughter (now just about to be 13) to finish her first quilt. A doll-sized piece for one of her stuffed animals. And I thought to myself…self, that would be a perfect size to go in a cat carrier when taking an animal home from a rescue center.

And I know someone who volunteers at a rescue center. Save-a-Pet out on Long Island. It’s not far. Postage shouldn’t be too horrible.

EUREKA! A new passion was born.

I had some triangles already cut and was going to make myself some head wraps out of them. I pinned them together to make rectangles, sewing them on the machine, pinned them to batting and cut it out. Cut out a larger piece of purple gingham left over from the bolt I’d bought for my daughter’s big blanket (now finished and only 13 years old when I did finish it!). I used the outer edges, rolling them over and over and securing to the top/batting layers to make the finished edge. Through the machine all around to secure them and then random meanderings around the middle to create the quilted effect.

Within a day, I had four little quilts finished.

They’re too small to be of much use to people but perfect for going inside the cages. I packed them up and shipped them off. My only stipulation was that the blanket an animal had with them in the cage when they were adopted should go with them to their new home. That way, they would have something of their own, something that smelled like them, when going into this brand new world where nothing would be familiar. If their own blanket with their own smell on it was under them in the carrier, they’d be more likely to be calm during the trip home. Then at home, they’d already have their own bed, wherever it was put…or dragged. They’re highly portable for the enterprising kitty.

I received pictures last night, and video, and it seems the first batch are a terrific hit. I’m simply delighted. I can see in the videos how exciting it is for the animals. They’re playing with the blanket, tunneling under, playing catch that thing with a hand sliding underneath. Such complete appreciation for this small bit of comfort.

quilts with kitties & puppy

Now I have another three on batting waiting for backs. Eight more tops sewn together. And about twenty more pinned or rolled together ready for the machine. But I need more batting. I will be having more as soon as I finish a blanket for my proofreader. But it’ll only be enough for four or five, I’m sure. I’ll have some more when I finish a quilt for myself. But, again, only four or five blankets.

I need to buy batting. And I need to pay for postage. And then when all of these materials are used up, I need to buy more fabric, more batting, more postage.

If you would like to donate cash, I’ve set up a GoFundMe account and also have a Donate button through PayPal. You can easily access whichever you would prefer to use on the Charity Work page of my website.

If you would like to purchase materials for me, I’ve made a Crafts Amazon Wishlist with fabrics and batting. I prefer a batting that’s made of recycled bottles and the size I prefer to work with is only $15 plus shipping. And I found a bunch of high quality quilting fabrics as low as $1.49 a yard! Postage for the box with the first four was about $6. It was between 1 and 2 pounds. Projecting ahead, between 3 and 4 pounds will be nearly $8. So that will quickly add up as I continue on. My initial investment has been only that first postage because I already had the fabric, the batting, the thread; but from now on, I’m having to buy things.

It’s such a worthwhile project. I cannot afford to throw wads of cash at charities. But I can offer my hands and create some comfort for the creatures who find themselves in such an unfortunate circumstance.

“We had a 10 yr consensual relationship, so I didn’t rape her.”

[Paraphrased] “We had a 10 yr consensual relationship, so I didn’t rape her.”

This is what Harvey Weinstein is using as his excuse for one of his accusers.

Okay, here’s the thing, tubby. Spousal rape is a real thing. It’s a law in all 50 states that a husband may not force himself on his wife. Husband and wife is a consensual relationship too; but if she says no or otherwise is reluctant and he has sex with her anyway, then that husband is guilty of rape.

A wife can withdraw her consent. She can choose to NOT GIVE her consent for any sexual interlude. It is her right. If a wife can do that, so can the women you hold power over but aren’t married to.

A woman, any woman, can say yes 1000 times. If she says no on the 1001st and you fuck her anyway, you are a rapist.

If she changes her mind in the middle of intercourse and wants to stop, you have to stop or you’re a rapist.

That’s how consent works out there in the vanilla/decent society world you work in.

I didn’t decide this. The courts did. I can’t wait to hear the “GUILTY on all counts” verdict come back on you.

I hope your cell is right next to Bill Cosby’s…and I’ll see you both (and your lawyers) in Hell, where your rapist (excusatory) asses will be MINE.

My Experience With a Meal Service — NOT an Ad!

I found what I thought was a really good introductory deal to Hello Fresh. I ended up paying about ten bucks for two meals for two people. But I didn’t actually want to receive that first box.

How did you end up with a box you didn’t want? you ask.

Because they make you put in your delivery address AND payment information BEFORE you get to see the food. I was able to select a preference for Beef, but that was it. (remember that for later)

I tried to cancel. When I couldn’t find a way to select my own first meals, and the meals they had on offer were nothing I’d be interested in eating in the first place, I clicked to cancel the subscription.

The first shipment, however, did not cancel. I received it this morning.

Okay, fine. Let’s see what they gave me, I thought. Maybe they gave me some ingredients I can make my own meals out of.

Bag #1: Turkey chiles Rellenos. Made with ground turkey. — I hate ground turkey. I mean with a passion. I actually don’t like turkey itself very much, or Mexican food. I would never have ordered this. I’d far rather make stuffed green & red peppers made with hamburger or sausage.

So this is a fail right out the gate.

Bag #2: Salmon with dijon mustard sauce and arugula. Just…sigh. I never make anything fish. I never buy anything fish. I might have tuna ONCE a year, out of a little pouch, in one sandwich. Maybe. I don’t like fish. And, might I say, that the amount of arugula included may have been enough for a garnish on the top but was not nearly what I would ever call a salad.

And I did not get my preferred protein. Beef.

I have wasted ten bucks.

Yes, it was all well packed. Two bags inside a cardboard box, with cotton wadding all around it, and the meat was between two thick ice packs under a cardboard plank. That IS a lot of trash. We have recycling of paper/cardboard, so all that went into clear bags. But the innards of the ice pack aren’t recyclable. You are to cut the package open, empty it into the regular trash, and then recycle the plastic from the ice packs. I’ll be turning at least one of the cotton wadding lengths into a lower back protector. Maybe I’ll make the other into a couple small quilts to donate to an animal shelter.

Yes, the ingredients were fresh. But it was nothing I couldn’t have gotten a recipe off the internet and gone to the grocery store around the corner to buy things for.

Sure, it’s convenient to only have as much turmeric as is needed for the one recipe. I never use turmeric, so portioning out the ingredients is a good thing.

I actually thought maybe I’d pluck out the seasonings for that reason; but decided against it. I grabbed up everything included, plus the instruction sheets, and went downstairs to knock on my landlord’s door. I gave them to her and her family. Here. Enjoy.

Otherwise…it’s going in the trash.

So thank you, Hello Fresh. My ten bucks went toward building Good Will with my landlord.

Carbon Monoxide Scare

Well that was fun. (10pm 4-25-2018)

Just had the fire department over to check for carbon monoxide. Duchess’ meter went off. Reset it to see if it would go off again. A few minutes later it went off. Reset it and moved it to another location to see if it would go off again. It did. It went off a third time ON TOP OF the corner of her bed.

So we took a walk to the fire department across the street to ask them to come check for us. I’m really glad I did.

I expected a guy or two to come over, right?

Oh hell no. The entire fire brigade came through our apartment. lolol Fully coats and helmets, pikes and fire extinguishers. They were all completely kitted out. I’m sure the various neighbors had a terrific “hey, what’s happening?” moment.

While not dangerous levels, they were getting elevated readings in every room. They found nothing in the other second floor apartment. Nothing downstairs. Nothing in the basement either. Literally just our unit.

Meters going throughout the apartment, they figured out it was the stove, and had us open all the windows while they pulled out the stove and turned the gas off (mostly off). Levels did start to go down with the ventilation. Fortunately, it wasn’t a very cold evening. With 55 degrees, but humid and foggy, the air coming in was quite pleasant.

Con Ed came about half an hour after the FDNY left, to do their thing. The technician found that the pilot light on one side of the stove had been up too high and was burning its own soot under the bottom of the stove top. That created carbon monoxide all the time. Plus the valve itself didn’t shut completely off when the fire department turned it off.

We might need a new stove, but the landlord has it under warranty. We’ll see what happens.

We’re without a stove for a day or two, but that’s okay. We’ll have Chinese tonight. lol I am considering getting an induction burner. I might not get it in time to deal with this event, but in the future and on hot days it could be a handy thing to have.

All is well. The FDNY and Con Ed tech were really kind about coming up, assured us we’d done the right thing in not delaying. With all the news reports of entire families dying of carbon monoxide poisoning, I wasn’t about to let it go.

So this is me telling you…if your carbon monoxide detector is going off, don’t ignore it.

We were very fortunate that it was very low levels; but it could easily have become much worse if we hadn’t taken it seriously.

PS…the one in Duchess’ room was the freebie I’d gotten from Con Ed. They sent a card shortly after we moved in, offering a free $30 detector. I got it for the heck of it, put it in Duchess’ room at the baseboard.

Her room is across the living room, down a twelve foot hallway, then three feet left into her room, then another eight feet back to the wall. THAT was the detector that went off. THAT far from the source.

I think the carbon monoxide was going through the electrical outlet on this side of the wall her room shares with the living room.

Living with Pain & Exhaustion

Twelve hours after our carbon monoxide incident…I can’t say I slept better. I can’t say I feel better this morning than other recent mornings.

I wish I could.

I wish I could blame being tired and achy and waking up with so few spoons on the faulty stove.

I can’t. I’m almost fifty. I’ve struggled with exhaustion for 25 years at least. Psoriatic arthritis means I ache in weird places from day to day.

I can take a vitamin D pill every morning and night. I can drink all the coffee my little drip maker can piss out.

I’m still going to be tired and achy because there are no cures for Psoriatic arthritis. Only treatments with fancy names and a laundry list of side effects that themselves cause me trepidation.

But I still go out and do things. I’m expecting to go out tonight for a few hours. Meet people, have fun. I’ll pay for it tomorrow but that’s okay. I’m going out again tomorrow. lol

Yes, some of us live with chronic pain. We have to manage our energy levels sometimes from hour to hour or minute to minute. We have good days and bad days…and bad days often coincide with days we have no choice but to get certain things done.

It doesn’t stop us from living.

We continue to do and to live not IN spite of it…but TO spite it.

Yep. I have exhaustion and psoriatic arthritis.

And they can both kiss my lily white ass.

How to Turn Off App Permissions on Your Android Phone.

Dearest Friends
 
As some of you have probably already had pop up in your Facebook feed, I’ve just received the “we banned this app. One of your friends used it to log into FB and your information may have been shared…blahblahblah.”
 

We all use a dozen apps in a single day. Maybe more. Anytime we download one to our phone, it demands access to a pile of information, from contacts and camera to microphone and location.

 
All the apps want that, whether we want to share or not. If we don’t allow it, they won’t let us download. So we have to accept it when downloading.
 
But we can stop it from continuing the very next minute.
 
For android phones, if you click SETTINGS, then APPS, then look in the upper right hand corner to see if there are three dots.
 
Tap the three dots. One of the selections is “App Permissions.” Tap that. (If you don’t have the three dots, look around different apps sections and see where the permissions are for your version of operating system.)
 
On the next screen after you tap the dots is a list. Contacts, microphone, camera, etc.
 
Go through each one and turn off any app you don’t want to access that feature.
 
For example, people are worried about facebook listening in when it’s not actually needed. During the grilling in Congress, Zuckman said FB doesn’t listen in; but this was a huge thing when access to the microphone first came out a year or so ago. Well, you can turn off that microphone.
 
I’ve turned off the microphone for everything except Google (okay, google, what time is it in…needs the microphone), and so does Messages. But I turned it off for FB Messenger. It sends your actual voice recording, not a text transcript, so that’s no use to me.
 
Camera. I’ve turned that off for most all the apps except FB, Messages, FB Messenger. I’ve turned off location for my contacts. Why the contacts need to access my location is beyond me.
 
If ever you find that you turned one off and it actually does impact usability, you can always go back and turn it on again.
I also went through my apps and deleted some that I no longer play on my phone, like Farm Heroes and Fishdom. I can always re-download if my interest in them returns.
The point is that we’re not completely helpless.
The tools to take back some control are there. You just have to know where to find them.

I’m an Author, Not Your Sex-Ed Teacher

I recently saw an author state that the reader would never see her characters engaging in unsafe practices, unsafe sex, or putting themselves into dangerous situations.

My first thought was…gosh, what boring books.

I’ve thought about her statement ever since, putting more words to my knee-jerk reaction.

Yes, you WILL see my characters putting themselves into dangerous situations. They’re going to make stupid decisions. Sometimes it’ll come out okay. Sometimes it WON’T.

They’re not always going to use the condom with strangers. They’re not going to use the plastic wrap dental dam for cunnilingus. They’re not always going to make sure everything is perfectly flushed out and squeaky clean before the penis that was in the anus goes back to the vagina.

They’re not going to negotiate what will and won’t happen and they won’t discuss what the safe word will be.  They’re not going to sterilize every implement the second it comes out of the toy kit

Why?

Because I’m not your sex-ed teacher.

I’m an author of FICTION. The entire POINT of fiction is to be fantastic. That’s where the word FANTASY comes from. It’s supposed to be over the top and exciting, not a lesson in all things personal safety and safe sex.

My characters are going to be stupid and reckless in their lives because you can’t be stupid and reckless in yours. Books are for immersing one’s self into another world where the rules we live by don’t apply, and living vicariously through those characters.

That’s the ENTIRE POINT!

I Will Not Nickel & Dime You

Dearest Readers

I have learned about a website that allows readers to follow authors and pay for the “privilege” of getting information and updates about new books.

I will not ever use this service.

I don’t think any reader should have to pay to know what page I’m on in the typed document. I don’t think any reader should have to pay to be updated on enticing little snippets.

In this day and age of technology and accessibility, it is exciting to me to be able to share these things with my readers.

I enjoy taking a picture of something sitting on a page of my handwritten manuscript or typed hard copy I’m using for edits. If this was 30 years ago, and my favorite authors were sharing in this same way, I’d be turning my computer every which way to try to read that blurred out, half-covered page.

I like asking if anyone would like to be a character and showing various versions of early covers for input.

In this day and age, author and reader have an unprecedented opportunity to take the journey of writing a book together. The author isn’t holed up alone at a desk anymore if they don’t want to be. Right here at our fingertips is the rest of the world and we can interact with it at any moment.

I’m not going to nickel and dime you to death along that journey. The only time I want your money is when that book is finished and available for sale.

Maybe I might miss out on a few bucks here and there, but it feels like extortion to me. “If you give me two bucks, I’ll tell you the name of the next character to die!”

I would not respect myself if I did that.