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Infos about illnesses, disabilities and handicaps I either have or used in my books.
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In my book My Life with Dyslexia and other Shit, I talk about NPS (Nail-Patella Syndrome) yet I’m not going into details or do a lengthy explanation of the psychological effect of having it in our society.
NPS is a genetic disorder, with a 50 / 50 chance of getting it if one parent is affected. About 1 in 50K children born have it, some are new mutations, meaning there is no family history of it. Yet NPS isn’t anything that will shorten your life, and depending on where you are born and living, nobody might care about how you look. Sadly those places are rare.
In our society, there is a certain picture of how people, especially girls should look. Fingers with underdeveloped, split and sometimes not really visible fingernails, is not part of that look. Not being able to stretch your arms fully, or being overly skinny because you can’t put on weight and muscle mass is neither. Those are the visible signs of NPS, yet since it’s not very well known and somewhat rare, most people jump to conclusion seeing those signs, rather than simply ask.
Many assume that the person affected by NPS is chewing off their nails, had their arm broken and badly healed, and has an eating disorder. The Sad fact is that because of people acting like that, a genetic disposition that in most cases shouldn’t harm can grow into a psychological problem.
It’s especially hard on girls when those ideas take root in the minds of their peers, and nobody is actually asking why their nails look that way but rather assume they know. In most schools physical education is part of the curriculum, and some teach gymnastics. Yet with arms that can’t be stretched fully, gymnastics are often hard if not impossible for someone with NPS, not all of it, but anything related to your arms and balancing on them. Like cartwheels, handstands or flip flops. Often the result is that peers look at the person affected as weak and clumsy. Not being able to gain much weight or muscle mass makes many NPS affected look undernourished, bony even, as if they aren’t eating well. This often leads other to think the person must have an eating disorder.
Yet those are just the visible effects of NPS and the reaction of society to it. The thing is, that there is more than just that behind NPS.
In addition, to what is visible, there are invisible effects of this genetic disorder as well. Many have weak tooth enamel, some cases showed that they had none to begin with. If not taken care of at a very young age and continuously treated, it can cause the person to lose their teeth at a young age.
There is a high chance of developing eye problems like glaucoma, and kidney problems that can lead to kidney failure if not diagnosed early enough. However those are things usually not coming up until adulthood.
Things like ADHS, Dyslexia and other learning disabilities, however, establish often at a young age, and add to the pressure a child with NPS will already encounter growing up.
In addition, to all of that comes the problem with the patella, part of the knee joint. In many cases, it is underdeveloped, deformed or not even existing. This can cause pain while growing up, as well as later in life. Walking and sinking down to your knees can be uncomfortable or painful, sometimes the knee will lock and make it impossible for the person to get up on their own.
Since it is a genetic mutation, there is always a chance to pass it on to the next generation. Over the years, I often heard people say that if they had known that, they wouldn’t have had children. A statement that saddens me, because NPS in itself isn’t that bad of a handicap. Most of its effects can be overcome or controlled, and only a few cases have all related symptoms.
In fact, if I look back at my own life, and take away the pressure and pain caused by society, I can’t say that NPS made my life miserable until a few years ago. Only when I developed Fibromyalgia, which also is often connected to people with NPS, did it make my life worse. In any other instance, it wasn’t the genetic mutation, but the people reacting to its effects that made my life hell at times.
I and many others could live with not having fingernails, not having to paint them, and trim them and endure the pain of breaking them, if not for the ideal picture of how we should look. And the same statement goes for all the other deformities and health problems that come with it.
POD publishing giving authors the opportunity to reach minorities traditional publishing often can’t reach, or forgets.
As independent author / publisher, we have a prime opportunity thanks to Publishing on Demand options. One, I myself hadn’t noticed until recently, when learning more about my own disability. Those who know me, know that I’m dyslexic. What not many know is that only about a year ago, did I start to actively learn about the disability I have. Noticing that I was on the lower end of dyslexia, and that there are many out there, struggling so much harder.
That realization got me thinking, and then thinking some more, and then asking for input from those affected. There is a lot we, as authors can do to include minorities like dyslexic readers and reach out to them. Print on Demand being a great benefit in that.
I know that the larger part of our readership is the not affected kind, who had no trouble with reading, for any reason. However, considering that 15% – 20% of our population is dyslexic and that is only one out of many minorities we can reach, it’s worth considering to reach out to them. Don’t you?
The real question is the how to do that, and what minorities can be reached?
I started with those who are dyslexic like me, simply because I know where to go to ask and get information. The thing is most groups are focused on the support of children and their parents. Yet there are thousands of children’s books and young adult novel authors out there, publishing independently. The good thing is, what helps the kids and makes it easier for them, counts the same way for adults. So no matter if you write for pre-schoolers or adults the things we can do as author to make it easier and to include them in our readership is the same.
Of course it comes always down to cost, which is the reason I wouldn’t go any other way then through a POD service like Creatspace or Lulu. It takes the burden of publishing costs from us, and minimizes the risk if we don’t sell, or can’t reach that minority with our promotional efforts.
Considering my own two books I was surprised to find that with my second one I already implemented some of those things to make it easier. I guess it was the reason I liked the design of my paperback so much.
However my first book Waiting in the Wings would not accommodate a dyslexic reader any more than that from any other author, who has no clue on the how. I never knew how complex of a disability dyslexia is until I begun to dig deeper. To explain how dyslexia work, why people have it, and all that comes with it would be a book on its own. One I don’t want to write.
However, even without understanding the why’s we can implement changes or open up a separate line for those minorities. What I mean, and will do with my own books, is doing a special edition, with its own ISBN and eventually a different cover, for dyslexic readers.
It doesn’t cost me more than my time in the end, but opens up a new market, and if I don’t sell anything, I still haven’t lost more than the time invested.
Enough now of trying to convince you, I’m pretty sure you are all smart enough to see the opportunity. Let me tell you instead of what can be done.
• First paper, I always thought higher contrast was good for dyslexic, now I learned differently. Less contrast is better for most, meaning go with cream in your paper choice.
• Second the font. A serif font or dyslexic font (which can be downloaded for free here http://opendyslexic.org/) otherwise you can use Comic Sans for example.
• Spacing between lines should be 1.5 or double, double is better. In addition you have the option in word to widen the space between letters. Set it to Expand. (right mouse click, or modify normal, then go to Font, Advanced and chose it in character spacing.)
• Example for Normal spacing
• Example for Expanded spacing
• Example for Expanded spacing in 1.5
Those are the things we all can do, without going too much out of our way. Of course I understand, I’m after all as much business woman as author, that by doing so the production prices will go up. I roughly estimated that it will be most likely about 10% to 15% more, then for the average reader.
If you as author want to take those extra cost from your royalties and sell the book to the same price as your others, or charge accordingly more, is a decision each must do on their own.
In addition to those adjustments, those who can could make their book into an audiobook. This would not only reach dyslexic people, but any readers that have problems with their eyesight as well, including blind people. Regarding those I will look into ways to get my books offered to be printed in braille as well. However that will be at another time, and another article. For now I leave it at this, and let you think about it. Personally I only see a way of gaining readers, without great investment.
In order to see the exsamples you need to open the pdf file, sorry
So… lately I have been asked how I deal with my Dyslexia, and how I teach myself to get better in spelling, grammar and such. So here it goes.
I say in my book, but if you haven’t read it you can’t know of course, that when I found out I was dyslexic with 18, I started to research it and tried several techniques I found in books. None of them worked for me. If that was because they were designed for children, or just not for me, I don’t know. After those first few tries I tried again from time to time, but just couldn’t find anything that would work for me. Maybe it was the German language that made it harder, I don’t know. Truth be told, I made my peace with being dyslexic a long time ago, and have stopped thinking of myself as stupid or incapable a long time ago. So basically for several years I didn’t try to better it, because it’s part of me and I don’t see why I have to change that part… well, I do know… but I didn’t care and in a way still don’t. I am me, and me is dyslexic… done.
However when it was evident that my Fibromyalgia would force me to stop working at some point in the future, my dyslexia became a problem again. Becoming unable to do physical labor, would mean I would need to take a job in an office, which in most cases includes writing, something not exactly easy for me. Well I can write, just not always right.
In Germany I was taught from the first day of school that words are spelled like they are spoken, and most therapies I could find were based on exactly that. With English that simply doesn’t work. The language has too many words that sound the same, but are written totally different, or slightly different. The way I had tried to improve my German spelling, was utterly useless now.
Yet at the same time I didn’t think that using anything I would find in books would help, so I tried to find out how to help myself.
Writing in Word and using the spellcheck I soon noticed that if I corrected wrong spelled words myself, instead of letting the computer do it, I started to remember how they are spelled right after a couple hundred times. So every time my spellcheck underlined something, I deleted it and wrote it again, until I got it right. That meant sometimes to write it five or ten times, and when I used that word again, I would repeat that procedure and at some point I started to write it right.
Yet spellcheck isn’t perfect, you can activate all its capabilities, but if you use the wrong word and spell it right, it won’t correct it. Or rather if you spell a word right, but it has a different meaning, but sounds like the word you were trying to use. For example… ruff and rough, it’s sounded out the same, but I would often write ruff when meaning rough. The same is with words like women and woman or men and man… Where and were….
This is where it gets often complicated for me. Because I actually need someone to point those out to me, in order to know I write or use them wrongly. Now sadly you don’t find many people who are nice enough to send you a PM saying… Hay, liked what you wrote, but did you know you used ruff on page soandso and it should be rough? Just wanted to let you know…. No sadly those are very rare…
However I figured out that using either Narrator or another app that will read my text to me, I sometimes can find some of those problem words. When I find them, and figure out how they are written right I put them down on a list I hang up beside my computer when writing. The list has all my word I have problems with on it, telling me their meaning… like this is plural, this is singular, or this is past tense… you get what I mean…
I know that I also make a lot of grammar mistakes and that my punctuation is horrible, but decided to work on those once I actually get along with the spelling. In most cases I will build my sentences the same way I speak or hear others speak. For punctuation I do the same as when searching for words spelled wrong, I use a narrator that read my text to me. That way I can often find where I need to place a comma or shorten or split a sentence.
If I look at texts written in the first two years after coming to Canada, and now, the difference is very obvious and easy to spot. If I had to put it in numbers I would say I improved by about 200%. My first tries wouldn’t even have matched a first grader.
I don’t know if what I do will help anyone out there, but if it does then I’m glad about it.
The title says it all, and yet it tells you nothing at the same time. Well the good thing is that you have already something in common with those who have been diagnosed with it recently. I was asked recently how Fibromyalgia impacts my life, what changes this condition has forced on me and how I deal with it.
Like most chronic conditions each individual is different, they share common symptoms yet at the same time it’s different for everyone. Fibromyalgia is a neurological condition, where neurotransmitter are messed up and send wrong signals to the brain. At least that’s how I understood it when I was introduced to it. However knowing what causes it doesn’t make it better or more bearable, and when you are confronted with it the first time you don’t really care about the how, but about the chronic part, the it will never go away part.
I started to be in constant pain in 2011, that’s four years now. I might have had it longer, with a more low level pain, but I can’t be sure. I only think so because I started to have those days were I wasn’t feeling so well, were I was fatigued and needed more sleep, when I was in my mid-twenties. What causes it, nobody really knows for sure. Some say recurring infections, others say a sleeping disorder, and then there are those who just shrug admitting they have no clue.
The thing is not matter what causes it, once you have it, it won’t go away again. All that can be done is manage the symptoms. One important part of that is to learn what makes it worse for each one, as well as what helps.
There are enough studies to have a basic idea. Like stress will make it worse, too much exercise and not I don’t mean like going for a run, but daily chores, from washing the dishes to doing the laundry or shuffling snow in winter. Sleeping badly can cause a change in pain level, not moving enough, bad eating habits, and alcohol consumption. Basically anything and everything can bring on a flare or change in pain level.
Now how to explain to someone who does not have it, how it feels like. It’s always amazing to me when I tell people I have Fibro how sympathetic they are, yet have no clue what it feels like. Yet it’s not fair to blame them for it, because you can put two people with fibro in the same room and they will describe it differently. However as a basic understanding, imagine you haven’t done any exercise in years, then run a marathon and then imagine the resulting muscle aches. Now, when you can do that, imagine living with that muscle ache for the rest of your life. Where you able to? Good, then you have an idea of my life and that of anyone with fibro when we don’t have a flare. In a flare, when the pain becomes more intense, you can take that pain and triple it or worse.
Before I got it, I was working as a cook in a fast paced environment, I was only hired part-time but picked up hours where I could and often had weeks or months where I worked full time. I loved my job, and it killed me a little when I got sick and even the holding of a coffee cup became torture. When I finally got diagnosed after almost half a year, I was put on medication and that helped a great deal. I wasn’t pain free, but it was manageable.
Still knowing what I had, I had to cut back my hours. I didn’t want to quit my job, didn’t want to find something else that would be easier on my body. However my reluctance was mostly born from the fact that I’m dyslexic, meaning an office job was pretty much out of the question as well. So to me the impact of the illness was quiet big, because it trapped me between my other health problems. I have dyslexia, as I just said, but I’m also socially awkward to the point where I avoid social settings and confrontations. It goes even so far that I have to work up courage to give someone a call, and calling someone I don’t know is almost impossible for me. Not exactly ideal for working in any kind of office job. Yet my body wasn’t able to cope with the strain on my body, my job brought with it.
I fought until November 2013 but then had to give up and quit my job. I could hardly stand for half an hour, and walking, sometimes almost running through the kitchen when we were busy had become impossible. Yet, I simply couldn’t see myself in an office job, where I would have to interact with people.
Well, my social problem is a weird one, at least to me, maybe one day I go and see a therapist about it, anyhow, I don’t have a problem when people came to me and start the conversations, or call me doing the same, I just can’t start it. I learned over the years a lot of tricks to get people to start the conversations, so I could work around it, but in a job that’s not always possible.
So, as you can see I’m as unique as the next person and in my case Fibro had a very deep impact to my life, because it made me incapable of finding a job. More so, because whenever I come in to a situation where I have to be the one initiating contact, it flares up because of my psychological problems. Stress level goes up = pain level goes up, it’s an easy and annoying equation.
There were many changes over the years, like I actually have something like a temper, at least in a familiar setting, which had to go. I very hard try not to get stressed out, to stay calm and dial my emotions down. Not always possible though, there are always situations where I simply can’t not get angry or stressed out, but I pay later for it.
Physically, I try to do what I can but when I feel fatigue I stop, even when it is something that needs to be done, and try not to get stressed out about it. Yeah well, not as easy as it sounds.
Most of the time I can manage, with the help of pain killers and other medication my life is mostly bearable. Yet I don’t know about others, but to me the cold is the worst factor in my Fibro. The moment winter comes around, I’m doomed, or feel like it. When the temperatures drop below 15 degrees Celsius outside, my personal hell begins. Yep I know, Canada and especially Manitoba are a really bad are to life in, in that case, but I love it here. However, winter pretty much makes me a shut in, and even staying inside in the warm doesn’t do much. I can’t avoid going outside once in a while, if it is for shopping, or simply because if I stay inside all winter long, I go stir crazy.
Once exposed to the cold, it’s like it’s settling in my bones and not leaving again until the natural rays of the sun burn it out. Sounds dramatic, and it might be, but that’s how it feels to me. Winter for me means not being able to bring my garbage to the dump, if not for my husband I would drown in garbage until early summer. It means not being able to make appointments, because I can’t promise anyone I will be able to be there. It means doubling up on pain killers, living under an electric heating blanket, and relying a lot on my kids for the housekeeping. There are day’s like today, where I don’t want to get out of bed, because even cocooned in my blankets I can feel the pain lingering, just waiting to be exposed to the slightly cooler air outside, to go up and make me feel like someone is carving into my flesh with knifes.
Then there are days where I feel fine when I get up, but by the time I have my second coffee I would like for someone to knock me out. But not all days are like that, there are enough days in between where the pain is bearable and I can do housekeeping and all the things that my kids haven’t been doing.
Now let’s move on to the things that help. Again each individual is different. As I said electric heating blanket helps, warming bottles, heat patches, basically anything that heats me up.
Then hot tubs, or jet tubs, at the moment I have one waiting for installation next year, if I can manage to get the money together. However, even a simple hot bath can help a lot. Medication of course, but aside from my Amitriptyline I try to hold back with pain killers as much as I can. For one because I develop a tolerance quite fast and no pain killer comes without side effects, to many too long, can damage organs like liver and kidneys. Rubbing alcohol helps, especially my hands and arms. The purring of my cats helps, because it calms me and fills me with joy. Taking my dog for a short walk in the summer time, can help too. Fresh air, and some fun swimming or just floating in the swimming pool helps too.
Now back to the impact part, as I said earlier developing fibro forced me to quit my job in the end. My other health problems caused me to be stuck, jobwise. Yet thanks to a nice publisher a few years back, I knew I was a decent writer. All I needed was an editor to fix my spelling mistakes caused by my dyslexia. So after I had finished with my pity party and my boohoo’s, I sat down and began to write again. Hopefully one day I might actually make a living with it. If not it still has the effect of making me feel useful and not totally like a loser. I also started my own printing business, and digital art business. Yes I know, I said I’m socially awkward, but the thing is, I offer by promoting online, not by interacting in person, and the people initiate contact not me. That, I can do.
If I do have to be in a social setting, I take one of my kids with me, and sit behind my table waiting for others to start the conversation. I would make a really bad hawker.
So year there is always a way to work around health problems, no matter the problem.
I also was asked if the people around me have changed in their interaction with me. I would like to say no, but that would be a lie. The problem with fibro is, as it is with any invisible illness, nobody sees that you are sick. You don’t lug around a heavy cast, sit in a wheelchair or wave as stick in front of you to find your way. The most people see are your features when they are screwed up in pain.
My husband believes me that I am in pain, but the extent of it is hard to comprehend for anyone, no matter if they love you or not. I often hear on networks and communities that the people around us have to learn to understand what fibro does to us. And I agree to some extent, but often try to remind them that until we got sick with it, we wouldn’t have been able to sympathize or understand either, and that we need to learn to accept that an outsider will never fully understand what we go through every day.
People I work with, friends and former colleagues say things like:
“I don’t know how you do it!” or “I can’t imagine what it feels like.” And those are nice sentiments and true and honest. The thing is, depending on the day I’m having, they also sound like pity, and placating.
Other might say things like:
“Come on, it can’t be that bad. Just suck it up.” Or “You don’t look sick to me, can’t be that bad.” Or my all-time favorite, “You just don’t exercise enough, all the resting and sitting around can’t be good for you. How about you go to the gym once in a while and exercise those muscles, I bet after a couple of times the pain will go away. It’s just because you don’t use your muscles enough.”
Am I getting pissed at those, sure but not for long. I know that a few years ago, I might have said the exact same thing. Not realizing that I hurt the person I said it to. Something I try to keep in mind when interacting with someone.
Fibromyalgia is invisible, it can be hell on some days and only hellish on others. It never goes away, there is no cure for it, and if anything it might get worse over the years. However, it doesn’t make life miserable either, not if you are able to hold on to those moments where the pain is bearable, to the times of joy and laughter, and the moments where you are able to forget the illness that has become your life.
It’s what I do, I hold on to those moments and life for them. It’s what keeps me going and makes me want to keep going. Moments with my family, or moments of success with my writing like a good review, are cause for celebration. And most of the time it works.
I hope I could answer some of the questions I was asked, and give you a little bit of a look into this invisible illness.