“The beginning is a very delicate time”, so is the ending…
Frank Herbert used similar words at the beginning of his famous Dune series. Allow me to add the four words with regards to ending things. Yes, it is time to bring Jason home, literally and figuratively. One year after the first book was published, the story of Jason Mendez and the Byeonsin is coming to an end. When I first opened the document for Blooming, the first part of the trilogy on my birthday last year, I had no idea where this story would take me. All I knew was that I wanted to write fantasy for a young audience, to be true to myself, and to keep it as contemporary and realistic as possible.
The Forest, this is where I have my best ideas…
Jason came to me, as my characters often do these days, on a walk through the uninhabited part of my home island of Styrsö. I had been contemplating writing a fantasy novel for some time, urged on by fans and reviewers who felt that my writing style would be “perfect” (not my word) for fantasy. I remained skeptical. Simply because I don’t like fantasy much myself. I am not a big fan of that which doesn’t exist, be it vampires, werewolves, dragons or whatnot.
So yeah, I’m a hypocrite. There are no Byeonsin. Or are there? Were there? That was the premise of the story, to create a group of people with a noble task, to keep Earth safe. Safe from humankind’s influence. We live in perilous times, the planet is warming at unprecedented speeds, we lose species (animal, fungi & plant) at a rate that we haven’t seen in eons, and all due to what we, humanity, have been up to since we began to heat our homes and drive our machines with coal in the past 170 or so years. The industrial revolution made us successful and rich (at least in the west), but it’s been fatal for the planet.
If you look at the struggle to fight for our planet, our environment, the young generations are at the forefront. Without much to lose in terms of creature comforts acquired over the past few decades, they are at the front line, fighting for Earth. So is Jason, a metaphor for all those kids out there, fighting to protect Earth.
The final installation of the Golden One is out now.
The Byeonsin, a metaphor
Who are the Byeonsin, and what is their role? When I first began writing Blooming, the Byeonsin was this super cool, secret group of people with amazing powers protecting the world. As my writing progressed, and I think readers have seen this about half-way through Blooming, the way they appear, changes. Gradually. In Deceit, we are tossed back and forth between hope and despair. What is going on with the Byeonsin, are they good? Are they bad? We don’t really know, and you’ll have to read book three to get the final answer. No spoilers today, as difficult as that is.
But without giving away anything of the plot in Reckoning, it is safe to say that the Byeonsin, as a group, are a metaphor for our bad conscience, our lack of action with regards to climate change and the havoc we’re wreaking on Mother Earth. They are a stark reminder that we are failing the planet, failing our fellow species inhabiting Earth, failing our ourselves, our children and future generations to come.
Make no mistake: life on Earth will prevail. Humanity’s situation is not unlike that of another group of animals that once roamed the planet: dinosaurs. After going extinct, some sixty-five million years ago, life continued unabated. Life adjusts, life thrives. So regardless of how we fuck things up, life will prevail. The current struggle isn’t about life, it’s about us. Do we want to continue to shit in our backyards until we suffocate in it or do we clean up our act in time before it’s too late?
A story for all ages
The Golden One is YA, a series for teens. But just like so many other YA stories have captured the hearts of all generations, The Golden One isn’t just for teens. Given the feedback that I’m receiving, the trilogy is captivating grown-ups as much as it captivates kids. And that is as it should be. Because the best stories aren’t “adult” or “YA” or whatever. The best stories transcend generations, age and time.
I think there is enough depth, enough ambiguity, to also get adults thinking and engaged. Life is complex and where the youngest readers will enjoy the story, the excitement, and action, older readers will be engaged by the subtext, the doubt and the interactions between characters. Or so I hope.
Reckoning is available, starting today, at selected bookstores and online as an ebook, in paperback and as an audiobook, beautifully narrated by Vance Bastian.
Happy reading and, as I like to say, welcome back to my world…
Few topics engage the young generations as much as the threats to our own future
I never really reflected on what The Golden One would be about. As so very often, the inspiration came from within. And even though I began work on the book months before our local heroine Greta Thunberg first began her climate strike, she and the hundreds of thousands of kids who’ve followed suit, are excellent examples of how today’s teens and young adults are really engaged in the struggle to preserve our future, much as the young during the eighties fought against the threat of a nuclear war in Europe.
Our planet, our only future
The final installation of the Golden One will be out 9/19.
It’s easy to dismiss children. What do they know? It was how I was raised, how I was treated by the adult world growing up in the seventies and early eighties. My words, my views of the world weren’t worth considering. Listen to my interview on the WROTE Podcast to hear more about this like of reasoning.
I think that experience has taught me to never ever make that mistake myself. I try to take our own son’s views very seriously. This is not to say that he rules our house. But my husband and I pride ourselves in allowing him to have a say in our family planning, be it dinner, vacation plans, etc.
When you read sci-fi books or watch TV, you might think there are countless other worlds out there for us to reach. And make no mistake, there are! The problem is that we simply can’t reach them. Not now. And even if we were to invent Star Trek’s warp engines, and even if we would be able to build the amazing starships, how do you get ten plus billion people off one place and onto another? I for one wouldn’t want to make the choices of the disaster movie “2012“. Remember that? The four arks launched from the highlands of Tibet? Every ticket one billion Euros?
No, even as a sci-fi and fantasy author, all of that is either too far-fetched or simply too cynical. I am on the side of our children: we need to save the planet we have, this beautiful blue orb, spinning around our son, sol. And make no mistake, fixing our environmental issues isn’t about life on Earth, that will most likely prevail in some shape or form for billions of years to come. This is about the life currently inhabiting this planet, and it just so happens to include the one species we refer to as homo sapiens sapiens.
How does The Golden One trilogy accomplish this?
Without spoiling the ending of the final book, which is due to hit bookstores next week, The Golden One–Reckoning will provide hope. I want readers, from young teens to youthful retirees to feel empowered by the actions of Jason and his friends. It’s never too late to act. Resistance is not futile. But I also think that an important lesson is this: don’t expect someone else to do the work. We all must do our part, and we can’t wait and see. Time’s too precious.
We see that already in book one, Blooming, when we first meet Jason. The unique point of view of these young heroes clashes with that of the adult world, where order is paramount. They seem to act rashly, according to the adults. I’d say their actions are timely, expedited by the threats to their home town. Their success is theirs alone, but even the adult world profits, as unaware as they seem to be of it. I think the message is clear and without spelling it out here, I think readers of all ages will understand.
Failure is not an option!
You know, I’m not sure that humanity is really threatened by global warming. I know this may seem preposterous a claim, but just like the four arks in 2012, I think that there will always be people rich enough to be able to afford themselves a sanctuary where they might be able to survive the hottest weather or the fallout from a nuclear winter. There’s e.g. a reason why so many ultra-rich have invested in property in the remote southern island of New Zealand.
Yet for someone who doesn’t own billions, that is a cynical way of thinking. Already we see the effects all around the globe. Water is scarce in places such as Cape Town or Chennai. Rising sea levels risk making megalopoli all around the world uninhabitable, from rich Miami to poor Dhaka. Imagine hundreds of millions of people having to flee for their lives.
May my own country’s history serve a reminder
Refugees at the border in Melilla. European border fence in Africa.
Now picture Europe 2015 as a measly million refugees fled Syria. Four years later, populists across Europe and the US are still riding the waves those refugees gave rise to, from Trump to Brexit, Hungary and Italy, to name a few. If one million people caused such a stir, how will this planet handle refugees numbering hundreds of millions, a billion people even? It’s not hard to foresee closed, very hard borders everywhere, people storming against barb wired fences and “beautiful” tall walls, and from there, things will quickly deteriorate, and knowing my own species, the use of nuclear weapons cannot be entirely dismissed.
Once upon a time, Sweden was a poor country. In the mid-nineteenth century, people were starving. Dying. And they left. Over a million Swedes sought their luck in the west, in the promised land, at a time when there were no walls, long before “maga” became a hashtag and a rallying cry for a desplorable despot. That was a sizeable portion of a quickly growing population. If a quarter of the population (1900) left their country, imagine if a quarter of the population in threatened countries suddenly began to move in Asia, Africa, and South America. It doesn’t paint a pretty picture.
This is where my books come in, not because it stops that wave of people from moving. Not because it will stop half our animal and plant species from going extinct. No, that is not what the book is about. The story is to provide hope, and a sense of “can do!” Because unlike the world of books, there will be no golden butterflies, no shapeshifters and no space ships to save us. We have to do this ourselves, and my money is on the young generations who have not yet become complacent by the creature comforts of adult life.
I’m very proud that this story will be out next Thursday, and I hope it finds many hopeful readers. Pre-orders for Reckoning are available for the ebook now on Amazon and elsewhere, and ebook, paperback, and the audiobook will all be available September 19. If you’re new to this trilogy, please check out books one, Blooming, and two, Deceit before you embark on the final leg of this epic journey.
As a writer, I am aware of the raw power of my tool. As a linguist, I am also aware of how many of the world’s languages have evolved from common ancestors, how they are related and how the meaning of the same word can differ from one sister language to another. Language is extremely complex, and the more you learn, the more you know, the easier it becomes to get lost in language, to make mistakes and realizing just how little you actually know.
Just last week I was made aware, in a most humiliating way, that an expression used in the blurbs of one of my books had offended a group of people. I was given a proper dress-down, in public, which led me to withdraw that particular book from the table where I was selling it along with my other work. Seems that both the sensitivity readers (which we’d used, despite the accuser’s assumption of the contrary), the publisher, editor, and this author had completely missed it. I won’t go into details here, but oddly, when discussing this with fellow authors and members of the affected group/minority, everyone was puzzled and wondered how else to express oneself today, to be politically correct and not offending anyone.
Languages evolve, all the time. There are many examples in history and from literature where the most highly acclaimed books include wording that is no longer considered okay. We no longer use “nigger” or “negro” to describe blacks or Africans, which is a good thing. African American is the term used if you’re in the US but is of little help to describe black people from other parts of the world. But when Astrid Lindgren wrote her Pippi books back in the 1960s, it was perfectly okay to write that Pippi’s father was “negerkung” (negro king.) In recent editions, the term has been replaced. This is probably the most famous example in terms of language evolving, but there are literally thousands of expressions that have changed, be it for people with disabilities (or function variations as may be more modern), people from within the LGBTQ community, etc.
Lost in translation: politics, philosophy, religion & culture make things complex
As a member of the LGBTQ community, I am a member of a minority, and I’ve always been acutely aware of how I’m labeled by society. Often times words also carry a political notion, a belief held by the speaker. After Chernobyl, people who were fighting against the use of this particular way to generate power were, in German anyway, always speaking of atomic power, and the slogan “Atomkraft, Nein Danke!” became a household term. The proponents of nuclear power did not use atomic power. They call it nuclear power. Neither terms were “offensive” to anyone. They simply indicated a political belief. There are many similar examples of words and expressions who carry a philosophical belief within the word: capitalism vs. free enterprise, sexual orientation vs sexual preference, etc.
Words carry political beliefs
Then there are differences across cultures, which make many of the words which are used across languages dangerous pitfalls. Even within a given language family, a word that carries a connotation in one country may not be viewed the same way elsewhere. The word black is one such example, where it may be deemed acceptable in some flavors of English, but might get you stares if you use it in the U.S.
You might also remember the time when the Swedish chairman of BP was criticized for using the term “little people” in a White House press conference. While a perfectly acceptable term in Swedish, translated ad verbatim to English it becomes offensive. What he meant was “ordinary, regular people like you and I.”
How we view history changes
To make matters even more complex, we are, as a people, really bad at looking at history through the lens of the time. I’ve just returned from Washington, DC, where I also visited the National Archives Museum where the original Declaration of Independence and the American Constitution are on display. When you read these documents and you read things like “We the people…” or “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” yet are aware that this did not apply to everybody. “People” and “all men” did not include Native Americans, Africans or Asians. Because if you believe in slavery it makes no sense to assume that Africans were entitled to “life, liberty and the pursuit of happiness” because clearly, they were not. Men, back then, obviously also did not apply to women.
Did not apply to blacks, women, Asians or Natives.
However, today, we look at these words and we can feel pride in the accomplishment of the founding fathers, even if we’re Korean, Sudanese or German, and decisions rendered by the Supreme Court of the U.S. has updated the interpretation of the meaning of these words over time. It just so happens that the probably biggest struggle within said court these days is in the interpretation of the constitution: as a document in time, or to read it literally, or if you prefer, a liberal or a conservative interpretation.
Labeling a group of people, labeling “me”
Language evolves, all the time. Would it not, we’d all still be speaking a proto-human language we don’t even remember. Latin would not have evolved into Italian, French, Spanish, etc., and Germanic into German, Scandinavian and English. So that’s a good thing. We also introduce new words, we share them across languages and cultures and make new words our own.
It’s a good thing that we no longer use words like “nigger”, “cripple” or “faggot”, as the negative connotations are painful reminders to members of said communities of a painful past. And language continues to evolve: it’s better to say transgender than transsexual, as the trans experience isn’t primarily about people’s sexuality but more about their gender, we talk about marriage equality rather than “gay marriage” because a marriage is a marriage, it has no sexual/romantic orientation.
For most people, all of this is way above their heads, and they’re not really affected by the terminology used within a certain community, and how groups try to improve on language to make it more inclusive and less offensive, divisive. For older generations, much of this may pass them by. However, when words and expressions are used that are hurtful, the consequences can be dire, and we can observe this in our everyday lives. Ten years ago, gender fluidity and trans people were not discussed in mainstream society. The language was very CIS, except for the affected people. Therefore, for most people, meeting members of the trans community can be an interesting and frightful experience, as it not only challenges the language they speak but also some of the very fundamental core foundations of their education and the two sexes: male and female. Migration challenges other long-held beliefs.
Political correctness and the backlash of the Trumpian era
For some, things have clearly gone too far and they push back. Migration is used as a term to lump together people who come to our countries for very different reasons. No longer is a distinction made between refugees and economic immigrants, it’s all equally bad. And in our strive to create a label that fits just us, we make it a perfect pitfall to be offended, for how is a stranger to know if you want to be addressed as Mr., Mrs., Ms. or Miss. Or something else entirely? How are we to know if you are bisexual or pansexual? Oftentimes, terms are used interchangeably and what means something to one person, has different connotations to someone else.
This may be controversial but sometimes I feel we have gone too far. We are too easily offended. And some people have begun to push back. To mislabel something doesn’t necessarily make a person a “bigot” or “racist” or whatever. They may simply not be familiar with the latest developments in the language. Trust me, it’s easy to get things wrong. When I first moved to the US in the eighties we used a “bathroom” to go potty, these days it’s “restroom” (although given American toilets, they’re anything but restful with their lack of privacy, but that’s another story.) In India, people still go to the toilet, in English.
The drive for political correctness sometimes feels like a provocation. And we are quick to accuse, prosecute and judge people for using the wrong words. The judgment can be harsh, particularly in this social media day and age where the action often precedes contemplation and thought. And I feel that some people have begun to push back. And as I’ve mentioned above, language is becoming political, but not always. But when someone talks about “gay marriage”, I for one assume they’re not supportive of the concept of marriage equality. But an I be certain?
The benefit of the doubt
Here’s the thing. Our societies have become very black and white in our political discourse, and we seem to have a hard time to accept dissenting views and opinions. There is less and less discourse in society about where we should head, how to overcome the challenges of our time. Instead, driven by 140 characters, we simplify and shorten. It’s not necessarily beneficial to being respectful to one another. Trying to do the right thing can be frightening and intimidating and a friend of mine recently said that the fear of saying the wrong thing has led him to avoid public discussions/settings. That’s a shame.
What about we give each other the benefit of the doubt? What if we were to assume that most people are NOT trying to offend us, denigrate us, insult us. So when they use a term we find offensive, don’t lash out, forgive and educate. Tell them how you’d like to be addressed, politely. Chances are, they’ll be grateful, i.e. if you do it with a smile and non-judgemental way. I often feel that we usually use the opposite approach: we’re offended, we judge and keep a grudge and the message gets lost, simply because the wrong word was used. I think we could all be helped if we calmed things down a bit, in the interest of communication and understanding.
I know that my own language is far from perfect, regardless of which one I use. I’m also aware that being multilingual increases my potential for making mistakes. I beg your forgiveness and oversight for any words used mistakenly.
Remember: you may not have the power to choose the words used to describe you, but you have the power to choose how to respond.
What is your take? Do you think we should tackle this dilemma? What is the best way to help people use the least offensive and most inclusive language? Feel free to use the comment section.
Words can be so hurtful, as they reveal what people believe, deep down
“He starts to look like a real boy…”
It was meant as a compliment. A new haircut, short in the back. I love my son’s hair, regardless whether it’s shorter or longer. I think he looks amazing in long hair. However, he’s only six years old and keeping long hair looking good requires more work than your average six-year-old is willing to put in. Plus his hair is dark, thick and hot in the summer. He eagerly accepted my suggestion to cut it shorter as we’re about to head out on a vacation to a warmer climate. The response above from a family member floored me. It was so hurtful. Is short hair really the trademark of a “real” boy, masculinity? And what did this family member think of Sascha before? That he was girly? Did they not respect my son’s choice? A gazillion questions running through my mind, none very pleasant.
Hair is fashion, at best
Manly? I’m sure he thought so…
The Vikings had long hair, men and women, so did many other peoples, including native Americans. Samurai kept their hair long, too, so did many other Asian cultures. Are Vikings unmanly? Samurai? #facepalm Even in Europe, long hair was a thing for men for the longest of times. Just look at the sixteenth to the eighteenth century. Picture Louis XIV of France with his wigs. Was he unmanly? No, of course not. There is nothing that says that a hairstyle would be indicative of one’s masculinity or how we fit into a gender.
Hair was even once considered so manly that Samson believed his masculine strength resided there. What a twat!
At fifty-two, I’ve had long hair, short hair, I’ve even colored my hair, but I’m still exactly the same person I’ve always been. Yet somehow, some people still believe that short hair is for boys and long hair is for girls. And they rejoice when a boy cuts his hair or a girl lets it grow out. No longer do they have to have their disgusting preconceptions challenged every time they see that person.
Sex, gender is a social construct
I strongly believe that sex and gender are social constructs. And I believe that most educated people will believe me with regards to gender. Sex? Not so much. And here’s the thing: if you’re born with a vagina, chances are you’re a woman. If you’re born with a penis, chances are you’re a man. However, nature is tricky and chromosomal anomalies, intersex, etc. exemplify this. Hormonal influences during the pregnancy will also affect the brain and how we come to identify, regardless of our genitals. That’s as far as nature goes. The rest is society. How we’re raised, the experiences we make, how we view our bodies, etc. However, the traits we attribute to “humans with vaginas” and “humans with penises” are entirely social constructs. And it is entirely society which attaches a value to a specific trait. The fact that vaginas are considered inferior to penises, for whatever reason. That’s beyond my comprehension, but it’s a fact nonetheless.
Therefore, every trait commonly associated with “vaginas” is considered of less value: long hair, be in touch with emotions, empathy, caring, you name it. And penis values are considered high value, e.g. short hair. No wonder my relative was so thrilled to see Sascha’s new haircut.
What about trans people, gender fluidity?
As a gay man, I had to accept that many of the traits I cherish are considered “feminine” and that I’m not only considered a traitor to my sex but also of less value than a straight man. Oh well. Lesbians are considered traitors to their sex because they refuse to let themselves be subjugated by men, hence a certain aura of “mystery” (=value) but also an almost unstoppable desire from straight men to subjugate them, break them. This incident in London is a great example of that.
Our trans siblings are those suffering the most. How dare one abdicate the genitals given to us by God? Yet even with trans people, society’s outlook differs. Trans men are considered a tad more valuable than trans women because at least they strive toward masculinity, want to be of more value. But trans women? Those traitors! To abandon the mighty penis! How dare they? The number of trans women murdered is among the highest in the world. They are a threat to straight men and there are a lot of feminists who do not accept them either. The absence of ovaries and the experience of “growing up oppressed” means that there are many women out there who refuse to accept trans women as sisters in their struggle for equality. They don’t realize that they’re doing ruling men’s bidding.
It goes without saying that gender fluid humans are enigmas. People generally don’t really know how to react to them, how to interpret them. Androgyny is sexy, we are mysteriously attracted to it, because they combine the best from both worlds, and that is somehow oddly attractive.
Is androgyny the key to the future?
I’ve always maintained that just like most people are bisexual (it’s a spectrum and very few people are stuck in the extremes) and the way younger generations are more open to being pansexual than strictly gay/straight is a sign that things are changing. The same is true for gender identity. While most of us are born with cis-genitalia our gender markers are very much on a spectrum, wildly combining “male” and “female” traits. And I would hope that someday we get to the point when those traits are valued equally, or at least valued how they help us build a successful society, not just the simplistic and ignorant “vagina < penis” formula. It’s just not helpful.
And who knows, we might even get to the point where gender reassignment surgeries and hormone treatments become less important as we can live and express ourselves the way we want to regardless of the physical traits of our genitalia and bodies. More gender fluidity for the people! This is not to say that some people won’t always feel the need to switch sexes, but the less important ‘sex’ is in a society, the lower the need to change, don’t you think?
We’re in this for the long haul…
My son comes home all the time with new things he’s heard in school, questions on his mind: “are boys better than girls?” only to state the next day that “girls are better than boys”. Statements like “girls can’t do this or that” or “boys can do whatever they want…” are tiring, but society is tirelessly at work to shape our children into the cis-minded drones we’ve been raised as. We take the debate every time, showing him that no, girls are just like boys, and they can both be whatever they set their minds to. I know of course that in reality, it’s more complicated but who am I to ruin a six-year-old’s life dreams? He’ll learn soon enough. He’s even come home a couple of times saying “I want to be a girl.” and I guess that’s fine, too. I have to walk my own talk and let him discover his body, his identity in his own pace. He’s only now discovering the differences between girls and boys. I wish they never would, that all of us could see each other as just “friends”. To get there requires us, parents, to pull the heavy duty, against all those who think that a boy in a short haircut is “real”…
No, it’s not because I write beautiful prose, capturing my audience from the first paragraph. Nor do I write tart poetry that puts readers in touch with their innermost emotions. I wish. Instead, it’s my personal life that resembles that of the stereotypical author: I’ve become a recluse. A hermit. I readily admit that I’m most comfortable in my own company. I wrap my loneliness around myself like a blanket on a cold winter’s day. It’s comforting, it’s mine.
Once upon a time…
Johnny Begood, up to no good
There was a young man who thought himself to be an extrovert, a man who loved crowded cities and to meet new people. All the time. What the young man failed to realize (or admit to himself?) was the fact that those interactions were costly. Afterward, he’d feel exhausted and he would often slump into a what might best be described as a depression, or at least a “low”. It would take days to get out from under the rocks.
But he loved to slip into characters, to play someone else (safe, right?) and be outgoing, entertaining, the proverbial “life of the party”. Here (to the left) is a photo from one such event about fourteen years ago, happy times in Budapest, before the country descended into near-fascism under the rule of Victor Orbán. Here we have our author playing his evil (heterosexual) punk-rock twin.
I still remember it all, vividly, the things I did in character, things which would probably be considered sexual harassment in these post-#MeToo days, and I guess I’d have been slapped across the face more than once had it not been for the fact that my co-workers knew that it was all an act and that underneath the mask of that crazy punk rocker was an innocent gay boy, happily married. I even joined and sang (sic!) with a band that night, even though I had no idea what they were playing and despite the fact that I had never sung before and without a clue what the lyrics were. But we seemed to be quite the hit with the crowd, probably buoyed by the copious amounts of alcohol flowing all evening.
Her Majesty took the prize
Her Majesty’s groupies. My feigned disinterest was actually fatigue and a splitting headache.
Since then, I’ve only been “out” in character one more time, four years ago, and I will be honest and say that the price was far too high. As successful as the performance was (from a strict marketing point of view), the cost was crushing, mentally and emotionally. From the near-constant sexual assault by the many females in the crowd, and the neverending onslaught of people on my persona, I was barely able to keep a straight face and had it not been for my character, I would’ve fled the scene long before the two-hour mark after which I returned to my room utterly exhausted.
It must’ve been then that I “relabeled” myself, into an ambivert, someone who is a bit of both, extrovert and introvert, stuck in the middle, outgoing at times, but in desperate need to recharge the batteries in between.
From extro- to ambi- to introvert
I must have been fooling myself, like the little gay boy who feels safer coming out as bisexual rather than gay right away, failing to see that he’s thus only hurting those who really are bisexual. But that’s another story. I think it is high time that I admit that I’m a full-fledged introvert. But how did that happen? Has it been these past nine years of working alone from home? The lack of people to socialize with on a daily basis?
Alone. This is how I feel best right now.
Or is it because I’ve just spent ten days in the company of guests? Literally 24×7 with no privacy? I don’t know, but when I left the gym yesterday, after spending the first two hours alone in almost two weeks,
I felt this overwhelming sense of relief, of finally being able to breathe again, and then it struck me that I was about to head into the worst day of my year, as a friend reminded me of having to call me tomorrow. Given how much I hate attention, my mood quickly spiraled downward.
Suddenly, I felt like I was choking. I couldn’t breathe and I was panicking. How would I get out of all this? So today I’ve been offline. My phone’s been disconnected, and I’ve refused to check certain social media, particularly messaging apps. I. just. need. to. be. alone. On the upside, I wrote several thousand words today. That was nice. And I had a great walk into the forest.
Obviously, I know I can’t. My husband will be home in an hour. So will my son. They don’t count, quite the contrary. Their daily homecoming is most welcome and I feel that I can be myself in their company. But everyone else better stay away or things could get nasty. I’m like the evil version of Annie Wilkes. I can be very protective of myself…
On the other hand, I still look forward to meeting people, and there is still part of me who longs to be social, to be out there, particularly when I guide guests and show them my town. Not sure what role I slip into, but that has never been a problem. At the end of the day, I can always take off the Hans-suit and be myself again. Strange, but I’m sure Paul Sheldon would be proud of me.
Off to an interesting meeting today, to learn more about alternative communication
Matt, the main character in my new novel (Opus XIII) is suffering from cerebral palsy. This is a condition that comes in many “flavors”. You may have seen characters with CP on TV, e.g. the teacher’s son, Walter Jr., in Breaking Bad or the main character in the new Netflix show Special. Not unlike autism, CP comes on a spectrum and in recent years, thanks to advances in medicine, we are able to help people with CP to live much fuller lives than in the past. For some, the damage from CP is so big that they are almost completely disabled, in some cases, they can’t communicate verbally. This is where alternative communication comes in.
I’m about to learn more about alternative communication
I’m sure you’ve seen how Stephen Hawking used a synthesized voice to communicate with the outside world. Mr. Hawking didn’t suffer from CP, he had MND. Over the years, you can read it in the Wikipedia article, he used different forms of alternative communication. Here’s a snippet from his appearance on Star Trek TNG:
Today, I have a meeting I’m really looking forward to. It’s with an expert on alternative communication at Dart, which is our local West Swedish center for alternative communication here in Gothenburg. I can’t wait to learn about how methods are developed and to see how I might be able to help Matt to break out of his shell.
(Almost) every case is different
You see, each person with a severe communicative disability is different. Okay, they all can’t speak, some might even be deaf, which makes things even more difficult. As babies and toddlers, our brains quickly learn. We recognize our names, realize who’s a mom and who’s dad, recognize them by putting a face next to a name repeated. My six-year-old son just recently entered a phase where he’s fascinated to learn that pappa and daddy not only have “titles” but names, too. He finds it titillating to call us Alex and Hans. Endlessly amusing.
We also learn to recognize objects, as they’re shown to us: forks, teddy bears, spoons, cups. You get the gist. And a healthy baby will repeat those words and will continue to do so for the rest of their lives as they learn new words. Now imagine if you can’t speak. You can’t repeat what your parents are telling you to. You just can’t get those words over your lips. In time people will realize that something is wrong, and they might take you to a doctor to learn more.
In time, with a lot of research, specialists at places like Dart will be able to find a way to help you break through that barrier. But how?
Not reinventing the wheel
I won’t spoil the story for you, but Matt is particularly challenged. There are a great many ways to help patients with communication challenges. Some might be able to use their hands to move a device that looks similar to a computer mouse to point to objects or letters and make words. Others use an eye tracker to see what the individual is looking at. However, not every method works for every patient and to make voluntary movements (rather than erratic ones which are common in CP patients), it will take a lot of time to determine what might work and what might not.
Unfortunately, not every patient with CP gets help. A while ago a friend told me about someone they met out and about with their parents, a young woman, severely physically disabled, unable to communicate. Just imagine the horror of being trapped inside your body, unable to speak, unable to communicate, make yourself heard, tell the world about your desires, your dreams, your hopes. Would you go crazy? In a way, this is what interests me the most about Matt’s journey.
For me, as an author, I’m not up to the task of inventing a communicative method of my own. Hence my meeting today. I have realized, thanks to Matt, what works for him. Now I need to find out just how I can use that to help him communicate, for the first time in his life. I can’t wait for that day when I get to write those chapters. I’m not quite there yet.
Realistic, believable, credible
At the end of the day, I need the story to be realistic enough to be credible to the audience, believable. Unlike the snippet from StarTrek above, this isn’t science-fiction. I can’t just “pretend” this or that, can’t simply attach a diode to Matt’s head which allows him to communicate freely. We’re just not there (yet?) The story I write is about Matt, it’s about someone who–for now–is relying on me to speak on his behalf. I want to write a story about a human being with a particular set of challenges and it won’t be until the end of the book that Matt gets to speak within quotation marks with his own words. Until then, he relies on me, on the things he tells me.
Books are important. The stories we tell are about seeing ourselves through the eyes of someone else. We want to read about “ourselves”. We crave to have our own life validated through the characters in the books we read. We need to see that we are not alone, the only one in the village. This is particularly important for minorities. And in a way, we’re all part of a minority, some may just be smaller than others. Sex, gender, age, creed, skin color, ethnicity, hair color, glasses, LGBTQ, disabilities, etc. All of these in infinite combinations. We’re all some of that, somewhere, somehow.
So is Matt. This may be his story, but it has to be relatable enough for abled people to maybe learn something and for people with disabilities to feel validated, seen. Maybe that’s a tall order. Maybe I’m not the right person to write about this (I’ve had this argument before), but I am an author. It’s my job to tell other people’s stories. Research helps me make sure I get it right.
I can’t wait to present you with this story, eventually, when it’s done. I expect it to be released next spring. Until then, we have the finale of The Golden One to look forward to.