I could make this blog post a blow by blow account of this week’s AMAZING episode. I could tell you all how Riley and Gillian (Hassler and Vassey) had me making heart eyes at my screen, or how Sweet Kara makes me feel more validated as a non-binary person. I could even mention that I about squeed the place down on seeing Maeve Quinlan and Connor Trineer on my screen. But this post is more than that. This post comes down to one small moment in a scene that brought tears to my eyes and made me so amazingly grateful that Marem was cast as Riley. I’m putting the rest of the post under a cut because spoilers, and triggers.
One episode into Riley Parra on tello and I’m already desperate for episode two. I’ve read the books so I already had my own take on the characters, but this show means a lot to me. Actually it means a LOT to me. And seeing the first episode so well executed actually had tears in my eyes.
You see the author of the books, and the screenplay writer, Geonn Cannon, has been in my life for well over a decade. Geonn is one of my closest friends and I can and do tell him anything. I can officially say I knew this man way back when and I am so proud of him that my heart is swelling. I’ve seen him go from a tentative “do I have what it takes?” writer, to a well respected author and now screenwriter. And he’s still just as loyal, humble, and sweet as he always was.
Seeing Marem Hassler and Liz Vassey bring the titular Detective Riley Parra and Medical Examiner, Dr. Gillian Hunt to life just about broke me tonight. The chemistry between them in this first webisode was so strong and so perfect I just couldn’t help but go all googly eyed. They are everything that as a reader of the books I could ask for, and more. I actually texted Geonn to tell him that they got me shipping the characters quicker than he did in the books with that crazy chemistry.
If you don’t have a tello subscription I highly recommend getting one. This supernatural detective show is only going to get better.
At 35, I’m pretty much settled on the basics of what I do and do not like in life. I love hot chocolate made with coconut milk on cold winter days (especially when laced with marshmallows), long hot baths that ease my fibromyalgia, curling up with my sister for a Netflix binge of one of our favourite shows, and hugs from my absolute favourite person in the entire world. I detest ignorance, cold showers, doctors who won’t listen to me, and people who think they know better than everyone else. I know that I’m still educating myself on various things, and honestly, I’m okay with this, because it means that I’m still learning and evolving as a person and that means I’m still on my way to becoming whole.
There are, however, certain things that really piss me off. Things that lately have been driving me crazier than if you hid my Babylon 5 boxset from me and then expected me to go searching not only for each individual season and film, but each individual disc. If you did that, I think I might, just might have to kill you (I may or may not be joking here). The issue of consent is a big one for me. Actually consent isn’t big, it’s massive. And although, in today’s world when we talk about consent, we tend to think about the issue of rape and sex (which by the way, huge and rightfully so), aren’t the only forms of consent that we should be looking at in general, at least not in my opinion. This piece aims to take a look at the various ways in which I’ve been thinking about consent over the past few days. Of course starting with the obvious, because as I said, it’s obvious, and it’s still a huge issue.
We all know how this is supposed to go. Two or more partners of the legal age, who are not biologically related to each other within a certain degree, agree that they want to have sex, both say yes in a clear verbal agreement that is understood for what it is, and they have sex. If at any point one of them wants to stop, they tell the other, and everything stops. There’s no shaming, there’s no persuading. It can be discussed and understood, but there’s no pressure on the stopping party to do that. It may be a disappointment for the other(s) involved but that’s it. Now let’s break this down and examine it:
My first point here, is legal age. This implies that both partners are old enough in the eyes of the law in a particular country to say with certainty that this is what they want. This means that one of the partners should not be under the age at which the law deems it appropriate. If they are this classes as either child abuse or rape.
My second point here, is that they are not biologically related to each other within a certain degree. Now this can vary depending on country, or for say for example, within the US, on the State in which a person lives. But it’s generally accepted that a minimum degree of relationship would probably be first cousins (I did say it depended on the law of the area), but is more likely to be more widespread than this. Now generally this is to stop issues with deformities in offspring, which is why incest is so taboo. However, it can also help reduce the chance of abuse of children.
My third point is perhaps the most crucial of the situation, they agree that they want to have sex, both say yes in a clear verbal agreement that is understood for what it is, and they have sex. There needs to be a clear agreement. Not a nod or a mumble, or something that isn’t completely crystal clear. Nothing is to be implied at this point. Consent cannot be implied. And consent can only be given by someone who is able to understand the implications of what having sex means. Which would mean that a child or adult person with severely decreased mental comprehension (through alcohol, drug use, or other impairment) is unable to give consent. This means that sex should not happen with them. Period. Overstepping those lines brings you into the realms of abuse. And as a survivor of childhood molestation, I can honestly say, that I never consented to one single thing that my abuser did to me.
And finally, if one party wants to stop, the activities stop. I think this is where the BDSM community have it right. A safe word, a word spoken which pulls both parties out of the activities and back into the ‘real world’ creates a way out of anything either party feels uncomfortable with. No one should be forced to continue and no one should be made to feel guilty for not being able to. We each have our limits. And I know that should I have a a PTSD induced flashback during sex, I wouldn’t want to continue.
This is one that a friend of mine is currently teaching her child (I’ll call them Sara and Cain for the purpose of this article), and it ties in with sexual consent but can also be applied in different ways. Bodily consent gives a person complete autonomy over their body and what they deem appropriate or inappropriate and is something that as an Aspie, I am constantly aware of. I only like to be touched by certain people, I only like hugs from certain people. And as a wheelchair user, my chair comes under this category as well.
Sara is teaching Cain that only he gets to decide when he wants to give a hug or a kiss. If Granny says “Give me a hug Cain, I’m leaving.” And Cain doesn’t want to, Cain can say no and choose to wave instead. Granny has been asked not to get upset if this happens but to respect that it’s Cain’s choice what he does with his body. From what Sara tells me, Granny wasn’t impressed with this at first, but has slowly come to understand that from Sara’s point of view, this enables Cain, who is on the Autism Spectrum, autonomy over his own body and a way to control his environment and sensory input. I actually think it’s something we should encourage with all children. Because it teaches them about respect for self and others as well.
As a wheelchair user, my wheelchair is an extension of my body when I use it, the amount of people who barge into it as if it’s a problem for them, without consideration for me, or use it as a leaning post is irksome. Every time they do this, it jars my already sensitive body and causes pain spasms to shoot through me. Only I can decide who pushes me, or who touches my chair besides me. And deciding for me is not appropriate. There are a handful of people I trust to help me push my chair. And I can guarantee that these people are not on that list.
I do not, and never will understand the way in which some doctors behave towards those of us with long term health issues. Now don’t get me wrong, my GP understands me. I love my GP more than I can possibly explain. She and I discuss my treatment in extreme detail, we talk about our research into my conditions and we compare notes. But for the love of the Gods! One locum GP lately informed me that due to my venlafaxine I need a barrage of tests. I went home in a panic attack. Turns out I only need them IF I’m an adult over aged 50. And my GP had already discussed my particular heart issues regarding the medication with me. Then we’ll add the musculoskeletal specialist who has palmed me off to the pain clinic without actually letting me fully consent to it after I fainted in her office.
Alcohol and drugs
We live in a world where alcohol is central to everything. You can’t walk through most Western cities without seeing adverts for some form of alcohol. Our supermarkets are geared towards selling alcohol on cheap deals and by the case. Our televisions, radio stations, newspapers, magazines, and even our public transportation, carry adverts for vodka, whiskey, wine, and most other forms of alcohol. On a weekend, if, like me, you happen to live near a pub or club, you’ll hear people falling out of the doors at closing time, and the noise will continue until long after the establishment has closed. It’s normal to have alcohol at house parties, and depending on your circle, it may or may not be normal to find that there is some form of other substance on offer too.
Now don’t get me wrong, I enjoy a drink, on occasion. I also have been known, in the past to partake of the occasional joint (my uni days aren’t that much of a distant memory, although my age would like to convince me otherwise). But it’s my choice whether I drink or not, whether I join in with the taking of an illicit substance or not, and I shouldn’t be ridiculed if my choice doesn’t go along with the popular one. I know that Alcohol Use Disorder (AUD) runs in my family. I know that if AUD had been allowed to, it would have taken the life of one of my dearest soul family members before we ever got the chance to meet in this life. I also know that I have the genetic propensity towards addiction and that I spent 10 years trying to come off nicotine before achieving success.
During a particularly horrendous 12 months in which I lost 5 people, including my mum, whilst I was at uni, I went through a lot of binge which involved alcohol and pot. There’s a whole week of my life during which I lost 2 people that I remember a grand total of 5 hours of after hearing the news of the first death. And even those 5 hours are fragmented pieces. I’m extremely aware that those moments could have put me at greater risk of addiction. In the same manner that I became addicted to nicotine and self-harm. So I make the choice to say no when I want, and I shouldn’t be pressured into doing anything other than that.
Consent means a verbal affirmation. It means a definite yes to whatever is being proposed at the time. It doesn’t mean a ‘maybe’ or a ‘mmm hmm’. Consent is a yes. And that means that if a no is uttered, or someone changes their mind, no matter what they agreed to, you should respect their wishes. Let’s stop this bullshit and respect other people.
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IF YOU CAN’T BID, MAYBE YOU COULD CONSIDER DONATING ON THE DONATE LINK, OR JUST SHARE/REBLOG THIS POST TO HELP SPREAD THE WORD. C3 HAS A GOAL OF $10K TO REACH BY THE END OF THIS MONTH AND IT WOULD BE AMAZING IF WE COULD HELP THEM CELEBRATE FOUR YEARS OF HELPING THOSE WITH ALCOHOL USE DISORDER BY REACHING AND OR GOING ABOVE THAT AMOUNT.
Disclaimer: I do not work for the C3 Foundation, I am a supporter of Claudia and her work and I believe firmly in the work that the foundation is doing. I also believe in helping others, something that I know the Sci-Fi Community is proud to do.
A rundown of the past week:
- I posted about my past and lost a friend of 17 years who thought it was more important for me to do something they wanted me to do than that I finally felt able to say ‘This is me, this is why I have PTSD.’ Only a few months ago that would have made me crawl back into bed and sob. Instead I chose to look after myself and protect my well being. They called me bitter and twisted, and yet, my social media feeds have shared photos of puppies, kittens, flowers to cheer people up, uplifting news, and only on occasion rants and grumbles (my blog is my blog is my blog).
- I’ve had people bash into my wheelchair with buggies (3 out of 6 that went past whilst I was enjoying my lunch the other day), and had a woman purposefully slam her crutch int my chair. There was enough room to get two buggies past me at the same time, but apparently they all think they a) have the right of way, and b) can’t drive the pushchairs/navigate with walking implements very well and I’d hate to see any of them drive. Not an apology from any of them. One woman on two crutches (clearly a long term user as hers were red and not standard hospital issue) told the other crutch user off and the scowl she got in return was incredible. It’s really amazing the amount of empathy for others that seems to have been misplaced these days.
- Faced bullying online by someone I don’t even know today. Oh that’s been fun. I love having it made out that I’m faking my pain levels and don’t have a real illness. I also love having my photos stolen and badly blurred out. I could have cried, I could have blocked and tried to forget… nope. I sent out a rallying call. One that I continue to send. Please if you can, click the link, report the guy to instagram for bullying and harassment. I can handle being picked on but there are others that can’t. I’m lucky he chose me. I have a community who will support me and help me to get his post and him removed. He’s anti everything we believe in guys, girls, and non-binary peeps. And he and his Republican Trump following friends are soooooooo hurt by the fact that me and mine aren’t letting him get away with it.
WHO’S THE FUCKING SNOWFLAKE NOW?
My mum used to tell me that I was born fighting. That this little 6lb 12oz bundle of flesh that was literally blue from the waist down due to a coarctation of the aorta was not going to let anything stop them. I could scream with the best of them, and I was going to make that known. It would take an hour and a half to give me my bottle and approximately fifteen minutes for most of it to come back up. In 1982, not a lot was known about allergies to formula and or breast milk apparently. Nowadays I would have been put on some lactose free alternative.
I’ll never forget the pride in her eyes, every time she saw me accomplish a goal that they said was near impossible. My fifth birthday, for example, Mum spent most of the day in tears of joy that I had reached that day. The day that they gave me a twenty percent chance of reaching. And when I reached my sixth birthday, the birthday they said I’d never reach, and each birthday after that, her eyes would always have this teary moment which she would quickly blink away as we cut the cake, or I opened my presents. When I got onto the year 5 netball team, she was so very proud of me, she took me out for ice cream. When I got my scholarship to the secondary school I wanted to attend, she took me for lunch at my favourite cafe despite her own illness. My father may have been horrible (to say the least) to us both, but she never failed to make me know how much she loved me and how proud she was of me.
Mum instilled in me that my disabilities couldn’t stop me. That they shouldn’t stop me. Sure I might have to make my way round things a little differently at time, but she never allowed me to see myself as different in that regard. She always encouraged me to remember that I could do whatever I put my mind to. When I got into university, I think she didn’t stop crying for a week. Although if you hear my friend Steph talk about it, she cried for every time she talked about where I was, always tears of pride. She gave me the building blocks to keep on fighting, even though at times, I may have forgotten that they were in my possession.
I’m not going to tell you that I haven’t wanted to give up at times. That I haven’t wanted to crawl under a rock and just let the world pass me by. That wouldn’t be fair to you and it wouldn’t be fair to myself either. There are times when I’ve literally just wanted to give up. The extent of that giving up has varied from just wanting to hide under the covers to writing out suicide letters and emails and planning to end it all. The last time I did the latter was in 2014. Sometimes life just gets too much. It feels like the pain and the suffering won’t end and that we’re a burden on our loved ones. I truly get it, but in the past three years, my perspective has switched and I’ve taken claim on my life again.
In just over a month, I will turn 35. Thirty years beyond doctor’s expectations. Thirty years of a life that according to medical professionals I shouldn’t have had. In that time, I’ve achieved a lot more than they ever expected of me, and in some circumstances, even surpassed the ‘normal’ kids. That’s pretty damn impressive if you ask me, and not bad for someone with a litany of physical, mental, neurological, and emotional issues. And all because of the fact that I’ve kept on going. I have accepted these things as part of me, but I don’t let them define me, anymore than my eye colour or my hair colour. Because who I am and what I am is more than the sum of my conditions.
On days like today when my fibromyalgia tender spots are acting up, and my arthritic fingers are painful, I could very well just lay down and hide. Instead, I’m sat up and determined that even if I don’t get very far off this bed, I can do something with my day, like write a blog post, work on my latest novel, and maybe do some creative designs for my redbubble account. If I can’t do all of it, that’s okay. It’s not like I’m in a rush, but it means I keep my mind busy. On the days when sitting up isn’t an option, that’s also okay. I keep my mind occupied in other ways. I’m not about to give in because of the pain.
My body and I have known each other for almost 35 years now. We know what our limits our. We’ve been pacing ourselves since birth, and pushing the boundaries set for us. I’m sure that some people must be driven crazy by the latter of the two, but it’s because of the boundary pushing that I’m able to live a life that has meaning to it. I may not be able to do the things that I used to, but I’m still able to live. I can still smile with my friends, I can still love, I can still enjoy the things I’m passionate about. And do you know what I’ve found? A positive attitude, spending time with those I love, finding the good in the day, and the beauty in the world can make a huge difference to how I perceive what’s going on.
I know that I’m human, I know that there will be days when I stumble and fall, I know that I’ll still have PTSD flashbacks, and that I’ll feel like the world is going to crumble at times. I’m aware that suicidal thoughts may pop up when the going gets really tough, but I won’t give in any more. I have love in my life. I have reminders that I’ve put into place that show me each and every day of how lucky I am to still be here, as well as people who do the same. I’m starting to understand that if I reach out, even when the monster is telling me that people don’t want to be bothered by me, I’ll be surprised by just how loved I am, that I can beat that insidious voice that takes on a tone I’m only too familiar with.
Physical pain is not unusual to me. Mental and emotional pain are companions I’ve learnt to co-exist with. Whilst neither situation is ideal, I’m learning to live in a symbiosis with both. I’m choosing to use them to fuel my creative passions, to allow me to learnt to take the time to rest, and to understand that reaching out to loved ones isn’t a bad thing. I’m also learning that as I wait for the next in a long line of medical appointments, I’m doing it all with minimal pain relief, and I’m succeeding. I’m a hell of a lot stronger than I look. And a lot more determined too.
This is the post that a lot of people are going to stare at and look at in confusion. It’s the post that will get a reaction from people who knew me growing up more than people who know me now. It’s one I didn’t think I would ever be ready to post and I know given the community I grew up in it will put me at the centre of gossip. But you know what? Fuck it. I’ve spent the past few years dealing with the flashbacks, coming to terms with my past, and learning that I am not to blame. I’ve grown as a person and I’ve changed too. This is my truth. And now that it’s been over a year since my darling grandfather died I can and will put it out there. I waited as a sign of respect for the man who on finding out just a fraction of what I’m about to share here told me to call him ‘dad.’
Today has seen me fully involved in one of my favourite types of battle, with a couple of women I don’t actually know backing me up. It all started with a comment on a friend’s Facebook page about his other half coming to the aid of a pregnant woman when several white men attacked an Indian man on a train because he ‘looked like a terrorist,’ which read:
I wonder if you would still hold such admirable libertarian views towards Muslims, if you had be injured in a blast by a suicide bomber. True, the Indian man may have been Hindu, but now people are afraid and irrational.
Of course, this set my heckles up. For a start you don’t have to be liberal to understand that not all Muslims are responsible for IS or whichever so called Islamic group are currently claiming responsibility for whatever attack, and secondly, this narrow minded sort of codswallop is part of the reason terrorist groups are able to recruit so easily. People feel dejected and rejected from the society in which they live, bullied, harassed, beaten, for being who they are, for practising their religion, and for being of a different skin colour.
This delightful person, who by the way, is everything you would expect them to be, white, cisgendered, male, conservative, those wonderful qualities that tend to mean he has a privileged pole up his backside about any opinion that is not his own. We’ve spent the better part of today trying to persuade him that he’s in the wrong and open up his opinions, but it’s been far from successful. And interestingly, when we’ve tried to discuss his potential views on other things he’s remained quiet and not dared talk about his view on my being disabled, or the LGBT community, or those of us who claim benefits. I think we might scare him a little.
His comments have included things like:
And it’s not Muslim men who are raping underaged white girls on an industrial scale in Northern mill towns and it’s not Muslims who are suicide bombing our concerts and it’s not Muslim men driving cars into parliament. Not Muslims… I’m a liberal now, will u like me now in my denial of the facts. Please like me.
If it wasn’t all so scarily representative of the white conservative middle classes in the Western world, then it would be laughable. As long as they are right and everyone else is wrong, that’s all that matters to them. Of course the conspiracy level crap that’s spewed out of the mouths of these people is beyond ridiculous. And that he resorted to calling me a cunt was laughable. Yes I have used the world in it’s fullness because I have something to say on using a woman’s genitals when attacking someone, especially someone who has those genitals, but anyone in general. Actually several things.
- A vagina, or ‘cunt’ as you call it is nothing to be ashamed of. It’s where every human being who was ever birthed without the need for a C-section came out of.
- A vagina often takes a real pounding during sex and is probably a lot less vulnerable than testicles. At least it’s on the inside of our bodies and less likely to hurt with a minor knee raise.
- The amount of pleasure we can get from our vaginas is pretty epic. Yes I’m gonna say it, because it’s true.
- Also, as a lesbian, I can honestly say, ‘cunts’ are usually deep and warm, they are extremely enjoyable places to be.
Each time he tried to tell us we were living in our own little world, we had ways to come back at him. We pointed out that rapes weren’t just committed by Muslims. We pointed out that more terrorist attacks are committed by non-Muslims than by Muslims. We gave him facts, we explained that we are choosing not to live our lives in fear of biological attack but to embrace our neighbours to ensure that more youths aren’t taken in by the likes of IS. But did he listen? Of course not. The sad reality is, he is one of those whose minds are too stubborn to be changed. But not once did he manage to send us away feeling like we had been victimised, because we chose to stand tall and use knowledge over bullshit.
If you’re entering a battle of wits and knowledge against me, or against anyone who knows their shit, come armed. Bring facts, bring concrete proof, don’t just spout off individual incidents, I proved I could do the same. I spouted off an equal number of incidents to counter his ‘Muslim attacks’ ones, without even having to look them up. Could he prove his chemical warfare thoughts? No more than I could prove it won’t happen. But could I explain why I choose to embrace people from all walks of life? A hell of a lot better than he could justify seeing ‘jihad’ everywhere. I don’t think he actually understands the term jihad either. He sees it as a terrorist word, rather than giving it its true meaning. According to the Islamic Supreme Council:
- In a religious sense, as described by the Quran and teachings of the Prophet Muhammad (s), “jihad” has many meanings. It can refer to internal as well as external efforts to be a good Muslims or believer, as well as working to inform people about the faith of Islam.
In the wake of the Manchester bombing, more and more people like the one on my friend’s page are commenting and making their bigoted, right-wing opinions known. As for the rest of us, all we can do is combat them with love. Continue to embrace our human brothers and sisters of all races, religions, and nationalities, work together to make the world a better place; and when these class one arseholes raise their heads, use logic and compassion to answer them. Anger will only fuel their hatred. It may take time, but eventually, we might just make it through to all of them by setting an example.
My dear and loyal readers, you know the drill by now, I’m an Aspie, I have various medical conditions and various disabilities, and I’m Queer as that rainbow that’s coming after the thunderstorm that’s currently raging outside your window. Here’s the thing though. Having a list of labels a mile long means I can quite happily confirm that old saying I’ve used as the title to this post. When you’ve met one person with x, you’ve met one person with x. What you often don’t here from the disabled community or the chronic illness community is something I’m going to say now, can we please apply this within our own community too?
Yes, I’m not going to deny that I can run off a list of traits for each of my disabilities and conditions that I have in common with others, I mean how else would they have been diagnosed in the first place? But here’s the thing. Just because we have things in common, doesn’t mean I perceive myself in the way you do, it doesn’t mean my various conditions interact in the same way yours do, and it doesn’t mean that I’m going to look at life in the same way you do. It also doesn’t mean that I’ve not got it as bad as you, or that I’m faking or lying about my conditions because you see me handling things differently from you. Has someone aimed a gun at me yet? No? Are we sure? Then I’ll continue.
I have Asperger’s. I find eye contact with people difficult. More so if I don’t know the person/people in question. But I took drama in school and continued it through from the age of four until I was in my mid twenties. I have learnt how to fake eye contact in order to be perceived as not having difficulties. It drains me. But please don’t assume this doesn’t mean I am not struggling with it.
My fibromyalgia and arthritis mean I’m constantly in pain. There is no relief. Some days the mere ability to move out of my bed is out of my reach. However, I don’t let that stop me from trying to do things. I have learnt to pace myself. If I can’t do something one day, I forgive myself, I pick it up, put it aside, and try to do it the next day. I count each thing I do manage as a blessing and each thing I don’t manage as something that can wait. I try to look at the positive side of things because I don’t want to be taken over by the pain. I will smile through the worst pain imaginable if it means that I can look at things more positively.
I will let my body decide what it can do and when. I let it decide if today is a wheelchair day, if it’s a walking day, or a combination of the both. I know when to use which optional medications and when not to. I know which ones I need to take daily and which ones I don’t. I’ve gotten better at knowing when I need to listen to my medical professionals and when I need to put my foot down and make them listen to me. My life is about choices that allow my adaptation to my conditions/disabilities to make it the most fulfilling it can be for me. And that means I know what is best for me. I will take advice but that doesn’t mean that I’m going to sit here and listen to all of it and not think for myself.
Right now I know the medical path that I want to follow. I know that I need to chase up my pain specialist and make her clinic realise they can’t keep pushing my appointments back. I need to sit down with her and tell her that I’ve spent the past few months researching my options. I don’t want to be on Gabapentin. The side effects listed could make my PTSD worse, they could exacerbate my anxiety and depression, and I’m not willing to take that risk. So whilst my GP has prescribed it, I won’t take it. Morphine may be great for friends of mine, but that’s not a path I’m ready to take yet. I have the genetic disposition for addiction. It took me 10 years to kick nicotine, and that was after I quit smoking. I’m talking 10 years to kick nicotine replacement therapy. So no, long term opiates are not an option I want to explore right now. Low Dose Naltrexone is. But I have to speak to my specialist about it because my GP can’t prescribe it. That’s how it works in the UK.
I have spent my entire life in and out of hospital and doctor’s appointments. I’ve been through more health professionals than I care to count, and considering I reach my 35th birthday in less than three months, and the doctors said that given the level of my heart problems at birth I’d never make my 5th birthday, I think I’m doing well. In the 80s a severe coarctation of the aorta and a heart bypass on a six week old baby weren’t a very high success rate. I was expected to need another one in my teens if I made it that far. Well I never needed that second bypass, and touch wood, I’m still here. I’m also the only one who’s lived my life. Who has lived through what I’ve lived through and seen what I have seen. I’m the only one who has the memories that cause my PTSD flashbacks, my anxiety and my depression. I’m the only one who knows how my Irlen tints help my SPD and Asperger’s.
I appreciate the advice of my peers more than you’ll ever know. But instead of telling me what you think I should do, whether you have one, multiple, or none of the same diagnoses as me, how about trying to explore options with me? Maybe we can talk about which options I’ve already tried, the ones that have worked and the ones that haven’t. Perhaps we can discuss why I don’t want to try the one you swear by, or why I’d like to research it more. And hey if you want to ask me what I think of something, I’m there for you too. Just please, please remember, that ultimately, the decision is mine. If I chose to do or not to do something, that’s my choice. But it’s a choice I’ve made because ultimately, I’m the one that knows me. None of us chose to have these disabilities/conditions/illnesses, but we can choose how we adapt to life with them.
As an indie author, I’ve been asked why I don’t keep my health separate from my work. Why I choose to talk about it so openly on twitter, on my personal facebook, and on my blog. Here’s the reason:
It’s really that simple. There are thousands of people, actually, millions of people, out there, across the world, who choose not to speak about their pain because it has been drummed into them by society that they shouldn’t. They feel guilty when they tell their loved ones that they struggled to get out of bed on a morning. They feel like admitting that they can’t do the things their friend suggests doing on a weekend or evening means they are a bad person and failing as a human being. When their child wants to go and play at a certain place and they have to say no, not today, it makes them feel like they are the worst parent in the world. I choose to tell them that they are not alone. They are not the only one in pain and it is okay to say no.
I haven’t yet included my disabilities or my health conditions in my fictional worlds. I choose to focus on my sexuality and gender instead. But that doesn’t mean it isn’t far from my mind that one day I might write a book about a teenager with ASD or SPD. That I might choose to have a mother or an aunt with Fibromyalgia, or a kid that so happens to have Irlen Syndrome. Whilst I wait for those characters to come to me, I will shout from the rooftops on my social media accounts about the way in which each of my conditions makes my daily life different. Because if it means that one person knows they aren’t alone because of my post, or someone can understand a loved one better, then I’ve done something right.
Recently I’ve seen so many posts about how we as Chronic Pain sufferers keep so much bottled in, because we feel like burdens and we are scared of losing those close to us. Well you know what? I won’t do it. If someone asks me how I feel, they need to be prepared for an answer that involves the truth. As an Aspie, I don’t believe in sugar coating things. I never have. If you were to ask me today, I’d tell you that I have my usual aches and pains but that my left wrist and shoulder in particular are acting up. The wrist feels like it’s in a vice and if I didn’t know better I would say someone stuck a knife up and under the shoulder blade. But I’d also tell you it’s a better day than yesterday, and that I’m looking forward to next weekend when I get to see loved ones again. My PTSD, anxiety and depression are being kept, mostly, at bay, and I’m happily working on various creative projects.
We are, as a society, socially conditioned to apologise for our negative feelings. I’ve found myself doing it too. An apology for posts where I feel down and low, for example. But I’ve decided I’m stopping that. I won’t apologise for my feelings. I will happily talk them through with you. I am willing to understand why you may think that perhaps you would feel differently given the same circumstances, however, I will not accept being told that my feelings are wrong, and I will never tell you that your feelings are wrong. Feelings, like pain levels, are individual, and therefore, cannot be judged to be right or wrong.
So when you see my posts about my feelings, my pain levels, how my disabilities and illnesses are shifting my day, don’t just scroll by with a roll of the eyes. Remember, that someone, somewhere, may need the brutal honesty of that post to remind them that they are not alone.
eBook offer time!
To celebrate the release of the new covers for The Lunegosse Tales, I’m giving you the chance to get both The Search for Lana and The Journey Home in eBook format for just £5. That’s a saving of £1.98 in total. All you have to do to take advantage of the offer is drop me an email at firstname.lastname@example.org, with the title eBook offer, advising your preferred format, then pop your payment over to me via PayPal. Once I’ve received your order and payment, I’ll email across your ebooks in your preferred format.
Available formats are as follows:
PDF, epub, mobi (Kindle), lrf, pdb, and txt
Offer ends 31st March 2017
Let me know what you think of the new covers! Merchandise related to both of them can be purchased from my Redbubble Store.
I’ve tried this before, but I’m throwing it out there again. And this time I’m going to throw some dates out there too. I would like some help and I would like to get my books, and this time my Redbubble accounts, out across the Internet. I want people to know that my social media accounts exist, and I’d like people to help me promote my work. In return, I’ll give you shout outs with your social media, I’ll help you to promote your creative endeavours, and I’ll run book reviews/site reviews for you.
Here’s what I’m currently looking for:
Blurbs for the above books as well. Again ebook formats will be provided.
I’d like reviews and blurbs for these no later than the end of May. Reviews should be posted to Amazon, Smashwords, and any other online retailer you use where the books are available, I can provide you with links if you request them. Blurbs should be emailed directly to me.
Later this year I’ll be looking for reviewers and blurbs for The Stolen Generation, if you want to sign up for that, please let me know and I’ll email you your copy nearer the time with dates I need the review or blurb by.
For the Redbubble sites, one is the merchandise site for my books, and the other is more general designs. I’m looking for people who are willing to help me share them across social media and spread the word, helping me to get them out there (and hopefully earn a little bit of money from them). I’d also appreciate it if you could do the same with my author pages on Twitter and Facebook and help me advertise my books with retweets and shares.
As I said earlier, I’m willing to provide like for like services for you too. Be that reviews or shares.
If you’re willing to help me, you can contact me by emailing me at email@example.com
61 isn’t that old. Not by today’s standards. In fact, for women, the age of retirement is no longer 60, it now matches the age of retirement for men. We often think that we have all the time in the world. And most of us don’t think of our own mortality until much later in life. I’ve thought about mine daily for as long as I can remember. Mostly because I’ve always had a death sentence over my head thanks to my heart condition. What I never thought about was your mortality. I never questioned that my mother would be there to watch me grow. Never asked if you would be there to watch my children grow up, if I a) lived long enough to have them, or b) decided to have them. I never worried about you being there for my graduation, or my wedding. Never pondered if you would be there to talk to about the myriad of things women talk to their mothers about. Not even when the M.E. and the Fibromyalgia left you exhausted and sat in your chair and me a teenager carer. I never ever questioned that you would just always be there. Even with everything he put us through, I still didn’t worry that you would be anything other than present.
But tomorrow, on what should have been your 61st birthday, like so many birthdays before, you won’t be there. In May it’ll be 16 years since I woke to that phone call that changed my life, the one that still feels as unreal as it did that day. No 18 year old should hear the words “Your mum died last night.” echo down the phone. The weight of them still sits heavily on my chest, as if an elephant is trying to cause my asthma to stir. It weighs on my arms and my legs, causing my own Fibro pains to shoot through me and burn at my muscles. There’s a hole in my heart that’s as small as you but as large as your heart. You may have only been 4 ft 11, but you had a heart that was 100 feet tall. And all of my friends who knew you whilst we were growing up would vouch for that. They all called you their second mum.
There’s not a day goes past that I don’t think of you. And I don’t think there will ever be a day that goes by that I don’t want to talk to you on the phone, or just hear you singing along to one of your CDs, just one last time. You may have been the most tone deaf person I have ever met, but the joy you had in singing made it music to my ears. I hope that Grandad will be celebrating with you tomorrow. I know you’ll both be driving each other crazy up there. But I also know the amount of love and affection you had for each other in life, behind the bravado. And I know that Uncle Tim will be looking out for his precious little sister. I often feel like Lee and I were robbed of our mother way too soon, but then I remember, we were so very blessed to have you in our lives for as long as we did. Goddess gave us someone special as a mum when She gave us you, because She gave us someone who wanted nothing more than to have children. And whilst you and I fought like cat and dog during my teenage years, and we both made mistakes along the way, I always knew, as I know now, your love for me is stronger than anything else. It’s why you’ve made sure that I have love in my life now that you’re gone.
I miss you, Mum. I always will. But I hope you know, I’m doing okay. And I’m so grateful that I’m loved by the people I have in my life whose unconditional love reminds me of yours.
Your Longed For Firstborn
WARNING – THIS POST CONTAINS STRONGER LANGUAGE THAN MOST OF MY POSTS USUALLY DO, SO IF YOU’RE OFFENDED BY THE USE OF STRONG LANGUAGE/DON’T WANT YOUR KIDS READING IT. CLOSE THE POST NOW.
Newsflash people, I’m in a wheelchair, I have physical and neurological disabilities and conditions. This doesn’t mean that I can’t communicate, and it certainly doesn’t mean I’m any less entitled to breathe or be on this planet than you. Furthermore, if you’re going to park your car in the way of my wheelchair and stare at me like I’m trying to be entitled when I tell you off for parking on a goddamn pavement and pushing me onto the road, you bet your arse I’m going to lose it at you! You’re the one who is showing your privilege, and making sure I have to go out onto the road into oncoming traffic is just going to piss me the fuck off. You bet your sorry arse that it’s not going to be the end of what I have to say to you when your reply is “Well I’m just waiting for my husband.” You can move your fucking car back a grand total of two fucking feet to let me past you miserable bitch!
Now let’s move onto you, Mr I’m-So-Shitty-And-Privileged I’m going to park in front of a drop curb meant for disabled people in wheelchairs and those with prams and buggies to use instead of move a foot forward or backward on a repeat basis. Do you know how often you stop me being able to get straight to my home and make me go an extra ten to twenty minutes out of my way when I’m already in complete and utter agony? I will start leaving notes on your bloody 2016 Porsche that really doesn’t belong in our less than affluent area telling you what a fucking privileged dick you are.
As for you, the ones who talk to my sister and ignore me when I ask you a question because I’m sat in a wheelchair. If I am the one who asks you the question, why the hell do you give her the answer? Do you think I’m not able to comprehend you? Because seriously, I’m the one who damn well asked you if you had the fucking item in stock. And you look surprised when we decide to dump our shopping basket and go somewhere else to get our required items? Really?
Next up come the shops I used to love to frequent before I became unable to walk far. The ones who are now impossible to enter because they don’t have disabled access, and if we manage to get my chair through the door, my chair won’t fit past the racks. There are three charity shops in the entirety of my little town which is overrun with them that I can now get into and shop in safely. And considering they are all there for the benefit of people with disabilities and two of them I can’t shop in raise money for people like me, this makes me cringe.
Last but not least is the woman in a chain store famous for discount sports attire who looked at me in my wheelchair as if I had no right to be in the store at all as she was shopping with her friends. Now, I may be wrong on this, but don’t people in wheelchairs fucking wear clothes? Don’t we have the right to do what sports we can? Don’t we support sports teams? I often find trainers to be the easiest shoes to put on and take off, and I love wearing t-shirts. Plus this particular chain sells other shoes, and extremely nice coats at wonderful knock down prices making them affordable. Which I presume is why she and her rather well dressed friends were in there in the fucking first place!
In short people:
I AM A FUCKING HUMAN BEING AND I DESERVE TO BE TREATED LIKE ONE! SHOW SOME FUCKING RESPECT!
In just over 6 months I turn 35. I’ll have been alive been alive 30 years longer than doctors expected. And I’m proud of that. A lot prouder than I am of most things in my life, because it marks me as a survivor against all odds. The scar that runs from my left under arm up my shoulder blade from open heart surgery as a 6 week old baby in 1982 reminds me of it daily.
I’ve overcome a lot in those extra years. I’ve been through endless medical visits. I’ve dealt with abuse and bullying. I’ve had physical, emotional, and mental issues to face, and I’ve always come out stronger. I face pain on a daily basis, but I do it with a smile and grace (most of the time), because each day is an extra gift that I didn’t expect. That doesn’t mean to say I’ve always seen it that way, but it’s how I see it now.
I’ve attempted suicide five times in those extra 30 years. But I’ve never succeeded. I’ve been stopped by loved ones in the nick of time, by a stranger once, and by my guardian angel twice. I’ve self harmed, I’ve suffered from anorexia and bulimia, I have PTSD Asperger’s, endometriosis, asthma, Irlen Syndrome, and severe anxiety, and there are days I want to hide under the covers with a razor blade but I choose not to.
I get frustrated at things, I get angry, I scream, I rant, I shout, just like the next person. I also go into meltdown and shutdown periods. I am far from perfect. But I am learning and I am evolving. I am changing and I am understanding what is right for me as I get older. And that means that I am closing chapters in my life, as well opening new ones. It’s a scary process but it’s an amazing experience.
I am choosing to look after me as I come to terms with my diagnoses of fibromyalgia and auto immune arthritis. To learn what they mean in regards to my abilities and my life. I’m learning to understand how they work in conjunction with my other disabilities and conditions, and how I can push myself whilst pacing myself, and how they change my advocacy mission.
Will I be here for another 30 years? I can’t answer that. But I do know that I can honestly say that I hope so. And I hope to be as grateful for each of the days that comes. I hope to be able to smile at my chosen family and greet them with the hugs and love that I do now, even if I don’t have the energy I once did. I want them to know how grateful I am that they are in my life. And on my 35th birthday this year, I want to open my eyes and smile, knowing that I made it despite what my mum was told. And that whilst she’s not here to see it, I’m still going strong, with her in my heart.
I’m pretty sure this letter is going to end up with me getting a lot of abuse from a lot of different quarters, and you know what? Quite honestly, I don’t care. It’s taken a long time to mull over and honestly it’s been a long time coming. You’ll always have a place in my heart, but I’m not going to put you on a pedestal like others do, and I’m not going to join in the menagerie of adoring fans that cannot possibly breathe without your attention. To be honest, I’m sick of it all, so excuse me whilst I focus on other things, and move on to pastures new. I love you, and after 21 years, I always will, but I’m not about to hurl myself under the bus and get involved with the crappy little cliques that have evolved around you in recent years.
I remember a time when being your fan meant something. It meant wanting to do something for those less fortunate than ourselves, regardless of how fortunate we are. It meant clubbing together to raise money for charity and sharing experiences. It didn’t mean screaming over social media for you to pay attention as people screamed at you that they were donating or raising money, or wanted you to wish them a happy birthday. I tried last year to thank you for 20 years of inspiration, of knowing that I was more than I was taught I could be, but I was drowned out in the cacophony, and so I gave up.
I’m done with the childish behaviour of your fandom. Of the girls that drink themselves into a stupor and then wonder why they are so hungover the next day, wearing the hangover as a badge of honour, or declaring that they’ll never do it again, only to binge again the weekend after. I’ve seen what harm can come of that. I know that 75% of the cost of alcohol harm use in the USA comes from binge drinking, and that binge drinking can lead to Alcohol Use Disorder. But there’s only a couple of us that are trying to reach out to those people in your fandom who are acting in that way and we get rebuffed. Others tell them that we don’t know what we are talking about and so they listen to them instead.
You have a heart of gold, and you are truly a good soul. I know that. I’ve met you, I’ve spoken to you. Because of you, I’ve met my sister, and some of the most wonderful people in my life. But your fandom turns in on itself quicker than anyone would care to admit. It’s washed over quickly so that you don’t hear it or see it. But it happens. And perhaps the scariest thing is that some of the people doing it are the people who should be setting the best of examples.
There are still some amazing people in your fandom, the sad fact is, that they are often drowned out by the louder ones who clearly don’t give a damn about your reputation or the reputation of the others in your fandom.
It’s been a busy few months over here in writing land. My poor blog has been disgracefully forgotten, along with other things, and I’m determined to get back in a proper working schedule again (as soon as I’ve done the housework).
The Journey Home – Book 2 in The Lunegosse Tales is now available for purchase through Smashwords, Amazon, Create Space and others (in both paperback and ebook), and joins The Search for Lana. I’m thrilled that the second book is now available after a rocky start with printing and getting the formatting sorted. I’m currently looking for people willing to review both books and put their reviews on Goodreads, Amazon, and any other booksite or blog that they would like to share them on. Please note that I am only looking for people who will actually do as they say and review the books, and within a short time frame. I had far too much of time wasted when I asked for reviews last time.
I’m still crowdfunding for next year’s book tour. And I’m only £100 away from announcing the first tour date! If I get that £100 and reach £500 by Christmas Eve, I’ll be doing a giveaway. But I need to get there first, so please please please, share the link, share the campaign and encourage others to donate, as well as donating yourselves.
And talking of the Book Tour. Please feel free to email me at firstname.lastname@example.org with your suggestions for UK Sci Fi Cons I should bring my books too.
Just your regular reminder of everything going on at the moment. Because let’s face it, without you guys I’m not going to get very far.
Crowdfunding Campaign for 2017 Book Tour
Click on the image and join in, a donation as small or as large as you like. Up until Saturday, any donation of £5 minimum will get their name in Book 3 when it’s written and published.
The Journey Home Book Launch – 19th November 2016
On Saturday, over on my Facebook page, I’m launching the second book in The Lunegosse Tales. Go over to my page and join the event to join in with the fun and frivolity of the launch. Click on the image below to head over there.
I am over on Patreon! By becoming a patron you not only help me to continue writing but you get access to exclusive content not available anywhere else. You’ll also get sneak peaks of new books and projects before anyone else. Click on the below image to come join the fun.
With days to go before I launch The Journey Home on my Facebook page, things are a bit chaotic over here in writing central. I’m busily trying to get more people involved in the launch and the ongoing crowdfunding campaign for my 2017 Book Tour. My Patreon page could do with a boost too. So if you see me flying round in orbit, arms flapping, you know why.
In other news, I’m currently signed off by my doctor until January… which means I’m devoting more time to the writing/sketching/crowdfunding as I can do all of that from my bed or couch. They still haven’t figured out what’s causing my pain and it’s driving me a little crazy, dear readers. There are mornings where if I don’t have my sister to help me, it can take me an hour just to get our of bed. And I’m seriously considering using some of the crowdfunding money to hire a wheelchair for use at various cons I’ll be selling my book at, just to help me get around. But we’ll see on that score.
I’m still trying to put together a list of cons to attend next year, so please, please, if you have any ideas, don’t hesitate to drop a con in the comments. Please bare in mind that I only want to do independent cons and that they have to have good disability access, they must also be UK based.
My darling readers, you’ve been there through a lot with me, and you’ve put up with my incessant crowdfunding posting, so I’m eternally grateful to all of you. Please, if you can’t donate/join in the book launch/become one of my patrons, share the links, share this post, and help me get the word out there. As an independent disabled author, I rely heavily on word of mouth. I couldn’t be more thankful for all of your support.
My new book, The Journey Home, is due for release on 12th November. And I’ll be holding the launch party over on my Facebook page! I’m rather stressed, but to be honest not really a surprise. At that party I’ll also be launching my new merchandise store, which I’m sure a few of you eagle eyed readers may already have spotted in the menu of my site.
I’ve also launched my Patreon page! So come and support me over there and help me to produce more content for you.
And don’t forget that I’m still crowdfunding to raise money for my 2017 Book Tour over on GoFundMe.
It’s a very very busy time for this author, and I’m hoping that you’ll all continue to support me as I push forward with The Lunegosse Tales, start making strides towards my Book Tour and merchandising myself and my work.