If you know me, or follow my work, you know I’m an avid supporter of Claudia Christian’s C Three Foundation and the work they do in advocating The Sinclair Method of treating Alcohol Use Disorder. They are celebrating their 5th birthday this month with a fundraising silent auction and have a goal of $5k. Let’s help them smash it! It runs until 17th June and there’s some amazing things on offer, especially if you’re a sci-fi geek or nerd!
As I’m a Young Adult author, this Tuesday I thought I’d share with you my top ten favourite books from my youth. These books go back to the earliest chapter books I remember reading, onwards to books I read as a teenager. They may look like a random mix of books, but they are the ones that have stayed with me the longest. Continue reading “Tuesday Top 10 – Books from my youth”
An intimate theatre setting is always going to be my favourite. Small audiences, close to the stage, no matter where’re you’re sitting, and that feeling of the fourth wall being so close that you literally are the fly on the wall (and for this drama student a throwback to the days of drama studios and confined spaces) The Cherry Orchard at London’s Union Theatre is no exception.
Before we get any further, I’m going to preface this with saying that I’m the Theatre kid that loved Chekhov and Ibsen at school. I’m also the English Literature kid that devoured Orwell and Huxley, and I’m a Stargate fan. Why is this all important? Simple. Suanne Braun was the reason that at least half of the audience were in the theatre last night. She was our Hathor, Mother of All Goa’uld in Stargate SG-1, and we were all eager to see her perform. But for me, it was my fifth adaptation of this Chekov play that has always had a place in my heart.
The set evoked the crumbling estate perfectly, the decaying walls of the building, the moss growing up through the floorboards, walls falling down around them, the set design perfectly echoed the era in which Chekhov’s play was set. Yes the theatre geek in me was happy to note the tiny details like the plant life between the floorboards, Justin Williams and Jonny Rust definitely did the production justice in this regard.
I’m a Chekhov purest at heart, you might have guessed that from the fact this is the fifth adaptation that I’ve seen. But even that didn’t stop me loving this one. This production had one major and vital change in that the Bolsheviks took the estate. Something that doesn’t happen with the original. And perhaps that’s the reason that amidst the chaotic feelings of the end, I still found myself crying with Ranyevskaya as her world crumbled around her. Or perhaps it was the fact that as Lopakhin and Trofimov discussed the past and the future, she sat their silently staring out at her beloved orchard, weeping silently.
Braun’s portrayal of Ranyevskaya was, quite frankly, sublime, and I’m not just saying that as a fan of the sci-fi franchise that introduced me to her work, or a fan of her body of cinematic work (I will admit to having purchased Fleshtone and Starhyke because once I find myself enjoying someone’s work, I want to watch more of it), but because she pulls the audience in. You ride her emotional rollercoaster with her, wishing that she really could forget about her financial worries, and not wanting to blame her for her desire to run away from her troubles into a world of fantasy. Braun showcases the rapid emotional shifts that Ranyevska is prone to with a beautiful fluidity that makes them completely relatable and believable for the audience. It’s breathtaking to watch.
The cohesiveness of the cast is beautiful. I’ve been to other productions near the end of the run and found that by this time, the cast have been a little shoddy when it comes to their interaction with each other (yes even professional productions) and their hearts aren’t really in it, but that wasn’t the case with The Cherry Orchard’s cast. From Anya to Charlotta to Yasha, the way in which the cast portrayed the relationships between the characters was just perfection. I have to give a mention here to Molly Crookes for her performance as Dunyasha, the maid. The way in which she portrayed Dunyasha’s feelings for Yasha, her disdain for Yyepikhodov, her flirtatious nature, it all fitted the nature of the character in a way that is often missed in productions of this play. She’s often played as flighty and silly, whereas I found Crooke’s performance showed her humanity.
Caroline Wildi’s Pishchik on the other hand, was exactly as air headed as she should have been. Her lack of understanding that others around her were often in a worse state than she, the wistful look in her eyes when she talked of her dancing days and her dear father were just right. Lakesha Cammock was a wonderful browbeaten Varya whose sensibility was a stark and brilliant contrast to Braun’s emotional frivolity and Lucy Menzies’ ideologically naive Anya. Richard Gibson’s Gaev (Ranyevskaya’s brother) was a performance that will stick with me as a portrayal of the dementia that hits those in later years. Having lost both my grandmother and an uncle to different types of the harrowing fate that is dementia, I was struck by the truth in his performance. How coherence and lucidity mixed with bouts of nonsense and memory.
I feel guilty for not going into depth on each and every performance within the production, but truth is that I could be here for hours if I did. And I still wouldn’t do them all justice. I’ve chosen just a few highlights from this wonderful show. And if you’re able to see it before it closes tomorrow, Saturday 7th April, I recommend you do. It’s most definitely one that shouldn’t be missed. But as I said, it’s a small theatre and tickets are on a first come, first served basis.
The production is at The Union Theatre, Old Union Arches, 229 Union Street, London, SE1 0LR. www.uniontheatre.biz
It’s January, I have a release coming up in less than two months, I’m quite frankly, so busy, my blog has been neglected in favour of my newsletter (sign up in the footer).
Continue reading “Sometimes we put in more than we get out”
…. almost. This year seems to have flown by in a flurry of activity that has been never ending. There’s been a tonne of stress and bodily pain and dealing with a lot of things I really wish I hadn’t had to. But overall I’m ending 2017 with a grateful heart. An exceptionally grateful heart. Things have changed this year, a lot, and actually whilst they were scary, I think overall they were worth it.
- I started this year with a decision that was ultimately life changing. But it meant that I was choosing to focus on my health, my diagnoses, and my ability to look after myself. My relationship of ten years ended. It was a tough decision. I’m not going to deny it. But it was something that ultimately needed to happen in order for me to focus on understanding myself as I now am.
- I spent an amazing few days in Telford with the FCD lot. Made new friends, reconnected with old ones, and began to realise just how loved I am.
- I spent an amazing few days with my two favourite people in Edinburgh. That trip was life altering in so many different ways, and it left me with a deeper understanding of myself and my relationships with both of them. I also made a new friendship with someone who is as nuts about hamsters as I am.
- I met Christin Baker in person. This amazing woman is the power behind Tello Films, she is a powerhouse and one of my inspirations. To sit and have brunch with her and discuss Riley Parra and other things was just amazing. And to be treated as human and not someone in a chair was beyond fabulous. Not that I expected anything less.
- Being able to support my wonderful Geonn Cannon as Riley went live on Tello and connecting with Marem Hassler was beyond beautiful. She is the perfect Riley. And I desperately encourage everyone to donate in the last few days of the season two crowdfunding so that we get to see the next instalment!
- Seeing Stockard Channing perform in London was a last minute, crazy, day whirlwind of an experience, and damn if I am not still recovering from that. To see her in all her formidable force on stage was just beyond epic. There are no words for that night.
- Being given a second hand laptop by a dear friend to replace my falling apart one was a huge plus. It’s enabling me to keep on writing.
- Sitting in Citizen M in Tower Hill working on The Stolen Generation was amazing.
- Consistently being published by The Mighty shows me my voice is being heard.
- Being reminded randomly by the most random people that I’m loved and appreciated is beyond special.
- And fundraising for C3 Foundation and trying to help them win the Newman’s Own Foundation Holiday Challenge on CrowdRise, has once again reminded me just how amazing people can be. You can donate to my Team C3 Page here.
This year has been amazing. If I could give shout outs to everyone who has made it so I would. But you all know who you are. Instead I’ll say this to just a few:
J – I’d be lost without you. You make every day so much easier and help me with so much.
MC – not your real initials but you know who you are. I look forward to our next adventure, and I’m so fucking grateful for the one we’ve had this year.
G – you’ll always be my platonic hubby. I love you.
JH – you’re my best friend, my sister, my guru. You mean the world to me.
SD – you blew me away when you sent me that PM.
DH – I love you too. Always. We neurodiverse thesaurus swallowers have to gel.
NLM – thank you for the book discussions and the ongoing support.
KitS- you’ve been a stalwart support as always, and you mean so damn much to me. We need to find a way to meet up soon.
KBS – where would I be without my sister in feminist fannish arms?
KazS – I’m so glad we’ve had the time to text this year. I love you.
To all I’ve met through The B Cup – I FUCKING LOVE YOU!
Occasionally you get an opportunity in life so rare that you have to grasp it by the neck and relish it with everything you’ve got. Yesterday was one such day.
My sister and I travelled to London for various reasons and decided to stop by the TKTS booth on the off chance we could get cheap tickets to see Apologia before it closes on the 18th. I mean Stockard Channing live on the West End? That’s a lifetime dream come true for this former drama student. Turns out not only were we in luck but a further turn of luck on arrival at the Trafalgar Studios meant we got upgraded from Row P to Row J.
I’m going to be honest here and say that Trafalgar Studios isn’t brilliantly accessible but they have made some changes to the theatres that do make it easier, and on a day where I was using my sticks it was easy enough to navigate, and the staff were more than helpful. A huge shout out to them all for ensuring my safety and comfort throughout.
I mentioned earlier that I’m a former drama student. But the truth is I don’t think that ever leaves you. I found myself looking at the picture frame set with interest whilst waiting for the play to begin, noticing the small details that made the production that little more intriguing. It was clear that every little piece of set dressing had a function even if it wasn’t directly obvious and it was beautiful.
A quintessential English kitchen through the eyes of an American. That was the impression it gave and it fit Channing’s character of Kirstin Miller, an American Art History specialist and activist who had escaped America as a young woman for a life in the UK.
The use of lighting was beautiful and the thunderstorm before the interval deserves a special mention here as it can often be difficult to pull off a convincing thunderstorm in such an intimate auditorium space, but it was spectacular.
The advantage of seeing a play near the end of a run is often that the cast are so comfortable and gelled by this point that the production is seamless. But it can also be a downfall. With Apologia however, it’s definitely the former rather than the latter. The performances were outstanding. For a play that relies heavily on dialogue, and monologue, it easily pulls you in and allows you to forget the world outside.
Freema Agyeman astounded me with the diversity and depth of her performance. Her character of Claire starting out as an annoying bubblehead but slowly revealing herself to be much more. The tender revelation scene with Kristin whilst everyone else is out of the kitchen had tears in my eyes, and I’m not ashamed to admit that I cried more than once during the performance.
Trudi, played by Laura Carmichael, with her annoying American Evangelical Christianity claptrap actually proved to be the most compelling of the younger characters, I went from wanting to stick her head in Kristin’s defunct oven to actually quite liking her by the end. Even if she was still a little sickly sweet. Her transition throughout was the most profound I think.
Hugh’s (Desmond Barrett) effervescent, self-deprecating gayness reminded me of the drag queen fairy godfathers in my life. Men of a certain age who fought in their day for the rights that we enjoy now whilst continuing to fight for further rights. He was sweet and kind and particularly drôle. But there was also that wonderfully sharp acidic tongue that underlies it all.
Peter and Simon, Kristin’s ‘neglected’ sons being played by one actor was genius and a clear display of Joseph Millson’s talents. The more forthright Peter who has been able for o find a way forward for himself is actually on reflection, perhaps the more damaged of the two. Whilst Simon, who has a history with mental health issues and whose punctuated staccato speech emphasises the effort with which he puts his point across, has clearly done more work to reach a point of self-realisation. The polar opposites of the characters showed a varied range from a versatile Millson.
That brings me to Stockard Channing as Kristin. By no means am I saving the least for last. As I said earlier, I have been a life long fan of this enigmatic actor. Whilst other kids were obsessed with Sandy, I wanted to be Rizzo. As a teenager (and even now), I wanted to grow up to have half as much sass as Aunt Jet in Practical Magic, or Dr Bartlett in The West Wing. Ms. Channing’s voice was, and still is a regular sound in my home, so seeing her performance last night was a true pleasure.
The way in which she captivates an audience from the moment she walks on stage, is striking. Each character I’ve ever seen her play, whilst carrying that wonderfully recognisable timbre, is so very different and striking from the last, but they all have one thing in common, Ms. Channing plays strong females, and Kristin is no different.
There were points her humour was so cutting you felt sorry for the person it was aimed at despite the fact you were laughing with her, times you could feel your chest clenched as hers did, but nothing prepared me for the gut wrenching tears that Ms. Channing’s performance pulled out of me at more than one point during the evening.
I’m in complete and utter awe as I write this over a cappuccino this morning. If I wasn’t heading back to Yorkshire tonight, and if I had the money, I’d spend the next few days in the audience of every remaining performance of Apologia, with my sister by my side. It truly is an utter gem amongst the productions currently on offer in the West End.
Why not purchase both The Search for Lana and The Stolen Generation in ebook directly from me for £5? Just click on the image which will take you directly to my PayPal. From there, you’ll be able to pay for the books. Just let me know which format you want the books in, .pdf, .epub, or .mobi (Kindle), to sideload onto your ebook reader or put into iBooks on iTunes.
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I had a chat with my sister this evening that I want to share with you all. It’s an important one I think that every person with any form of chronic pain needs to have at some point. And it’s to do with how we perceive our place in the world and our abilities to enjoy life. It’s also to do with how we feel about the help we receive from those closest to us. Something I’ve had to battle with a lot recently. But here’s the thing, unless we talk about it with those helping us, we’ll never fully get a clear picture, and for those of us who also have mental health issues, it’s essential that we have this conversation.
For the past few days I’ve been struggling with my lower antidepressant dose which hasn’t helped with the way I view myself or my pain. I’ve been pretty much beating myself up, and things haven’t been going the way I planned, and it’s all added up into this huge bubble of anger at myself, which has been, in part taken out on my sister, without me meaning to. It culminated in a pretty intense scene last night where I sobbed my eyes out, decided to titrate my dose back up, and speak to the doctor when I get home. But my sister and I talked about it. We discussed what was going on, and now we both understand each other a little clearer. Today for me, as a result of that chat, and adjusting my meds, has been hugely different.
Here are the things we discussed tonight, further to that conversation last night, things that may or may not be helpful as a checklist of sorts to remind myself of and that may be applicable for others:
- Keep in touch with my pain – what sort of pain level am I in when I wake up? It’s going to have a relationship to what I can do for the rest of that day. What sort of pain am I in when I go to bed at night? That’s going to have a bearing on my sleep and if I need to adjust my pain killers that night, or take one of the dreaded sleeping tablets the doctor has given me, which can leave me feeling like a zombie for the next few days.
- Is it a walking sticks or a wheelchair kind of day? – this tends to be based on what is being done that day, where I am, what sort of transport is being used, if it’s possible to use the chair, and if I can get away without it. Currently I’m in London, and I have to say, TfL (Transport for London) have a lot to do to make their system fully accessible for wheelchairs, so if I can I’ll use my sticks, but that also means working out just how much walking I can do that day. Some places, like the museums, have wheelchairs that can be borrowed, and may be available on the day when you turn up, but if you’re going at a peek time it’s important to book one. More on that in another blog post though. Today I was sat writing my novel, so that means it’s a walking stick day, and a huge shout out to CitizenM Tower of London Hotel whose lobby I’ve been using to write in because it’s a fab atmosphere with an amazing cup of coffee.
- Stop being so hard on myself – This one came from my sister. I need to stop being so hard on myself. In the week since we arrived in London, I’ve walked about ten miles on my sticks. It’s hurt, and I know that once I’m back home in West Yorkshire, I’ll probably need a recovery period, but I’ve done it. When I’m here I want to do it. I pace myself better, and I’m better able to do it. I’m motivated here because it’s warmer than up North, and that in itself helps to stabilise my pain levels.
- I am not a burden – so many of us in the chronic pain family the world over feel this way. But my sister reminded me today that just because I feel it does’t mean I am. If I can’t do something, there’s no shame in it. I may be stubborn but I shouldn’t be so stubborn as to cause myself more damage, and my sister wouldn’t be here with me, helping me, if she didn’t want to be.
- Chronic pain doesn’t mean the end of life – it means making adjustments to life. It becomes a new chapter in your life. I still don’t have right pain meds, and I am still playing with my C-PTSD ones to get the right dosages, but actually, when I’m calm and able to think without the various demons screaming and yowling inside my head, I can honestly say that this life of mine isn’t the worst one it could be. Actually it’s pretty damn good. And I still get to do a lot of what want I want, just as long as I remember to pace myself.
- I am loved – I have some pretty awesome people in my life who would literally jump in front of a speeding bullet for me in a heartbeat, eve when I feel I don’t deserve it. And that in its own right is epic. I’m loved right to my very core. And yes the past few days have been extremely tough, the past few weeks and months even more so. There have been things going on that I can’t share because of various reasons, but let me just say that I’ve been reminded in the past few days I’m loved and very much wanted in this world, even when I feel like I’m not needed.
- Today was a struggle, tomorrow may be too, but it doesn’t mean there aren’t happy days in the future – Each crappy day has its drawbacks. Each pain filled exhausting day where nothing seems to go right also has something good in it, even if it’s one tiny little thing like having a cup of tea. And even though those days might seem to roll into each other and the negative be the thing that draws your attention, in a few days, a week, a month, or even a year, there will be a day, or even a good few days in a row, where you will know that it’s all been worth it. Don’t give up. Try and look for the tiny good in each day, because the tiny good can make the bigger good seem that bit closer and make you feel that less exhausted.
- Keep on self-advocating and taking those who care along for the ride – if the doctors aren’t listening, make them listen. Repeat yourself. Get your loved ones to go with you and repeat what has already been said. Get a second opinion, get a third opinion, keep getting an opinion until someone listens to you. YOU are the best judge of what’s going on in your own body. And if they don’t give you that appointment you were referred for, chase it up, keep chasing it up, and keep demanding it. Don’t take no for an answer. And this goes for other things like dealing with the people who decide on the benefits you receive as well. Get the back up from local agencies who can help you and support you through it. Appeal, appeal, appeal.
- Don’t give up – you’ve got this far. You’re not self-harming any more, you’re not drinking yourself into oblivion, your eating disorders are in remission. Why are these all so important? Because it proves that you can do it. You’re in more physical and emotional pain now than you have been combined throughout your life and you’re doing it. You’re doing it without those crutches. Look at you. Look at how far you’ve come. Keep talking it out. Keep pushing yourself to say it. Keep saying it. And don’t give up.
I’ve touched on this before, actually I’m pretty sure I’ve ranted about this before on a bigger overall post about consent, but considering today’s outing into my local small town I feel a bigger discussion is needed. A much bigger discussion. So for the able-bodied amongst my readership, please know that whilst many of you already know this, this is aimed at the people who don’t. I’m sick of having to have the sort of show down I had in a charity shop today, and I’m sure other wheelchair users are too.
We are all familiar with the concept of bodily autonomy, or we should be. Most people are aware of the idea when it comes to sexual consent. You don’t get to touch another person’s body without permission. You don’t get to kiss them, to hold hands, to have sex with them without them explicitly allowing you to do so. This is what we should be teaching our sons (and daughters), instead of teaching our daughters to never leave a place alone, avoid wearing clothes that are revealing, and never ever ever do anything that might suggest in any way that they are sexual beings. But do we talk about consent and bodily autonomy when it comes to wheelchair users? Are you scratching your head about the last time you heard this discussed? I’m pretty sure a large proportion of people reading this are.
Picture this, if you will, I’m a UK size 14 (US size 16) individual with blue hair, dark glasses (Irlen tints), I’m 5 feet 6 inches tall. I choose to use a manual self-propelled wheelchair, rather than an electric one, to try and keep some muscle tone in my upper body so that when I use my walking sticks rather than my chair I can get around easier. I am entering a charity shop and manage to hit slightly the wrong angle. One woman asks me if she can help me into the shop and I politely decline, saying I just need to reverse and re-position my angle. She nods. That should be the end of it. Enter her mother, who comes along and just pushes me in. She wrenches my hands from my larger wheels, causes my right shoulder to go into subluxation, and then when I don’t thank her for her help, mutters to her daughter that I could at least be grateful.
Variations of this scene play out regularly. People don’t see those of us in wheelchairs as their equals because they see the chair before they see us. They see the disability before the ability and they assume that we’ll be grateful for any and all assistance. The thing is, I genuinely am grateful when I’ve asked for that assistance, like when I had earlier asked for someone to get me an item from the chest freezer in another shop, which I couldn’t reach. But to assume that I need help, and lay hands on my chair is another thing. I’m currently propped up against pillows in my bed as I type this because I can’t move my shoulder very far. I can’t put the lidocaine patch I need on the shoulder without my sister’s help, and the pain killers I have aren’t really going to touch the pain.
If the above incident would have happened yesterday, I would have crawled into my shell, wheeled myself away and hidden from the woman until she left the shop. My PTSD induced anxiety was high and I was trying not to hide away as I went out to get things done. Today though, already dealing with high pain and a bad night’s sleep, my temper was up. When this woman muttered to her daughter, in front of her three year old grandson that I “could have said thanks,” I bit. I turned around and unleashed something along the lines of the following:
“I had already turned down your daughter’s offer of help and was in the process of re-positioning my chair when you came long and pushed me into the shop without my permission. In doing so you’ve caused me more pain than I was already in. I don’t allow people I don’t know, who haven’t been trained, to push my chair due to the nature of my condition. If it is pushed in the wrong way, the additional issues caused can set me back, cause me further problems, and reduce my capacity to function.
Furthermore, what have you taught your grandson on the issue of consent? A wheelchair user’s chair is an extension of their body and in laying hands on mine and pushing it without permission, you violated me. You’ve wrenched my shoulder, and no I won’t be thanking you. You should be thankful I’m not asking the shop manager to call the police so I can report you for assault. You may think I need people to feel sorry for me and therefore were doing a good thing, but you didn’t ask. You assumed from the point of view of someone who has never used a wheelchair and overrode my bodily autonomy.”
She looked at me dumbfounded. Perhaps the use of large words confused her, or it could have been the fact I used language that told her she’d assaulted me. I’m not entirely sure. Maybe she didn’t expect a wheelchair user to be so eloquent. I’m an English Lit major and an author, what can I say? But these are the things the able-bodied public need to learn. They need to be taught that wheelchair users need and want their chairs to be treated as a part of them.
Our chairs, even if we use them part-time, are an extension of us. Without them we have less independence, less freedom. If you knock them or handle them wrongly, you risk hurting us, making our conditions worse, and ultimately putting us in dangerous situations. I’ve lost count of the amount of times I’ve had people bash into my chair without thinking, or climb over my footplates without so much of a concern as to what would happen if they tripped and landed in my lap. It’s time we talked not only to our children about the facts that people with disabilities are humans too, and that only they have the right to decide who touches their bodies, but that we need to respect that people with disabilities have the right to decide who touches their bodies and their mobility aids as well. That wheelchairs are not just a means of getting about, but an extension of the person using them.
It’s Sunday. I was looking forward to a nice coffee, a few hours spent watching lazy Sunday afternoon movies, and catching up with the women in my online disability groups. We grumble about aches and pains, talk about daily life, and suggest products and things that will help each other. Instead I’m shoulder deep in discussions about rape, molestation, abuse, Mayim Bialik’s op-ed piece in the New York Times, and fending off people who don’t understand that they are perpetuating rape culture.
There has never been any scientific proof that clothing has anything to do with a person (yes person, men get raped too), being sexually assaulted or harassed. It is a perpetuated myth. And yet I’m still having to explain this to people.
The way a person looks doesn’t effect the likelihood of them getting raped either, Mayim, so thank you for that….
I have also experienced the upside of not being a “perfect ten.” As a proud feminist with little desire to diet, get plastic surgery or hire a personal trainer, I have almost no personal experience with men asking me to meetings in their hotel rooms. Those of us in Hollywood who don’t represent an impossible standard of beauty have the “luxury” of being overlooked and, in many cases, ignored by men in power unless we can make them money.
I’m not part of that impossible standard of beauty either, yet I was abused as a child and have been harassed as an adult but please go on. I wasn’t overlooked. These aren’t reasons for you to be overlooked. You. Have. Been. Lucky.
I have decided that my sexual self is best reserved for private situations with those I am most intimate with. I dress modestly. I don’t act flirtatiously with men as a policy.
So for those whose natures are naturally flirtatious they need to change their ways? Hmm. Let me think about that? Most women keep their sexual selves for private situations. And those who don’t deserve to have that choice. Modest dress is something I’ve always gone in for. So again please continue. I was harassed at work in standard fit jeans and a baggy hoodie.
When Mayim’s supporters use the old adage that people are making themselves more susceptible through their actions they are forgetting how manipulative rapists and abusers are. When they say that they aren’t including those under the legal age at the time when they were attacked, they are doing us a disservice as it discounts our experiences. How many young or child actors have been abused in Hollywood and are part of the bigger problem that Weinstein is currently the focus of?
When you tell survivors that they should have come forward sooner, you are refusing to understand that for some of us the fear of our abuser prevents it. You are again victim blaming. There is a judicial system in place in many countries in the Western World where rape kits have a huge backlog. Look at Mariska Hargitay’s campaign to get them processed. Not to mention a system where we have to face our abusers, are often disbelieved, and made to relive every detail, all whilst knowing our abuser will likely still receive minimum sentence if any at all. Just look how easily Brock Turner got off.
Mayim isn’t even entering conversation on her op-ed currently. She’s refusing to listen to our voices. Her supporters are just as narrow-minded. Such a shame that a woman who is a feminist and a scientist is refusing to listen to other women about something she has no quantifiable experience of, something I pray she never has quantifiable experience of.
I’ve got a couple of trips coming up in the next month or so. Trips I’m more than excited for, but that are also anxiety inducing. They aren’t too far away, but they do involve planning. A lot of planning. I need to know exactly what I’m taking with me. I need to look at transport when I’m there, what I can do safely and on my own, the mobility aids I need with me, etc, and I try to do it whilst travelling light if I can. It’s made easier by the fact I travel to most places with my sister, because it means I’m not having to carry the suitcase, and we share a suitcase. But there’s always a lot to consider.
Firstly, how easy is public transport going to be for me? In the case of London, I can download a map of the accessible tube stations here but, these are still going to require me looking at the accessibility and seeing just how truly accessible they are each day. I’m planning on taking my wheelchair for the days my pain levels are higher. But that means I need to look at where I’m going to be able to get to. My fibromyalgia, arthritis, and chronic fatigue can affect my ability to self propel. It can stop my legs from functioning properly. I know this trip that my sister isn’t going to be with me every day. So each day is going to require a very detailed plan for travel. The buses in London, whilst cheaper than tube, don’t necessarily always have room for wheelchair users, and quite frankly, I hate travelling by bus with my chair. Some days are going to be walking stick days, and those are more easily done, but I still need to plan where I’m going.
I mentioned my sister not being able to be with me all the time, this means I need to have my anxiety emergency pack with me, ready to go when I venture out alone. This means I need my backpack with me at all times. In it I’ll have the following items:
- Laptop and charger
- Colouring books
- Phone and charger
- Pencil case with coloured pencils, pens, pencils, eraser and pencil sharpener
- Small plastic toys
- Fidget cube
- A small cuddly giraffe known as Jerry
- Chewing gum and sweets
- Nook and charger
- Paper bag
- Oyster Card
- A notecard that has my sister’s contact information on and details of why I may not be verbally responsive
Now some of that will slip into my handbag rather than my backpack, and I’m aware it looks like a lot, but actually it’s not when you consider most of it will fit in smaller folders/wallets inside my backpack, but I need to be prepared for anxiety attacks, PTSD flashbacks, Sensory Processding Disorder Overload, or shutdown. These are the things that can help calm me down, and/or are essential to me getting around.
I also need to look at the accessibility of the activities I intend to undertake and just how easily I’ll be able to do them. Like for instance on this London trip, one of the things I am doing involves this amazing British Library trip with Quest Retreats. So I’ve spent a good amount of time checking the accessibility of the library, making sure that I’m able to decide on the day if I need my chair or not, and I’ll spend a few hours with my sister going over transport routes from the place we’re staying so we have options available. Because of my Asperger’s I need to know in advance the routes I’m taking. It minimises stress. It also means I can have them saved in my phone. I’m less likely to forget them due to fibro fog and that helps to reduce stress as well.
Once I’ve thought through all of these things, and made sure I’ve got my medications packed, with an extra week’s supply, just in case, I then can look at the normal things, like clothes, and underwear, etc. My trips involve spreadsheets, print outs, folders with information in, checking repeatedly for available information on accessibility. I like to know what I’m facing. And I like to know that I’m not going to be disappointed when I get there, like I once was in York. The Shambles has a beautiful Harry Potter inspired shop that doesn’t have a fold-able ramp for disabled customers. The step would have been too high, even with my walking stick, and because of my hypermobility, would have meant a hip out of joint, so I missed out on something I desperately wanted to experience and had gotten excited over.
Being disabled doesn’t mean that I can’t travel. It just means I do things in a different way. I take into account the fatigue I’ll feel each day, the pain levels that may or may not cause me extra issues, the environments I’ll be in and the people I’ll be with. I pack things that are beneficial in making experiences enjoyable for me. I can’t wait for the trips I have coming up, and I can’t wait to share photos and blog posts. I’m going to be so excited about the British Library trip, and the possibility of meeting a friend or two I have yet to meet in person, that I’ll be bubbling over! I just need to prepare a little, okay, a lot more in advance than others may need to.
I know there are days when with the depression, the anxiety, and the fibromyalgia, it all feels like it gets too much. I know that there are days where you just want to hide from the world. I know these things, because like you, I have fibro, I have depression, and I have anxiety, although mixed in with a myriad of other conditions. But you are amazing.
Your strength and determination shine through with everything you do, and watching your documentary tonight made me cry. I cried the tears of a fellow chronic pain warrior, I nodded and recognised that “my body says no but I say yes” moment when filming in the desert, I recognised the exhaustion and the way you hid the pain until you couldn’t, I recognised the need to sleep whilst others keep going.
I’m still fighting for medical help to control my pain, still searching for ways to keep going. My body has rejected the NSAIDs, the opiates, etcétéra, and lidocaine patches give me minimal help. Watching your documentary gave me a reminder that I can and should keep on fighting. It’s only through talking about what we go through that we can help others to see they aren’t alone.
I don’t have as wide an audience as you do, but I hope that in my own way, as a blogger, a contributor for The Mighty, and an indie author and artist, I can help raise awareness that chronic pain is real and a battle we need to fight. Thank you again for being so honest about yours.
Five foot six in a wheelchair,
N. A. Le Brun
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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WANT TO HAVE THE CHANCE TO SKYPE WITH CLAUDIA HERSELF?
IF YOU’RE IN THE US WOULD YOU LIKE CLAUDIA TO BAKE YOU COOKIES? (trust me on this she’s got a talent for baked treats)
THEN WHAT ARE YOU WAITING FOR? CLICK HERE OR ON HER PICTURE BELOW AND JOIN IN THE C3 FOUNDATION AUCTION!
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.