New Book!

I’m pleased to announce the soft launch of my latest book, “I’Mmoral: Poems for Unrepentant Sinners and Free Thinkers.” For the time being, the eBook is available only on lulu.com, but is being rolled out for distribution through Amazon, Kobo, NOOK, and more. Once I have approved the proofs of the paperback version, I will advise where those can be purchased as well.

cropped-immoral-image.jpegSummary: What would the war cry of a mostly introverted, mentally ill, autistic, genderqueer, physically disabled, feminist, atheist, polyamorous woman sound like? A lot like this. Using a combination of essay and free-form poetry, R.K. confronts the status quo and dissects it, inspecting its parts and discarding the bad bits. In spite of tackling some obviously serious and controversial topics, such as abortion and the anti-vaccination movement, she approaches her subjects with humour and then slaughters them with equal parts derision and kindness.

Price (eBook): $2.99 / Click here to view/buy

Thanks very much for your support!

/rk

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New Digs, New Work

Last year was supremely difficult, creatively speaking. My ongoing health issues got even more complicated, with new symptoms requiring new medications, and overall I felt really defeated. It took a toll on me physically, and ended up triggering a lot of mental fallout as well. Writing under those circumstances was almost impossible.

As we go into the fall this year, though, I’m finally feeling a sense of renewed creative energy. Some of this is down to some changes in medications and learning how to deal with some of my new physical challenges, but the biggest change is that I’ve found a new writing space.

I have always wanted to write. But writing is work, and for most people, you have to treat it that way. You need to set aside time and space to commit to getting it done. One of the things we sacrificed in our move to downtown was our home office, which makes writing at home even more difficult. I used to do a good deal of my writing from bed (out of necessity sometimes), but there were inevitably distractions that would make it hard to concentrate.

It hasn’t helped that I have been struggling with depression since I officially retired and became fully disabled — depression due to my lack of direction and identity. I needed a reason to get up and get dressed in the morning. I also underestimated, when I moved in with my husband, how much I would miss having my own space — something that was mine alone.

mybywardofficedesk

My space: I’m surrounded by my books, my art and a cactus I haven’t killed yet. There are also windows and other nice creative people here.

I realized that what I needed to feel like a whole person again was to find a creative space, commit to finishing all the projects that had been in limbo, and hopefully find a way to re-establish a professional identity for myself.

It took a bit of searching to find a space that fit the bill (and the budget), but I’ve been really pleased with the amount of work I’ve gotten done so far (and it’s only been two weeks!).

What I’m working on / coming soon:

  • A book of poetry and essays on counter-culture subjects called: “I’Mmoral”. It is 98% complete and I hope to have it published and available for sale in the next month (the ebook version should be ready in the next few weeks, with the paperback version taking a bit longer due to proofs and distribution, etc.).
  • A compote cookbook! You can catch up on my recipes in progress at Compote is My Jam. I would like to finish this one and have it available for sale in time for Christmas.
  • A memoir focusing on my childhood stories of abuse and mental illness. I’m about half-way through writing this one, so my tentative goal is to have it complete by early 2016.
  • A re-imagined work of Oedipus Rex (fiction novel), hopefully to be completed by late 2016.
  • I will continue to blog here, at Cuckoo My Cuckoo, as well as on my transgender/androgynous lifestyle blog, That’s My AgendA.

I have sincerely appreciated the support of my blog readers and those who have purchased my existing books. If you might consider further support to help me subsidize the cost of my writing space, I would be super grateful!

It’s tough being a writer, period (most people don’t make enough from their writing to make ends meet), but being a disabled writer is even tougher. I really don’t have any other options in terms of working. I’d like to think, as well, that my writing adds something to the world and has value on it’s own.

I have set up a page over at Patreon, where supporters can sponsor me for as low as $1 a month. Rather than set it up with walled access to content (I believe content should be accessible — I want you to read my writing!), what I might do instead is set up a Thank You or Sponsors page here on my blog where I can put your name (or avatar name) showing that you are one of my awesome patrons.  Please consider sponsoring me here:

https://www.patreon.com/rkbelford

Thanks so much! Without readers, being a writer is pretty boring, so you’re the best part of my day!

/rk

Support me on Patreon

patreonWriting this last year has been a challenge while I adjusted to new health issues. But as I come through to the other side I feel a new surge of creative energy flowing through me and I’m excited to complete all the projects that had to be put on hold while my body and mind were being insufferably annoying.

This is where I could use your help, though. I need your support! Self-publishing means I don’t get paid to write. Being disabled means I don’t get paid much of anything, period.

It’s more than financial support I’m looking for — pledging me and becoming a patron, even in a small token amount, let’s me know that I have supporters. I cannot overstate how important that is to the creative process.

If you’ll take a few minutes to go to my Patreon page, read my spiel and consider pledging, I will be the most appreciative of artists. (Click here for more info on Patreon and how it works.)

Can I write without this type of support? Probably. But I can write more (and better and more confidently) knowing I have backers and fans who want to see my efforts shared with the world.

Thank you!

/rk

Insane, Got No Brain

Insanity is inconvenient.

There is this impression which ‘normal’ people have that insanity is somehow a result of personal deficiency.  As if somehow having your shit together can prevent it from sneaking up on you.  That having money or friends or a good family will offer some sort of protective barrier.

It certainly seems that way, right?  Because the really crazy people you know are separated from family.  They’re destitute.  They’re those lunatics on the street, mumbling under their breath and yelling at no-one and everyone.

It doesn’t occur to them that many of ‘those people’ might have had all of those things.  It’s simply that insanity pushes those things away.  It pushes them away and takes you away and discards you.

It is really hard to form connections with people when you are mentally ill.  Doing that requires opening up.  Not just opening up and revealing who you are inside (which in itself is terrifying), but opening yourself to damage from the outside.  Because other people are dangerous, even if that isn’t their intention.  When you are mentally ill, your wrongbrain tries to steer how those interactions are going to go.  It sabotages.  It distracts.  It exhausts.

~~~~~~~~~~

About a year ago I started feeling things that weren’t there.  Burning sensations.  Popping sensations.  Vibrations, numbness and even feeling moisture on my leg when I could clearly see there wasn’t anything there.

I was diagnosed with peripheral neuropathy, caused by my diabetes.  Unfortunate, but normal.  Normal to feel things that aren’t there.

~~~~~~~~~~

I’ve been having auditory hallucinations.  This isn’t new.  I’ve had them to some degree on-and-off since I was a child and it’s probably why I was originally thought to have ADD.  I could sit for hours, staring off into space.  I remember performing really well on tests (at the gifted level), but struggling to focus while I pushed the sounds and images out of my head.

Hearing sounds that aren’t there means you’re crazy.  Not normal to hear things that aren’t there.

~~~~~~~~~~~

Wshhhhh shhhhhhhh whisper shhhhh wuhhhhh shhhhh

Why? Shhhhh whisper why shhhh no no oh shhhh

Sounds filling my head in a quiet room is not quite so bad.  But it wears on me.

Stick me in a room with other people, all competing to be heard, and the sounds in my head do battle.  I can’t focus.  I can’t keep track of my spot in the conversation.  I can’t sing in the choir when there are two voices; the one that comes of my mouth and the one I hear in my ears.  It’s wrong.  All wrong.

I know that I can’t trust myself to be with people when I start to see them as antagonists.  I feel the stares.  I hear whispers and can’t tell if they are from inside my head or behind my back.  People’s looks feel aggressive.  Their words feel dismissive.  I don’t want to be around friends because I don’t want my brain to tell me lies about them.  It’s easier to hide where the voices can lie, but at least my eyes don’t confirm my suspicions.

But I can’t hide completely.  What do you do when your lover reaches to kiss your hand and the nerves endings in your skin send your brain a message of burning and your brain answers back with a mental image of melting, sloughing skin?

~~~~~~~~~~~

My body is sending my brain the wrong signals.  My brain is sending my body the wrong signals.  Those two things should be the same and reasonable.  But I don’t kid myself that they are.

On a drive to the doctor’s with my mother, we make casual conversation.  “Do you miss your car?” she says.

“Once the neuropathy and the muscle spasms got bad I didn’t feel it was safe to drive.”

“Ah.” she says. “Good point.”

“I also kept finding myself thinking about driving into oncoming traffic.  I couldn’t get it out of my head.”

She says nothing and just presses her lips tightly together and keeps driving.

~~~~~~~~~~~

Insanity says “fuck your schedule”.

Insanity says “you’ll never achieve anything”.

Insanity says “I decide”.

/rk

Thank You No Thank You

I hate the expression ‘control freak’, but I suppose it’s suitable to describe me, in that when I don’t get to control my surroundings, I freak out.  More than a little.  Being disabled means giving up control.  Even if set out not to, in the beginning, and figure out some work-around schemes to allow yourself to maintain control, there comes a point when you have to cede some or all control to other people.

I hate it.

“It must be so great to have other people do things for you.”

No.  It isn’t.  I might have thought so too, but let me tell you why it’s not.

I'm going to have to go with... no.  Also... fuck off.

I’m going to have to go with… no. Also… fuck off.

You’re probably expecting some speech about how control is important to my dignity and self-sufficiency, and sure, yeah, that’s true.  But what is driving me the most crazy these days is the fact that in ceding control, I somehow lose any autonomy over choice.

I’m not a very grateful person, apparently.

I, too, thought that the hardest part of having to ask other people for favours and help would be the asking.  I got over that pretty quick when I realized that the real and truly hardest part would be to have to be grateful for those favours when they weren’t a) the things I asked for or b) all that helpful if they required me to re-do them myself.

I’m aware of how shitty and ungrateful this makes me sound.  And yet there is a pretty big part of me that doesn’t care.

If it is frustrating when you offer to do something for someone only to have them be ungrateful and critical when you do the thing (albeit the slightly wrong thing) because it’s the thought that counts…

Try to imagine what it’s like to be the person you did the favour for, who asked for help because they literally cannot do it themselves and they now not only do not have the thing they needed, they now know for certain that they will never have the ability to have what they want or need ever again and this is their life now: helplessness and dissatisfaction and people who aren’t going to take the time to figure out what their needs are.

Gratitude feels like a pretty privileged concept to me.

I don’t have a choice to ask for help. Powerlessness has been thrust upon me.  And, yes, I probably need an attitude adjustment, but I’m not there yet.  Because right now it feels like it’s about respect.  It feels like if people respected my right and need to get what I asked for, they’d take the time to make sure they understand the request and that we’re communicating well.  That they’d acknowledge that my condition dictates that sometimes I might suffer from brain fog, which means that I might need some help and prompting to be sure that they get the info they need from me, but that I still do have opinions and needs and desires that are valid.

And if people took the time to understand that… I’d have gratitude.  And satisfaction.

/rkb

#DyingnotDying

I’m dying.  I mean, faster than some and slower than others, but it’s not going to happen in the next 10 minutes.  Probably.  But we’re all dying, aren’t we?  So how exactly, if you are occasionally prone to morbid delusion, do you reconcile that?

I’ve had a few actual brushes with death, which doesn’t help dismiss the notion.  When your body is in a real and actual degenerative state with various organs telling you to go fuck yourself, it’s hard to ignore the steady decline towards what seems like an inevitable conclusion.  And migraines — sweet Jesus — when it feels like your eyeball is going to explode out of your head it is easy to imagine that a stroke is not only possible, but imminent.

IMG_0146I’m not sure where this started.  It pre-dates my actually being sick, I think.  As a child I suffered two things:  chronic nosebleeds and headaches.  (I say headaches, because I don’t think they were migraines back then, but getting regular headaches were still a bit of an anomaly, in that other kids didn’t seem to get them except when they were sick.)  The nosebleeds were presumably benign, but blood is scary.  Even more scary was the fact that I’d often get them in my sleep, so I’d wake up to a bloody pillowcase.  If that doesn’t convince a six-year-old with an active imagination that she’s dying, I don’t know what would.

Fast forward several years and there was more blood, this time in the toilet.  Yes, gross.  Yes, embarrassing.  Yes, I didn’t tell anyone about it for years out of said embarrassing grossness and instead just waited to silently die from a bowel perforation.

Thankfully I did eventually seek treatment, but not before my fatalistic (although at this point not entirely unjustified) delusion was fully entrenched.

This is where you will tell me that imagining that I am dying is what makes me sick.

Ok.

Now I’m imagining that I am dying because I am imagining that I am dying.

So thanks for that added layer of guilt.

See, this is the problem with delusion and obsessive thoughts.  If I could stop myself from ruminating, I wouldn’t be mentally ill.  It’s not that I don’t know much of it is nonsense — or at least that it serves no purpose to obsess over my mortality other than to further harm myself.  I know that.  But the thoughts continue to niggle at my brain, and the fact that I continue to get sicker reinforces it.

The definition of hypochondria is excessive preoccupancy or worry about having a serious illness. This debilitating condition is the result of an inaccurate perception of the condition of body or mind despite the absence of an actual medical condition.”  But that’s not me, exactly.  I do have medical conditions.  Real, quantifiable, testable conditions.  

When we were kids, my brother said to me “you don’t fake being sick, you really make yourself sick.”

Did I make myself sick?  I don’t know.  Maybe?  Sometimes when I’m feeling especially self-destructive, I do blame myself for that.  The illnesses that I have genetically come from both sides of my family.  I just seem to be a repository for all of them, all at once.  I am either very unlucky, or there is something about my mental and physical makeup that has made me prone to triggering them.

Ultimately though, does it matter?  If somehow I ‘talked myself into disease’ with my negative attitude, they’re here now, and real, and have to be dealt with.

Conversely, what if I didn’t cause them?  What if my frustrating paranoia has helped me.  Most of my illnesses were detected very early (including my skin cancer), and were diagnosed after initially being dismissed by doctors because I was too young, or the wrong sex, or they had doubts.  But I wasn’t wrong.

So maybe being paranoid and overly sensitive to every change in my body has served me well.

It would be a strange sort of irony if my conviction that I am dying is inadvertently responsible for the prolongation of my life.

/rk

But You Don’t Look Sick

Being functionally disabled while outwardly appearing well is problematic.  I suffer from multiple chronic illnesses, each of which are either somewhat invisible to the viewer, or relapsing-remitting in their nature.*  This has never done much for my credibility when it comes to asking for accommodations, treatment or even sympathy.

reenacane

Rockin’ a cane in NOLA

It’s strange what a difference a cane can make.  I’ve used one for about 15 years now, on and off, but not all the time.  Which confuses people.  They have seen me (apparently) able-bodied and I’m still relatively young, so they ask “what happened?”  Even people who’ve asked me this question before forget the answer.  I have arthritis, and have had it for almost 20 years.  And even when I’m not using the cane, I have pain and stiffness.  The cane is just a tool.  And whether I choose to use that tool is often a push-come-to-shove decision.

Because I don’t enjoy the questions.  It’s not that I don’t understand people’s basic curiosity and concern, but 20 years of answering the same question can wear on a person.  But at the same time it is my own ‘fault’ for not assuming a more clearly defined ‘disabled identity’.

Like a lot of people who have disabilities, I don’t always want to make that my sole identity.  I acknowledge that there is a certain amount of privilege in not having to do so.  But it is still frustrating when I can’t get a seat on the bus when I really need one.  Or get dirty looks for taking the elevator instead of the stairs (or worse, having the only elevator be a wheelchair lift and being too embarrassed to ring for assistance without a wheelchair).

And this goes for my other disabilities as well.  The thing about having multiple chronic conditions is that even though separately they might not amount to total disability, their cumulative effects combine to create an unpredictable level of dysfunction.  On any given day I face complex physical and mental challenges that can feel too difficult to explain to people, especially strangers.

So I tend to spend a lot of time either not asking for the things I need, or just avoiding situations where I can’t control my environment.  I sometimes don’t ask for food and drink when I need it, because access to bathroom facilities is unpredictable.  I turn down invitations or leave early because there isn’t adequate seating (or only uncomfortable seating which will end up setting off a flare in my back or neck).  Depending on where I’m at mentally, I sometimes can’t handle spaces that are too loud or too crowded.  And when it comes to commitments I generally prefer to avoid them because I hate disappointing people when the day comes and it turns out I can’t follow through.

I suppose if I would just ‘accept my lot’ and invest some time in developing my identity as crippled, then people would lower their expectations of me.

But that’s a double-edged sword, isn’t it?  The last thing I want is for people to write me off.  And I’m not sure I want people to go out of their way all the time to open doors for me, carry things for me, or any of the things which go along with being seen as helpless.

Except sometimes I do want those things.  Sometimes I need those things.  The real battle I’m fighting here is with myself.

I still want to control when I’m perceived as disabled.

It’s no wonder that people have a hard time knowing what to do with me.

I guess what I need, in a strange way, is confidence in my disabled identity.  For most people, unless they are born with their disability (and maybe even if they are born with it), adjusting to living with chronic illness or physical and mental limitations is a process.  And specifically for people whose diagnoses came after long periods of uncertainty about their conditions, there is already a sense of having to ‘prove oneself’.  Especially with disabling conditions that are not visible to the naked eye.

I have a lot of emotions associated with being disabled, showing those disabilities and asking for accommodations:  Guilt, shame, insecurity, embarrassment, helplessness.  They get in the way of me making good choices in terms of self-care and being a good advocate for myself.  Of course, I have no problem with speaking up for others in similar circumstances, so it stands to reason that I should be able to do these things for myself.

It is only recently, after being unemployable for several years, and suffering new symptoms which have limited me from doing some of the things I love most, that I have had to face the truth that there is no going back.  That I need to make peace with the fact that being disabled is a full-time reality.  It is part of my identity whether I like it or not.  There is no escaping that fact, and if don’t start exercising better self-care and speaking up for myself when I need to, there are real consequences.  I am the one that suffers in pain for days because I sat on the ground for too long or exerted myself physically when I shouldn’t have.

And I need to stop worrying about what other people think about the choices I make.  There isn’t going to be time to explain myself to every person who doesn’t perceive me as disabled.  And that’s okay.  People make judgements about us everyday.

I have to stop trying to manage everyone else’s version of reality and worry about my own.

/rk

* What the heck, for the sake of clarity and perspective, here’s a list:  Arthritis and joint problems (ankylosing spondylitis, enthesitis, costochondritis, chronic tendonitis and degenerative disk disease); Crohn’s disease with fistulas, ulcerative colitis, and short bowel syndrome (my colon was removed in 1996); bipolar  I disorder with mixed episodes and rapid cycling; Asperger’s syndrome; non-insulin-dependent diabetes mellitus; chronic kidney disease; peripheral neuropathy and asthma (and scent-sensitivity).