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Electricity

16 Aug

I caught this to share with you…

I watched the night sky crack over and over again.

The pulses of light were like memories returned.

A few moments (a long, thirteen second exposure) calcified, concentrated on my screen (once the vocal billows rumbled past and I could plug in again), and the fine, reaching, efflorescent threads appeared and yes, this is precisely how it feels to have lost moments returned after a decade or more.

One small sparkle reaches and branches into more crackles into cracks like a heavy foot on the lake, not yet settled fully into winter.

People can tell me a memory, but it just doesn’t feel true, organic, like the deep in me every cell, electrifying every nerve of a firsthand memory, and these second hand memories just can’t capture the intricacies of how my senses & mind focus and capture each morsel, waft, tactile, auditory, proprioceptive vision in an overloaded, carnival ride.

Each large crack, each branch, each baby eyelash and hair-thin thread a sensory memory, each grouping creating a breathing, visual, auditory, wildly flavorful, supersaturated, olfactory snapshot in time, in my strange and wonderful curious, thirsty, synesthetic, autistic, insomniac, famished brain.

It is electrifying.

It moves my limbs ever forward, seeking the tiniest splinter to restore conduction, to send out the dendritic heat and light so the bits and bobs form, what is for me, a complete memory, to fill the gaps where darkest shadow conceals unknown depths and a dragon or two

Exposed by the flash, the beasties and dragons pass control back to me and I can safely reach out, touching scales and jagged rock. Once I can feel the textures, and smell the sweaty mineral condensate and feel the radiant ginger spiced hotness of breath, and a slice of greyed sunlight falls on faces again, then I can set my pack down and explore before the calm and the darkest, soundless, healing, most welcome sleep embraces me.

-b.

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Rare Disease Day Festivities

1 Mar

Whooo has a rare disease?  

I do. It’s not really that rare in this country, it’s just that we don’t routinely screen parents prenatally (they didn’t check for it in the two rounds of genetic counseling I went through, having nearly zero family medical history, and hahahahahahhahahah, of course I have mutations from both sides of the gene swamp.  The universe is a $&@!ing comedian.) and worse, only two states in the US routinely screen newborns.  For the love of Pete!

This is wrong wrong wrong wrong wrong.

So, here’s how we can make the medical establishment pay attention (that isn’t as likely to get us hauled in like my previous plan to flash my pale, porcelain white boobies while holding up an anti-legume placard to illustrate that not only darker skinned males, but also pasty females, can have this disorder. Don’t fret, my dears,  I’m not flashing anyone (not on purpose, anyway. Sorry about the other day, new neighbors across the way).)

In honor of all of those living with Rare Diseases, please (PLEASE PLEASE PLEASE PLEASE) consider signing the petition over at G6PDDeficiency.org.

Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.

It will take you just a minute, but it can save lives and make all of our communities healthier. After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post. Awareness is powerful. Thank you. Thank you.

Thank you.

You are the best.
G6PD Deficiency Newborn Screening Petition

Derailure to Communicate.

27 Feb

Interrobang!?*

Pardon my puntification.

Sorry.  I just couldn’t stop.

I’m all done now.  Let’s carry on as though that didn’t happen.  Thank you.

I know a few folks who seem to be experts in this sort of derailing, and sometimes it can be difficult to determine if they are being unintentional asshats, are just not savvy in the realm of interpersonal communications, are intentionally gaslighting you (link to a fantastic piece on The Good Men Project), or are disordered something-paths or narcissists that only dwell in their own little realm of precision asshattery (or assmillinery.  Yes, I know a few that not only make their own hats but they trim, bedazzle, bejewel, and embroider their asshats to dazzle and confuse unsuspecting people trying to communicate and generally live with them.)

This is a fantastic piece that came to my attention, awhile back, courtesy of The Perorations of Lady Bracknell.  I am sharing this version, as it originally appeared and now, thankfully, appears on Bird Of Paradox.  The website, Derailing For Dummies, is back online, but I can’t seem to find this particular piece native on their site/blog.

I hope it brings some clarity and awareness of communication etiquette, be it your own or that of someone who is a serial derailor (derailetor?).

Even the most adept communicator can benefit from this gem.

Here’s the link:

Derailing For Dummies (reconstructed from Google Cache, by BirdOfParadox.Wordpress.com)

Cheers,

B.

*Stylized Interrobang ink by Matt Lackey at Howl Gallery Fort Myers, Florida.  I’ve had this for over a year.  I like the versatility of the interrobang.  I also have an asterisk to tell folks that there is more to my story.

I hope…

7 Nov



Hopper.

Originally uploaded by The Happy Aspie

…You are having a good day..
…this picture makes you smile even just a little, even if it’s so slight even an expert in human facial expressions wouldn’t be able to detect it. I mean, I hope you smile bigger than that today, but even the seed of a smile is a start, yes?

Good.

-b.

No Beans About It.

20 Jul

Fantastic article on G6PD Deficient patient diet suggestions.

I am a person with G6PD Deficiency (and female so I got my mutations from both genetic parents, which is a little more rare as far as probability goes, but not as rare as once believed.) I am raising a son with G6PD Deficiency and doing my best to not have him endure the oxidizing damage due to contraindicated substances that I have endured in my lifetime. I am hoping that by spreading the word and correct information regarding G6PD Deficiency that awareness will smother ignorance and stupidity that seem to come into play all too often.

Historically, it has been considered a disorder mostly of everyone but white females (and men, but men have been more widely studied and they only need one affected X to be fully deficient…) Women, need mutations on both x’s (one from each parent) to be considered deficient so we are less likely to be fully deficient, and more likely to be partially deficient, meaning we have one x with the affected gene instead of on both x’s. Once upon a time, the term carrier was used but the term partially deficient is coming into vogue as for many women, due to the particular variant or due to lyonization, it is a more accurate description. Of course, as is the case with many disorders that are believed to either include or exclude a particular gender, race, or geography, it is revealed that the excluded race or gender was never really studied, due to many circumstances, but it really is starting to look like an unfortunate tradition that has killed and injured so many people just because they didn’t fill the prejudicial mold and were believed to be categorically exempt or that it was an incredible rarity.

As it turns out G6PD is not as rare as once believed, particularly in females. G6PD Deficiency is one of the top 5 genetic disorders of pre-natal origin causing 26% of global common birth defects.

It is real and it goes beyond avoiding fava beans. The website G6PDDeficiency.org is a phenomenal resource on many aspects of G6PD Deficiency, including handy lists of contraindicated medications (don’t assume your doctor knows what is safe. Check and double check. I have found that a good pharmacist is worth their weight and seem to have a better knowledge of contraindications, but still I would check and double check and check again for good measure.

The article/page I have linked to, below, offers an excellent rundown of how we do need to be vigilant about what we put in our bodies, as there are different degrees of deficiency just like there are over 400 identified variants of this particular enzymopathy.

Why G6PD Deficient Patients Should Avoid Legumes.

I’ll post more about our experiences living with G6PD Deficiency as I get around to it. Awareness does seem to be growing in the USA. I was thrilled to see that the writers of the USA Network’s “Royal Pains” included a female patient they eventually diagnosed with Favism/G6PD Deficiency. I was even more excited when they suggested testing her young daughter due to the hereditary nature of the disorder. It was really fantastic to see awareness of this disorder and that it can impact females, as well, raised in entertaining “Royal Pains” fashion. Pretty great.

PLEASE PLEASE PLEASE consider signing the petition over at G6PDDeficiency.org.  Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.  It will take you just a minute, but it can save lives and make all of our communities healthier.  After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post.  Awareness is powerful.   Thank you. 

G6PD Deficiency Newborn Screening Petition
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