Startle Reaction

17th March 2012 By Leave a Comment

My adopted sister, Claire, is getting married (steampunk-themed!) on 26 May and I’m busily accessorizing my steampunk outfit and choosing a hairstyle. It’s really fun window-shopping! 

I had a semi-freakout about something this evening: my startle reaction. It is similar to the Moro Reflex, which disappears in babies by the age of two.
The startle reaction persists in me because it is caused by damage to my brain stem and cerebellum in infancy as a result of cerebral palsy. It will never go away, although certain types of stimuli, with repeated exposure, can become less likely to trigger it. In other instances, I will startle even if you warn me that a loud noise will occur, to the second it will occur. When warned, I can dampen the reflex by plugging my ears and tensing my muscles voluntarily. It might still startle me, but I’ll be less likely to be emotionally triggered by it.

How this relates to the upcoming wedding:

Odds are we’re going to be eating with large groups of people, which gets me nervous even if I don’t get startled (eating in public makes me nervous to the point of lying and saying I’m not hungry just to avoid it. Did I ever do that in Vegas when you were with us?). God help me if red wine is involved. 

So DH has suggested, since we’re taking the scooter, if I get startled, for me to scooter away to somewhere quiet until the adrenaline stops. I have Diazepam, and I will use it then if I have to. It won’t stop it from happening, but it might short-circuit full-blown panic that occurs after the trigger. 

(I said to DH, “I’m not fit for society.” He replied, “That’s why I love you.” AWWWWWWW! <3) 

But in the past, when my startle reaction has been triggered, the reactions of people around me (from everything to trying to ignore it, horror, pity, AMUSEMENT! (some people actually think it’s funny!) and more inflated concern for a stain on a precious carpet than my emotional well-being) have sent me into blind, uncontrollable panic that results in embarrassing amounts of uncontrollable crying in public. 
Being startled will cause me to utter obscenities. (If this bothers you, I don’t care.)

I will frequently go without fluids and get dehydrated than risk picking up an uncovered glass or mug because I never know what can trigger me or when it might happen. People drop forks on their plates, for example – it happens. That triggers me. It is horrid when it happens. 

Sometimes people think that I should not be so upset when the triggering happened by accident. It doesn’t matter whether happened by accident or not. Motivations are irrelevant. The adrenaline surges I get are a result of things that happened with regard to the startle reaction when I was a kid: my stepfather tormented me whenever it happened, and soon began deliberately triggering it, making me jump, so that he and his two teenage sons could laugh at me. Once, when I’d had enough of this, I threw a table knife at him, which scored a satisfying superficial cut between his eyes. He kept on startling me anyways. I was never allowed to leave the area to calm myself and collect my thoughts (and stem the homicidal rage directed at the person who startled me). 
So, I don’t care whether people mean for it to happen or not.
But it is appreciated when people make an effort not to trigger me on purpose. I can’t promise they will survive the experience.

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The “Inspiration Derived from Disabled People” Checklist

15th March 2012 By 2 Comments

While writing my previous blog post, “On ‘Transcending Pain’”, I came across this article in The Globe and Mail. It contains a recurring theme in the media when writing about disabled people, and especially, disabled children.

 

Ian Brown, fhe author of the Globe and Mail article has hit all of the necessary components:

1) Parent(s) “coping” with raising a disabled kid? CHECK.

Bonus points awarded if parent is single. Extra special SPARKLY bonus points awarded if parent is widowed.

2) Kid is a “disruption” in the family (an extension of #1)? CHECK.

3) Kid is “inspiring” despite #2, and is there to elevate able-bodied parents’ self-esteem/increase understanding of humanity/enlighten people lucky enough to spend time with him/bless with presence/teach us ______? CHECK.

4) Parent invents cutesy patronizing name for disabled kid (not as bad as “pillow angel”, but bad enough)? CHECK.*

The Ashley Treatment promulgated for these “pillow angels” makes me sick (and thankfully, is not yet mandated by law). I probably didn’t need to explicitly say that; if you read my blog regularly, you will have discerned my feelings about such things.

Thanks to the Disabled Feminists for referencing stuff. 

Inspire THIS!

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On “Transcending Pain”

15th March 2012 By 2 Comments

I’m a chronic pain patient on morphine.

It amuses me when healthy people ascribe romantic ideas or evaluations of the experience of pain, especially chronic or severe pain the likes of which most of them have not experienced.

More than once, I’ve been told by different healthy people how inspiring I am, or how I rise above the pain to knit, study or just be a functional adult in my normal life. I’m not the first, nor the last, disabled woman to have this revelation (but this is an excellent post by the Disabled Feminist that reinforces my thesis).

On some level, I realize that most of them only mean well, but still, those types of people make me want to crush their larynxes with my boot.

They don’t usually see me, or other pain patients (such as my husband and sister who both have fibromyalgia), on the really bad days, because on those days, we’re not well enough to grace them with our magical, inspiring presence.

The modern vomitorium.

I’m betting that the screaming, throwing up and moaning from pain is sooo not in their idea of the romantic.

If, by the end of reading this post, you still think I and other disabled people are inspiring, please check out another post of mine, and a different post by the same blogger, Disabled Feminist.

But I hope, instead, that a lightning bolt of reality has benevolently struck you.

 

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“Holocaust Memorial Day – Black Triangle” by BendyGirl

27th January 2012 By Leave a Comment

http://benefitscroungingscum.blogspot.com/2012/01/world-holocaust-memorial-day-black.html

Today, Holocaust Memorial Day, this article by BendyGirl highlights something very important for me: that disabled people were the first to be targeted by the Nazis. Her eloquence is superior to mine today, but I will try and give a brief summary, and you can click on the link above to read the article.

The “black triangle” mentioned in the title refers to the concentration camp badges that the Nazis designed. Disabled people and “asocials” wore it.

Different colours designated the prisoners in whatever way Hitler’s regime had marked them as “undesirable”. The large variety of different combinations and colours boggles the mind – a testament to the Nazis almost compulsive need to label everyone and to keep records of the atrocities they committed.

Yellow Star/Yellow Triangle: Jews – this is perhaps the most familiar one. The yellow star was created by superimposing one triangle over an inverted one.

Pink Triangle: Homosexuals – the movie Bent (with Clive Owen and Lothaire Bluteau) tells the story of a gay man’s ordeal at the hands of the Nazis, and of how he falls in love with another prisoner when he’s thrown into Dachau concentration camp. (“Bent” was a slang term for gay people.) He denies his sexuality by identifying himself as a Jew and wearing the yellow star instead of the pink triangle, believing it will make it possible that he might survive longer. Horst, the prisoner he falls in love with, wears his pink triangle with pride. The ending ripped my heart out.

Dachau is also one of the camps that had “the most elaborate system” of branding the prisoners with these labels.

Black Triangle: “Asocials” – this broad category included the disabled, lesbians, and the “work shy”.

If you were unlucky enough to be in more than one category, one triangle would be superimposed over another. More information about them can be found here.

Although today, the disabled are not forced to wear identification badges, we’re still singled out and cannot be invisible much of the time due to the nature of our individual disabilities. We’re immediately identifiable to the naked eye if we limp, use a cane or wheelchair. For those of us with “invisible disabilities”, it’s more difficult because we’re in some way expected to “prove” that we are disabled because there may not be readily identifiable characteristics to our disabilities.

I was at the doctor’s yesterday, and I was finally put on extended-release morphine for my severe, chronic headaches that are caused (probably) by low intracranial pressure secondary to hydrocephalus. I was very nauseated as I walked into the consultation room with my husband, and as we entered I told the doctor this because I wanted to know where I should throw up if I needed to: in the sink or in the garbage bin. I’d had a very severe headache for most of the morning that continued through the appointment.

After my husband’s appointment, I went next.

As I sat down next to her desk, the doctor’s first words were, “Well, you look healthy.”

Disabled people are not invisible even if you can’t see their pain.

Some days, I wish that I could be.

As BendyGirl ends her post, so will I:

To mark World Holocaust Day, please remember,

“First they came for the disabled people
And I did not speak out because I was not disabled.”

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A Proper Pain Scale – Update!

15th January 2012 By Leave a Comment

I’m seeing the doctor again tomorrow for another adjustment to my pain medications. The current ones (Topiramate, Imigran) are NOT working, and I’m on a waiting list – apparently a very long one, for intracranial pressure monitoring. Pain levels (intractable headaches) are far too high. Ideally they should be negligible, but since we don’t live in a perfect world, I’ll settle for “I’m not screaming two hours before I’m allowed to take the next dose of Gravol”.

I can handle pain that is below a 6/10 on my scale. My 6 is probably a non Spoonie’s [normal person's] 8.

I take Imigran whenever I damned well please, even though technically you’re only supposed to use it a few times a month. Sometimes it works, and sometimes it doesn’t.  They can kiss my tukhus. But luckily the doctors know I’m taking that much, because they refill it without a fuss.

Here’s the pain scale I use, written by Allie, over at Hyperbole and a Half (reprinted here): http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

“1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.”

 

How this applies to me: 

Below a 6 is basically nothing to me. I don’t take meds, and I just do my thing: knitting, posting online in Amazon, etc: ”Hey, I’m not wearing any pants. I didn’t know that about giraffes. I’m sorry your cat died; can we talk about something else?”

So, my 6: “Ow. Okay, my pain is super legit now.”

Is your 8: “I am experiencing a disturbing amount of pain. I might actually be dying. Please help.”

When I get to a 9 or higher (“I am actively being mauled by a bear.”), I lose the ability to talk, and just make vague sounds.

15 January 2012: I’m not leaving the office tomorrow without something, and mark my words – it will not be paracetamol or another migraine medication, because those won’t do beans.

16 January 2012: Idiot put me on Tegretol and insists on treating these as migraines. Refuses to explain why.

18 January 2012: Had to discontinue the Tegretol because it caused severe RLS. It didn’t do anything for the pain.

UPDATE! January 28, 2012

A different doctor at the practice finally relented, and, after an hour-long appointment of wrangling and discussion this past Thursday morning, put me on sustained-release morphine, plus instant-release Tramadol for breakthrough pain. Gravol for the nausea, and Diazepam so I have a better chance of getting some sleep (which also means DH gets a better chance of sleep).

[As I walk into the office on Thursday morning]: “I’m going to throw up. Where do I do it – the garbage bin or the sink?”

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Gravol is making me stutter (NSFW)

8th January 2012 By 3 Comments

I take Gravol, an anti-emetic, for pain relief. I have hydrocephalus, and the headaches I get are caused (probably partially) by low intracranial pressure (ICP) and slit ventricles. When my pain is very high (above a 7 on the pain scale), the only words that come out of my mouth are obscenities. Furthermore, one of the side effects of Gravol is extreme drowsiness and difficulty talking, including stuttering and holding my breath (particularly when I’m most sleepy).

Consequently, I have great empathy for this man.

The King’s F****** Speech

I have also had speech therapy, but it was not for stuttering. My voice is normally very high and soft to begin with, and this makes it more so. Having spastic cerebral palsy (CP) means my entire body is tense a lot of the time, and it follows from this that my shoulders, neck and throat are also tense; so go the muscles of the diaphragm.

People who don’t know me well sometimes tell me they have difficulty hearing me.  More than once, when speaking on the phone with a stranger, they ask if I have a cold or if I am crying. To them, my voice has a sniffly or nasal quality; to me, it sounds normal. I don’t really like talking on the phone because it makes me nervous, so odds are that makes it harder to speak.

There have also been times when patronizing condescending twats people think I’m much younger than I am, simply because of the sound quality of my speech and the spasticity of my limbs. I am over 25, and have more than once been mistaken for being, at best, younger than a teenager. and, at worst, a developmentally delayed 8-year-old. I am not the only person to have experienced this treatment. Wikipedia’s article on cerebral palsy has an entire separate section regarding misconceptions:

Spastic cerebral palsy, the most common form of CP, causes the muscles to be tense, rigid and movements are slow and difficult. This can be misinterpreted as cognitive delay due to difficulty of communication. Individuals with cerebral palsy can have learning difficulties, but sometimes it is the sheer magnitude of problems caused by the underlying brain injury that prevents the individual from expressing what cognitive abilities they do possess.

Disturbingly, this section’s source was taken from a website (which you can find in the reference section to the Wiki article) that lumps cerebral palsy (which is a constellation of symptoms) under the much larger general rubric of “developmental disabilities”. I don’t think that’s a good idea, or at all an accurate way to go about it. Having cerebral palsy does not guarantee the patient will have developmental disabilities, and hearkening back to what I said a few paragraphs back, the source of the Wikipedia reference needs to re-examine their findings. Assuming that patients with CP have a learning disability does a great disservice to those of us who do not. (Again, that’s another “first question” I’m asked – another example of a symptom linked in the public’s mind with cerebral palsy that is inaccurate.)

I’m not crying constantly.

I don’t have a cold.

I’m well over the age of eight.

I can wipe my own ass, and I cook my own food.

I’m married, and highly sexual. (Yep, disabled people HAVE SEX! And we love it!) 

I don’t have a developmental disability. My GPA was 3.89 in university before I had to start taking all of these fucking painkillers.

And for all these reasons, I’m not here to inspire you.

Should I assume that just because you live in Texas, you enjoy wearing large white cowboy hats and stomping around in giant leather boots? Of course not.

I eventually got so annoyed by having to explain these things (to people I didn’t know and would probably never meet more than once) that I started speech therapy in 2008.

Many of the exercises that Logue has Bertie (King George VI) practice in The King’s Speech were exercises that I did:

  • -Timing how long I could say vowels for while using a stopwatch (“Anyone who can shout vowels at an open window can learn to deliver a speech.”)
  • -Deep breathing with the diaphragm (“Up comes Her Royal Highness…and down c0mes Her Royal Highness…”)
  • -Loosening the jaws by making silly noises with them
  • -Stretching the shoulders and neck by rolling them forwards, around and backwards
  • -Practicing vowels (“Mmmmmmmother…fffornication!”)

Oh, come on!!!!

I hope you have enjoyed reading this bugger fuck shit post.

 

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To Russia With a Big Stick – My Interview about Traveling to Russia and being Disabled (“I’m Not an Alien with Tentacles – I Promise!”)

17th November 2011 By Leave a Comment

Squee – a 2012 calendar is being put out by the School of Russian and Area Studies (SRAS) with pics of students’ travels to Russia, Ukraine and – want – so I’ve ordered one!

I interviewed with Josh Wilson a few years back, about my experiences traveling in a country which is not known for is accessibility. You can read about it on the SRAS site here:

http://www.sras.org/stephanie_briggs_disabled_russia

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