adventures in compassionate conservatism, mental hospitals and crutches


While I was in the car today on the way over to Building 5 to get my PPD read there was a commercial on the radio… I actually had to pull over by the signal because I was so struck dumb. So, NTs and nots, I quote in true MOVIEFONE guy voice, flashlight held up to my face…

“Several mental patients have escaped the state hospital. They are rumored to be hiding in an abandoned barn. Local residents have been reported missing. Neighbors of the barn have heard strange noises near the barn and believe people are being tortured there.”

:: clears throat… followed by gagging noise::

Are you fucking kidding me?!

Seriously…

No, really?! If I bang my head on the steering wheel do you think anyone driving by will notice?

I did it,

I seriously did it.

I sat there, hands at “10 n’ 2” banging my head on the wheel until I realized that I made the mistake of listening to the local pop station, which is now owned by I<3Radio…and I usually only listen to my IPOD because I can’t stand the idea of loosing any more brain cells than necessary… (how many times can anyone hear “blurred lines” anyway)

THIS IS PART OF THE PROBLEM

How do this this that this is ok?! How can you joke about that. I AM ONE OF THOSE MENTAL PATIENTS. my FRIENDS are those ‘mental patients’ … my LOVED ONES…. my BROTHERS AND SISTERS… my soul family. For Profit some STUPID, seasonal, neurotypical owned haunted attraction is going to once again stigmatize and stereotype anyone and everyone who suffers from a mental/neurological/emotional disorder.  I can’t fight every battle, I can’t take this to the streets and make people not go… I understand the power of the dollar and how many people enjoy the idea of being scared out of their shorts one month a year by a bunch of costumed assholes jumping out of doorways.

But it makes me sick… it makes me sick that the suffering of my brothers, my sisters is a joke … is a money making scheme… that will only continue to make the lives of the mentally ill community even harder. This is NOT a joke… people suffer, people die… people are ignored, isolated, broken all the way from their bodies and spirits because of things like this and what it causes the rest of the world to do. By treating all of us like escaped criminals how will anything EVER get better… it wont.

it wont. in my life time, it won’t. I don’t know if it will ever have a change unless there’s a way to cure Neurodiversity and make everyone Neurotypical we will always be the persecuted group… the joke… the laughing stock… the people who are belittled and live in silence because the majority are going to think we’re all loose cannons …

GUESS WHAT NEUROTYPICALS… WE’RE MORE LIKELY TO OFF OURSELVES BECAUSE OF YOUR BAD BEHAVIOR than we would hurt any of you lot

ok, time for a few deep breaths… and NO, I still don’t have Tuberculosis…not in my left or right arms. and I can’t say that if someone could take a way MOST of my issues I’d tell them no, because there are parts of my problems that I’d get rid of in a heart beat… but, for the most part… I value my neurodiversity… I value the perspective it gives me on life, the universe, and everything and I think that it’s something that’s helped me… when it’s not getting in my way, breaking my heard, or causing me to run away because of my constant feelings of inferiority… or when its causing me to overdraw my bank account to pay for my medications… or doctor bills… or emergency room trips… or nightmares… or …

oh hell, this whole thing sucks.

wait… I know something else I wanted to talk about… something that’s a bit off topic, but talking about my neurological  shortcomings, differences and emotional issues….

I hate those god damn, yard inflatables…You know what I mean? Those stupid, parachute noisy yard hogs that no one can seem to just have ONE of?!

they seriously cause me rage… I hate them…

so, of course my lovely husband had to buy one of them last year… I  (not-so) secretly hope it gets stolen, or blows away in a hurricane… but, since I have like … nothing better to do until I have orientation at work on the 2nd in the morning, meeting at St. Anne’s for CPE in the afternoon… and my mom is coming over tomorrow… and bread baking, house cleaning… and, not to mention being SO FAR OVERDRAWN I not only could throw up, but have the trots at the same time.

OH…but about the yard stufties….

ImageImageI now have one… and it’s still there… no one popped it or stole it… We’ll see what happens in the coming month…Oh…and if the government shuts down…that means NIH will have their research destroyed…and since movement disorder and psychological disorder aren’t considered critical… we’ll be worse off…and I won’t get my EUC…No matter what, I’ll always be a compassionate Conservative….instead of this crap we’re doing now…

“I think we should adopt the slogan of compassionate conservatism…We can be fiscally conservative without losing our commitment to the needy and we must redirect our policy in that direction.” —Rep. James Robert Jones

So, because I want to end on a more positive note… and a bit less random, and angry…  I got one of the sweetest complements of my life from a dear, dear friend (and talented 1st chair bass clarinet player circa 2002-ish) … I’m going to put that here too.

“I’d like to thank Juliet Robinson for the inspiration to do this. I find her an amazingly strong and brave woman who has no qualms of talking about her own personal struggles. More people should be putting themselves out there to vent, or ask for help.”

and with that… off to bed…time to think about a lot of the other things going on that are worth being excited over (and broke)…oh, and I love my crutches…so comfortable…and so pretty. I love feeling stable and secure and not have to worry about the crap associated with being a cripple. Oh, and only one attack today, in public… I was out this morning on the way to do my errands and I ended up having screaming tics… and shaking but it was ok. I was stable. 🙂
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::end transmission::

A letter from a Special needs parent


I originally posted this on my facebook back in June in a Tourette Syndrome group. This is from my mom addressing the whole way she raised me. 

Images a TS mother… something that until recently I don’t think I ever said out loud…. I agree that not only does my adult daughter have TS but that I wear it also every day. — its always there, its always on my mind I always want to hear she had a good day, that things went well for her. I am sad my remarkable daughter has TS. and yes, some days I cry. I cry because I feel I brought this perfect being into the world and then one day I realized there were some issues. since nobody was talking about TS then and no doctors had any answers to anything I just knew I would treat my perfect little girl like I would any other child in my care. 

This was my daughter and with or without issues my mission was to teach her from day one everything and anything I could. 

I wanted to make sure she could be able, capable, smart, articulate, involved, interesting and interested in life. and so the years went by and she blossomed — there wasn’t really anything she missed – the awards came, the activities mounted. she graduated from High School with honors, was accepted to a conservatory for her excellence in music, later transferred to another college where she got sick and its too long to go into here and then on for a Master’s Degree while working all the way. she insisted on taking a job at a local bagel shop at a very young age. she is now married….

SO what I think is important for any TS parent to remember…… we the parents are not going to live forever. our children are a bit different…..NOT LESS CAPABLE just different…. so it is important to EMPOWER them, don’t limit them with your fears. 

When they are young get them involved, activities are excellent, keep them busy, let them experience anything that seems of interest to them, teach them how to stand up for themselves, and you as parents get involved…and yes I know often both parents cannot accept TS so you be the parent who does make sure the school knows who you are and that you stand BEHIND YOUR CHILD – give your child the power, the words and the knowledge to allow them to speak up for themselves knowing you are in the wings as backup.. get yourself involved and if you have a day where you just feel overwhelmed and want to cry go right ahead – I do. 

whatever is wrong with your kid u have to help them have a life not only as long as the parent is alive but as long as the offspring is alive….. Then I wipe my face and remind myself how lucky we all are because TS can knock you down but isn’t fatal. 

Nobody ever said parenting is easy – but the choices with TS are deal with it, or deal with it. SO, LETS DEAL PEOPLE… SO LETS DEAL PEOPLE …the absolute best way we can!!!