After a long conversation with a friend about a subject that really matters to me, I began to think (and so did she) that this might be a subject that matters to a lot of others like me. The subject is family, most especially the families of those with an Autistic Spectrum condition. I read many news articles and blog / forum posts about parents putting a voice out there for their child.  I have read the same sort of posts written by siblings.  But what they rarely talk about is the great job they do bringing us up and the strength this takes, and the strategies they have to come up with to help.

No one knew I had OCD at that time.  If they had, perhaps this story would not have been passed on to me so early.  What was a joke to the general public over this year was, in fact, an obsession that had plagued me for 18 years.

At 11, 2012 felt like a lifetime away.  By 2010, the anxiety started to crush me.  I had a small child to think about.  Would I never get to see him grow up?  Would he never have a future?  I wasn’t ready to die.  I have brothers overseas whom I’ve never met – I was desperate to meet them before 2012 because a mad part of me was convinced I would never see them otherwise.  Perhaps if the world did not end, something would happen to prevent me from ever crossing the Atlantic.  Maybe I would never see my old friends back in my birthplace of America again.

I listened to podcasts about the prediction.  I watched documentaries.  I read books.  I was searching for some clever person who could contradict the prophesy in a more educated way, rather than simply dismissing it as nonsense.  These were my compulsions, my way of balancing the anxiety that consumed me as time passed, beyond my control.

Then suddenly it was the 20th of December.  Just one day to go.  I couldn’t sleep.  I KNEW it was stupid, yet I just couldn’t shake off the panic.

I can’t actually put into words what I felt about 2012.  It was terrifying to know that, if something DID happen, I could do nothing to stop it.  Time would march on without me.

On 21st December, at the zenith of the winter solstice, I was busy working and didn’t even notice the fateful hour had passed.  When I did at last check the time, I can’t say how relieved I was to see that we had all made it.  I had known all along that was what would happen.  But OCD meant I couldn’t fully believe that.

And thinking about it, I want to state for the record that 21st December WAS the end of the world as I knew it.  After almost 20 years, I can finally breathe easy.  I now truly believe that the world will carry on.  Life will continue.  All apocalyptic predictions are nonsense.  I can really say that, now, with conviction.  I couldn’t do that two weeks ago.

And it’s a beautiful feeling, realising that you just CAN’T predict the future. Que sera sera – whatever will be, will be.  There’s freedom in this new ignorance.

We made it.  Here’s to the future, whatever it may bring.

Buddy’s Disease has never been a real diagnosis.  In fact, it’s not anything.  It does not exist outside of this bizarre form of censorship that I think everyone raised an eyebrow at.  For me, the removal of the words Tourette Syndrome implied that Tourette’s was in fact the obscenity that needed censoring and, therefore, it was something to be ashamed of.  Furthermore, calling it a disease made it sound like something contagious.  And I’d like to know whose bright idea it was to call it the idiotic ‘wholesome’ Buddy’s Disease.  I’m still not sure if they did this because they thought the topic was risqué or if they were worried about offending people who actually had Tourette’s.

The first time I saw that movie was in 1991 – coincidentally, the same year I was diagnosed with Tourette’s myself.  It was a dark secret that even I wasn’t expected to understand.  And I don’t think the media were comfortable with exposing it to the public.

Jump ahead to 2007 when the Le Petit Tourette episode of South Park first aired on television.  South Park…featuring Tourette’s?  Surely, that must be offensive!  One of my friends confessed that the whole time he was laughing at the episode, he felt guilty and worried I would be upset over it.  I surprised him: I had laughed too.  In fact, to this day I can’t think about certain lines from that show without choking with laughter.  And at least amongst the Tourettics I know, all of them who happened to like South Park also found it funny.  I would venture to say that, on the whole, the only people who really found it offensive were those who found South Park offensive in general.

In fact, even the Tourette Syndrome Association admitted that the creators of the show had done their research.  Yes, it was a great vehicle to throw as much foul language into a show as possible, but…the writers also took the time to open people’s eyes to the seriousness of the condition.  The more respectable character Kyle insists on the wrongness of mocking or mimicking real Tourette’s sufferers.  There is a scene where he sits through a group therapy session for Tourette’s patients and the patients explain the variety of tics they have.  I found myself watching open-mouthed because I have personally said many of the things those animated patients told Kyle.  ‘Most people say they don’t even notice’ – said while blinking furiously, snapping fingers and going Ding!  Sound familiar to anyone?

The show in no way glorified Tourette’s.  It wasn’t a scandalous exploitation documentary intended to shock and dismay.  It actually went beyond the stereotypes and taught people a little bit about a serious subject…but it made a lot of people laugh in the process.  Most importantly, it made me laugh at myself.  This was not accomplished by What About Bob?  South Park may not be everyone’s cup of tea, but the fact is: we have come a long way.

Was something happening in our global consciousness in 2007?  Because that happens to be the same year that The Big Bang Theory premiered on television.

I did some searching online for people’s views on the character of Dr Sheldon Cooper, as I felt certain he would have caused some controversy.  For anyone who doesn’t know, Sheldon very obviously has Asperger’s Syndrome (although the writers have refrained from ever stating this outright, so as not to turn the programme into a laugh-fest at something people can’t help), is asexual, and suffers from extreme Obsessive-Compulsive Disorder.  As with South Park, I think the writers must be doing some heavy research, because I regularly relate to Sheldon.  In fact, my husband and I often point out each other’s Sheldon-isms.  We think they’re sweet.

I was surprised to find that most people were more bothered by the stereotypical nerd angle to the show than anything else (which I will confess hadn’t even crossed my mind, because I do know people like that, and I’ll just admit it right now: I actually cried when Data died in Star Trek: Nemesis).

Within the autistic world (of which I am part), it seems a great many of us approve of having such a character on mainstream television.  Why?  Because at last we’ve moved beyond Rain Man!  Sheldon is eccentric.  Sheldon is frustrating.  Sheldon is often embarrassing.  But Sheldon has friends, he has a stable job, he even finds a girlfriend as ‘different’ as himself – Sheldon has a life.  Which is something I was been led to believe over the years is not possible for autistics.  The actor Jim Parsons himself has expressed the view that Sheldon accepted his differences a long time ago and takes pride in them, used them to get where he is in life, and is treating his assimilation into ‘normal society’ as a sort of scientific experiment.  Sometimes, he surprises himself by relating to the ‘ordinary’ people around him.

The important point is: Sheldon is not someone you feel sorry for.  Like many of us, he sometimes feels frustrated at being different from most people around him – but only because he wishes more people were as gifted as him.  He never thinks of himself as the odd one.  And why should he when we can see that everyone around him is just as ‘special’ in their own way, even the so-called girl-next-door?  Sheldon is never diagnosed or expected to take medication to change who he is.  And most importantly, he’s not crazy – his mother had him tested.

What fascinates me is that some autistics seem to have a problem with laughing at Sheldon’s OCD – because it’s something people ‘suffer’ from, a true discomfort and anxiety and therefore not a respectful subject for humour.  Well I have OCD too, and every time Sheldon knocks three times on the door I laugh…sympathetically.  I find it endearing.  I think there is an element of laughing with the character, because while not everyone has OCD, everyone does have some little neurosis, some ritual, some degree of irrationality hardwired into our brains.

Rain Man was released in 1988.  What About Bob? Came out in 1991.  It is now the end of 2012.  That means it has been 24 years since Rain Man and 21 years since Bob.  Between the two, it’s been about 22.3 years, and (forgiving this further allusion to South Park) that means it’s time we started being able to laugh at these things.

Why do we need to take our diagnoses so seriously all the time?  There is a time and place for everything.  Sometimes it’s right to be serious.  Sometimes we need people to understand that we are in pain and need help.  But other times, we need to stop dwelling on that pain and just try to enjoy life!  If all we do is concentrate on the grief, we will ruin ourselves.  We will miss all our inner beauty lying alongside the darkness.  We will miss all the good things that surround us.  I say laughter is the best medicine.  When we take our anxieties too seriously, we give them the power to take over our lives.  When we learn to see the absurdity in them, they lose a little of that power, and that’s the first step to overcoming them.

These television shows are waking up the public to diagnoses I was once given without explanation, to hold inside like a terrible secret I should be ashamed of.  They have either made it acceptable to open up about these things or they are a reflection of a shift in our society.  A shift for the better.  In a world with characters like Sheldon Cooper, being autistic is a bit like being American or English or Spanish.  It’s like a citizenship.  It’s not automatically a disease.  And it doesn’t mean you’re crazy.  But it does mean that sometimes you run into people who don’t speak your language, and that’s when the chaos starts.

And it turns out the humour lies in that chaos.  Rather than reject it on the grounds that it’s ‘offensive’, why not embrace the change in perspective?  Not everyone is going to go out and read a book about the reality of a neurological condition.  But whole nations will watch a popular extremist television programme.  Why not let the world peek into our lives in whatever way they can, until before anyone realises what’s happened, we have a society that accepts these diagnoses without judgment?  Why not accept ourselves?

In 1991, watching that film scene while consumed with unjustified shame, I could not have predicted how far we would have come in 22 years.  Perhaps the medical system still hasn’t improved much, but when I see these ‘outrageous’ TV shows that never would have been allowed when I was a child, back in the days when Tourette’s was a dirty word, it does leave me wondering: where will we be in 2024?

Hopefully, somewhere good.

]]> http://conditionalpublications.com/2012/10/17/weve-come-a-long-way-baby/feed/ 2 http://conditionalpublications.com/2012/10/10/system-has-to-change/ http://conditionalpublications.com/2012/10/10/system-has-to-change/#comments Wed, 10 Oct 2012 09:13:58 +0000 Vrinda Pendred http://conditionalpublications.com/?p=1741 Read More]]> How many parents out there can relate to this?  The following is a genuine complaint letter written by a parent to a hospital in connection with desperate attempts to get in-school support for a child. All names have been changed.

Dear Sirs

I wish to make a formal complaint about the lack of service my son has received from the Child Development Centre.

We have been struggling to get some form of medical intervention for our son John for the last two years. We initially spoke to the GP, who advised we would need to go through the school, who would make the appropriate referrals. Nothing happened with John’s previous school and his difficulties continued not to be addressed, while John’s self-esteem plummeted and he was branded ‘naughty’, despite a long-running family history of neurological conditions such as ADHD and Autism.

We switched his school in late 2011 and finally referrals were made, following a three-day exclusion from school in July 2012 when John was only six years old. We were eventually offered an appointment with Dr X at the Child Development Centre for 9am on 17th September.

On Friday, 31st August, we received a letter after work stating that this appointment had been cancelled and rearranged for 12pm on Wednesday, 5th September. I called on Monday, 3rd September and spoke to the receptionist, Mary, at that time to advise that this appointment was impossible for us because:

1) My husband and I only had 2 days to provide our respective employers with notice that we would need to take time off work, which is not allowed by either of our workplaces (we are required to provide at least a week’s notice for time off)

2) I work in London, and the appointment time meant I would need to take a whole day off work to make the appointment, which would particularly not be acceptable at my office with only 2 days’ notice – not to mention it would eat up my remaining 2 days of holiday time for the year, which inevitably will need to be used for other school events, and would need to be used if John had another incident and required home time during the term

3) My husband works in a care home and to book holiday there requires shifting the schedules of every other worker there

4) To top it off, 5th September was our son’s very first day back at school with a brand new teacher in a new year – bearing in mind that his difficulties surround school, it would be unacceptable to take John out of school on the first day

We were then offered an appointment for 9th October at 10am. I received a voicemail on my mobile phone at 5.08pm on 8th October to notify us that the appointment had been cancelled for the outrageous reason that, after four weeks, Dr X only just realised the appointment time allotted was not long enough for an initial consultation – Dr X wants to see John for an hour but only a half hour was booked into the diary.

There are not words for how unacceptable this is – particularly bearing in mind that one of the things my son is being assessed for is organisational skills! Is the irony lost on everyone there?

I called and spoke to Mary at 9am today to get this dealt with. I was told I would be telephoned back in the next two hours. I had to call back at 12.30pm to find out what was happening. I was told a manager would need to speak to me, which I agreed I wanted. I was called again by Mary around 1.30pm, being offered an appointment time this Thursday at 12pm.

Now, we have been here before. I explained for perhaps the fourth time that we cannot make such an appointment time, particularly with 2 days’ notice. When I explained again that this is the second time the appointment has been cancelled, I was told that no, it was the first because on the first occasion, apparently the notes had been taken down as ‘cancelled by the parent’. No – I turned down the unacceptable offer of an appointment that was made to replace another appointment that Dr X cancelled. I, the parent, never cancelled our initial appointment. (This was later agreed upon with Sarah, in total contradiction of what Mary told me).

I was also told this new 12pm appointment time is after Dr X finishes her clinic, i.e. after-hours. I said we need the appointment in the morning and was told Dr X only starts the appointments at 10am. If I began my work day at 10am, I would have simply called yesterday to let the parent know that the appointment had to be moved a half-hour earlier and I would have come into work early, because it would be my own fault for not bothering to check the diary in the last 4 weeks and spot the problem. I would also bend over backwards to make up for the mistake. I’ve been told apparently Dr X is going out of her way for us – but this is not true if I’ve stated so many times that we cannot do a 12pm appointment and no one will offer us a morning slot.

Mary rang me again to say the only appointment being offered was 12pm and Dr X will not see us before 10am. I work from 7.45am to 5.30pm each day – I have little sympathy for a doctor who cannot be more flexible in order to correct her own mistake. Furthermore, I am appalled at the way Mary asked me to confirm if I was rejecting the newly offered appointment time, in a way that suggested I’m the one being difficult when I have explained time and time again why we cannot have that appointment time, and after we have been treated so disgracefully for the last two months.

Mary repeatedly said I would need to speak to a manager and offered to have the manager call me directly. However, this took hours to actually happen. I asked how to make a formal complaint and was told again that I would need to ask the manager. Mary even acknowledged that she had just spoken to the manager herself, and yet the manager was not available to speak to me. I can’t help but feel I was fobbed off since 9am by one person after another. Mary also insisted that she could not tell me how to make a complaint. She then told me that I was being unfair to her by being so angry when none of this was her fault (despite the fact that when I did speak to the manager, Sarah, I was told it was the fault of the person who made the original appointment…who happens to be Mary).

I worked as a receptionist for years, and if I had ever taken a call from someone in my position who was as (rightfully) upset as I am, I would have had someone in charge speak to the caller hours ago. I would have actually tried to find a solution to the problem.

The icing on the cake is that at the end of the conversation, Mary simply talked over me to say she was going and hung up the phone on me! (Sarah said Mary had a different angle on the conversation – I’m not surprised.)

I was later finally telephoned by Sarah at the Hospital and told:

1) The diary mishap is not the doctor’s fault, it’s an administrative error (despite Mary in the morning telling me she only found out about it herself this morning and it was down to the doctor).

2) That contrary to my suggestion, administration does not represent the doctor in any way and you should not be viewed as a team the way that at my office, if one member of staff made such a mistake, it would damage the image of the whole company. I would like you to understand that I don’t care who is ultimately to blame for this situation – you are all incriminated in it and no one has handled this properly.

3) That the doctor would not have known about the appointment time issue because ‘it doesn’t work like that; the doctors don’t regularly check their schedules’. It goes without saying that there is absolutely no excuse for this, and I am shocked at the admission of such irresponsibility.

4) That ‘now that we know the reason you can’t make an afternoon appointment, we can try to arrange something else’, despite me telling Mary the reasons we could not make these appointment times over and over and over again, beginning with our original conversation in September.

Sarah also at last gave me the address to write to with a formal complaint. It was as simple as an address. How was Mary unable to provide me with this information?

For all you know, by this point John has been thrown out of school. You have no idea what’s been happening with him, your system is chaos, and it has been made abundantly clear that no one there actually cares about my child’s wellbeing. I don’t know what we’re supposed to do to get John the support he needs, short of winning the lottery and quitting my job to teach him myself, which is clearly not happening any time soon. I don’t know what I pay my taxes for when I’ve been fighting for 2 years to get John even this far in the system.

The most frustrating thing is that this complaint is effectively worthless, because who do you actually answer to? There is no direct organisation to complain to, short of writing to my MP and contacting the newspapers (which I’m probably going to do) – what does it matter to you if I’m this upset? At my company, if we made a huge mistake and the client called up to complain about it, if we fobbed them off for hours, denied culpability, refused to comply with the client’s needs even though we could physically make arrangements to comply, refused to let someone in charge speak to them to deal with the situation and then hung up on them, we would lose money, our reputation would be tarnished and the company would suffer. We would never get away with such practice. Why is it then somehow okay for the NHS to behave this way, regarding our children?

If anyone has the audacity to wonder why I’m so angry, or suggest that I shouldn’t be, as it was suggested by Mary on the phone today, I would ask you all to remember that it is a SIX-YEAR-OLD who loses out in this, and that is 100% your fault. Child Development, indeed. I cannot believe my child’s future is in the hands of such a shambolic impersonal operation, as if it is somehow representative of stability and healthy interpersonal skills.

Yours faithfully

Distressed Parent

]]> http://conditionalpublications.com/2012/10/10/system-has-to-change/feed/ 1 http://conditionalpublications.com/2012/09/01/conditional-publications-gets-a-makeover/ http://conditionalpublications.com/2012/09/01/conditional-publications-gets-a-makeover/#comments Sat, 01 Sep 2012 13:24:16 +0000 Vrinda Pendred http://conditionalpublications.com/?p=1264 We’ve redesigned the website and we think it looks much snazzier.  We hope you like it as much as we do, but if you have any suggestions,  we’re happy to hear from you.

My earliest memory of being told that famous quote (the one known worldwide to all young ticcers as they grow and their Tourette’s becomes more noticeable) – “STOP DOING THAT” – was by my Mum and my Nan in the kitchen on that lovely sunny day in the mid-1970s.

Everyone had longer hair then,  and even though I was only 5 or 6 at the time, I can still remember sitting on the counter, tilting my head back and looking toward the ceiling so the longer hair at the back would touch the back of my neck and the middle of my shoulders.  I really liked that feeling and for some reason wanted to do it again and again and again.  It was summer and I had my shirt off and it felt lovely on my bare back.  It seemed a really big deal to my Mum and my Nan, though, and they were discussing whether I needed a haircut – as if it would stop this new bad habit!

Then over time I’d do it at the family dinner table and got slapped on the wrist for doing it so much.  Then I did it at school and forever after, as well as other things such as constantly blinking and sniffing.  And yes, forever after I also got shouted at to “STOP DOING THAT”, especially when in the company of my parents’ friends or other family members.

In school, I never took part in things with the other kids and used to stand on my own in the playground at dinnertime in my own little fantasy world, staring at the clouds, trying to make friendly shapes out of them and wishing for home time to hurry up.

Then came the various noises – not words, but grunts and throaty stuff, and even louder and longer constant sniffing.  My most painful and prominent tic was rolling my eyes so much that they strained, and shrugging my shoulders uncontrollably.  I can remember being in the bathroom and being frozen solid, trying to make a certain sound with my throat by breathing in air (as if taking my last breath).  I couldn’t move until I’d done it.

I was pretty poorly as a child and my bronchitis, which I had suffered with for a long time, had also become bad.   I was spending more and more time away from school because I was quite ill.  The simplest common cold or virus went straight to my chest and I’d end up wheezing and spluttering for weeks at a time.  Maybe people thought the other noises were associated as well and blamed it all on the bronchitis?  I was on all sorts of medicine and had to use a couple different inhalers, but I can always remember there being more and more tablets that, for some reason, I only took at home.

I went through the next few years coming home and just wanting to sleep.  As soon as I got through the door, when I was about 12 or 13, my mum shouted at me to stop sniffing.  “Don’t your teachers say anything about that?”

Other things started to happen to me.  I used to pick up my dinner plate  from the kitchen, but couldn’t walk through the door until the two imaginary firework circles inside my head were going in the same direction.  You know how when you have ‘sparklers’ you hold them in the dark, move them around in circles, and on some cameras it comes out as a funny orange circle?   Well, that was now in my head and stopping me from doing things unless they were both going in the same direction, and sometimes it would be hard to make them do that.  It was actually such a strong impulse that I thought this part of me was normal, and didn’t everyone have to make the circles move at times?  It wasn’t until my final diagnosis that I discovered they didn’t.

I felt so ashamed about my twitching – so utterly, utterly ashamed.  I’d always shy away if it was mentioned or ignore the issue, or just run.  I could never talk to my friends about it and certainly never spoke to girls – at all!  Adolescence was the worst time.  The name-calling started and I found myself making up stupid excuses to explain why I twitched.  I’d say I was in a car crash and had an operation and it made me like this, so it wasn’t my fault, or other such stupid stuff.  I’d forget about the noises, or if I caught someone looking at me, I’d reverse them into a type of cough, which, due to the bronchitis, I seemed to get away with.  I became used to camouflaging my tics, and still do it to this day.

In 1989, when I was 18, Johnny Davidson from Scotland became the first person with Tourette’s ever to be featured on British TV, in a prime time documentary.  Coincidentally, it was on at a time when a lot of my friends were at my house for the evening.  I’d never heard of this Tourette’s word before, and probably couldn’t even pronounce it properly.  My friends were all laughing and hooting at the things he was doing and the noises he was making, and the swear words.  I remember one of my friends saying to me, “Hey Gal, that’s what you do,” and a few of them laughing at me.  Then my Mum came into the room when Johnny was eating with his family and had a spitting tic.  My Mum said, “That’s nothing, Garry was worse than that when he was a kid.”  Funnily enough, it still was never mentioned to me by anyone – not my family, not my friends, nobody – and was left like that for years.  And I still have not mentioned it to them now.

Years later, I looked at a few websites and started reading up on Tourette’s, so much that I once again began to obsess about it and couldn’t get it out of my mind.  I kept it like it was my dirty little secret.  Then I finally went to my doctor to see what I needed to do and where to go.  I’d read all I could about a TS diagnosis and was sure I had it, but was worried that they would say no, it was something else.

My doctor seemed completely fine about it and said he had a friend who was a neurologist and dealt with Tourette’s Syndrome on a daily basis.  Things then became confusing for me.  I had what I had suspected for a long time, but should I generally tell people or not?  The tics had actually faded with age, and everyone knew me as who I was, so why should I tell them something now that may upset them, or start the ridiculing again?  And I worried that with meeting new people, there is such a huge stigma attached to Tourette’s, they would just assume the worse about me.

I discovered social networking and started to use Facebook a lot.  I even found there were groups of people with TS openly talking about the subject on there, so one night I joined an American-based TS group and started to open up for the first time in my life.  It was nice, as I didn’t know any of these people or have to talk to them face-to-face, and I soon felt relaxed, as their stories and problems either outshone mine or were the same.  Very slowly, I also started to tell my closest friends at work, those whom I could trust, to gauge the reaction I would get.   Some said they’d always known I had a twitch but that was just me, and no I was wrong, I didn’t have TS, it must be a mistake.  Others I could never tell, as the subject would be just too outrageous in the testosterone-fuelled and piss-taking environment the stresses of my job create.  So for me, I have always been happy not to tell unless asked, and then scrutinize and check, then check again who I was going to ‘come out’ to.

More recently, and after talking to many people online with TS, I began to get invitations to meet up with other ticcers, but I always put it off.  I just couldn’t do it.  I was fine to talk about this openly in written form, but to someone else face to face!  What if someone at work found out, or a member of my family?  Part of me still had this underground ashamedness of it all that I felt as a child.

Now this will sound a bit crazy but a few people that I was talking to online back then almost became like celebrities to me every night.  Wow, they were real life ticcers, just like Pete Bennett, not an e-mailed conversation from halfway around the world or a newbie like me.  They were in my own city and living with it and telling me I could also, and to get myself out and meet with people.  But I didn’t.  I still put it off and off and off again, until November 2009 when I jumped on the train and went to Victoria Station in London to meet my online TS mentor and very first other person I’d ever meet with Tourette’s Syndrome.

We met in a pub and then went across the street to meet up with several other people and to spend the afternoon and evening all together.  It was crazy, I just wanted to take notes and ask a hundred questions.  These guys had all known each other from before, some for years even.  My initial reaction was that I felt like a fraud; it was obvious that TS affected people in many different ways as far as tics were displayed and some were much more advanced than me in this field.  I was suppressing my tics still for some reason, probably as they were still strangers to me really and new people.  I was scared and felt like I wasn’t part of this group really as my tics were not as bad as some and, like most of the medical information I had read stated, TS can ease over time and obviously had for me.  I felt really guilty because of that.

After sitting and talking to people I realised that I was the same, I was very much part of this thing and began to really enjoy myself.  What was the worry, why had I been so scared to talk about Tourette’s in the first place, then scared to meet up with people who were basically more of an expert about it than any Doctor, or book I had read?  These were real life people now sitting and having a beer with me, who had experienced exactly the same as me throughout their lives.  The connection was unbelievable and also very emotional for me, so much that after a few hours I made my excuses and left.

I cried on the way home, like men do in Hollywood films, just wet eyes and a solitary tear on one cheek.

I had been accepted and I was now out of the TS closet.  Over the next week I told several people that I had Tourette’s.  I even found myself bragging about it in some circles.

Since then, I have told more and more people and met up with my friends even more, some individually and some as a group.  To me they are not just friends, though; they are family I never knew I had.  Just like if I was adopted as a child and then met up with my real family years and years later  – “This is your sister, this is your uncle, this is your older brother.”  We have so much of the obvious in common, it’s remarkable.  So thank you, ladies and gents, for kicking me up the backside and dragging me out of my shell.

Today, I am the guy who is still apprehensive about telling people I have TS straight away, but I like to tease them.  I wear a Tourette’s badge on my tie at work that is large enough for people to need to ask what the hell it is, and even when in conversation and I suddenly interrupt someone I will apologise and blame it on my ADHD, or if I am being told a story like I was today and got bored after ten seconds, I will tell them to hurry up as I’ll be walking away in two seconds.  Then they come back and ask what I meant and I tell them the whole story, and of course they say, “But you don’t swear and shout….”

So this is my story and this is me now today.  A tall good-looking guy who likes a drink and a wink, with a major neurological comorbid disorder called Tourette’s Syndrome.

I finally made friends with it : )

FATHER & SON: A GAME & A BATTLE WITH PARKINSON’S 

By: Gary Keating 

I have lifelong dyspraxia and a Masters Degree too.  I think I was born to be an extrovert, but finally became an introvert due to all the hostility I have suffered from others due to my Dyspraxia and my ADHD traits.  I don’t like people to watch me doing anything, so I stay away from them. I could never learn to ride a bike, to sew, to knit.  I still confuse my left and right at age 41.

Funny thing: I went to a writers’ conference and pitched my novel to a publisher and an agent who happened to be there.  They said I could send them the work (easier to say that than reject me to my face, right?) so I sent it to them.  What is funny to me is that I also sent the work to four other publishers.  Well, three out of those four publishers offered me a contract on my novel!  But the people I actually met and pitched to rejected it.  I can’t help but feel meeting them in person actually influenced them to reject me, when three out of four publishers who hadn’t met me wanted my book!

It seems that my dyspraxia is always that obvious and annoying to people I meet.  That’s why I now just stay home with my family and write, instead of knocking my head against a brick wall trying to be accepted.  I’m 41, so it’s taken me a long time to face this.  The fact that others can hold down a job at all is amazing to me.  I found that employers rarely accepted my disabilities and were always “letting me go”, despite me being capable in so many other ways.

My official diagnoses are OCD and bipolar II disorder.  I guess what I’d like to demonstrate here is how much more these conditions are than what you typically read in the books, and how many other problems and oddities can come along with mental disorders.First, the OCD.  It developed when I was just a child.  I was afraid that by making mistakes or feeling the “wrong” emotions, I would harm my parents.  I would say magic words and draw pictures of my family which I believed would keep everybody safe.  I also remember seeing and hearing strange things as a child, from a talking flower to a nonexistent bobcat to a bedroom full of lizards.  This continued for some years (through elementary school) but is no longer such a problem.

In elementary school I moved to a new town and the kids at the school were really mean.  I got made fun of for the effects of what I now know to have been mental disorders.  At the time, I thought I was just a weird kid who deserved it.  When I was 12 years old, the OCD became an even bigger part of my life.  I still feared harming my parents and other loved ones, but now I would seek reassurance from them rather than drawing “magical” pictures.  I started to write lists of things I needed to do — an innocent habit at first, and one that even helped me at the time.  But it soon grew into an obsession.  The lists were never detailed enough, never in the right order; you get the idea.  I would also brush the carpet in my room (and sometimes the rest of the house) by hand whenever it got “messed up” (all the threads not facing the same direction).

Soon OCD was my life.  My family moved again and I became obsessed with keeping my stuff packed in organized boxes.  I would pack and repack but it was never right.  So I got rid of things.  Tons of things.  I wasn’t “allowed” by my OCD to decorate my room or have normal things like extra pillows.  Only the bare minimum was acceptable.  I soon went from being a straight-A student to nearly failing in school.  Teachers and parents said it was because I was “lazy”.  I turned to self-injury (something I had been experimenting with since early childhood) on a more regular basis.

In adulthood, I developed new obsessions — I owed someone money and was incurring tons of interest; I had been in a car accident without knowing it; I had run somebody over in my car.  I developed the classic “bump-checking” compulsion, as well as constantly worrying and checking about bank accounts I had never opened, or car accidents that never happened.  My biggest obsession was (and still is) a fear of developing amnesia.  The related compulsion is arranging things so that certain things touch and others don’t and everything is perfectly categorized — an impossible standard, and yet I can’t stop.

I also developed avoidance as an adult.  I would avoid school because it was simply too scary.  I had a panic attack at work one time — partly the result of my OCD and its inability to tolerate chaos — and became terrified of crowds.  I have only had one panic attack since, over the arrangement of items in my room.

Bipolar is also tough to live with, and for me it enhances the OCD.  Manic: compulsive.  Depressed: obsessive.  I think one way to explain it is I’m like a bottle of champagne that alternately bubbles and goes flat.  Or, like a conducting material when manic (and I see and feel and hear all the beauty in the world and want to capture it forever) and an insulator when depressed (and I feel cut off from everything).  Bipolar messes with my (almost nonexistent, but getting better) sleeping and eating schedules, which is rough.

I have other problems too.  I have huge problems with executive functioning — the ability to plan and carry out steps.  I have trouble making simple decisions and doing simple things like dressing and preparing meals.  I have synesthesia, which is not all bad and in fact mostly good, but sometimes it feeds my OCD.  I have trouble communicating verbally because I think in pictures and symbols and sometimes loosely-connected words, not in linear sequences of words.  It’s easier for me to communicate through poetry, math, or music.  I have tics, which are related to “bad” OCD thoughts — some of them are words and some are muscle-tension related.  I have also had problems with coordination, ever since I was a child.

Well…in conclusion, I think the main problem with this essay is it shows my compulsions but not the intense pain behind them.  OCD is a mentally painful and taxing condition.  I hate doing all the things I “have” to do as a result of OCD, but I can’t stop, or at least it will take years of intensive therapy for me to stop.  If it’s enjoyable, it’s probably not OCD.  If it feels like you are being driven to do something you really know you don’t want to do, it probably is OCD.  In this essay, I also wanted to show that the problems of a person with a mental condition go far beyond the diagnostic criteria for that condition.  Hopefully I have succeeded somewhat.

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I have both epilepsy and Arnold Chiari malformation type 1.  The epilepsy is controlled by Tegretol.  I have a tremendous amount of pain from the ACM.

I get headaches all the time, neck and back pain.  I used to like drawing but I shake too much from the pain.  I can’t lift anything over 10 pounds.  I was upset with knowing I have the ACM, but have gotten used to it now.  I used to like running when I was younger; I just walk now.