‘Rick’

My Story

Every moment, I know its going to happen.  The other shoe is going to drop and I will die.  From my own hand, maybe, because it will be so awful. I will not be able to handle it.

It’s morning.  The worst for me.  I’ve been up most of the night tossing and turning.  There is no such thing as healthy sleep.  I try to get out of bed, and I can’t because I am being crushed by my own thoughts.  Thoughts of my hell day flash through the diseased filters of my mind.  Welcome to me.

To understand this, or to understand depression in general, you ‘un-sick’ people out there need to get into the mood…and you must be willing to ‘feel’ …even though – actually, especially if – it hurts.

What is the worst thing that ever happened to you ?  Did someone close to you die ?  Were you in a terrible accident? Did someone you love dump you for another?  Did a close friend betray you?  How did you feel when you first learned of death and/or betrayal?  Did you feel lightheaded and confused for a moment?  Then did the train hit you?  As the initial days wore on, did you feel ‘better’, or did your gut remain tight and your breath short?  Did vivid images attack you – e.g. how the person died and what he or she felt?  Or did you picture your love in bed with another?  Or did you picture your best friend having good times with others, but not you?

You must feel those feelings here – as though it just happened. Do it. Not just for a moment.  Rather, close your eyes and hold the thoughts with all your might.  Go deeper – what is the morgue going to do to the loved one that died?  What acts is your love doing with the ‘other’ person?  What are all the places and events going to be that you will never enjoy with your friend?  Keep your eyes closed and force the images to stay in your mind.  Make the images and feelings go round and round – like a carousel.  And feel the blackness.  Feel the short breath.

Don’t open your eyes: I can’t – even with my eyes open.  Those harsh, tortuous feelings never leave.  Rather, they attack like an onslaught – it’s like right before you thrown up – the sick feeling, the acid in your stomach.   But the feeling stays – you can’t throw up for relief.  Rather, the feelings pull you down, and down.  And it gets darker and darker.  Keep your eyes closed – try to open them, but do not let yourself open them.  Feel the despair.  Feel yourself unable to move.  Feel yourself cry.  And feel what it would feel like to believe it will never go away.

Now, imagine having these symptoms arise and fall at whim.  Imagine them holding on and terrorizing you for hours, or even days.  Imagine you have absolutely no control over them.  Imagine that you have to function at work, at school, among friends, at family functions – sometimes while your gut is coming out.  Imagine that they appear to be with you for the rest of your life.

Imagine the feelings never going away.  Unlike other post-catastrophe mental states, there is never the occasional or sporadic relief that the mind creates for self survival in emergencies.  Imagine sometimes being in the dark hole every waking minute.  Imagine that you cannot even see straight – like you are partially drunk.  Imagine that those feelings mentioned previously never go away – those from the death, the heartbreak, the betrayal.  Rather, they ebb and flow all day long, or suddenly, out of nowhere, they attack without notice.

Can you feel it, even for a moment?  If so, welcome to major depression.  Lucky you, though.  You can put this writing down and leave.  I cannot.

What is this called?  Some tell me I am a ‘major depressive’.  Some say I am bipolar, because I have incidents, though not frequently, where I am acting in a sort of manic stage – very outward, intense, wired, like on speed, doing things I otherwise might not – and then I crash.  But the lows far exceed the highs.  Some say I am OCD – I can’t let things go.  I’ll do things over and over and over – to be perfect and lose the forest  through the trees.  I also have panic attacks.  Sometimes I’m unable to get off the floor, even to do something as simple as take a shower.  Often I just want to stay in my house and not talk to anyone.  To sleep.  That is my savior. Sometimes weekends at a time.  What the fuck am I?  Does it matter?  Maybe for insurance purposes.  Maybe for the meds to be prescribed?  The many meds.  I am an addict.

Writing this is kinda good and kinda sucks.  It is good because others who suffer will read it, and perhaps this will help them know they are not alone.  It sucks because it puts things into words and reminds me of what I am – fucked up.  If I don’t have my six little pills every day, bad things happen.  Actually, bad things happen even if I take the pills, but without them, I get much worse.  But is it the addiction to the drugs which makes it worse – i.e. without them I freak?  Or, do I truly suffer from chemical imbalances?  I am not willing to try life without them.  Before I began to take them, I almost died.  For me, it works like this: survival = drugs.  No drugs = death.  I

n my sick head, I am so afraid of the impending disaster, and that it will cause my death, I am unable to think that someday I will die anyway, so I might as well enjoy life while I can.  That, however, would be a healthy thought – I am unable to accept it, or believe it.  Because it is bullshit – failure and disaster are my world.  Joy is for everyone else.  They are all so lucky, I think, because at least they don’t suffer from my hell – that which I cannot get away from.

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I am so afraid to stop the motion. I am so afraid to lie down. I am terrified of my mind running free for hours as I lie in the dark praying for sleep to come. I feel like I have live wires running all through my arms and legs. I experience a roller coaster of emotions. My stomach actually feels like I am riding on one. I can’t breathe. I can’t sleep. At times, I can’t eat. My head swims. I am underwater. I am drowning. I try to tread. All I want is escape.

Getting through the day seems insurmountable. All this I try to hide from my seven-year-old daughter. I am a single mother. I am broke. I want to spend. I want to consume. I want to run away. Nothing is ever enough. I am impulsive. I do not think my decisions through. I dyed my hair bright red, which  seemed like a good idea at the time. Now, I hate it. At least I’ve come this far – the only damage I have done to myself this time is cosmetic, not life-threatening.

My body betrays me. It jerks and twitches and clenches up my insides. I have a permanent headache from clenching my jaws too tightly.my neck throbs with tension. My head beats like a drum. I feel empty inside and raw. There is nothing that can fill me up. I try to lay down.my body dances like a hideous puppet on strings. Waves of panic seize my stomach. Again I cannot catch my breath.

At these times, all the myriad medications I am on mean nothing. I become completely immune. This too shall pass, I pray. It usually does. The good times in between just seem to be getting shorter. I pray those close to me will not realize how close to some precarious edge I am. I pray I am not too out of control, too hyped up, too offensive. I pray God will make the pain stop.

I try to exercise for relief. I try to take extra medication. I try not to eat sugar or drink caffeine. I try to isolate myself as much as possible and not lose my already compromised mind. My eyes are always on the verge of overflowing.

Before treatment and therapy this would have led to illegal drugs, alcohol, and men. Searching for anything to fill the void. I am stronger than that now. And at least that is one thing I can be proud of.

I saw my therapist today. I read to her from this journal. Just reading what I have written makes me cry. I thought Bipolar would be a thing that could be controlled – that with treatment and medication I could be normal. Now I know this is not true. Bipolar is like a beast. Sometimes it sleeps, other times it tries to destroy you. No matter how far or fast I run, no matter where I hide, it comes for me.

All the coping mechanisms – all the tidy tools they try to arm you with – those are never enough. When it comes to the major battles, you are naked and defenseless. You are nothing. At times like these I have no dreams, no hopes, no tomorrows.

I hate trying to wake up the next day. I feel like a zombie from all the meds I had to take just to be able to get a few hours of sleep. The monkey is not always on my back at this point, but he is still in the room. I have run out of household chores. I am scared of being idle. Driving through the streets, listening to songs that move me as loud as the speakers will go – this helps me. This can bring a smile. I sing at the top of my voice and believe some of the sickness trapped inside is expelled.

Even as my body slows down – that internal humming growing fainter – the throbbing in my head remains. I am so furious that at times like this, prescribed drugs are the only things that get me off this crazy ride. I’ve got to be doped up just to cope, and boy does it take a lot to get me there. Some days I take so many pills I lose count. I can’t remember what, how many, when. I will do just about anything to get the monkey off my back. Seems like a vicious cycle that defeats the whole purpose – the purpose being a life of clarity, sanity, participation.

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I am writing about my 16-year-old son who struggles with cyclothymia and Asperger’s. He does very well as long as he is properly medicated, although he continues to have anxiety. His biggest issue is with medication compliance because he does not like the sexual side effects. He is not sexually active yet but I understand that, as a young man, he wants to know that his stuff works.

Without meds, he becomes paranoid, then obsessive – particularly about food. About once a year he becomes a vegetarian. He perseverates on communism, socialism, fish, and Kurt Cobain, among other things. In the past, this has hurt him socially as it tends to alienate him from friends and sometimes family. He has also struggled with sexuality when manic, unknowingly making himself a target for child predators on the internet. I am forever having to rescue him. He also has a consistent level of gradiosity, which could stem from both mania and Asperger’s.

He has a long-term girlfriend, which really helps keep him on track with his meds because she has seen him when he’s off and doesn’t like it. But I worry about his future even with her (they are already discussing marriage) because I know that she can’t truly understand what she’s dealing with until she has lived with it. And they are so young.

When manic, he has turned to cutting, marijuana, alcohol and homosexuality, as well as extreme political groups.

He is a fascinating, intelligent, talented, good-looking, kind-hearted and wonderful person and I resent the mental illness’ interference in his life.

~ Concerned Mom

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By Nadja

NOTE: This story contains some depictions / references to violence / sex that some readers may find unsettling.  However, we do not believe in censoring anyone’s life story, so we have included it in full.  Please do not read if you are easily upset by such things.

Regardless of whether you believe in “Nature” or “Nurture”, I really didn’t have a chance. My poor, sweet Grandpa Ralph had OCD, except back then nobody knew what it was so they thought he was just doing weird things because he was drunk. The truth is, he was drunk because he couldn’t stop himself from doing weird things. I know this all too well. I spent my teens and early 20s drunk because alcohol is really good at drowning your obsessions and compulsions.
How did I get to this point?

I had my first panic attack at age 7. My Grandpa Ralph had just died and I was in the tub with my biological dad watching me. I. Flipped. Out. I had no idea what was wrong. I just knew that I wanted out NOW and I wanted my mom NOW and I wanted my dad gone NOW.

I discovered my dad was a child molester. He never touched me. With me he was just a watcher. With my siblings, only they know.  Our father was a nightmare of epic proportions. He was mean, heartless, soulless. He would scream at my mom and physically intimidate her. I have vivid memories of him chasing her around the kitchen tossing knives. One day he raped her right in our house with me there. I lived in constant fear that one day he would kill her. There were only two men who had ever made me feel safe.  Now one was dead and the other turned out to be a pedophile.

Enter my step-dad. He was my mom’s best friend at the time and he gave her the courage to leave and a safe place to stay. Even to this day he is the one person my biological father fears, but I’m not sure why. Eventually love ensued, they got married, and I got an amazing dad. I need you all to know that, regardless of all the other things I will tell you about him: my step-dad was a great dad and I will forever be grateful to have him in my life.

,Unfortunately, his brother was murdered and my step-dad was never quite the same. He became angry, agitated, and drank way too much. He tried to get help once, but it didn’t work. He just became meaner and more violent. My mom and I tiptoed around our house like mice avoiding a trap. You never knew what would set him off and send him into a terrifying blind rage. He threw things, he broke things, he punched through walls and doors over the most minor of offenses, and we were back to me seeing my mom get hit. One day when it was especially bad I went on autopilot, got in my car, and started the engine. My mom came flying out of the house screaming with my step-dad in pursuit, holding a gun. That was the single most terrifying moment of my life. Everything that happened after that point is a complete blur.

Now I’m an adult. I have my own house, my own marriage, and my own kids. I felt so scared and out of control for my entire life that I’m now obsessed with it. There are dangers, germs, and bad people out in the world that could hurt my babies! My husband could die at work! If I keep them trapped in this little house where I can control EVERYTHING maybe they’ll be safe and I’ll feel sane!

Unfortunately, all I’m doing is suffocating them, making my children miss out on experiences, my husband go mad, family members resent me, and friends leave me. I’m aware of what I’m doing but I can’t stop yet.

Help will come, just please, I beg of you, be patient just a little bit longer.

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by Maria Tumnus

I was working in an office for three years and I couldn’t hide anymore. They left me alone for a while, as I came from a different culture (Romania), my English wasn’t that good at the beginning and I didn’t want to speak with grammatical mistakes. I thought they appreciated my discreet personality and respected my non-interference in other people’s businesses. But as my English improved, I started to understand more and more, and one of their favourite topics was… me.

“She sits at her desk all day; she’s so desperate to impress”, “She’s so rude!”, “She should show more respect”, “She is clever but she thinks she’s superior to everybody” were just a sample of the characterizations I got on a daily basis. Why do they think all those things? What am I doing wrong? I wondered.  I told them from the very beginning that I was shy, introverted and un-sociable. So why after three years were they still surprised?

When I had a conversation with my boss, I explained that this was the way I was, I didn’t have anything with anyone.  I apologized for my “odd” behaviour, explaining that it wasn’t intentional and I wasn’t even aware of it. Because I wasn’t confident with my English, I was still struggling to have a spontaneous conversation. Also, I didn’t watch TV and as I was only interested in arts, literature and anthropology, I didn’t know what to talk about.  Half of their subjects didn’t make any sense to me. I didn’t think I was superior.  On the contrary, I knew  my conversation topics were so limited that I preferred to be at my desk working than  in an awaked social situation where I would stay quiet while thinking of something else.

Also,with as I was so preoccupied with trying to speak correctly, I imagined my sentences in my head and revised them to make sure they would come out perfectly, which was why my answers were delayed. As the communication process involved some steps – translating in my head what people were telling me, coming up with an answer, translating it back into English, proof-reading it – it was simply too much for me to process ,so I preferred to avoid interactions altogether. While people were waiting for a reply or a reaction from me, I was failing to deliver it in time. They labelled me as awkward and unapproachable. My mind was set up in work mode and there wasn’t any room for small talk. I also wanted to enjoy the seven-and-a-half hours and a half I spent there, because to me, enjoying work meant understanding what I was doing and improving my performance every day. I didn’t want to impress anyone but myself that I could do it.

As I described myself to my boss, thinking this was only a cultural difference, I didn’t realize I was describing a possible Autistic trait. People’s judgemental attitudes didn’t stop until I resigned and my zero confidence brought me to a chair in front of a counsellor. When she asked me to think about my childhood, I was a bit angry. Why do psychologists think  all your problems start in the childhood? Is she going to apply the Freudian theory on me now? I thought sceptically. I only wanted her to tell me how to behave because obviously something was wrong and I didn’t know what. Why  were people so offended that I didn’t talk about non-work-related topics, I didn’t socialize and I didn’t respond to their humour? Why  did they pity me for being alone when my oneliness was a matter of personal preference? Why did they feel the need to judge me all the time and make fun of me behind my back? And ultimately, why didn’t I have those needs that people called “normal”?

As I was thinking about my childhood, I realized that I have always been a loner. Being clumsy and physically slow as a child, I always struggled to fit in and therefore started to do things I really enjoyed, like painting and reading. I was fine with my own company. Other children used to tease and make fun of me and I never knew how to respond or why they felt the need to do that. Some teachers used to say I was lazy and I didn’t meet my full potential. I used to get punished for my short-term memory problem, as I used to forget simple things that my peers didn’t. Half the time I thought I was sent from another planet and I had no idea what to do to assimilate people’s costumes which didn’t have any logic to me. I was struggling to keep up.

Paradoxically, except for PE classes, I did quite well in school. I was the best in my class at grammar, at 17 I was awarded my first international poetry prize and I always had strong arguments in philosophical debates. After a while I managed to surpass all those difficulties and I metamorphosised in a confident young woman, able to do everything I put my mind to: complete a degree and a Masters, publish books and enjoy life with its unexpected events.

When the psychologist said of I had Dyspraxia and explained briefly what it was, everything made sense to me. The counsellor was right: people’s problems DO start in childhood. I went home and I looked it up on the Internet and finally understood why I couldn’t learn to swim, to ride a bike and to catch a ball, why I have this right and left confusion, why my reactions are delayed regardless the language I speak, and the list could continue with other difficulties I had and still have. I wish I knew before, as my life would have been much easier.

Yet I managed for 33 years, and I think I can manage from now on too.

I just want to tell people that I am completely harmless and I genuinely believe that if we all love ourselves as we are, there would be no envy or negative feelings regarding other people’s differences and lives. If Dyspraxia made me creative and good with words, or it gave me the capacity to see behind appearances without judging and the foolishness to give up everything to follow my dreams, then I am happy I have it. They call it the hidden handicap, but I call it an extraordinary gift.

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I am a 41-year-old woman who was always very quiet in school – so much so that no one would think I had ADD like my brother.

My life was one of being bullied and having emotionally challenged parents.  I was not cuddled much and we never talked about emotions, to the point that, after a 9-month waiting list, a psychologist ended up saying I was emotionally neglected.  Yeah, like I didnt know that myself.

But as I grew older, I slowly gained in confidence and started talking more.  And now the trouble was I talked too much, with associations, metaphors and leaps people sometimes could not follow.   And I found out each of the few people I did call ‘friends’ were either borderline ADD, full ADD/ADHD or bipolar.

I do not get along with ‘normal’ people: I tell them something five times, and still they do not understand what I am saying – including psychiatrist.  I tell my story over and over as well as I can, translating my thoughts to a boxed-in mind.  So much effort and so little result.  In the meantime, I work and listen all day to other people and I understand them so perfectly, including what they are saying in-between the lines.

My first job was at a university as an interviewer.  Then I worked as a journalist, then as a legal assistant, then as a bartender, etc.  Always listening to people.  And they say I am such a good listener.  But they can hardly remember my name.  I dated a guy and found out after one year of dating that he did not know my last name correctly.  If I attend a meeting, the following day people start to explain to me what was said during that meeting.  I say, ‘I was there!  Don’t you remember me?’  They say, ‘No.  Sorry.’

I have ADD, am very HSP, and maybe a bit dyslexic (but only when I speak; not when I write).  Am I highly gifted like someone suggested?  No.  My IQ is only 123 ( I never did homework, due to lack of concentration, though I still managed a Bachelor’s Degree).  I took a course in Photoshop but, after some lessons, could not even find the switch to turn on the computer.  After many instances of hyperventilating  from crying on the toilet, I would start over and over and over again – without help from the teacher because she gave up on me.  Yet who had the exposition at the end of the term?  Me.  So the teacher said, ‘You walk before you crawl.  You’re always either running or standing still.  There is nothing in between.’

But wathever.  I wish I could talk to other people and have them listen to me for a change.  The only people who listen have ADHD.   They give me a headache, are blabbermouths.v I hate it. vBut it is me.

ADD is: many months of burnout, and then all of a sudden I’m writing some cover article.  Everything or nothing.  I am sometimes blocked for months, no movement, I cannot do anything.  Then all of a sudden I am in free flow, typing nonstop.  My thoughts finally find an outlet.  No one I know reads it; it’s online and anonymous people around the world are listening.

And I am a peoples person, yet I cannot get a paid job because they don’t prolong my contract.  ‘You do not fit in the team,” they say.  I don’t know why.  I only know they don’t understand me when I talk, like I speak another language.

Last week I interviewed a dyslectic person for my site.  We talked for an hour on the telephone.  He talked like me: leaps, metaphors, jumping thoughts, playful, looking at things from different angles.  If I speak with non-dyslexics and non-ADHD people, I feel like I need to speak babytalk, go very slowly and not use any metaphors.  I don’t understand why they can hold onto such well paid jobs, because to me, I’m sorry, they are the slow ones, the ‘inside the box’ thinkers.

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by

Robaire Beckwith

Knowing what growing up with Tourette Syndrome was like, and remembering the difficulties with understanding the problems experienced as a child and what caused them, led me to finding ways I could help children with TS and other ‘special’ needs caused by neuro-developmental disorders. There was almost no useful advice or support available and I don’t believe things have moved on much now that I am an adult.

I wanted to find a way I could make a difference and be able to improve awareness, influence professional attitudes, improve diagnosis and subsequent provision and treatment. I determined that the best way to do this was to become a doctor myself and specialise in developmental paediatrics or neurology. I could not only become directly involved in the diagnosis and treatment of TS but also become involved in clinical research. Having TS myself would, I hoped, give me a unique insight and ensure I had some idea of the issues that children with TS and their parents face. I hoped my own ‘disability’ would allow me to connect better with and relate to others who are similarly affected.

After gaining my first degree in biological sciences, I taught for several years in a ‘special school’ as a teaching assistant but eventually found this frustrating, as, although I was helping with educational aspects, I became very aware of the profound lack of understanding about Tourette Syndrome among both health and educational professionals. The misconceptions of the medical profession and very poor advice given to parents and their children was something I found truly astounding and worrying.

I was also aware that I had little opportunity to progress and qualify as a teacher. I had applied for post-graduate teacher training during my time as a special-needs teaching assistant but, as I expected, I was not even given an interview.

I did eventually get a place at medical school, but encountered much unexpected discrimination, most of which took place at the very end of four years of extremely hard work, including facing the challenges that studying medicine with a disorder like Tourette Syndrome presented. The manner in which I was treated by staff of the medical school came as a big shock and I was ill-equipped to deal with it. I was subjected to what seemed like a concerted effort by my medical school to deter me from completing my training, using every means possible to question my abilities, undermine my self-belief and even suggest I would pose a risk to my patients should I practice.

My experiences with medical training and the prejudice I encountered make up a complex story that I hope to tell fully one day, and it will help explain how, despite all signs being to the contrary throughout my training, I ultimately had to resign myself to hanging up my stethoscope for the last time and abandon a large collection of costly medical textbooks over which I had pored for unimaginable hours, along with the hopes that had driven me forward. I at least have the satisfaction that I was able complete all my clinical training rotations successfully and received good commendations, assessments and much encouragement from the consultants under whom I trained in several hospitals. I had put in long hours on the wards, in theatre and clinics. I found clinical practice immensely rewarding, and I was actually good at it. I knew I had to work a lot harder than most students to get through all the reading and written assessments. Giving presentations was my biggest fear, as I would have to be the focus of attention in a room full of smart and critical students and doctors, but I managed to overcome this and achieved a passable performance, although the stress was often overwhelming. For a while I really thought I would achieve my goal and be able to transcend the difficulties of my condition.

I often feel very disappointed and immeasurably sad that I could not graduate alongside my other classmates and share in the mutual sense of achievement. This is often the true reality of Tourette Syndrome: you know you can do something, but always have to struggle with others not taking you seriously. Sometimes you just resign yourself to believing that however hard you try to prove yourself, it will never be enough. You get used to seeing your friends and classmates progressing through life and effortlessly overcoming obstacles that may stop you in your tracks. However, despite this, I still try to keep some belief in myself and never feel willing to give up. A problem with this disorder is that individuals are often painfully aware of how others see them, but feel they can do little to change those perceptions.

I had spent four years with my fellow medical students going from our first clinical experiences to greater challenges, with excitement and hope for the future. We went through incredible experiences together and gradually developed confidence in ourselves, our clinical abilities and the potential value of our skills to others. I do, however, feel a great sense of satisfaction in that my clinical partner, throughout my years of hospital training, managed to graduate successfully despite having many setbacks and struggling on many occasions. In the end, she finally made it and I’m sure she will be a competent and dedicated doctor.

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I just want people to know that even though it has an awful name, Attention Deficit Hyperactivity Disorder is actually a devastating neurological illness. It’s deeper than it seems.

Sometimes it gets so bad I can’t even think straight or get anything finished. Being restless as an adult in public is not only tiresome, it’s embarrassing -  acting on impulse, saying things and wishing you could take them back. All of these things are tough to live with, not to mention having constant sleeping difficulty.

How about emotional instability, at times saying ‘I love you’ to friends and family like a billion times and other times wanting to punch someone out – being so distracted that you can’t drive a car, finish a Movie, read a long novel or even say a prayer in your head without getting your attention pulled elsewhere.

It’s tough and I just wanted to let people know it’s not the joke everyone thinks it is.

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Acting and theatre specifically have meaning for me. Initially, theatre for me was an escape from TS that held me captive. When I act it leaves me inexplicably, it just goes away, and yet I can use the knowledge and experience of it to convey meaning and that allows acting complete freedom to take off inside me. The disorder switches off when I act or even when I visit a theatre! My ‘disorder’ is defied and replaced by theatre and acting.

Similarly, I believe our modern society is in disorder and everyone seeks meaning and to be set free in some way. We tend to ‘see’ our modern world through and because of television. That so-called real-world is a world that left me behind, or possibly I just attempted to ignore it because of my TS. A greater thing was brought home to bear on my life and this thing ‘theatre’ has been my greatest release.

Theatre also provides me with a real kinship with those involved, including audiences, which is made more real the more ‘modern life’ imposes itself on us all and breaks us apart from one another. For me, giving something back might sound trite, but it is imperative because theatre released me and cures me and I feel the need to convey this healing to stimulate the ‘cures’ in others. Through theatre we can replace what is missing in our modern world. Through theatre we can find our ‘self’ and ‘selves’ together.

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