Marcie’s Story

I was brought up within a loving and stable home, but I often heard phrases like “if the wind changes, you’ll stay like that”. I don’t remember having any facial tics as a child - but then it’s only recently that I’ve become aware of them. (and I have some now) My parents do not remember me having any tics. Although they did live very busy lives running a restaurant (we lived over the top) - and I hardly saw them during term time - they’d be with the customers all evening, until after I’d gone to bed. I do remember some habits - the continual thumb-sucking (until I was 11), the nail and finger biting - often there was hardly any more nail to bite, and they were almost always bleeding. When I ran out of nail, I bit the skin. My mum used to paint all sorts of horrible tasting stuff on, which even tainted all my food, but it never stopped me biting them - I carried on, as terrible as the taste was. I used to pick anything and everything - fingers, toes, nose, ears, eyes. I’d bite and smell things, and rub my fingers on my face, body, hands, feet. Although my parents remember nothing of my habits - I clearly remember being told off for doing them. My sister remembers me having “lots” of “habits”.

I was the “tom-boy” at home - I had no interest in girly things, but played football, war games etc. I sometimes did really crazy things - I remember punching my hand through a window once. I lost a few weeks pocket money for that!

At the age of 12 I became “obsessed” with death - what happened after death, what if I’m buried alive (that was a recurring and distressing thought), what’s it like to be dead etc. At school I was the clown, the one who was always in trouble, the one who did anything for a laugh.

I believed that if I did certain things, a certain number of times, I could prevent some imminent disaster. For instance, I’d have to throw a ball against the wall, and have to catch it 10 times - or a plane might crash the next day. I counted everything, the steps that I took, the stairs I climbed, the cars I passed, anything and everything. I’d hold my breath as I passed people in the street so that I wouldn’t breathe in the air they’d just breathed out. I wouldn’t touch something after others had touched it - I’d use my sleeve to touch the door handle etc. If I knocked my elbow, I would twirl around, and deliberately knock my other elbow. I had to touch things with both hands, so that they both felt right.

At 15, my death obsession worsened, and I became depressed. I would dress in black, and repeatedly play the record “Jesus Christ Superstar”, which made me feel somehow better. I started drinking alcohol - alone at home, and taking it to school. At one time, half a bottle of whisky daily. At my lowest, I no longer wanted to live, and locked myself away in my bedroom with the intention of taking my life. It was my younger sister who then came knocking on my door - and brought me to my senses. (but I didn’t tell her until many years later)

I was the rebel, the loner - I suppose I found adolescence hard. I had friends, but none of them knew the ‘real’ me. (And that’s still the case today)

I started searching for something spiritual, and started attending church. What followed was several years of fervent christian activity and enthusiasm. Perhaps some might call it scrupulosity. Certainly, it became an obsession. I struggled with guilt - I was a “bad” person, and thought terrible thoughts, that I couldn’t dare share with anyone. Now, I know them to be “intrusive thoughts” but then, I thought it was “sin”.

I left home and went to college, and at the age of 19 became depressed and very anxious. I lost a lot of weight in a short time, and again felt life was not worth living. I’d drive around, speeding through country roads - and close my eyes. Incredibly, me and my car (and everyone else) remained intact. I started smoking, and pulled away from church life. I went to my GP and spent the next couple of years on sleeping tablets, anti-depressants and tranquillisers. The doctors dismissed me as “neurotic” - “if you’re like this now - what on earth will you be like when you’re a middle aged woman”, “you’ve just got an overactive mind” etc. In mentioning that word now - I suppose I always was “overactive”. My mind operating at a speed I couldn’t keep up with, from one thought to the next, unable to concentrate for too long, losing interest very quickly, daydreaming constantly.

But slowly, my life got back on track.

I married, had a baby, got divorced. I adored the man that I married - although I knew he didn’t feel the same way. The moment we were married, he changed. I became almost his slave - I was “stupid”, and my only purpose was to serve - around the house, and in bed. I was dragged down and down, until eventually I knew, for my daughter’s sake, that I couldn’t go on. The separation was desperately traumatic, and if it hadn’t been for her - I wouldn’t be here today. My baby grew up into a wonderful little girl - who developed “nervous habits”. By the time she had a diagnosis of mild tourette syndrome, I learned so much about myself, saw so much of myself in my daughter. She is doing very well and appears almost pleased to do things that her mum does!

Now, at the age of 43 - I’m beginning to understand myself. It’s taken a long time, and I’ve still so much to learn. My habits are probably worse than they’ve ever been, I still struggle with low self-esteem, intrusive thoughts and what I call introspection. Not low maybe. I act the fool - put on a big colourful mask. I clown around, muck about, laugh loudly etc at inappropriate times, then feel so embarrassed and stupid. I’m not sure if my movements have increased, or whether it’s simply that I’m more aware of them now. I do have definite, although relatively infrequent and mild tics (movements and noises). I usually do them when no-one else is around - for instance when I move from one room to another. My other movements, those that are less clearly defined as tics, are near constant - and with fingers, feet, legs etc moving at once (and in synchrony - to mental counting or rhythm) I can ‘tic’ (if that’s the word) about 240 times a minute (assuming both hands - all fingers moving individually - are considered one movement) That’s many thousands of times a day. I foresee danger in all situations. My home has fire alarms in all rooms, I have a rope fire escape ready for action, extinguishers etc. I carry mobile phone, alarms, I am fanatical about safety - simply because I see danger everywhere, see the possible consequences in my head. I can’t walk down a road without seeing the lorry crashing into us, get on a train without seeing it derail, get in a lift without imagining it crashing to the ground when the cable breaks. I pick up a knife to lay the table, and see myself falling over whilst carrying it - things I’d rather I didn’t see or think about. I know these thoughts are irrational, I know the risk is low. Most of the time I can block the thoughts, force myself to think of something else.

My self esteem has always been pretty low, and I tend to believe people are thinking I’m an idiot, stupid or whatever. I’m impulsive with money, but procrastinate about everything else.

Now I know what my movements are - I talk about them with others, I have a need to somehow. Maybe that’s a mistake - because people never took much notice of them before, but now, sometimes I feel I’m under a microscope. I’m aware that people are watching me, and they often comment. They do it in fun, in a good-natured way, but it does make me feel very self-conscious. In comparison to the stories of others that I have read, mine is nothing. Our symptoms are so mild as to be un-noticeable by most. Yet, in my life - the way I think about myself, about life, has made a big difference to my life. There are times when I’ve been so low - and I do worry about my child’s future - that she may experience what I did - what it holds for her. I know that maybe I’m in a better position than most to pick up on possibilities.

I have no diagnosis, no treatment - nor is that what I want. Not treatment anyway. Yet, perhaps a diagnosis would help - help to understand why I do what I do, why I am who I am. What would that diagnosis be? It seems I fit the diagnostic criteria for ADHD and OCD, and enough tics for diagnosis of (very mild) TS.

Generally, I’m coping. It’s not all negative. My neurological make-up gives me engergy, drive, ideas, motivation, enthusiasm. I’ve achieved what I wanted to (some of it because of the ADHD, OCD, TS or whatever), and hold down a responsible job. I have an incredibly great daughter, for whom I am so thankful. We’re going along on reasonably steady and firm ground, and the future is bright. God is good.