Data, My brother from another mother (and planet)

My wife and I have been rewatching all the Star Trek series on Netflix. We’ve finished the original series and are now on series 4 of The Next Generation (Henceforth referred to as ST:TNG)

Last night’s episode was “In Theory” where the Enterprise crew encounter strange dark matter deformations in space-time causing parts of the ship to phase in and out of regular space, but for me the episode is more about Data and his first “girlfriend” Ensign Jenna D’Sora.

This episode resonates so strongly with myself. Data is a friend to Ensign D’Sora, as honest as Data always is, not that he can be anyway else (in case there’s some people not familiar with the series or the character Data is a highly intelligent and analytical android devoid of emotion but with a Pinocchioesque wish to be a “real human”)

In this episode, Data tries to respond to the romantic attentions of his colleague. He’s slow to pick up on obvious signals and despite his vast knowledge he seems lost and out of his depth trying to please his partner.

I was reminded of my early dating experiences (or lack thereof) I was woefully ill prepared for the experience. One of my long time college friends still waxes lyrical with much mirth about the time we were sitting in the student campus bar and I was talking to him about how girls just didn’t seem to like me. At the same time, this girl kept coming over and interrupting me, asking me the time, asking me for a lighter (I don’t smoke), asking what course I was on , who I was with etc etc until I turned and essentially told her she was being rude and to stop bothering me and my friend and I returned to my previous conversation about how difficult it was to get attention from girls.. .. .. erm. In hindsight I see where I went wrong there.

My friends (and I had some, a precious few) loved how utterly oblivious I could be. I would take things either too literally or opposite to how they were meant to be taken.

Example number 2. After a late party out of town a female friend asked me if I’d like to stay over at her place. As it was a long and expensive taxi fare home and I didn’t fancy sitting in a bus station for 6 hours I agreed. She showed me to her sofa bed, then pointed out the bathroom and where her room was. I thanked her and made sure I didn’t go anywhere near her room, after all why else would she have told me where it was if not to ensure I didn’t actually mistake it for the bathroom?

I was in my late 20’s when I lost my virginity (not that I was ever really that worried about that) it sort of happened and I vaguely remember being told what I was doing. I didn’t really have much say in the matter. I was TOLD I was taking her home, I was pretty much TOLD we’d be sleeping together and when I told her I didn’t really know what to do (I had book learning and knew the principles.. I lacked “practical” experience) she essentially took control while I lay there feeling a little scared and unsure of the whole thing.

Fast forward many many years and I met the woman who would become my current wife. My wife has since informed me that one of my most endearing features was my openness and honesty. The very first words I spoke to her when we first met face to face (we’d chatted online previously) was “That’s the only kiss I’ll be getting” as she handed me a Hershey’s kiss as a joke (I had developed a cold sore from nerves and blurted out that I’d not be doing any kissing in case I passed it on) She laughed this off and told me later she thought it was sweet and also slightly presumptuous. Of course, back then neither her nor I knew I was on the spectrum. With 20/20 hindsight all these amusing little titbits all coalesce into something glaringly obvious.

Data had problems with his emotions, he would often be far too honest or literal. He didn’t always understand humour or slang and often misinterpreted people’s words and actions incorrectly.

In hindsight I realise Data and I have much more in common than I first realised.

 

 

Cleanliness is next to Aspieness..

Dirt, Mess..

I hate it. No really. Ever since I was a young child I’ve had problems with “dirt” . Dirt in this context can be ANYTHING from mud, paint, blood or even something like dough or flour !

As a child I remember the circus coming to town. I bugged my mum and dad for weeks to take me and in the end they relented and took me to the circus. Standing outside the big top I was getting excited to see all the wondrous things inside.. until that was I saw what was happening at the ticket office. The “ticket” was actually an ink stamp on the back of the hand. Suddenly, I didn’t want to go in. I remember the anger of my parents after me begging to go for ages suddenly changing my mind last-minute. of course, back then I didn’t know I was on the spectrum so I had no “excuse” i just didn’t want to go in. I remember saying something about seeing something inside I didn’t like. I didn’t want to admit to not wanting to go in because of a silly ink stamp.

I developed a habit of washing my hands. Wash hands before you touch something, wash hands after you touch something, wash your hands before you wash your hands. It spiralled out of control. Before I realised it I had a problem. I was washing my hands constantly.  My hands were cracked and dry, I’d carry a bottle of alcohol hand sanitiser around with me and apply it constantly. My fingers would crack and bleed and therefore make my hands “dirty” again. I’d wash some more.

Now I’m 47, I’ve mostly got over this strange aversion. Don’t get me wrong. I still dislike getting messy but now I tolerate it better. My wife loves me to make bread (something I’m surprisingly good at apparently!) Every time I add the liquid to the flour and yeast and get my hands in there to mix it I wince. As soon as the dough is kneaded and rising I HAVE to wash my hands. I can tolerate it for as long as it’s necessary but not a moment longer. My cooking apron has towelling inserts on the side for wiping. After I’ve baked I swear you could bake my apron and get a 2nd bread/cake out of it XD

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My aversion to getting “mess” on me has some very odd spin-offs. I’m .. hmm.. I won’t say Frightened, but I’m certainly uncomfortable around tattoos ! The idea of getting ink on you that you can NEVER wash off fills me with dread. The idea of me getting a tattoo is bad enough but for some odd reason if there’s someone with tattoos near me I really don’t want to go near them, I CERTAINLY don’t want to touch them. I know logically and intellectually that the tattoo can’t jump off their skin onto mine, but there’s that strange childhood dread of getting dirty screaming in the back of my mind. It’s really illogical and I feel silly for saying it. I know some very nice decent people with many many tattoos on their person. I love them dearly.. but still there’s that slight revulsion attached to the friendship I feel deeply ashamed and embarrassed about.

My old OCD tendencies are gone for the most part. My hands have healed although now I suffer from eczema/dermatitis no doubt brought on by the years of me mistreating my hands. I have this strange repulsion to getting paint on me.. I’ve painted the house many times, but it takes me about 50% longer than it should on account of the number of times I have to go wash my hands.

I still don’t like clubs/events where I need to get a hand stamp. And as for the circus? Well, I did eventually get to one only to realise I was afraid of the clowns. No, not for the usual reasons.. all that face paint you see.. .. .. .. 😉

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A letter to my younger selves Pt 2

A while back I wrote two time travelling letters to my 7 year old and my 17 year old former selves. In this blog entry I fire up my quantum pen and put temporal ink to hyperspacial paper and write two more letters to the 27 and 37 year old versions of me respectively.

“Hi 27 Year old Pete!

It’s me! 47 year old Pete writing to you from the year 2017! How are you doing? Congratulations on your math degree by the way! I know you found it quite easy. Math always was your strong subject, you might not have known you were Asperger’s back then, but you were, one of the rare positives of austism I suppose, although not everyone develops super math skills like you. I hate to tell you though, you won’t be using your degree skills much from now on as you’ve no doubt found already? Let me see you’ve had a couple of small jobs already. A Document Controller for an oil and gas pipeline project? Oh and you worked for that Joinery and Building company in Aberdeen didn’t you? You wrote their client tracking and employee scheduling system for them didn’t you. That’s what you’re going to do from now on I’m afraid. You’re a Software engineer now, you’ll write software for other people! Still it pays the bills (admittedly it doesn’t pay very many bills at the moment.. but you will get paid more eventually, especially when you move)

Oh yeah, I really should cover that. You’re in Aberdeen at the moment. The “Big” city! I know you found moving there really stressful and you miss the quiet of your small home town. It’s ok, it will get better. Trust me you will get used to city life. You’ll be here for around 10 years yet, just in time for my next letter I guess. You’ll make some great friends and even have one of those more serious Girlfriends I told you about previously. You’ll end up as a software developer for a huge multinational oil and gas corporation and you’ll be there for nearly 8 years. However there’s going to be some big changes ahead. Good ones I have to say – don’t make me worry you. But there are big scary changes ahead and you can’t avoid them. Just try to enjoy your time in Aberdeen. Anyway, I’ve only got a short while and I still need to write a letter to your 37 year old self. Enjoy the next 10 years, by my calculations I’ll be writing to you just around the time of your big change! It’s ok. I won’t spoil the surprise just yet. See you in a decade

Your friend, You (aged 47)”
Right that’s one for the Doctor to post next time he’s popping over. Time for one last one.
“Dear 37 year old Pete,
Hello once more ! This will be my last letter to you as a decade after this – well you’ll be me here writing them! So you’re still in Aberdeen for now and you’ve recently bought a flat?! Wow you own your own home! Feels very odd doesn’t it? You and your last girlfriend broke up if I remember, it’s a pity but hey, you’ve got a new girlfriend now haven’t you? Yes, and what’s more she’s from London! I still cannot you met through social dancing of all things XD It was your best friend who suggested you go dancing after you broke up with your ex.  I recall you didn’t particularly enjoy the dancing, but you made some very good friends there, friends you still have today..er.. my today that is – not yours. My my time travelling is so confusing! Anyway you like this new girlfriend of yours and I believe you’ve been popping up and down to visit her and she’s been doing likewise. I know you have a good feeling about her and you’re right to. Ok, in my last letter I told you about a big change, one I knew you wouldn’t like much. I just want to take a moment to prepare you for it. The company you work for is being bought out, they are going to get rid of most of your department and I’m afraid to say, you will be being made redundant. It’s nothing personal, but I know this will really upset you for a while, it’s ok to be upset but I’m here to tell you something you might not expect. Ready? THIS WAS A GOOD THING!

Yes really! You and your Girlfriend have both been travelling back and forth from Aberdeen to London for months. You don’t need to do this any longer. You’ll get a sizable redundancy package, you’ll find someone to rent your flat – and you’ll move down to London!

No, I’m not kidding. Don’t panic it’s fine. It all works out REALLY well. You move down to London and move in with your girlfriend in her flat. You’ll get a REALLY COOL new job working for a famous F1 motorsports company and you’ll be making so much more money. But that’s not the best part. Ok, I’m probably spoiling the surprise a bit but here goes. When you turn 40 you’ll get married. YES, you heard me right, married. Believe it or not, you’ll actually get up in front of all your friends and do a speech! And you’ll barely stammer at all. You’ve come a long way since that scared little 7 year old boy I first wrote to.

You and your new wife will then sell both your and her flats and buy a house in London together. You’ll have ups and downs, you’ll change jobs a couple of times but eventually you and I will catch up. We’ll be living in our family home with a cat called Jelly. No we didn’t name her. You won’t have any children unfortunately but that’s ok. You’re happy. Eventually during one of your low periods you’ll go to the doctor for counselling and , in doing so, will finally be told the truth of who you are. It’s taken you 40+ years to get here but here you are – Aspie and proud.

It’s been one hell of a journey and I’m glad I got to share it with you

Best regards

Pete.

About my Anosmia.

Ok, on a blog about living with Asperger syndrome I do a post that’s nothing to do with Asperger’s! I’ve been getting a few questions about this and how it affects me so I’ll do my best to answer them below.

Q. What is Anosmia?
A. Anosmia is the medical term for loss of the sense of smell. It can be caused by many things such as head trauma or infection, Nasal polyps, exposure to toxic chemicals, drug abuse or medication side effects (to name but a few) . For some people, like me, it’s a congenital condition meaning we were born this way. I’ve never known what a smell is; I will never know what a smell is. My brain just isn’t wired to receive this information.

Q. So if you can’t smell, you can’t taste right?
A. Wrong. I *CAN* taste. “Flavour” is a combination of both taste and smell (and affected by other senses too such as sight, mouth feel etc) The human tongue detects 5 basic flavour groups, Namely Salt, Sweet, Sour, Bitter and Unami (the strange “savoury” or “brothy” taste found in foods like Beef, Mushrooms and Soy). I can also detect the burning sensation (an actual physical pain response) from the capsaicin in chili, and the cooling sensation of menthol in mints. What I *CANNOT* get is the aromatics found in food. These travel both up the front of the nose, and up the back and give an extra level of information about the food you’re eating. This is why I don’t really drink. Wine all tastes the same to me. Beer all tastes bitter. I can’t differentiate between herbs in dishes and subtle nuances are totally lost on me. It’s all about the primary flavour and the mouthfeel to me. Explains why I ADORE salty potato crisps! (Chips if you’re an American 😉 )

Q. But it’s not serious though is it?
A. Yes AND No. I do not consider myself to be disabled. It’s not as limiting to my day-to-day life as deafness or blindness would be. It doesn’t degrade my quality of life significantly and on a day to day basis I rarely think about its absence. However, that said I have had issues in the past. I’ve had more than my fair share of food poisoning. I’ve eaten foods that have gone off because they LOOKED ok. I’ve set fire to my kitchen at least twice because I couldn’t smell the food I was cooking was burning. Finally, I’ve NARROWLY avoided killing myself because I walked into a kitchen and was about to turn on a light.. not realising a recently fitted gas appliance had been leaking all day! Luckily I was with someone with a good sense of smell who stopped me before… well. Also, among people who have lost their sense of smell, the sense of deprivation has been linked to severe depression and even suicidal thoughts. Luckily I don’t miss it as I’ve never had it.

Q. Wow! I hadn’t really thought about that! So any positives about anosmia?
A. Well, as positive as one can be about missing one of your five senses. I used to work on my Aunt’s farm at weekends as a child for pocket-money. I do not need to go into any great detail about why having no olfactory sense would be a benefit there 😉 It’s also fairly invisible. Unless I tell someone, no one knows. So I don’t have to suffer discrimination (positive or negative) over my condition.

Q. So how else has Anosmia affected your life?
A. For a while I was obsessed with being clean. I mean overly obsessed. As I didn’t know if I smelt fresh or not I would constantly wash myself. This developed into an OCD fixation with hand washing to the point where my hands were dry, cracked and bleeding. I’m “better” now. I manage my condition much more effectively than I did. I still don’t like being “dirty” but I can tolerate it. I can do things now I couldn’t do previously. Like getting my hands messy with dough making bread for my Wife and I. (Apparently I bake the better bread of the two of us.. so this is my task now XD ) I do not know if my Anosmia and Asperger Syndrome are linked. It’s likely. I’ve always felt “detached” from reality, like I’m living inside a plastic bubble. I cannot really connect with anything as I’m missing out on a layer of information I cannot perceive. Food is mostly boring for me. I forget to eat mainly because I’m not being prompted by external signals. I do like some foods over others but mostly I eat because I have to not because I want to.

I also don’t use deodorants or scented soaps. I wash with plain white unscented shower lotion and do not use any sprays or perfumes.

This is just a brief introduction to anosmia for those who didn’t already know anything about it. If you are interested in hearing more please feel free to contact me.

An Aspie Sidesteps The Multiverse

There is a theory which is popular among science fiction writers that we live in one universe among many other parallel and different universes. In these universes life is similar to the one we live but not exactly the same as here, so I might be a professor teaching mathematics in one instead of the software developer I actually am in this universe. Small events can ripple outwards to make huge changes in the eventual outcome, meaning even a small change at the start of a life can lead to a very different one at the end. It made me wonder. What if?

Hi, I’m Pete and I’m a 47-year-old with autism. I was diagnosed with Asperger’s syndrome aged 5. I didn’t really understand what it meant at the time, I just remember being told I had to go to the “special class” when I started school.

I didn’t much like school. The teacher never really listened to me and we kept having to do stuff I found easy, Like working out change from shopping or how to make a sandwich. I always felt really odd in there, surrounded by kids with Angelman’s syndrome, profound deafness or other similar conditions. Perhaps these days the kids would be more integrated and less isolated but this was a small Scottish lowland school in the 70’s we were hidden away in our own class like an embarrassment. I remember Mum and Dad arguing a lot. Dad always wondering about who was going to take care of me. Mum worrying about how I’d cope when they were gone. I tried telling them I was ok and could look after myself but they never listened. Primary school came and passed. I didn’t learn much, at least, not from the teachers at least. I read my own books and learnt from them. When I went to secondary school again I was segregated into our own special little class only difference now was there were more of us from other schools in the area. Teachers tried to give us the basics, but with limited staff and so many people with different abilities and disabilities more often than not we were just told to keep quiet and read.

I got picked on a lot at school. I didn’t really make any friends unfortunately. I’d often just spend time in the library, but even that was frustrating as the librarian always seemed to think the books I wanted to read were “too advanced for me” and gave me other ones. I get angry when I’m not allowed to do what I want and as such I’m always in the headmaster’s office for punishment.

School finishes and I’m told I have to go to the adult learning centre. It’s not what I want to do, I see people on TV using computers and things and I think they look fun, unfortunately my Mum and Dad say they’re for “other” kids and we don’t get one. I’m so bored so I make my own fun. I’m arrested several times for lighting fires. Just piles of rubbish but I loved the flames. I remember mum crying again and dad not speaking to me. Next thing I know I’m in “sheltered accommodation” living with other “disabled” and elderly people in a large town in SW Scotland. I’m given pocket-money every day and I have to report in all the time. I’m really bored. We have a computer in the home. It’s not very fancy but it’s got some games and stuff. I’m not allowed to mess around with it though. I was looking around one day and changed something and the printer stopped working. I was just curious.

I stay in one sheltered home after another. I’m allowed a little more independence now. Seems people are more accepting of the mentally ill. I have a small job working in the local supermarket. I’m not allowed to be on the tills or anything, but I sweep up the store and stock the shelves. It’s nice to be able to get out of the house.

One day a new book shop opened across the street. It was an odd place, sold books but also have a coffee shop and computers you could use! If you paid 50p you could use one of the computers and search for ANYTHING you wanted. It’s amazing.

This one time, I found this story about a guy the same age as me, funnily enough also called Pete. Only he’s married and living in London with his wife and works as a senior software developer for a large multinational company. Gosh.. what a wonderful life that would be but it’s not likely.. it’s just pure science fiction if you ask me!

Afterword.

Obviously none of this happened to me. But it’s not all fictional. My school did have quite pronounced segregation for special needs students. Even the deaf students who were bright and intelligent were schooled with the more acutely disabled students. I did actually (and erroneously) end up in that class for one afternoon. I didn’t enjoy it one bit. My life as a troublemaker, arsonist and shop worker didn’t happen to me either. There was one boy in our school who this happened to. I never really knew what happened to him, I recall him being sent to a borstal school because of his arsonist tendencies.

My mum and dad were supportive all my life and encouraged my curiosity and wild ideas. Not many kids in early secondary school had two full sets of the Encyclopaedia Britannica! (Admittedly 2 very old moth-eaten second-hand sets – but still !) I got my first computer aged 10.

And yes, I knew of people consigned to the care system. Living in sheltered homes and the such. My mother used to work as a carer in one such establishment and I got to know some of the residents who lived there. In this “what if” scenario I just put myself in their shoes.

I was never diagnosed at school. I wasn’t diagnosed until I was 46 by which point I was working in London and married. Perhaps my life wouldn’t have changed so drastically and dramatically. But I know my parents would have worried about my future and I also know I wouldn’t have got the level of education I needed. The rest is pure fiction and conjecture.

Me and The Mask

No, this isn’t a discussion of my personal feelings regarding the Jim Carrey movie (although, for better or worse, I quite like it.. Let’s just agree to never talk about the sequel though ok?)

No, the mask in question is this one *points to face* what? You don’t see a mask? Perfect! Just the way it should be. You should look at me and ne’er give me a second glance. You should cast your eyes upon my unremarkable mediocre visage and pass on without a second thought. I should merge seamlessly into the sea of anonymous faces, never standing out.

The mask I wear hides who I really am. After 47 years of being an aspie – actually no, technically after 1 year of being aspie and 46 years of being a very confused individual – I’ve learnt to hide my inner true self. I hark back to the conversation of the previous week ( see blog post Oh Dear…. for details) where a colleague told me I couldn’t possibly be on the autistic spectrum as I was “not weird enough” I suppose I should be happy that it’s working so well.

Unfortunately, I have to present a false front to my shabby interior. We’re all judged daily by people we know and people we don’t. Walk onto a bus and within seconds someone has probably made a snap judgement about who you are and what sort of person you might be. I get treated differently when I’m in my work suit and tie opposed to my scruffy weekend gear. How do you think I’d be received if people who didn’t know me suddenly realised I’m “not right in the head” (not my words – overheard on a bus recently about another passenger)

Masking is dangerous. It puts us under incredible stress and strain. Constantly being on guard and pretending to be someone else every waking moment is hard. Constantly worrying about letting your pretence of normality slip for a second makes me very anxious. Of course, I can’t SHOW this anxiety, no I have to bottle it up as well. Apply the plastic broad smile and artificial twinkle in my eyes. I have to laugh and joke with everyone like I don’t have a care in the world when in reality I’d dead and dry as dust inside.

It’s tiring being someone you’re not, which is why my wife is so important to me. She’s one of the few people who know ME – Not the fake public me, but the frail broken shy private me. She’s got the keys to my inner enclave. She’s seen the face behind the mask and covered it in loving kisses. I feel safe around her. She is my strength and my anchor.

Unfortunately I can’t carry her around with me every minute of every day. I have to work, interact with people, deal with problems and strangers and that great messy uncontrolled tangle that is London. As much as I hate it, I need the mask.

Time to put the mask on again and face the world from behind its protection.

How do I feel?

Smokin’

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Known by many, loved by few.

That’s a twist on a regular diagnosis of ADHD sufferers (something, thankfully, I don’t suffer from) the typical way of describing someone with ADHD is ““known by all but liked by none” which is actually quite cruel if you consider it for a moment.

I read that and considered my own interaction with friends. I’ve only known about my Aspergers for about a year now but as a child I didn’t make friends easily. If there was a pecking order for bullies then I was at the very bottom of the pile. I was bullied mercilessly by everyone including some of the female students.  I had a terrible speech defect (to some extent I still have it, although 47 years of practice means I hide it very well) and kids (being the cruel little monsters they are) picked up on it and all through primary and secondary school my nickname was “Stutter”

Not everyone was a monster or a bully though. There was one girl, Kaye – sigh – I honestly thought we’d marry back then. Ah the innocence of childhood eh! Of course, to marry it is USUALLY preferable for affection to work BOTH ways XD Not being very good at reading emotions I didn’t actually pick up on that. I always got the impression she “liked me” but probably much in the same way as a child likes a dumb dog or cute idiotic little hamster hehe.

Anyway, we grew up. One cannot prevent that no matter how one tries. Primary School gave way to High School, High School gave way to University, and University gave way to the endless trudge of working for a living.

For 47 years I’ve found making (and more importantly keeping) friends very difficult. I’m what can only be described as “odd” or “peculiar”. I’m prone to emotional outbursts and don’t like letting people into my internal “fortress of solitude”. I’m standoffish and shy, bordering on rude at times.

I don’t like social events, I don’t like lots of people milling around or chatting (see my previous post for a recent example) so naturally I don’t tend to socialise much.

The fact that I somehow met a woman who loved me enough to see past my hang-ups to actually marry me is amazing. But she’s a social butterfly. She dances, she goes to the WI (Woman’s Institute) , she has MANY MANY friend who she contacts and visits regularly. Me?  I have her.

Well, ok I DO have other friends. People from University I feel comfortable around. They were my best man and ushers at my wedding. I never contact them, never see them, occasionally I’ll post something on my Facebook page that mentions them but I know they’re there. They’re not expecting me to chat or call. (When I do occasionally telephone I’m always at a loss for things to say anyway XD)

Then there’s my circle of VF’s (Virtual Friends.. a term my wife coined for me) These are people I chat with on Twitter. They have names, they ALL have names, but we don’t use them. It’s all MightyMycroft this and Diceman3000 that or BizarroMan10 the other (Those names are made up btw) there’s a level of detachment about them. Doesn’t mean they’re not important to me. They are. But they’re not “REAL” in the tactile sense. I’ve never met any of them, I have no intention to ever meet any of them, I care about them and their problems. Even going as far as helping them out when problems strike, but they don’t REALLY know me. They know a VERSION of me. Edited and spell checked (mostly) , Puns carefully thought out and delivered with rapier sharp (but controlled, planned and restrained) intellect . They get the cardboard cut-out of me complete with sound bites and bad jokes. They get the image I project onto Twitter. It’s no more me that the image on a movie screen is the actual actor whose movie you’re watching. It’s two dimensional and ever so slightly fake.

I have my wife but am I lonely? Perhaps? Yes AND No. I know that’s a contradiction but I like my solitude. I like going to the movies by myself, I like going to Cosplay conventions on my own. But part of me aches for the connection. I see friends playing online together, or meeting up at games conventions and the likes. I want to be able to share in that warmth but I can’t I’m too isolated. It’s a barrier I can’t get over. I have my soul mate in my wife; I should be content with that.

Sadly part of me is still that 8 year old boy standing on the edge of the playground watching other kids have fun playing chase and wishing I could join in.