My love life (part 2)

As a child, the only extra curricular activity I regularly engaged in was catechism. Being from a strong catholic background, it was mandatory I attended these classes in order to be eligible for the required sacraments.

In May 1989, as I got ready for my first communion, I struck acquaintance with one girl, Aurore, and her friend whose name never registered. She walked up to me, asked for my name and introduced herself because I never asked. She enquired about my school among other things. All I did was to answer her questions.

I didn't meet her again until the Retreat, a religious outing to Lourdes, in the north of France. During the lunch break, a pretty girl, around the age of 11, approached me and boldly asked for one of the sweets I was having. She had a lovely round face bordered by smooth straight dark brown hair. Her skin was of a dark Mediterranean complexion. Her most beautiful green eyes were almond shaped, giving her a slightly  oriental appearance with a barely noticeable minute scar between right eyebrow and the eye socket . As she smiled at me, she revealed a pair of dental braces on both rows of teeth. That was Aurore again. A subliminal attraction to her had began in me.

I didn't look in the best of shapes at the time. A week earlier, I had tripped on the vacuum cleaner's lead and knocked my head unto the edge of the wall, causing a deep cut to my forehead. My mother had treated it with cotton wool which had gotten stuck in the closing wound.

 I generosity handed her three of my sweets and these were her exact words: " Merci! Tu es romantique ..."

We didn't have much to say afterwards so she walked away with her friend, leaving me to wonder whether or not we both felt the same way about each other. 

On the day of the first communion, she wore a white flowery dress with a little flowered straw hat. We smiled to each other and didn't speak. For the next year, I would see her every Wednesday on my way to catechism. She was part of the second group and I was in the first, meaning, when I was on my way home, she would be on her way to the class. Our paths often crossed midway. Sometimes I would avoid her, other times I would smile. But I  always, always prayed that I would meet her, just to look at her once more. I thought about her always, especially in the mornings as I woke up. I also noticed something. When I'm missing someone, and I think about them strongly, I suddenly lose the ability to remember what their face looks like. Until I see her and my heart misses a beat.

I kept living a fantasy with Aurore without ever giving her a hint about what I felt. I was scared I would ruin our friendship if I told her I had feelings for her. I was also scared of the sudden realisation that the fantasy I'd been living in my head would be a one sided affair. I decided to never let her know. And the dream lasted for nearly  two years.

My family had to return to Africa in September 1990 and that was the end of Aurore and I...well not quite. I didn't have her address so I couldn't write to her. But I could still think about her and I did so for months. I never forgot her. I never even knew her surname. She crosses my mind every now and then.

Time passed and...

Having lived a solitary lifestyle throughout infancy in a world of total cluelessness about social protocols, I made my first steps into the teenage world on my 13 th birthday in Ghana, west Africa .  I didn't see much change in me apart from the odd hairs in the nether regions. My voice never "broke", my shoulders failed to expand, and though there was a barely noticeable interest in the opposite sex it still was a no-go area for me; my mind blindness and my inability to detect non verbal cues made it impossible for me to anticipates reaction to any eventual approach that I might make. So, just like when it came to making friends, I steered well clear from the daughters of eve to avoid making a fool of myself.

At school, not many boys had girlfriends because of the strict African culture and the stiff punishment administered to anyone caught in any amorous enterprise. I also realised one thing: all the girls were taken.

Though I was unusually skinny and weak looking, I considered myself far more attractive than their boyfriends. They were plain ugly wicked bullies with absolutely nothing to offer. But because they could lie their way to the girls' hearts and were good at football. And they could make small talk, which I couldn't. I was usually subjected to ridicule by the boys in front of their girlfriends to entertain  them. There was one girl , who overlook all of it and became my friend. Her name was Kirsty and she was in my class. We were often seen together in class, chatting during break times. Everybody thought she was my girlfriend. I never denied or refuted the claims because I liked her and assumed she liked me too... 

Then one day, when one boy decided to tease her about me in class, she finally seized the opportunity to set the record straight: " Who the hell is he to me that he should be my boyfriend? The cheek of that! Don't I have eyes? Haven't I got taste? Don't you Think I respect myself enough??!?" Then she angrily stormed off, leaving me in the classroom with 25 other boys and girls who had just witnessed my very public disgrace.  I can't put a name to my emotions at that time... All I can say is that it felt deeply unpleasant. I recoiled from Kirsty , and from other attempts at getting a girlfriend.

 By the time I'd gotten to high school, I'd joined a christian group and was actively involved in bible studies. The pressure to fit in by getting a girlfriend was nonexistent so I could finally get on with life. I was in a boarding school and at the end of each term. I would come home for the holidays. 

When I was 16, my mother and a few other people became the founding members of a new parish church not far from my house. I came home for the Christmas holidays and one Sunday, the priest asked us to go round and welcome one another in the church. That was when I befriended two girls who were around the same age as me. The first one was Wilhelmina ,or Mina for short. She was a very pretty, light skinned girl with coloured ribbons in her long plaited hair. She was very well dressed and attended an international private school. Her companion wasn't as attractive. She was of a dark skin colour that made her eyes look very bright. Her hair was short like a boy's hair. 

She went by the name Dee and she attended a top public girls school. I later understood that Dee had been adopted by Mina's family, where she worked as an orderly when she wasn't in school.

We exchanged addressed and the three of us wrote to each other once a term. I found Mina very attractive but I knew better than to go telling her. Also, as a religious leader in my school, the last thing I wanted was for romance to steal my heart away from the ministry. But most of all, I knew too well that she'd be too happy to tell me 'No' if I ever asked her out. So to avoid any embarrassment I never gave a hint that I found her beautiful. After a while, they stopped coming to church in favour of a bigger church in town.

One day, out of the blues, someone knocked on our gate. When I opened it was Dee, Mina's plain adopted sister. She had an invitation for a party at their house. But when I set eyes on her, I froze.  She was the same but Some unexpected attraction to her had rocked my life. Her eyes and smile...and even her untreated hair made my heart fall in love. It wasn't like the little crushes I had as a kid. This one was gripping and captivating, almost debilitating. I would think about her non stop for days. 

I never attended the party. I hate parties . I can't dance. Can't stand loud crowds. I'm usually miserable in such environments. So I went to visit Dee a day after the party. I thanked her for having invited me though I couldn't make it. In the days that followed, we became really close friends. We wrote letters to each other, with hearts and xxxs, shared our happy and sad moments. I heard a song called "Pilot of the Airwaves" during a time I was thinking of her. Ever since I associate that song with her. I would read and re-read her letters in absolute moments of obsession. I had eyes for no other girl apart from Dee. We gave each other gifts on Christmas and in the new year. Mina's mum took a dislike to me for reasons I know not of. I once met Mina and she told me" you don't write to me anymore. If you did, I'd be writing to you so much that you'd beg me to stop!" I smiled. Wasn't sure whether she was joking or not. But for me, it was Dee I wanted to marry and build a future with. I studied hard in class so we could build a secure future.

She once came to visit me. I took her to my room to show her my collection of cassettes. I only bought one type of music from a Christian Contemporary band called Maranatha. They had a Logo of a dove at the bottom of the cassette sleeves and when properly arranged, my collection would have 2 rows of 15 identical doves accurately aligned on my desk. I would play her one song after the other, then I would childishly use my Walkie talkie to transmit my voice onto a radio frequency I had discovered. I acted as the DJ and dedicated every song I played to her.

Dee had earlier on informed me that she would begin to leave as soon as it's half past the hour. I fiendishly turned back the hands on the table clock anytime she wasn't looking and got her to stay for an hour more than she had planned!

On her birthday,  the 14 th of April I finally decided that she would be the first ever girl I would ask out. I didn't know how I would go about it so I decided to use a card. I spent my meagre savings on a beautiful Blue Mountain card that said " To the One I Love " in a pearly textured design. I attached a letter detailing how I've always felt about her. To me that was the ultimate birthday gift. I would have been over the moon to receive someone's life and love on my birthday.

I went over to her's  and waited as she was called to meet me on her porch. She walked to me, bypassed me and went to sit on a chair at the other end of the porch, patted the chair right next to her and said "Come and sit here!"

I sat next to her and handed her the envelope. Our fingers touched for the first time. We'd never had any previous physical contact.. I nervously but excitedly wished her a happy birthday and listened to her as she narrated the events of the week. I requested of her not to open her card in front of me or in front of anyone else. 

When we parted ways, I played the waiting game. How would she feel about my card and letter? Would it be a dream come true for her as it would be for me if she said yes? 

I had been a loner all my life. My sister, with whom I often engaged in rivalries over almost everything had never been single for more than 2 months since she was 13 and was at the time in a serious relationship with a young lawyer our mum was paying for him to be her literature tutor for her A' level exams. I told my sister that I now had a girlfriend.

That week, we all returned to our boarding schools and I was due to begin my mock exams. By the end of the week, I received the much awaited letter from Dee. I went in my cubicle and tore the envelope open. It wasn't what I expected. I reread it a number of times to ensure I hadn't missed anything. It said: From your letter and card, I can tell you're in love. Who are you in love with? I'm not the one because we're just friends. So give me the name of your lover."

 I immediately replied saying that she was the one I'd fallen in love with and that it was the first time I'm declaring my love to somebody so if it appears a bit awkward, she should please overlook it."

 Before my reply even got to her , I received another letter from her. It was an angry letter that read: "Dear Billy. I am very disappointed and upset as I write you this letter. The sight of the card and the content of the letter makes me sick. All this while, was this what you were thinking? You should have told me to know my limits. No wonder you didn't want me to open the envelope in front of anyone!!!"

 For  three days I didn't eat anything , nor did I speak to anyone. I hid the letter in my box of talcum powder so that none of my school mates finds it and brings further ridicule my way. I went through depression and grief. People often talk and joke about the fear of rejection. However, nobody really comments on the pain of a rejection. I couldn't believe what had just happened. It hurt terribly, drilling into my heart and soul. I had hit rock bottom and I wish I could go back into time and not send that card, not fall in love. I found the strength to write a reply, to say sorry for letting her down by letting my heart fall for her. I suggested to  her that she could burn my card and letters and pretend none of this ever happened. I apologised for ruining her birthday with the card and asked that we move on from this episode.

 Thereafter, I cripplingly  ill with malaria. I refused to seek treatment because I wanted to die. Life wasn't worth living anymore. 

On the Sunday before I wrote my math mock exam, my sister came to visit me. I was so weak and feverish I couldn't come down to see her. Amid tears of frustration, she left the school and I thought I'd gotten rid of her. She returned with a family friend of ours who owned a taxi. They drove me to the nearest hospital for treatment. At the hospital, my condition demanded they kept me on admission but I begged the doctor to make me an outpatient because I had my math exam the following day.

I was devastated, dejected but determined to live life to the fullest, even if I had to make  it alone.

My love life (part 1)

I began having crushes from the age of 5. The subjects of my crushes were usually girls who didn't like me, like the one who used to bully me in kindergarten, or girls who were a bit older than me, like Krista, that loud but beautiful sister of a friend of mine. She wore braces, that's all I remember of her physique, now.

 When I was 10 years old, I took a serious liking to Sarah, a classmate of my sister, who was already in her teens. I'd always admired her beautiful eyes and had never spoken to her before. I once told my sister that anytime I saw her , my heart missed a couple of beats. She organised a type of play date one Wednesday afternoon for me and her after I confessed that I liked her. We met in front of my school in the 17th arrondissement of Paris . As soon as I saw Sarah with my sister, I sped off in the opposite direction as fast as my legs could carry me... Not that fast, because they soon caught up with me.

"Don't be shy, Billy, " Sarah said. Now, one secret about me is that when my first name is mentioned whilst talking to me! I take it as a sign of affection and all other emotions melt away. I was shy because it was completely out of the ordinary for me to interact closely with someone I fancied. We played "chat bisou", an "it" game where I would chase sarah, catch her and give her a peck on the cheek, then she'd be "it'!

 Later that afternoon, we went to my Parisian flat, which I shared with my sister and my mother. Throughout the date my sister chaperoned us. Sarah was a french girl in my sister's secondary school whose beauty overrode my reasoning to the core. Though I tried to communicate to her that my heart was all hers to steal as much as she wanted, my non-verbal communication skills lacked the much-needed vocabulary to convey my innermost feelings.

The year was 1988. I was hoping to have my first kiss on that day. Unfortunately, my dream of a first kiss wasn't  to materialise until 17 years later.

 After we said our goodbyes and promised a follow up date, I wrote to her on an A4 piece of paper, which I filled with drawings and red hearts. I told her I wanted to marry her and live the rest of my life with her. She replied the following day through my sister who was our carrier pigeon. The paper she wrote on was much smaller than mine. It was sky blue with lines on it. In the middle of it was a large poorly drawn heart, painted red. From the words in the letter, she enjoyed the time spent with me, she called me the prince of her heart, told me I was the handsome prince of her heart and that she loved me.

 I couldn't believe it, it was too good to be true. I, of all the boys in the world, had the best girl! I felt strange sensations in my chest whenever I thought of her. The next day, I felt on top of the world at my primary school. I felt special, mature and felt that I had finally found something to live for...

Then, I had an argument with my sister that week over something I can't quite recollect. In a moment of blind rage, she spilled the beans. "I contracted Sarah to pretend she loved you just to give u a social life and to boost your self esteem!" She said. "I bought her sweets in exchange for that date. She don't love you one bit. She's got a handsome blond haired 17 year old boyfriend with broad shoulders. Why would she want to go out with a "gringalet" like you?!?"

That burst my bubble. I'd been living a one sided lie of a love affair. I never replied to that letter. I did see Sarah a couple of times but we never spoke at length, just a hello here , a hi there. Her family became friends with my family and we often invited them to our parties and celebrations. I never asked her of her new boyfriend. She never spoke of him. But I would forever remember her and the meer fleeting thought of her would always, always cause my heart to skip a beat or two...

 By now she must be married, maybe divorced and remarried...a lot older, life must have put its strain on her, robbing her of her teenage glow. But in my minds eye, she's still the ridiculously pretty 13 year old girl I had my first and most powerful crush on...frozen in time, forever young, eternally loved, perpetually preserved. The following year, my class went on a 3-week excursion to the countryside region of Franche-Comté . We joined another school on this horse riding expedition. Among the things I loved from this experience are the horses, ( I can still list them by name and in order of their boxes in the stable), songs by the fireside, fresh unprocessed whole milk for breakfast, straight from the cows udders. I also loved Albane. Albane was a girl from the other school. She was the first person with Down's Syndrome I'd ever met. She had a thing for boys and she would try to kiss them whenever she had the chance. She never tried it on me, though. She never took notice. They would pull faces in disgust, wipe their cheeks and poke fun at her. At first, I found her awkward and off putting, then with time, I began to wish we were friends. There was something that brought us together... Loneliness and rejection. I never told a soul about my feelings for Albane. What would people think? One guy asked her during lunch, when we shared a table" Why are you not normal?" An anger rose within me. I wanted to pounce on the boy. But I didn't. I kept to myself. Rumours began circulating that people with "mongolism" ( that's how they called it at the time) die at 18 I felt sad for her. I missed numerous opportunities to introduce myself to Albane; one of these opportunities was when I went to the playground to use the swings. I was alone, with the exception of a tall girl with waist length hazel hair on the swing, chatting to an imaginary friend. I watched her from a distance. She was beautiful to watch... then walked away. It wasn't until the end of the excursion that I realise I'd had a crush on her. I thought about her for years afterwards. Thoughts that she knew my name and that things had worked between us.

Group work

Group Work. My worst nightmare. A skill necessary for survival in a neurotypical dominated world. A skill that, if you are open and honest about your lack of it in interviews, you will fail to get any jobs, be subjected to homelessness and starvation resulting in your eventual demise... Unless you lie about it, your chances of earning a livelihood are immensely impaired.

This post comes as a result of a reality show I watched earlier this week, where a number of volunteers were chosen to partake in a social experiment during which they were made to live in Mesolithic conditions, without recourse to modern technology. The survival of the tribe was largely dependant upon groupwork and even among neurotypicals, groupwork turned out to be an issue.

I've been on countless in-service training programmes where I've been bundled in a group with complete strangers and instructed to come up with a solution to a problem. I expend a lot of energy trying to come up with something to contribute to the group, while all the others seem to naturally generate the right words to say at the right time to the right people. It doesn't take long before everyone else in the group become aware of my silence. They miss the tedium I experience in thinking hard about what to say and the painful process of processing their words and conversations and making sense of it all. They weren't there when I woke up in the morning in intensely debilitating fear, dreading what problems I would encounter as a result of my social and communication problems. All they see and all they know is that 'this guy is not talking and for that matter, he's not making any effort. We are therefore choosing to dislike him'. This becomes glaringly obvious in the next item I dread: coffee break times. It's too short for me to dash outside and relax on a nearby park. Yet it's long enough to experience the full force of social isolation. Groups form around me while I stand or sit like a centrepiece, all by myself. I find it impossible to believe that these folks have previously never met and now they're all best friends with so much in common, numbers are exchanged, bonds are formed. Even the person who I befriended because I was the first to arrive at the venue and was able to offer her some assistance, has found a group of people and has formed a stronger friendship than mine. An attempt to join her little group was an eye opener: the group disbanded...and reformed elsewhere...Was it my breath? My dress sense? Do I have B.O.? Or do I simply keep invading people's privacy without realising it?

My days of hopping from one group to another, putting on a friendly face( wide forced grin) in the hope that one group might ask me about my music or my work or anything of interest that would get me talking to the group are over. I quit trying to be Mr Life and Soul of the Party. Period.

A few years ago, whilst I headed the department of English As an Additional Language (EAL) in a reputable secondary school in inner London, I had the singular opportunity of being invited on board a working party with the aim of revising the standard 'Stages of English Acquisition (threshold, beginner intermediate and advanced) for all the four skills (reading, writing, speaking and listening/ understanding). I felt so honoured to be chosen to influence such an important document that would inform the good practice in schools at the Local Authority level. This was a year before I learned I had Asperger's.

On the day, we all met in a host school. It was a large and daunting group. But when we were split into primary and secondary sections, my group was a lot smaller. It was made up of 4 people. Myself, an outstanding EAL teacher I had the opportunity of befriending months before, another EAL teacher by whom I had been previously mentored at the start of my tenure of office, and a male EAL and English teacher I had never met. What struck me most at first glance was his rebellious hair.

Then came the time for introductions. As I dreadfully waited for my turn to speak, each of the participants one by one listed their accomplishments and accolades. The male teacher spoke of his books and publications. My friend mentioned the trainings she had delivered all over the city, the materials and packs she had developed, passing some samples round. The experienced mentor had volumes to say and by that time, it had become apparent that I was the weakest link.

Mine was short and sweet. I spoke about my recent appointment as head and how I was progressively bringing change in the school with regards to EAL. At this point, the organiser stepped in to announce that she had decided to include me in order to provide me with exposure and experience. By this time, I had become so belittled and downtrodden I couldn't shrink any further. I tried to psych myself into seeing the positive in the situation, and foreseeing the skills and recognition I would gain at the end of the exercise. Did that work? Nope.

As the working party deliberated, each participant had a valuable contribution to make. They spoke of topics I had never heard about though I am an avid reader. They mentioned theories and debated existing stages of language acquisitions with theoretical ones. There was no way I could have made an adequate contribution to something I knew so little of. I suddenly realised that whenever the opportunity arose, I would echo the last words of people in the hope that it would register into people's minds that my voice was also heard. The rest of the time, I battled with anxiety and waited anxiously for the end of the session.

Then, I remembered that my driving lesson was due in an hours time and the commute home was quite a distance. I switched off and began to ruminate about being late for my prepaid lesson, and losing my fee as well as valuable practice time. I was therefore, unable to grant the session any more of my battered attention as my mind was now a blatant battlefield. A carnage of words and thoughts and emotions.  My head and heart pounded like a thousand galloping horsemen launching a brutal assault. My stomach churned with butterflies like a hurricane. I knew I couldn't take anymore. What I did not know was that it had a name. Sensory overload. 

When they finally closed, I was the first to dash out. I survived the commute and made it just on time for the driving lesson. I was a complete wreck during the lesson and it was unusually dark. Outside and inside. I was completely drained and exhausted from all the (attempted) interactions.

In the days that followed, I told anybody who would listen that I was part of the group that is creating the newly revised EAL guidance. I felt extremely proud as I remembered the effort I exerted and the exhaustion I experienced. I felt they had paid off. I was so proud I failed to notice that I wasn't invited to any more sessions. After three months, the very detailed and comprehensive document was ready. A copy was emailed to me. I noticed that everyone's name was printed in the acknowledgement page. Everyone's except mine. And to cheer me up, I didn't pass the driving test for which I sprinted across London to make it on time for the practice.

I start a new job tomorrow. I've told myself that I'm going to put my fears and feelings aside and be a team player. I have read a book on assertiveness. I have read another on teamwork. I'm just hoping and believing that maybe...maybe, tomorrow, things might be a bit different.

Open Mic

So today is Sunday. I got to church in the evening only to learn that there would be an open mic session after church. I usually stress a lot after church when the comforting structure of music-sermon-prayer is stripped away and I'm required to ad lib through an unpredictable meander of social interaction. Groups form all around me and I'm unable to hold to one train of though due to the rumbling sound of  all the conversations sending me into sensory overload. When I was on my antidepressant drug, I could take it all in. It didn't make me the bubbly extrovert I wanted to be but at least, whilst on it, I didn't have the urge to flee from social situations.

I knew I would stay for a short while and leave at my usual time. Immediately after the closing prayer, I shot out to secure a place in the lounge. I found an armchair right next to the stage and I threw myself in it. On second thought, I stood up and moved away in case the armchair was reserved for the church leader or an equally important person. Instead, I sat on a large sofa in the middle of the room. But then, the thought of being squashed by people when the room becomes fully packed compelled me to relocate comfortably in a cozy corner next to a derelict electric piano on whose keys I stimmed frantically to regulate myself emotionally.

One bubbly lady whose name I haven't quite grasped came towards me. "You're so quiet!" I managed to hear her say amidst the brouhaha as the place gradually got noisier. An aura of anger rose steadily inside of me. I had to suppress it before saying anything for fear of spiralling into an uncontrollable meltdown. I closed my eyes, breathed in deeply. I wouldn't have gotten into this state if that was the first time I'd had this sort of conversation. But it wasn't. One reason I avoid social groups is that I always get to the place where people judge me based on my inability to 'gel' with others, and they often ask me publicly 'why are you too quiet?'

" Is that a problem?" I managed to ask slowly and as politely as I could. One wrong move and this woman might find herself paying for all the hundreds of people who had previously dragged me into this depressing conversation and left me anguishing in low self esteem. She answered wisely by saying that she wasn't bothered, told me she used to live around my area and asked me if I wanted to perform something during the open mic.

It wasn't something that I had planned but it could be for me that one moment that reveals to the world the treasures in people that doesn't show in their outward appearance. It could be my Susan Boyle moment, my Paul Potts moment... Or more appropriately, my David and Goliath Moment. I said "ok". And the adrenalin rushed in.

I haven't attended the First Baptist Church for long. Just under a year. Having had a vast experience of leading congregations in worship, I wanted to join a church where I could help with leading, playing the guitar and co writing songs with other musicians. Unfortunately, previous experiences had shaped my thinking such that I had now become scared of people because I could never tell their intentions. After overcoming my reservations, I had agreed to speak to one of the leaders regarding my desire to join the music team. He took my email and said he would create a login where I could find all the song sheets and the duty rota for each Sunday. I never heard from him in that regard. Months later, resigning to the fact that I had been forgotten, I would pick the guitar after church and quietly sing to myself. No one ever took notice of me. One day someone did. The lead pastor. He spoke to one of his leaders to get me on the team. Again, my details were taken, I was briefed about the login and I faced an anxious wait, occasionally bringing my acoustic guitar to their rehearsals and playing awkwardly alongside them from the back of the room...until one day this same leader approached me (I was so excited, it felt like ' FINALLY') then he continued: " We would like you to operate the lights for us while we sing on stage..." I smiled and maintained my decorum but he had killed something in me and I struggle to look at him in the face ever since.

 Back to the noisy room, the woman called one of the organisers called James to tell him I would be performing . James is a leader in the church as well. He had a guitar and asked me what song I would be playing because they needed to know which song so that as soon is I took the stage I would be ready to go. After a brief hesitation, I told him the title of my song. " It's a worship song" I exclaimed. James' face changed. I couldn't read the expression but I trust my senses that there was a significant change followed by a disturbing silence. I thought" is a worship song not appropriate for a church open mic session? Had the congregation had enough of religious songs for the night? I would have sang something else if I knew how to. But contemporary worship was all I knew and all I listened to. It was my special interest and my obsession.

This was my first open mic ever so I was absolutely clueless about the unspoken social rules that governed the event.

People would climb the stage and sing popular songs that everybody knew, except me. There were loud garage raps and R&B songs and everyone seemed happy.

In the meantime, I was a nervous wreck. I hadn't sang publicly for almost 2 years. I was worried about the key in which I would be singing. I even asked for a capo. Will I get the right balance between the high and low notes? I found a perfect key and I had to hum it throughout before I forgot it... Unfortunately, I had a moment of distraction and out of my mind went  the key.

The more I heard people sing the less I felt daunted. But I still suffered from high levels of anxiety characterised by an intense headache, hammering at my temples, extreme nausea and butterflies in my tummy. I didn't find it funny at all.

What if I forgot the words of the song? For the umpteenth time, I brought out my phone and tried to decipher, in the poorly lit bar that doubled as a church lounge on Sundays, the lyrics of the song which had previously been second nature to me...

After each singer, I would anticipate the sound of my name. My heart would skip a beat, then trod on frantically, nausea would rise and I would stim some more on the mute piano until a name is called. By this time it was long past my regular home time but I was staying late uniquely because this seemed to be the last chance I would ever have to communicate to them what I could really do; it was now becoming obvious to me that being in my late 30's, bespectacled, slightly balding and carrying some bulging baggage around the middle area, I didn't look like one of the "in " crowd anymore. I had to really demonstrate an outstanding level of musical acumen for me to be welcomed into this team of young and attractive people.

My heart pounded throughout the session. People had started leaving. I would have left if I wasn't singing. I stayed and waited, song after song, minute after crushing minute... Until the MC announced "And now for the finale!!!" That's me, I thought! I felt sick... For me, the threat of failure is as horrible  and as intense as the prospect of success. The only difference is that the fruit of success is more palatable to the heart and to the self esteem. 

As I encouraged myself by saying " This is your time to finally shine", another name was mentioned and my heart sank, free-falling into an abysmal place of melancholic misery.

" How could this happen?" I thought to myself with utter disbelief? I would have cried if I could. I had been through a period of high anxiety only to plummet into deep depression in such a short period of time.

The lucky person who got to have the mic was the rapper who had first opened the floor. This time, his rap had the name of the church in it and the audience was required to participate in a call and response. After a while I couldn't hear anything...the place went quiet, except for the dancing and raising of hands. All I could hear was my heart beat, and a loud ringing in my ears. I felt like there was fire in my belly. I wanted to scream. I wanted to throw up. I knew I'd had enough and it was time for me to move on.

As I stood up, I saw James. I avoided his gaze, picked up my bag and coat and made my way out, confronting the  confluence of the congregation and finally making it to the open air. The indoor-outdoor transition wasn't really thought through so it hit me like a blow. The cold wind. The noise of cars. I felt a deep sadness.I was gutted, disgusted sick and tired of life. I felt I had overstayed my welcome in church and on Earth. I wish I was still on my medication. On them, I could handle disappointments without a thought. Without them, I faced days and weeks of my brain replaying this excruciating event. I wanted to cry it all out but I couldn't. I felt very embarrassed, wondering how I was ever going to get all this behind me. Wondering how I could survive in church after this experience.

As I made my way to the underground train station, I thought of how I'd lost all my spoons to that open mic session and I asked myself how on earth would I find strength to navigate through the week. I felt drained. I wished I could have the week off to recover. As I stood on the platform, I spotted a group of people from the church. Two of them had sang a duet during the session. I didn't need a reminder of the nights events so I moved away from them to the other end of the platform as I thought to myself: " since I can't cry or share this with anybody, I know an ideal way to digest these pent up feelings... I'll just write it in my blog. I just might feel more relieved..."

To disclose or not to disclose

Upon learning that I had Asperger's, I thought to myself: ' I now understand myself and why I act and respond the way I do. Now all I need to do is to let everyone know so that they won't judge me by what they see but rather with an understanding of the reasons behind my response to my environment. They would stop thinking that I'm a bad, cold and unfriendly person simply because I have very little facial expressions and struggle to generate small talk. Now where do I start?"

I started with my sister, showing her the results of my Aspie test, then to two people I call my best friends. The response was rather positive, though one of the best friends was a little bit skeptical about my disclosure due to our friendship being limited to occasional texting and not seeing much of me in real life to assess my autistic traits first hand.

 It was at that time I decided to leave my post in the secondary school to pursue a Masters degree in Social Work. I emailed my former lecturer, Helen, for a reference and she willingly provided one. We got into a discussion on why I wanted to leave teaching. Having previously confided in myself and her small group of students that she was coeliac, I felt I owed it to her to open up as well and trust her with my issues. I spilled the beans on a lot of issues that was making my current work increasingly unbearable and ended by disclosing to her that I' ve just found out I'd been living with autism all my life. To my utmost surprise and dismay, that was the last I  ever heard from Helen. It's been 2 and a half years since that email.

Another person I spoke to was the Minister at the church which I attended at the time. Church for me was an intense social struggle. The hardest part for me was when we had to "turn to your five and shake them by the hand and interact with them. I always found myself alone with everybody quickly getting into pairs and I being the only odd one out. Though I was an adept musician and a passionate worship leader I made no friends in the church except for one person... And the children who were not hard to please and accepted me the way I was. The response I was getting from the congregation made it uneasy for me to continue my regular role as a song leader so I asked for permission to take a sabbatical leave. 

I felt that if the minister understood me, he could help the congregation to understand autism. Wrong.

I held the meeting with the Reverend minister on a Friday to tell him I had  a form of autism that made certain social situations and social places such as church very difficult to deal with. I felt that is would provide a perfect explanation for all the traits they had seen in me. Being unable to read his intentions due to mind blindness, I took his words to assume that this revelation was a huge learning curve  for him for which he was very grateful and that he would do some more research on it to be able to educate the congregation and to make some accommodations for me.

On Sunday, I learned that I had been officially ousted from the worship music team and the one person who was my only friend in the church had not only endorsed my sacking but had also been awarded a position of prominence in the  team and for a year, I painfully watched him do what I was meant to be doing. It felt like the highest form of betrayal. Like your best friend going out with your ex who dumped you and still expecting the friendship to remain the same.

I wanted to leave the church and put behind me all the hurt and discouragement I had endured but I was scared it would fuel more rumours and gossip. I felt all eyes were on me so I tried to act all happy during the singing sessions to avoid entertaining the many people who were eagerly anticipating this unfriendly jilted church singer to break down and cry.

I had mixed responses from friends and family. One amazing family member confessed to me that my struggle was similar to theirs and upon taking my advice, they had taken the Autism Quotient test and had an equally high score. Others appeared supportive as soon as I made the disclosure, then they slowly teleported themselves out of my life.
Here are a few disappointing responses I got :
"...stop making excuses for being unfriendly and unsociable."
"...you have to make an effort!"
"You have to discipline yourself!"
" I'm a spiritual person. This aspergers thing doesn't sit well in my spirit..."

On the other hand, disclosures are not all negative. After contacting the National Autistic Society for some advice, I made a formal disclosure to the uni where I was studying . I was afraid they would say that I wouldn't be allowed to continue on the course because of the social aspects of the trade.

My tutors' response restored so much faith in humanity. 

They believed me.

They reassured me that they would help.

They did help by making accommodations and giving support.

Thanks to these, I was able to focus on the contents of the course and make the required progress to successfully pass the course.

After my course, I applied for numerous positions, ticking the Autism/ aspergers box in the Equal Opportunities section. I never got any invitation, in spite of my qualities and qualifications. Then I stopped ticking the box. Then I got an overwhelming response from frantic employers flooding my inbox to employ me. I took one of those jobs. Survived a month, and another. Then I quit. Through my resignation, I felt I had let some people down...and made some people's day. But best of all, I had preserved my sanity by repositioning myself.

Should I have told them I had aspergers? How would they have reacted to me? Would they have supported me like my tutor did? Would they have rejected me like the reverend? For people on the spectrum with Mind blindness, the professional life  and  social life can be a real minefield and one of life's uncertainties is to disclose ...or not to disclose.

Phagophobia- the fear of swallowing

I had just visited my week old baby at the hospital. She had been brought home 5 days earlier but developed  a high temperature, hence her return to the hospital. I hadn't eaten all day as I stayed with my wife and the baby...I finally got home, having been 'thrown out' by hospital  night shift staff at the end of visiting hours.

I got into my flat, famished and feeble, frantically prepared a heavy meal to make up for the breakfast and lunch I never had, ate and went to bed. Then it happened. That dream.

I had a dream that I was walking down a dark tunnel towards a blinding light when suddenly, I heard my wife and newborn daughter calling me, beckoning me to come back. I suddenly awoke to find out that I was choking on regurgitated food, the chilli burning the top of my throat. I could hardly breathe. I tried to inhale but all I did was to wheeze and cough until my airway was clear, and after the initial terror, I gave no thought to it.

A few days later, as we were having a family meal, I realised that I was struggling to swallow my food. I will try to swallow, then hesitate. 

Eating was terrifying experience for me. It was like trying to jump off a cliff. You'd bend your knees, see the depth, run out of courage and then fail to jump. It was as though my brain had told my body to swallow and my body said "no", a split second after the swallowing process had begun.

Sometimes, I actually choked because part of the swallowing mechanism failed to do its job. I would push the food down my tongue into my throat, expecting my wind pipe to close automatically, bridged by the oesophagus, which would in turn receive the food. Wrong. The food would touch the wind pipe and a flood of adrenalin would engulf me; my heartbeat thumping like an upbeat bass drum in my chest as I would be electrified by a panic attack, which I felt as a cold or heat wave (not sure which) in my scalp and tongue.

Unfortunately, this was not the first time in my life I had experienced this fear of swallowing. When between the ages of 9 and 10, I suffered this same episode. I was so terrified that I stopped eating and lost a lot of weight. I honestly believed I would die choking on some food. A devout Catholic at the time, I would often be seen making a sign of the cross before attempting to swallow any thing, convinced that I was living my last moments on earth. I would also cover my ears in case someone spoke or said something funny to make me laugh midway through my swallowing.

The family doctor could not understand my predicament and, thinking that I had simply lost my appetite, prescribed a sweet- tasting hunger inducing multivitamin syrup which was to be sprayed three times a day down my throat. My sweet tooth accounted for my religious adherence to the medicinal course. However, only time healed me from this strange symptom.

Now, I was 32 and the condition had suddenly come back. I needed a lot of water... One litre per meal. Without the water I would forego my food and chose hunger over risk. I once went to an 'all you can eat' Chinese buffet, having forgotten that I had swallowing problems. I put the first spoonful in my mouth and chewed, chewed and chewed some more. I couldn't swallow it. It was stuck in my mouth. All eyes were on me. I was hungry but I couldn't eat. I hadn't bought water. I would have spent a lot on water if I had to eat. I wish I had bought a take away pack instead.  Whenever I tried to swallow, my hands would fly to my ears to shut them... An action carried over from my childhood, out of context but had become an automatic reflex after 22 years of dormancy. After several trips to the bathroom to drink from the tap( which I wouldn't normally have done, ) I ended up eating half of the meal on my plate, then walking away.

It got a lot worse until I lost some more weight. My attempts to swallow was an ugly sight to watch, and an ugly sound to hear. My cheeks would puff in and out as the food made its way unsuccessfully to and fro the front and back of my mouth whilst I made exaggerated hand movements. You could hear the squelching sound of food mixed with water being churned in my buccal cavity. Initially, I could swallow my food by drinking any liquid. Then it got worse. I could only drink water and nothing else...

Later I realised that the less I focussed on swallowing, the better I could eat. But anytime I was reminded of my swallowing issue, it all came back again.

Statements like 'you don't like my cooking' or ' has your swallowing issue reappeared?' would trigger a comeback of the problem. Also, whenever I was placed in a social situation, like eating at a table in public, where I was supposed to be making conversation or answering questions, I would find it impossible to swallow the food I had inside my mouth. I would sometimes have to get rid of the masticated food.

Fortunately,  I did something I couldn't do when it happened to me as a child in the 80s: I went online and researched forum after forum until I finally had a name for the condition and found hundreds of people who exhibited the symptoms I had. It was called ' phagophobia- the fear of swallowing or (in rare cases the fear of being swallowed.)

I went to see my GP who thought there was a swelling in my throat. But I explained to him that there was no obstruction and no pain. Just intense paralysing fear. I explained to him that it was a bit like stammering/ stuttering. The sufferer would make several half- baked unsuccessful attempts to say a word then finally, after the umpteenth attempt, they would finally manage to say the word. The success of this exercise wouldn't have a pattern, it is a bit like playing Russian Roulette with your voice. You don't know when you will get it right or how many times you would try , and fail. This was exactly what I was facing. However, it was not with speech in my case. It was with swallowing my food. The only impediments to the food going down were my mind and my panic attacks.

" You need Cognitive Behavioural Therapy, "said the Doctor. "That is not available on the NHS." That ended my search for a medical intervention and I relied on self-help strategies to overcome the problem. It is not an anatomical problem. There is no pain involved however, the fear is intense. It is an extreme anxiety problem, a phobia. I still have it but it very rarely occurs these days. I think it's gone...I can't remember the last time I experienced it. This phenomenon usually follows a choking incident, either witnessed or experienced by the sufferer.

Here are a few tips that have helped me:

- Move away from any source of anxiety during meal times ( I moved away from interrogations, plans, discussions, bills and bank balances, disturbing news on TV ). These have been found to tighten my throat.

- Provide plenty of water( even if it won't be drunk) this provides reassurance for the sufferer.

-Give them some privacy-( Being watched put me under enormous pressure and I would stress eat..stuffing my self with food, only to realise that the pressure is preventing me from swallowing. Then comes the trip to the toilet, where I would have to discard the food.) I found that eating in a room all by myself relaxed me a whole lot more.

-Monitor them: having someone to act as a backup is an immense relief. Be ready to intervene when you feel they are choking or turning blue. Learn and practice the Heimlich  manoeuvre...just in case.

- Don't force them to eat all their food. A little bit of food eaten is a huge milestone. Pushing it further would trigger further anxiety- vicious circle.

-Provide an indirect distraction to enable them take the focus away from the swallowing process.(TV) but do not engage them in a conversation.

-Allow then to stim, speak to themselves, cover their eyes, mouth or ears as they give it their all to swallow their food.

-Celebrate their victories- never underestimate the huge effort they put into swallowing that spoonful we all take for granted. Reward them with ice cream,milk shake, custard, jelly or a drink. 

-Avoid denial but be reassuring.- they have the irrational conviction that they will choke to death if they try to swallow their food and the swallowing mechanism doesn't complete itself. Don't let them feel that you don't understand them. They will feel even more vulnerable.  Don't tell them that it won't happen because it would have probably happened before and they would lose trust in you. Instead, adopt a "together we will conquer that fear" approach.

Getting diagnosed (part 2)

This is the concluding part of last Saturday's post describing my desperate campaign for an official diagnosis.

 Eight months had passed by, and a myriad  of major changes had occurred in my life:

I had a new baby, making me a father for the second time in four years, I'd finally passed my practical driving test and I quit my job of five years to further my studies, a move I'd always been scared to make.

Suddenly, things started to plummet for me spiralling to a windfall of chaos which was beyond my control. I had pressures and problems in every single area of my life, leaving me clinically depressed. I was behind on my readings and assignments. I experienced minor disappointments in other sectors of my life which had major effects on me. I used to think a lot about ending it all. That is when I made a third attempt to seek help. At the same surgery. With a DIFFERENT GP this time.

Dr D was much younger than the previous doctor, though slightly balding. I spoke to him about my desire to get diagnosed, giving him valid reasons why my life depended on it. He listened with intense compassion, punctuating my sentences with an occasional "Awwww". That's how I knew he cared.

 He knew from the records that I'd been through the process before and was not successful at getting a diagnosis. I told him I did not have the means to seek a diagnosis privately and that a lot depended on my acquisition of this document. Furthermore, I confessed to him my fleeting thoughts that had doubled in frequency over the past few weeks. I found it hard to relate to my colleagues in my work placement. I wasn't confrontational or anything. I really liked them. They were a nice batch of people. I did whatever I could to support them. But there's this feeling of not belonging to most groups that follows me all the time. Also I was very quiet and mostly withdrawn, intently confused by all their social interactions in the staff room. My failure to engage them in a conversation and small talk like every other human being resulted in some expression on their faces that seems consistent with grudge and resentment. I felt under a lot of pressure. Fleeting thoughts. Again. 

To make matters worse, I had an issue with a very vocal member of staff who thought it helpful to publicly criticise my work in an attempt to achieve goodness knows what. (Earthlings call that"constructive criticism" in spite of the destruction it creates. I felt I should add it to a Manual of Absurd Terms alongside the likes of "friendly fire".) 

This last problem with my colleague compelled me to seek help before it was too late. On the surface, I appeared unfazed, smiling, and passive but no one could have foreseen the inner storms that ravaged my whole being.

 I requested that I be put on the drug I turned down months earlier. That is how I got on  a 10- month Citalopram (Celexa) course and a weekly Cognitive Behavioral Therapy session. I trusted Dr D so much that, for months, I missed what a neurotypical person would have discerned within the first few minutes of meeting him: he had no interest in securing  a diagnosis for me.

 I once walked into his office only to learn of the refusal that I be granted an assessment leading to a diagnosis because "I wasn't suicidal". Once again, I was baffled beyond words. He knew of my thoughts. That was why I was put on Citalopram in the first place. Why couldn't he tell them? I opened my mouth to voice out my protest but I felt a tightness in my throat resulting in a type of"glottal stop" that prevented the emergence of word and sound. Simultaneously, I seemed to undergo a cross between a  memory lapse and a disconnection between brain and body. I had no mental script ready for this unforeseen twist. My over-analytical mind worked out that very strong emotions and speech could not function concurrently within my central processing system. Finally, I was allowed 2 words by my brain: " O.K., thanks." And I was out sooner that I expected.

 I kept taking the drug, which was the best thing I'd ever done that actually addressed my fears and low episodes. I saw the GP weekly, then fortnightly, then monthly, before I decided I'd had enough of this useless trip. I haven't seen him since the summer. I also attended a completely useless CBT session for a while until I went on holiday with my family in the summer and missed one session in the process. I was quickly discharged. Thank goodness. It was a complete waste of time during which they tried to make me like football so that I could join in conversations. Finally, after a few disagreement with relations regarding their perception of antidepressants, I went off the drug. I tapered off by taking half the dose for 3 weeks, then the same dose every other day and one beautiful morning, I made the decision to go cold turkey, anticipating major withdrawal symptoms. Nothing of the sort happened with the exception of slight dizziness whenever I looked sideways, and the return of the low moods I was born with. 

This concludes my post on getting diagnosed. It is an unfinished post because I'm still in the active process of seeking an avenue to getting diagnosed...