CHAPTER 1
SENSES ON FIRE
Living in a small town, our life was simple. Every day was predictable. The highlight of the week was the family trip to church with a chance to dress up in our Sunday best. Although this idea was appealing to my two older sisters it was problematic for my brother and me. My brother hated getting into a suit. He wanted to dress like the rock stars whose music he listened to in secret. By the way, I was the only one who was privy to his dark secret, because we shared a bedroom or rather an alcove. I hated dressing up and going to church mostly because I am an 'Asperger's kid" or that is what everyone called me. I think they forgot that I had a pretty name. I hated the Sunday dress. Everything, from the label that scratched the back of my neck, to the fabric that felt like ants were crawling on my body, irritated me. I could not bear the screechy sounds that came out of the old church organ or the voices of the ladies in the church choir which reminded me of cats, whom I despise with a passion. My response to worship in song was to clamp my palms against my ears, close my eyes tight and rock my body from side to side. Embarrassed my mother would try to gently pry my hands away. The more she tugged, the more agitated I grew. I would then bite my lower arm and jump about screaming creating an even bigger scene.
I have a collection of sensory 'issues'. When my senses get an overload, I crash with a bang. I am insufferable at these times, repeating actions that are unacceptable or irritating to others, in a frenzy. As a kid my parents were clueless about my disorder. I was given time off and sent into the punishing corner a million times; I am exaggerating of course! This made me go crazy and my mum crazier. She would rant and rave and tear hair off her head. Dad was my savior. He would shake his head, wink at me and carry me away. I loved it. Dad had learned long ago that arguing with mum when she was in a 'mood' was a losing battle. He also knew that if he held me tightly in a bear hug, I would relax and calm down faster. I know that mum and dad made it up later on, as they sat on the couch all huddled together watching a television show. The television set was donated to us by a kind neighbor when he purchased a new one for his kids for Christmas. This was perhaps the only luxury in our home. We were permitted to watch programs chosen by mum after all the school work and chores were done. She used to often say that 'television is a necessary evil, to be indulged in occasionally'. I never really understood what she meant because she loved watching her favorite programs.
Talking of schools, I went to five different schools during my short life time. I was a puzzle; school staff could not solve. Although everyone was quick to agree that I was different they expected me to follow the herd, and to do it well. I was not given any concessions. I was supposed to fit in to their agenda. It didn't cross their minds that they can try to fit in to my agenda as well. Am I making sense? Let me explain it a bit more clearly. These days I hear of placements and catering to special needs. These concepts were unheard of when I was going to school especially in my neck of the woods. I graduated from high school at the ripe old age of twenty years. Speak of being ancient! I was a dinosaur as my brother often reminded me. I think he got bullied for my mad cap behavior; poor kid. Even more embarrassing was my date to the graduation ball. The unfortunate guy, Simon, was considered a 'slow learner'; as slow as a snail and older than me. Everyone who paired us up thought they were doing us a favor – that we were too thick to 'get it'. We understood what was going on around us in our own ways, but we were also powerless to change it. What alternative did we have? We had to either go to the ball together or stay home being pitied by everyone. Mum was worried that I would go bananas with the loud music, chatter and flashing lights, commonplace at such parties. But to everyone's surprise including mine, I had a lovely time and so did Simon, at least he said so.
Often people ask me "what it is like to live with Asperger's?" I can tell you it is not a smooth ride. It was a bumpy ride not just for me but for my whole family. As my siblings grew older, they however learned to smooth things out for me, rather than aggravate. They mastered this skill so well that they turned out to be epitomes of diplomacy. Both my older sisters are engaged in diplomatic missions whilst my brother, God bless his heart, is the most sensitive and wonderful teacher serving in Africa. His students just worship the ground he walks on. Mum and dad also work tirelessly to increase awareness and raise funds for different charities that serve the disabled community.
I think making friends is the toughest task anyone with disabilities faces. Most people; children and adults, pity us. We attract pity like magnets, but few friends. So, when people ask me the question "what has it been like for you?" I know I cannot give a simple answer. Let me try anyway. I cannot make friends easily nor hold on to them for very long. I put my foot in my mouth, and shoot off something totally different from what my brain is dictating. Repairing the damage makes things worse and I feel like I am spinning out of control. I cannot live with people. I feel overwhelmed with their smells, sounds, body language, ticking brains, digesting stomachs and emotions. Yes, I hear, feel and see things you do not even consider. So, I am a loner, but not in a sad way. I like my company. It gives me time to think of those things that seem alien to my peers; which make them think I am quirky. As I walk in the gorge and spot a butterfly, I sense the butterfly's feelings, its thoughts and its expectations, as it flies to a flower and gently hovers before daintily placing its feet on the delicate petals. As the butterfly gently rubs its nose savoring the beautiful aroma and enjoying the tickles, I know it is asking for permission to drink deeply. I am fascinated and drawn to the reverence, gentleness and love that surround these acts; rare characteristics in humans. Humans are prone to cunningly exploiting the weaknesses of others, manipulating others to meet their wants and deriving pleasure by laughing at others' shortcomings. I shudder as I unconsciously glimpse into human souls and secret places of their hearts without permission. Filled with confusion, I am unable to strike a conversation, no matter how friendly the exterior presentation may appear. I even run away, giving the impression that I am the 'problem'.
The most rewarding moment for my parents, in my life of 'struggling student' was my acceptance at a college. I remember mum seating me under the maple tree in front of our house holding my chin and looking deep into my eyes and saying "YOU did it". She always believed in me. She did not know how, why or where? But she did. The first thing I did was to move out of my parents' home because I wanted to learn to live alone. I wanted to do more things that would make my mum proud of me. I started off by sharing an apartment with two second year students, guys whom my parents believed would be more mature in their outlook to life. The apartment had three bedrooms and two bathrooms. The boys promptly agreed that I can have a bedroom & bathroom all to myself. They even went to the extent of hanging boards which said "Hers" and "His". I found sharing a living space with these guys easy. They tried very hard not to encroach into my space, unless invited. They honored my need to be a recluse and were willing to socialize when I consented. Being international students of Asian origin, they treated me with great respect. This was quite a new concept for me. The boys were also excellent cooks. They prepared the most amazing vegetarian dishes which they generously shared with me. I am an average, moody, lukewarm, cook. So, we had a pact. I agreed to buy the groceries and wash the dishes, when they reminded me, in return for cooked food. Soon, I became a vegetarian too. And guess what? I lost weight even without trying. I owe my healthy eating habits since then, to these two guys.
We also had another agreement which I honored diligently. As per our agreement I had to make myself scarce when they were skyping home. They informed me that their parents had very traditional views regarding the male and female species. Therefore, they would be horrified that I had moved in to an apartment with two boys and question my motives and my virtue! They jokingly informed me that although their parents had implied that they could sow their wild oats, they were not supposed to advertise the fact to anyone, least of all their parents. I laughed until I almost died. I did not understand and I was not going to even try. They were good guys and I felt safe. I trusted my overly fine-tuned instincts. That is all that mattered. My parents respected my decision and it was a happily ever after agreement for three years until the guys graduated and went back home to marry the girls their mother's had chosen for them. I did not bother to keep in touch with them and they have not reached out to me. But, the time I spent in their company is something I will always treasure.
Life at college was very different from school. I was expected to be independent. I had to make my own choices and decisions. It was also heartening to note that my differences which perhaps limit me when attempting academic tasks, were finally recognized. I was granted six years to complete my undergraduate studies instead of the usual four. So I took fewer courses each semester. I was grateful for these concessions and made every effort to meet deadlines. Deadlines are the deadliest for me. Pardon the pun! My brain refused to handle the pressure. It was something I worked on, with my counselor. That is the other good thing that happened to me when I got to college. I was allocated a lovely counselor, who whilst being emotionally impartial, helped me to work out my own answers reminding me that I must take responsibility for the consequences of my actions. She taught me to see myself as a worthy and capable person. I learned that "different" did not equate to "bad" or "crazy" or whatever tag people attached either overtly or covertly.
Ah! now comes the difficult part. Boyfriends! Serious relationships! I am now on boyfriend number three. Boyfriend number one lasted six months. We had similar interests and loved quirky clothes. But he finally could not handle the amount of talk that escaped my mouth although he loved kissing me into silence. I did not blame him. It was one of my weaknesses that needed to be ironed out. Boyfriend number two was experimenting having a girlfriend. Recognized as a 'gifted kid', he definitely was not gifted in making friends. Surprisingly, after the initial awkward moments of getting to know each other we discovered we had a lot in common in that department. But intellectually we were poles apart. Even though we were great lovers, eventually he felt insulted that I could not listen to his explanations of the cosmos in total rapture. My reaction, which I could not hide, was to yawn endlessly and finally fall asleep. Our conversations, or rather his monologue, instead of being a stimulus for more conversation became a natural sleep inducer for me. Ironically, I slept better during our relationship than I had ever done before. But my sleep therapy did nothing for number two's ego! So, we broke up after one year which was not bad for my track record. After almost fifteen months of hibernation, I met boyfriend number three. We have been dating for almost six months. I have tried to avoid the deadly pitfalls, with help from my counselor. I also introduced Rob to her. With our counselor's help we have ventured to try out different things that scared us in the past like swimming, rock climbing, horseback riding and roller coaster rides. It has been fun facing our demons together, with neither one impatient or condescending. I have also mastered the art of sitting through live musical shows, which Rob loves, without clamping my ears.
From Small Town Girl To City Girl From Asperger's Kid To College Graduate From Loner To 'Working on Relationships' My guardian angel is watching over me!
CHAPTER 2
MOVING UP!
I was born in a remote village on a lovely spring morning. It was a day of celebration and sadness. My mother passed away as the midwife brought me to this world. Even as the reality of her death hit grandma, she was soon dealt another blow. Dad disappeared. I was left with grandma who was too old to care for someone else, let alone herself. Grandpa had died a few years ago. Mum was their adopted kid. Their only child, a son, had died young. Grandma and grandpa had taken a long time to reconcile to his untimely death. They had not planned on adopting. But when their pastor had brought to their notice the details of an orphaned girl they had decided to take the plunge.
Mum was a rebel. She was life and energy. She questioned every little thing and never conformed to social norms. She laughed, she danced, she sang and she ran like the wind. She was a 'free spirit' not wanting to be tamed. She was always seeking the limelight even though her audience oftentimes was the wild flowers, grass, cows, hares and grouse. She wove a web wherever she went. Even grandma and grandpa could not be angry with her for long. She knew how to wrap people around her little finger.
Dad was a traveler who was passing by. He got stuck when a storm blew and he had nowhere to go. He was not overly handsome. But he was learned and a gentleman. Grandma suspected that he was running away from something or someone, although she never found out his story. Once mum set about charming this city boy, purely out of boredom, he had no chance on earth to leave. So, he stayed behind. And I came along.
Grandma used to say that I have some of my mother's charm. When I look in the mirror and see my cheeky grin, big eyes and crooked nose, I kind of agree with her. I have no photograph of mum or dad, so it is only grandma's words and the letter she left behind that helps paint this picture in my head. My logical mind says that I may be dead wrong. But I am sticking to my story for the moment.
I do not know the exact date on which I was born. Calendars were not a top priority in Grandma's home. My birth certificate that was subsequently handed over to me by the pastor indicates that I was born on the 8th of May, 24 years ago.
A few weeks after I was born, grandma realized that all was not well with my legs. They were floppy. They did not kick and dance like babies usually do. Grandma voiced her concern to the nurse who visited us every month. The nurse suggested that grandma take me to the big hospital in the city. She also knew that her suggestion would remain just that since grandma would not and could not leave her mountain for anything in this life.
I grew under my grandma's love and care. I did not walk. I shuffled around on my bottom. Grandma, a very practical woman, made a cushion I could sit on so that my bottom would not be sore. She enlisted Jack the odd job man to make me a toilet seat and a wheelchair with small wheels that I could roll onto and wander outdoors. I loved the moorland hills with its rocky edges jutting out, the foaming streams, the gentle breeze that turns chilly in winter, the mountain air with a hint of wild garlic, the riot of color of purple heather, bilberries, cranberries and white and pink roses, the majestic beech trees, the red grouse with its reddish brown plumage and "Chut! Chut! Chut!" call, the shy brown hare with its yellow-brown coat and black tipped ears and tail bobbing in and out of the grass as it played with its companions in spring, smells of grandma's cooking as it wafted through the chimney, her stories and best of all her songs. Even to date, I only have to shut my eyes to hear grandma's sweet voice. I used to believe that I lived on top of the world because the sky seemed so close. I often thought that if I could stand tall I would be able to touch the clouds that appeared like balls of cotton wool, shut out the strong rays of sun that blinded my eyes at noon time or stroke the rabbit who lived on the moon. Although unable to walk I lived in an idyllic world. It was a laidback life. There was no rush for anything. Our clock was the sun, the way the shadows fell and the moonlight. On cold winter days we huddled round the fire, watched the snowflakes sway and dance, listened to the pitter patter of the rain and sipped warm broth.
But my idyllic world crashed the day grandma fell ill. At her request the pastor placed me in a residential facility along with other children with physical disabilities, far away from the mountains I loved. I was told that I would be taken home when grandma got better. I did not believe this story, because something deep inside me insisted that this was the end of that chapter in my life. Most of the children at the facility had been there for a long time. They taught me the rules. There were the seniors who bossed the younger kids and the juniors who toed the line. We served our food according to seniority. So often I got the smallest portion or the least. I grew up fast. To survive this regimented life, I had to learn and follow the rules. I missed grandma a lot; her smell, her singing, her warmth, her cuddles, her serene smile. She passed away six months after I was placed in the home. I was not taken to her funeral. The pastor in our village visited me with a few things from her; the letter she had asked him to write which contained facts about my life, my mum's favorite scarf, dad's handkerchief, grandma's bible and grandpa's pipe. I was heartbroken, lost and alone in a strange, unfamiliar world.
