I’d walked past the building many times before, but hadn’t paid it much attention.

I was about nine years old, and at a loose end because my best friend wasn’t at school that day. I was wandering around the schoolyard looking for an alternate playmate, when I noticed the bricks on the corner of the sports-equipment shed. Rather than having neat 90-degree corners, they stuck out at an angle, creating a row of triangular ledges.

I remember looking at the ledges, and putting the toe of my shoe into one of the gaps.

The next thing I remember was a small overhang on the roof, which was a bit difficult to pull myself over, but I did. I was pleased at having done something new, and elated to have climbed so high off the ground with nothing but my own strength.

My pride was short-lived, because soon there was a scream. I looked up, alarmed that something was wrong. Then, there was another scream, and someone yelling about a child on the roof. It took a moment to realise that she meant me. Kids and teachers gathered around the building, faces a mix of surprise, amusement, and concern. I called out that I was fine, suddenly feeling guilty for causing such a fuss. When I was ordered to get off the roof immediately, I obediently walked back to the edge.

The only problem was, I couldn’t figure out how to get down. My legs flailed below the overhang, too far from the wall to stand on the ledges, and too high up to jump. Somehow the brick ledges didn’t seem to protrude as far out as they had before. I eventually conceded defeat, though I knew it undermined my case that I was perfectly fine and everyone else was over-reacting.

Someone ran to find the school PE teacher. When he climbed up, I reluctantly clung to him like a disgruntled koala. He continued carrying me through the squawking crowd to an empty bench on the far side of the playground, where I was interrogated by teachers who wanted to know why?

Looking back, I can now see that they were concerned about my mental health, and were wondering if my action was a call for help. At the time, though, the questions were confusing. Unsure what to say, I used a defence still popular among offenders who are guilty of the crime they’ve been accused of. I argued that if buildings weren’t meant to be climbed, they shouldn’t hang around in playgrounds looking so beguilingly climbable with their suggestive corners. After all, it wasn’t my fault that the ledges happened to be exactly the right size for nine-year-old feet.

I completed my argument with an age-appropriate pout.

#

There were a few other instances as a kid where I got in trouble for impulsively overstepping the line.  Once, I swung on a chain that turned out to be a fire alarm. I got called into the principal’s office at my Anglican school for trying to convert my classmates to atheism. For one athletics day, I painted myself in blue warpaint from forehead to ankle, and the under-17s 1500m race was delayed while teachers discussed if it was a violation of the school uniform policy.

Most of the time though, I was a total nerd. I loved school and took up every opportunity. I starred in my primary school musical. I won debates and science awards. I conducted a choir of 120 mostly-uninterested peers, organised bushwalks, and briefly joined the water polo team. I was at school for 7am aerobics practice or swimming training and stayed until dusk – rehearsing or writing speeches. Often, I’d cram extra activities into the smallest of breaks, reading novels while I waited in corridors, or jogging around the block while the other kids were changing from school uniforms into sports shorts.

In the classroom, I got good marks but was often restless. My favourite teachers gave me extra challenges to keep me engaged, and I loved them for it. Most tolerated me spending class-time writing letters, whispering to my friends, or reading ahead in the textbook.

A small number of teachers brought out my brattiest, most spiteful self. Once, after a geography teacher punished a friend of mine for something I knew he hadn’t done, I retaliated by harassing the teacher with deliberately obscure questions that were difficult to answer, successfully embarrassing him in front of the class. At the end of that year, he quit teaching to become a pharmaceutical representative, staying far away from obnoxious teenagers.

When I finished high school, I was awarded the prize for achievement across all areas of school life.

#

As school ended and adulthood began, I continued my busy life filled with learning, friends, exercise, and social activities. I opted to do two degrees concurrently, while working weekends in my dream job: at our local science museum, presenting kids’ shows in the ‘lightning room’ and planetarium.

Once I started fulltime work, I hopped sideways and upwards, accepting temporary contracts, or staying in a role for a year or two before moving on. I picked up new hobbies: joining a choir, hosting a community radio show, volunteering at a women’s prison, performing in circus shows, competing in triathlons, helping local refugee kids with their homework.

I was often tired or stressed, but loaded up on caffeine and buckled down to get the job done.  On busy days, empty cups and cans from caffeinated drinks piled up on my desk. One afternoon in my late-twenties, a colleague and I walked from our office to the convenience store around the corner to buy more sugar-free Red Bull, but there was none in the fridge.  “Do you have any out the back?” we asked the store owner.

“No,” he laughed. “You two already drank it all!”

#

I heard on TV that if sharks stop swimming, they die. I strongly related to those sharks.

I later found out the method of breathing was called obligate ram ventilation. The faster the sharks swim, the more water is pushed through their gills. If they stop swimming, they stop receiving oxygen. They literally have to keep moving to survive.

My friends told me I should slow down, and spend more time alone or resting. I tried, but whenever I had a day with nothing scheduled, I felt cranky and restless. I’d pick up a magazine and light some sticks of incense, determined to relax. Half an hour later, I’d give up, going to the gym instead or texting my friends to make new plans.

If I jogged, worked, or danced long and hard enough, I could sometimes reach a point of such exhaustion that I could happily sit down with a book for a while, or lie in the sun. Without sunshine, I had to keep moving – either physically, emotionally, or intellectually. Like the sharks, if I was still, I felt like I couldn’t breathe.

#

By my early thirties, things were going well on the surface. I had great friends, a great partner, an adorable baby, a rewarding job, and I’d been elected to my local city council. I was also chronically overwhelmed and sleep-deprived, as many parents are.

At the end of her first winter, our baby daughter caught cytomegalovirus – common among young children – from another child at her playgroup. She was sick with a fever for a few days. I caught the same virus, but never fully recovered.

For four days, my muscles became increasingly painful and weak, until my feet turned blue and I couldn’t move them at all. I was eventually diagnosed with Guillain-Barré Syndrome, a life-threatening neurological illness that causes the body to damage or destroy its own nerves.  My hands, legs and lower-abdominal muscles became paralysed, and I was admitted to ICU in case the paralysis spread to my heart or lungs.

Thankfully, it didn’t. I was treated with intravenous immunoglobulins, and within hours the paralysis started to subside. My nerves were very damaged but no longer under vicious attack, no longer unusable. I sobbed with relief.

#

After months of rehab, I regained the ability to walk and write, but was left with ongoing pain and weakness. I could no longer stand for long, or even sit on a stool, without collapsing a couple of hours later.

With limited strength in my legs, I couldn’t go jogging when I felt restless. With the new demands of parenthood, I couldn’t catch up on work in the evenings like I used to, or go to gym classes to air-punch or high-kick away the stresses of the day. I couldn’t organise my time in the way I had before, because large parts of my life were determined by the needs of my family and the physical limitations of my newly disabled body. There were few opportunities to quietly lie in the sun.

Life began to slip out of control.

I frequently felt overwhelmed, quickly pushed over the edge by common occurrences such as getting hungry, going to the supermarket, or hearing the noise of kids’ cartoons. Somehow, I also frequently felt under-stimulated, feeling restless in meetings, and rapidly running out of patience when playing with my daughter. My mental health declined.

I saw various healthcare professionals who suggested possible diagnoses that explained some of my symptoms but not others. I read about anxiety, autism, bipolar disorder, multiple sclerosis, post-traumatic stress disorder and sensory processing disorder. Eventually my psychotherapist said the four letters that changed my life, suggesting I might have ADHD (attention-deficit/hyperactivity disorder).

I asked my doctor what she thought.  “Well, yes,” she said, and referred me to a psychiatrist.

The psychiatrist sent me questionnaires to complete in advance, but after talking to me for twenty minutes, had already made up her mind. She explained that ADHD is caused by a lack of dopamine in the brain, and the solution was to increase dopamine to normal levels.

I was elated to have an answer.

#

Understanding ADHD as a dopamine deficiency helped me reconcile my own experiences with the stereotype of ‘naughty’ young boys that ADHD is usually associated with. I realised that I’d had similar traits, but had found ways to manage them, protected by supportive friends and family who didn’t mind that I was a bit weird.

At school, I had managed my hyperactivity by channelling it into co-curricular activities and doing extra work, either set by teachers or unapproved tasks such as helping the ‘naughty’ kids with their homework. Perhaps even then we felt an affinity that crossed the divide between Skater Boys and Choir Nerds.

I realised that when I got in trouble at school, it was usually related to an ADHD trait such as distracting my friends or being argumentative. Yet, ADHD traits also helped me avoid punishment.

“Detention at lunchtime today?” I once repeated back to a teacher. “Okay. Though, I’m meant to be teaching a group of juniors the vocal harmonies for the concert next week. Can I quickly go put up a sign in the hall, so that they’re not wondering where I am? Oh, tomorrow? Yes, there’s the interschool volleyball competition, but I’ll find someone to fill in, so that the match can go ahead?”

Talkative – tick.  Lateral thinking – tick.  Defiance towards authority – tick. 

The teacher grumbled and glared, then decided I wasn’t worth the hassle.

#

Brain scans have consistently shown that people with ADHD have brains that are physiologically different from people without ADHD. Yet, most descriptions of ADHD symptoms sound like a list of complaints written by people who consider themselves to be morally superior:

“They fidget and they interrupt,” says Mr Cranky, sighing and sitting back in his chair.“Not to mention being disorganised and absent-minded.”

“Exactly,” says his friend Mr Pompous. “They’re so reckless, and always jabbering away.  Thank goodness we aren’t like that.”

Aside from being highly subjective, these descriptions say nothing of the experience of having ADHD, only how they are perceived by those around them. An equivalent might be if someone arrived at hospital with a badly broken leg, but the assessment from the triage nurse was written purely based on the patient’s behaviours:

On arrival, the patient was crying in a disruptive fashion. They refused to walk and demonstrated poor conversation skills, requesting opioids and becoming impatient when these were not provided.

#

The actual experience of living with ADHD is stressful for most people, though some consider it to be a ‘superpower’ if they are able to organise their life in a way that fits with their neurobiology. The symptoms themselves are so broad and variable that they are difficult to explain, but there are metaphors that I find useful.

One is to imagine a traffic jam at a major intersection with no traffic lights. The cars represent components of brain function. There are a lot of them, but they can’t go anywhere, at least not easily or without risking a crash. Effective medication is like adding traffic lights, allowing thoughts and tasks to be focussed on and completed one at a time, keeping everything moving.

For people who know about computers, or remember the computers of the 1990s that struggled through basic functions: another metaphor is that a brain with ADHD is like a computer without enough RAM (random access memory). The software and hardware is all there, but without processing speed, requests to perform functions often lead to the computer getting ‘stuck’ and ‘freezing’, making it difficult to get work done.

Small things like tuning out background noise, remembering to run an errand later in the day, feeling the air conditioner blowing, all take up RAM – sometimes to the point where there isn’t much left to get anything done. Effective medication is like adding more RAM, so that multiple processes can run concurrently: the office worker can still talk on the phone even if they’re sitting under a vent, the parent can talk to her children at the same time as making sandwiches. They are no longer ‘stuck’.

#

By the time I was diagnosed, I was definitely in a traffic jam and low on RAM. I was ready to try something different.

I bounded into the pharmacy with my first prescription for ADHD medication, only to quit a few days later, disappointedly putting the tablets at the back of the cupboard. The medication was effective but I was too hyped to sleep. I tried to make the most of it by working until 2am, but by that stage I had two children who woke up throughout the night, then were awake again at sunrise. Surviving on four hours sleep was not a sustainable option.

The second medication didn’t last much longer. It did almost nothing on a low dose, and on a moderate dose it made me fidgety and cranky. At one point, I was at a friend’s house compulsively folding clean washing for her whole family, because I didn’t know what else to do with my restless hands. Another day, I was out buying groceries and got into a full-blown argument with an antivaxxer conspiracy theorist. I was fuming for the rest of the day.

The third medication worked like a dream. It was easier to concentrate and get tasks done, but it was more than that. I was less anxious. My muscles relaxed. Crowded rooms were less claustrophobic. The cartoons playing on my daughter’s iPad sounded less obnoxious.  The physical pain caused by my damaged nerves was still present, but less overwhelming.  Driving a car, riding a bike, and catching a ball became easier as my brain was more able to process visual-spatial information. Until then, I hadn’t realised that my infamously terrible ball skills had anything to do with ADHD.

At first, I was thrilled by the impact of medication, then outraged. “Is this how normal people feel all the time?!” I exclaimed to my partner. It seemed absurdly unfair that a majority of people could travel along through life with such ease, remembering where they put their keys and why they had walked into a room. Why do they get to go through life with such ridiculous ease, while we ADHDers have to work so hard to keep our lives in order?

It made me think of another metaphor I’d heard from people who played video games: living with ADHD is like playing the game of life on ‘hard-mode’ when everyone else is playing in ‘easy-mode’. The setting, characters and goals look the same from the outside, but the experiences were not equal.  The clincher is that most people don’t know what setting they’re playing on, which is why people on ‘easy-mode’ are often so arrogantly scornful of those living life on ‘hard-mode’, and the challenges that it brings:

Pay attention! It’s not difficult to arrive on time. Stop over-reacting. Be quiet. Try harder.  She’s so disorganised. He lacks discipline. He’s just lazy. She’s got such potential but…   

I suspect that if people who say such things ever had the opportunity to live in ‘hard mode’ with an ADHD brain, they would have something different to say.

#

Seeking solidarity, I joined various ADHD groups online and found many other people like me – people who didn’t fit the stereotype because they were female or academically-inclined – who had flown under the radar in childhood but were diagnosed with ADHD later in life.

I learnt that the strategies for increasing dopamine that I had used previously – coffee,  exercise, sunshine, and choosing jobs or hobbies that provide an adrenaline rush (like presenting science shows or talking on radio) – were well-established methods of managing ADHD.  For some people, it was enough, but for someone like me with disabilities and young kids, it wasn’t. I realised how lucky I was to have access to treatment. For others, it was impossible due to cost, stigma or access to information.

I read stories of girls who had been described as ‘chatty’ or ‘daydreamers’, as though they were actively choosing to live in a fantasyland rather than the reality of being overwhelmed by competing thoughts, endless worries, or sensory overload. I talked to many women who were dismissed as being anxious, or misdiagnosed with other conditions, before finding their tribe decades later.

It’s a pretty great tribe.

Yes, we ADHDers are messy and distracted. We are also creative and funny, romantic and authentic, empathetic and open-minded. If we are interested in something, we can also be obscenely efficient, juggling many things at once. We are the class clowns and party-starters.  We are often calm and organised in a crisis. We have a lot of memes.

#

I recently learnt that not all sharks use obligate ram ventilation. Some use a method called buccal pumping, in which their muscles draw water into their mouths and over the gills in a rhythmic motion; it’s similar to how humans breathe.

Those sharks don’t need to keep swimming to stay alive.

Other sharks, such as reef sharks, breathe using a combination of obligate ram ventilation and buccal pumping. They are able to pause for a few minutes without difficulty, but Encyclopedia Britannica reports they “generally aren’t… adept at stillness”.

Meanwhile, I no longer climb on top of school buildings. I climb other things instead. My body and brain feel much better if I go to aerial circus classes each week, hauling myself up the aerial silks, swinging on the trapeze, and hanging upside-down from the lyra.

As with the reef sharks, I am not adept at stillness. I probably never will be. At least now, more than twenty-five years after being asked why I spontaneously scrambled up the side of a storage shed, I finally know the answer.

Steph Amir is an emerging writer with a background in public policy and research. Her writing has been published internationally in print and online, including recently in the Australian Poetry Journal, Gamut Mag, StylusLit, Wishbone Words and Wordgathering. Steph lives with the ongoing impacts of Guillain-Barré Syndrome, and in 2021 was a Writeability Fellow, a fellowship for writers with disabilities. She is currently working on a poetry manuscript called Randomised Control, inspired by her love of science and commitment to social equity. Steph lives in Melbourne, Australia, and recently started a blog at http://stephamir.blogspot.com. You can find Steph at both Twitter and Instagram @steph_kaymir.