The Most Special Friends I Have Met
What a year of working with disabled people has taught me.
Note: The names and certain details were changed for the sake of protecting the privacy of real people described in this story.
The friends to whom this piece is dedicated will never read it. None of them has the mental capacity to do so. But this never mattered much over the course of that one year, when I formed the most peculiar friendships of my life with them.
Tony would maybe glance at the first two lines of this text and then he’d laugh, unsure what to think. He would quickly return to one of his safe objects — like a book about Zinadine Zidane, a FIFA game on his console or a That ‘70s Show episode.
Angie would show her enthusiasm for my writing first, for she truly saw a BFF in me. She would feel compelled to express support and admiration for my art — but soon enough, her focus would rest on something else entirely. If she had a good day, she would try to be funny and fool around, asking me to sing a song with her or go through her new clothes together. Was she feeling under the weather, I would keep hearing over and over how ‘shattered’ and ‘knackered’ she feels.
And Brian? Brian would probably not even grasp the concept of me writing about him. Or at least, he would show no sign that he does. Maybe he would point out to me — as he often did — that my foreign English sounded ‘posh’ to his native British ear. The grammatically correct, inversed questions I constructed, even a simple ‘Would you like to go for a coffee?’ utterly amused him.
Then, I imagine he would proceed to tell me a story in English that seemed correct to him:
‘Last week ago, I went to the disco with Rachel…’
Brian was my first.
After I landed the job as a one-on-one support worker for people with intellectual disabilities, I was assigned a shadow shift immediately. Not even a week had passed since I moved to the UK when I already met my first ‘service user.’ That’s how we were supposed to refer to the people we cared for, in order to be both politically correct and keep the professional boundary.
I got the job effortlessly and almost unintentionally. It found me, rather than me finding it. A good friend of mine who had already been working for that charity recommended me for an interview. As a fresh immigrant in a new country — and recent college graduate — I wasn’t particularly picky about my first job abroad.
Converting my savings from Polish Zloty to pound sterling made me aware that I should start earning money sooner than later.
Besides, working for a charity that helped disadvantaged people seemed like a noble thing to do. So when they called me to say I was accepted, I didn’t think twice. I quickly went through the required training and, soon, I was on my way to meet Brian.
Later on, he would become the first of whom I started to think as a friend, rather than someone who ‘used my services.’ But in the beginning, it didn’t seem like I would ever manage to like him. He seemed problematic from day one when I met him on a shadow shift with another support worker.
The combination of autism, epilepsy, and learning disability— all of the conditions he had — was already challenging in itself. His mischievous character on top of that only added to the challenge of working with him.
I was soon to discover what I had signed up for by taking that job.
As a lighthouse support worker — which was my official job title — my main responsibility was to help people with disabilities live their most independent lives. This involved accompanying them in various activities they wanted to pursue, in a way that allowed them a maximum amount of autonomy.
It sounded great as a concept — but wasn’t easy to put into practice. Each ‘service user’ had defined goals they were supposed to work towards with their support workers. God knows who defined those goals and based on what. They seemed so out of reach sometimes.
Brian’s primary objective was learning to manage his own money.
I will never forget the day I first met him alone, without shadowing another worker. The plan was to pick him up from his day centre and catch a bus to town to grab some tea (i.e. a uniquely British meal that occurs in between lunch and supper). As we walked out of the day centre building and headed to the bus stop, I handed Brian his wallet, cheerfully encouraging him to find coins for the ride.
He took the wallet, staring at me for a good few seconds. I think he wanted to check whether I had the slightest idea of what he was going to do. Rightly concluding that I didn’t have a clue, he proceeded to run the first of many patience tests he would put me to later on.
He threw his wallet over a high stone wall into somebody’s fancy property. Then, he turned back to look at me, obviously enjoying the show of disbelief playing out on my face.
All the support workers were strongly urged to keep the professional boundary with the service users. That meant making it clear that we are not their friends– but professional caretakers.
Little did I know how tricky this requirement was to fulfil. Before I realized, I became a full-right BFF to another one of my service users — Angie.
Angie was 20 years old and capable in many ways. Contrarily to Brian, she had a good sense of the chronology of her life, was able to plan and think of abstract concepts. She was also very creative and drew beautiful sketches — not ‘disabled’ kind of beautiful, but real art.
The biggest problem was her verbal communication. Because of severe illness, Angie had to undergo a life-saving operation, in which the surgeons had essentially cut out one hemisphere of her brain. She survived — but at the age of 15, she had to re-learn such basic skills as walking and talking. When we met, words still came difficult to her and sometimes I needed to guess the second half of her sentence.
That’s how we began to learn how to think together. By getting to know her better with each meeting, I was soon able to figure out what she meant by a broken ‘obviously, college…’ from the context. But even if I wasn’t — it usually didn’t matter.
I was discovering that verbal content is only a fraction of human communication.
In supporting Angie, more important than talking was holding space for her. Offering her my presence when she felt unsure about herself. Listening to her life stories with which she trusted me pretty much immediately.
Her default trust amazed me, as she recounted her most intimate memories to me. That included the story of her best friend dying in a hospital and her first sexual encounter in high school.
Listening to the deepest parts of her soul voicing themselves in front of me, I wondered: How the hell was I supposed to keep a ‘professional boundary’ and not become her friend? Before I managed to answer that question, it became clear that she already saw a friend in me.
How could I reject her affection for the sake of ‘remaining professional,’ while she entrusted me with the most painful and wondrous of her experiences?
Angie’s overwhelming thirst of friendship didn’t leave me much room to opt out of it. That’s why, when she first called me her ‘BFF,’ I didn’t object. How could I? Her parents adored me, too, and as I spent most of my shifts with Angie at their house, I soon came to feel like an important part of their lives.
To be honest, they felt like family to me many times, too. Angie’s mom and dad had a motor home and travelled often. They understood my desire to explore the world — which was very strong at the time — much better than my own parents. They encouraged me to ‘take things on’ and ‘give it a shot’ — whatever the particular ‘it’ I was pondering happened to be.
Even when I was leaving to move to France later on, they cheered me on — alongside saying that they were going to miss me terribly.
‘You only have one life, make the most of it’ — I heard from Angie’s mom on our last evening together, just before my flight. ‘The time to travel the world is now. Go girl!’ This was the kind of encouragement I always longed to hear from my own mother — but never did.
My job was to support Angie — but her family also supported me. I got into a complex relationship with all of them, which couldn’t possibly be contained within the ‘professional’ boundaries. A peculiar form of friendship developed.
As I kept meeting other service users, I gradually discovered that human connection was not — as I previously thought — a phenomenon that I could entirely control by ‘setting boundaries’ or ‘planning’ it in any other way.
During that year spent in the UK, I wasn’t really socially active. I had three good friends who lived nearby — and they pretty much exhausted my options for people to hang out with. It was the first time in my life I was spending so much time alone — and enjoying it.
In that lone lifestyle, the service users I was seeing on a regular basis marked themselves as important contributors to my social life. And even if they weren’t the kind of company I would deliberately choose in other circumstances — the role they played in my life was best described as ‘friendship.’
As I see it, human relationships can be rooted in very different things — not just those that I had considered the ‘foundations of friendship’ before. Most people assume that in order to become close to someone, various conditions must be in place. Mutually shared interests and values. Deep conversations and displaying vulnerability. A similar outlook on life. A balance between giving and receiving.
Throughout my year of support work, I understood that what can bond people on a basic level — even if they are not ‘compatible’ — are shared points of reference and repetition, experienced together. With my friends aka service users, those were the things that brought us closer together and gave rise to mutual affection, understanding and attachment.
The perfect example of how this happened were my weekly shifts with Tony.
To this day, in my head, I refer to Tony as ‘the cool guy.’ Being moderately autistic, physically capable and peaceful by nature, he was the most easy-going service user I supported. I could hardly think of anything that could go wrong on our shifts.
However, I could also hardly think of anything unexpected to ever happen.
The thing with Tony was that he was just so repetitive. His mind was constantly fixed on one of his go-to topics, among them: Zinadine Zidane, The ’70s Show and motor vehicles (in any shape and context). It was hard to talk or do with him anything that was out of his default menu of activities.
This meant it was easy to go into a complete autopilot mode when we would repeat the same jokes, watch the same series episodes or count police cars over and over again during our walks.
Those meetings with Tony felt infinitely boring at first — but then, they revealed interesting insights about relationships in general. I noticed that by behaving in similar ways and discussing the same topics over and over, unique points of reference for our relationship were established.
Sure, not much ‘learning’ in the classical sense came out of it. But by growing and reinforcing the repository of common catchphrases, memories and references, we certainly grew our perceived sense of closeness.
One time, I showed Tony the place where I crashed on my bike — and he found the story of how it happened really funny. Over the next months, whenever we passed by that street, I was sure to hear him ask: ‘Is that where you crashed your bike into a wall?’
Another time, he wanted to check whether he remembered the colours of all his carers’ bicycles. After I confirmed that he was indeed correct about all of them (his autism-derived attention to detail amazed me), it became our ritual to go through that checklist of colours over and over again, just for fun.
Our interactions were repetitive and, by most people’s standards, meaningless. Tony was not as keen on sharing his intimate experiences with me as Angie. He preferred to always come back to the same questions, TV series and games. This predictability was what made my interactions with him unique.
An arsenal of inside jokes that we both knew so well. A common language with which we described the reality in a familiar way. The rules of our conversations by which we knew how to play.
Our relationship was defined, personal, and one of a kind. Tony became my safe harbour among other, much more unruly, service users.
At the time, I was intensely reading a book called The Presence Process by Michael Brown. It introduced me to the concept of spiritual growth in general — and emotional processing in particular.
According to Michael Brown, all the emotional content we experience originates in our past, especially childhood. Based on what we had encountered earlier in life, our physical, mental and emotional body developed responses which we now experience as felt perceptions.
In other words: any feeling arising in the present is caused by someone or something triggering a memory from the past, with which the particular feeling is associated.
This way of looking at things was totally new to me. It implied that none of the emotional experiences I was having was random. Rather, it was just a consequence of a ‘messenger’ coming my way and showing me which of my feelings had not yet been ‘integrated.’ Michael Brown advised that in order to integrate the previously suppressed emotions, all I needed to do was feel them unconditionally.
An important part of this process was learning to spot the messengers. These were the people and events that sparked my strongest and usually uncomfortable feelings. Once I noticed a messenger, I was supposed to turn my attention away from blaming them — and towards the raw emotional content of the experience.
One of the most important messengers who revealed a whole lot of naked truth about myself was Brian.
I called Brian ‘mischievous’ at the beginning of my work with him — but this was just because it was the beginning. Over time, as I kept seeing him regularly, I was indeed able to shift my focus from his ‘rude’ or ‘insubordinate’ behaviours (those adjectives were only judgments anyway) and place it on my own internal experience that those behaviours triggered.
With Brian, we developed common points of reference in our relationship, too. But unlike those I shared with Tony, they were loaded with emotional content. One such ‘ritual’ we acted out over and over was using public restrooms.
The classic scenario was the following. As the shift was about to end and we headed towards the bus stop to go home, Brian would say he needed to use ‘the loo.’ I couldn’t argue with that, so I would right away start looking for a place we could go to. As we entered the train station or a cafeteria, I would pray in my head for this to be just a pee.
If he needed to poop, there was no way we were making it back home on time.
As Brian could barely handle taking off his pants, as well as was always at risk of having a seizure, I was obliged to enter the cabin with him. His default things to do then was to play with the flush, wipe the sink, and touch every object within reach. The first milestone to get through the whole operation was, therefore, to get him to sit down on the toilet.
After that, he needed to focus on doing what he needed to do. The last and possibly hardest step was to convince him to wipe himself and wash his hands. Instead of doing that, he usually preferred to chat about everything in the world.
The whole toilet mission could last anywhere from 30 minutes up to an hour. 20 minutes, if he was having a really good day. As we went through it one thing at a time, knocks on the bathroom door and ‘are you alright’s would inevitably start coming at some point.
Initially, that made me turn into pure embarrassment, agitation and resentment towards Brian. It felt like he was doing it all on purpose, just to tease me and see when I’d explode.
At the beginning of my work with him, I would explode often. This usually meant crying in the restroom, cursing poor Brian in my head. But over time, I realized two basic things — which became a springboard to my growth as a person later on.
First of all, Brian had no intention of hurting or annoying me. He was simply being this way with everyone because his consciousness was shaped in a different way. He obviously couldn’t grasp the impact of his actions — and more often than not, his ‘mischief’ was simply a way of dealing with his own frustrations. Like this one time when he tore a poster in the cinema after being disappointed with the food he had ordered at a restaurant earlier on.
He had more serious reasons to be frustrated, too. Every once in a while, his criminal father would come to visit him at home. Whenever that happened, Brian was restless. I remember him slapping himself when something didn’t unfold as he expected. It seemed that this kind of behaviour — along with challenging his caretakers — was the only way he knew how to deal with adversity.
The second thing I learned in my relationship with Brian was just how much of human communication happens on a non-verbal level. After a few months of seeing him, I spotted a curious regularity in our interactions. Anytime I felt apprehensive about Brian doing something ‘wrong’ or ‘embarrassing’ during our shift, he almost surely did that. Contrarily, when I felt peaceful and confident that the shift would go well — it usually did.
From today’s perspective, it is quite clear to me that Brian, if only unconsciously, picked up on all my emotions that I was trying to hide. Then, like a perfect messenger described by Michael Brown in The Presence Process — he reflected them back at me with his challenging behaviours. Sometimes it meant spending an hour on the toilet. Another time — picking a chewing gum from the trash and putting it in his mouth or creepily staring at strangers on the bus.
Once I understood what was going on between us on a non-verbal level, things improved almost immediately. I became much calmer and Brian — kinder. The more we were in tune on the invisible emotional level, the less drama and embarrassment surfaced in the physical reality.
Without knowing it, Brian became one of those rare friends who showed me my dark side and pointed to things I had to work on. I had the precious chance to meet my obscure emotions without ever running the risk of making a fool of myself. Brian forgave all of my emotional shortcomings in a blink of an eye and continued being himself, no matter what.
In a way, he did for me what I often can’t do in my relationships till this day — he accepted me unconditionally.
When I was preparing to leave the UK, I expected Angie and Tony to understand what was going on. And indeed, Angie prepared a farewell evening for me together with her family. Tony gave me a thank-you card with his name handwritten on it, but acted as if we were going to see each other as usual next week. Good old Tony — always cheerful and equanimous towards life’s events.
Brian, however, surprised me. I didn’t think he understood that I was leaving when I brought him to his independent living home for the last time. I didn’t even bother to explain to him that we were not going to see each other again —most probably, ever.
Usually, he would get to his magazines as soon as we returned home, and ignore me from that point onwards. But that wasn’t the case this time. As I chatted to one of his home carers, Brain restlessly hovered around. Then, when I was preparing to leave, he — not prompted by anyone — walked me to the door.
He said ‘goodbye, Marta,’ addressing me by my name for the very first time. He hugged me affectionately. Then, more capable than ever, he opened the door and gestured me to walk out. It was clear he understood that this was farewell.
I waved him goodbye as he closed the door behind me and walked towards my bike. For the one last time, I realized that I — yet again — had underestimated just how able my ‘disabled’ friends were.