On being your brother’s keeper

Isaac Withers explains what it’s like to experience Down Syndrome brotherhood and how the book brother. do. you. love. me. gets it.

Last March 21st was World Down Syndrome Day and it was also the day I happened to finish Manni and Reuben Coe’s book, brother. do. you. love. me. A good friend who knows me and my brother Anj/Andrew (who has Down Syndrome) passed it my way. 

It was written by Manni and illustrated by Reuben, his brother, who also has Down Syndrome. I devoured it. It is one of those rare examples of something mainstream that gets it. By ‘it’, I mean the experience of growing up with a Down Syndrome member of your family. 

Fortunately, you see more of this these days. Sally Philips’ great documentary A World Without Down’s Syndrome? and the beautiful indie film, The Peanut Butter Falcon are two other works that get it.

Anj and Reuben are similar in some laughably specific ways. Manni writes how Reuben is referred to as Frodo and refers to him as Gandalf. Anj is also a massive Lord of the Rings fan and we often cast family and friends in fellowship roles. Both are calmed by the ‘Concerning Hobbits’ theme, the musical score of the shire. 

Outside Middle Earth, both love the musical Joseph and the Amazing Technicolour Dreamcoat – Anj had a decade of this, alongside his Tom Jones decade.

Both are movie buffs, love making plans and will often say, ‘I love my family’ unprompted.

Oddest of all to me was that Reuben is known by his family and throughout the book as ‘Reubs’. Anj is always carrying around a stuffed Eeyore donkey which he named Reubs years ago after our old cat (whom he did not love). Anj tells me every time we talk, ‘I love Reubs’.

Reuben and Anj’s stories also share a similar arc. In their book, Manni tells the story of going to rescue his brother from a care home in the midst of the COVID-19 pandemic after Reuben texted him what later became the title of their book, ‘brother. do. you. love. me.’ 

Manni discovered him mute, withdrawn and a shadow of his former self, totally diminished by poor social care and the complete lack of social contact that came with the lockdowns. The book is the story of Manni painstakingly trying to love his brother back to the warm person full of life that he remembers.

My family can relate to this too. When Anj was 15, quite out of nowhere, he began to suffer from psychosis and became depressed. The lights went out inside and suddenly it was like we were living with a different person. This was to go on for six years and was, I would say, the darkest period of our family’s life. 

Having known other families with Down Syndrome members, I have seen how they are often like a warm centre for the whole family.

The presence of this generally uninhibited and loving person has a mysterious effect on all members and shapes the family culture overall. So when that light goes out, nothing feels right and everyone feels it.

As a kid, Anj would walk up a train carriage and introduce himself to everyone. In high school, the girls loved him because he was cute and had a bounding confidence. He would strut out of school with them. Having a front-row seat to him and my brother John winding each other up or trying to out weird each other was wildly funny. 

But in his psychosis, we inherited and had to love a person who was confused, non-functioning and nonsensical. It was brutal.

When I went to uni, I left my parents and Anj in the middle of this. A couple of years later family members began reporting that he was ‘back’. I was very cautious to take this seriously and would not take their word for it in case it was another case of false hope. So I made a trip home and ran my own tests.

Anj had always been into ‘Top Trumps’. He used to keep them neatly stored away in a shoe box and knew each card so well he was a real challenge to beat. A key sign that he had initially become ill was when my mum found him in the middle of the night having thrown them all around his room. In his illness, he couldn’t even remember the rules. 

So this was test 1 when I came home. I played him hard and it was a close game. This was new. I showed him photos of our family and friends, he could name everyone. Unheard of. I agreed that even if this could simply be put down to his psychosis being treated correctly, Anj was back. The lights were back on.

Perhaps the most moving moment of my life was walking around the local Wetlands with Anj. Our parents, keen bird-watchers, were out ahead of us. Among the reeds, he casually asked me, ‘How are you, Is?’ It blindsided me. He hadn’t asked me that in six years. He hadn’t expressed an interest in how anyone else was. I think I gulped the moment down, kept walking with him and we had a blissfully normal conversation. A 180 degree turn.

Reading Manni’s lockdown project of coaxing his brother back to his voice, I could feel it.

In the push and pull of recovery, the book circled a question that I think most families of Downs people wonder: what does their full potential look like? How bright could this light be?

The answer to this question is a mystery that is worth our endless exploration because they can always surprise us.

I have fond memories of Anj coming to the O2 to see John Mayer with my brother and friends after he came back to himself. I remember swaying with him in the phone torch lights to ‘Gravity’ and how he danced with the strangers in our row. 

But after years of living in a bubble of COVID vulnerability too, this isn’t where he is right now. The game is still to draw him out, to resist his laziness and drag him into the world, even if he would happily spend his days with Frodo and Sam in Middle Earth, or with Bond or Indiana Jones.

Manni expresses so well what this effort is largely about: pace. Years before his breakdown, Reuben walked the Camino de Santiago pilgrim trail with Manni and their brother Nathan. Manni began to realise that, because Reuben’s pace was a third of the average pilgrims’, many would leave them behind sooner or later. Manni and Nathan also found themselves frustrated at having to walk this slowly.

Manni writes: “People simply cannot or do not want to slow down enough to get to know him. He only sees people again if they wait for him, or if they come back. It’s never up to him … Getting to know Reuben is an act of patience, possibly even an act of devotion. At my usual speed, it would take two or three lifetimes to get to know my brother properly. If you take your time, perhaps it would only take one life. But let’s be honest, hardly anyone has the time … Being able to step away from our usual lives and walk the 210 miles of the Camino with Reuben was a privilege … The experience changed us, and forged an unbreakable bond between us brothers” (pp.187-190).

When I did the Bronze Duke of Edinburgh Award as a teenager, we were explicitly told to ‘go at the pace of the slowest man’. This principle stops your team from thinning out, from egos forging ahead and from resentments building behind.

This is what it is like to engage with the mystery of Anj’s potential. To go at his pace open to discovering how far he can go. 

Allowing him to be in charge is always revealing.

I spent the first lockdown at home and got to live with my parents and Anj again for five months. Like many, I found this a strangely enjoyable time in many ways. Every day, Anj and I made lunch together at his pace. It was important to him – and me – that he was always head chef and that he knew that I was sous chef. Even so, he would defer to me often, asking questions like, ‘how many mayonnaise, Is?’ 

To force him to decide, I’d reply something like, ‘fifty-four’. He would dismiss this silliness as the older brother and say, ‘ok, four’ and do it. It could take us an hour to make lunch. It was always worth it and it usually involved hash browns.

It can be frustrating to go at the pace of someone with Down Syndrome. I found Manni’s honesty in this area remarkable. It can be hard to not just go ahead of them and do the thing, instead of encouraging their independence and being patient with them. Sometimes this gets the better of us who try to care for them.

This happened the last time I went on a walk with Anj. We joined dad on his daily post-knee-op walk. It’s not a demanding loop, through a dell we’ve always known as the Dingly Dell. 

At the bottom of the dell’s hill, Anj saw mud and would not cross it. “I have water on my feet and I want to go home.”  By this, he meant that he had rain on his shoes, which was true. Hood up, woolly hat on, Reubs the donkey in hand, he would not be moved. 

I asked him what his heroes, Robin Hood or Aragorn, would do. I tried every motivational approach. He was not even willing to follow my best-placed steps. After a while, I grabbed his hand and pulled him through. I went on to catch dad up and as we were talking, Anj’s groaning became crying. I hope I apologised.

It is easy to overshoot like this. We have all done it. And as happy as he always is to see me when I come home, sometimes I can tell he’s relieved when I’m going again!

I have worried about all this with our nephews and nieces growing up. They operate at such a speed that Anj can retreat around them. They don’t know how to go at his pace yet and so they don’t always know how to relate to Uncle Andrew. 

At his 29th birthday party, I played Top Trumps with him and our six-year-old nephew Joe. Anj went on to become overwhelmed and Joe put aside his characteristic competitiveness to encourage Anj to keep playing, telling him he was winning. This was the first time I had seen one of the kids slow to go at his pace. It really moved me.

A final similarity between Reuben and Anj is that they both refer to their nearest and dearest as ‘my’. Anj refers to me as ‘my Isy’. I never feel a deeper sense of belonging than when he does that. 

In all these things, all I can conclude is that people with Down Syndrome have something mysterious to teach us about love.

I don’t know what it is, but we will not learn it without them. 

Sadly, we do have to consider this because prenatal screening is now so ‘good’ that entire countries may soon be without Down Syndrome citizens. This is why I am always glad to see family stories shared. They offer a window into the lived reality and show that Downs people are not primarily suffering nor are they perfect. They are us.

I want to end by saying that as much as Anj needs us to care for him, being cared for by him is a profound experience. I find it impossible to convey this in words. 

I was lost in the lockdown, burned out and embarrassed to have moved home before everyone was ordered to. Anj appeared in my room in a Chewbacca onesie and sprawled on my bed. He beat us all at Monopoly, vigilantly shouting, ‘rent!’. He held my hand by the fire and allowed me to lie on him like a big dog. He danced with me in the kitchen as we washed up. 

He is a part of all of my recoveries too, a safe harbour, an unconditional love that parallels the depths of parental love. I am my brother’s keeper, but he keeps me too.

This is a slightly edited version of an article which first appeared here. For the original article, click here. It is republished in Adamah with the author’s permission.

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