I’ve written numerous times about the stigma that attach to mental illness, the names sufferers are called, and the words used to describe them. Often, these are said in a derogatory, demeaning way, which can be extremely insensitive and cause much harm and hurt. But what if they are being said by someone who loves the person they are describing? Or are used as the basis for a song? Does that make it any more acceptable? Depending on the context I believe that it can be, and am sharing with you a song and a story to illustrate this and to get you thinking. As today is World Brain Day (organised by the World Federation of Neurology) this feels appropriate, somehow.

One of the more colloquial phrases that is used is the title of this piece. It was in common usage in the 18th and 19th centuries, when hatmakers used a lot of mercury nitrate in their manufacturing process, and often suffered both physical and mental ill effects as a result. Nowadays it is, I think, not particularly offensive in comparison with some other terms, perhaps as a result of being used by Lewis Carroll for a character in his novel Alice’s Adventures In Wonderland, which was published in 1865 and has been a familiar part of much childhood reading since then – including mine. He actually wrote under a pen name, his real name being Charles Dodgson, and as well as his many literary works he was known for being a poet, an inventor and a mathematician, amongst other things. The phrase has also been used as a song title, and that is why I am sharing this piece. Have a listen:

I have featured Larkin Poe here twice before (once with a video which is now no longer available!). They are sisters Rebecca and Megan Lovell, plus their band, and have developed over the years from folk-based beginnings into the roots-rock which is now their trademark. As Megan says in her introduction to the song, they wrote it about their paternal grandfather, who suffered mental health problems for many years before being diagnosed with schizophrenia, which later became dementia. These are the full lyrics:

I know what time is, time is a thief
It’ll steal into bed and rob you while you sleep
And you’ll never feel it
It pulls off the covers, and rifles through your head
Then you’ll wake to find you can’t remember what you just said…
It happens to everyone…
Just like the father of my father, time stole his mind
And I can’t forget that one-fourth of his blood is mine
I try not to worry…

Please don’t come for me
I promise I’ll be great
Just let me keep what’s mine (let me keep what’s mine)
Please don’t come for me
If you must then just please wait and let me have some time (let me have some time)
Please don’t come for me
Mind over matter (it don’t matter) when you’re as mad as a hatter

It’s hard to draw a clear distinction
Who you are, who you were
Through the looking glass, the past and future begin to blur
And no-one can blame you
Well they say the world is what you make it
You think, speak and breathe
And those rules still apply, stuck in a world of make believe
You make the best with what you’re given…

Please don’t come for me
I promise I’ll be great
Just let me keep what’s mine (let me keep what’s mine)
Please don’t come for me
If you must then just please wait and let me have some time (let me have some time)
Please don’t come for me
Mind over matter (it don’t matter) when you’re as mad as a hatter

Off with her head, off with her head
Paint the roses, paint the roses
…

That is a powerful evocation of what you might think and feel when someone close to you is suffering. Your love for them will help you care for them, but it can also make you worry that the illness might be hereditary: “and I can’t forget that one fourth of his blood is mine, I try not to worry” is, I think, the best description of this that I know. It is a horrible thing seeing someone you love becoming ill: my Mum suffered from dementia in her later days, and it was almost a blessed relief when it finally took her from us, as her life had become a shell of what it had previously been. Amongst all the feelings of love and loss there does also lurk that guilt in thinking that this might happen to me, too, somewhere further down the line. The lyrics really speak to someone who has gone through this: “Please don’t come for me, I promise I’ll be great. Just let me keep what’s mine.” And the follow up “Please don’t come for me. If you must then just please wait and let me have some time.”

Should I – or anyone else in my situation – be feeling guilty about such thoughts? If you haven’t had someone close to you who has suffered from dementia you may not be able to relate to this, but for those of us who have it is, I think, completely understandable. It is a horrible illness, which gradually takes your loved one away from you, even though you still have their physical presence, and I don’t think anyone would wish that on another or on themselves. So yes, we do think it, and we shouldn’t be judged unkindly for that.

Rebecca and Megan wrote this song around 2011, and the video above was first shared in 2015, though the song had long been a staple of their concerts at that point, and still is. It hadn’t been included on any of their records, however, until they released a live album last September with the hybrid chamber orchestra Nu Deco Ensemble. The album is called Paint The Roses, and this is the version included on it:

By way of explanation in case you don’t know the Lewis Carroll book, one of its characters was the ‘eccentric’ Queen Of Hearts, who was given to demanding punishment for people who had upset her with the phrase “off with her head” and at one point instructs her courtiers to “paint the roses” as she feels that red is a better colour for them than white. I rather like the way the concert staging reflects this in its red background, which can’t have been accidental. In an interview earlier this year for the Songfacts Podcast, Megan explained how writing the song helped her process her feelings about her family history. She said, “From my own journey in writing the song, knowing that mental illness ran in our family and having a bit of an understanding of how challenging it was for our grandfather to live the majority of his life without a diagnosis, there was a lot of mystery and a lot of unanswered questions that the whole family was processing. It created some unrest that I needed to address in writing the song. It served as a great release for me individually and has served as a great connective tissue between us and our fans over the years.”

Music is good at helping people make a connection, which is one of the reasons why I share a lot of it here. It also helps us understand what matters to us, and can help us work through our feelings in a way that just talking to people may not be able to do. My Mum loved music, and was a pretty good amateur pianist: in the days before my voice broke I had a good boy treble voice and was often cajoled into singing with her accompaniment. It is memories like that which sustain us, and to which we return later in life when we need the comfort blanket around us of remembering the person as they were. Those feelings of guilt that I mentioned are, I think, entirely natural, but they don’t mean that we love the person and our memories of them any less. And if a colloquial phrase can be used in a way which gets that message across, I’m all for it.

If you have someone who suffers from dementia you’ll know what I’ve been talking about. Here in the UK one of the main supportive charities is the Alzheimer’s Society: their website can be found here if you need support, or just want to find out more. No doubt similar organisations exist elsewhere, too. I encourage you to find them: it is good to understand this pernicious illness better even if we don’t have a loved one suffering from it. I’ve been there, and at some point you might do, too. I wish I’d known more before it was too late.