There is a bewildering wait to see a psychiatrist to ask advice about medication, meanwhile Dan sinks further into despondency. He ventures into some helpful activities and begins to share his story. To access previous chapters, visit Jane Read’s Author Page.

 

 

Chapter 27

JANE

 

                   ‘Where does one go from a world of insanity? Somewhere on the other side of despair.’

T.S. Eliot

 

Once Dan’s mood and energy levels have deteriorated to the point of his hardly being able to put one foot in front of the other, I feel I can no longer stand back and watch him sink further. Besides, I promised him that I would do something. Graham is more reluctant to consider reducing the medication ourselves, without first asking the advice of a consultant. We have been left no guidelines about what to expect nor any information about who to contact if we are worried.

Dan is due to meet his community psychiatrist on 7^th January. Perhaps we can arrange to speak with him before that date and to get some answers to our questions.  But Leo, Dan’s care co-ordinator rings to apologise for an unfortunate mix up which has occurred. The promised psychiatrist (the one they’d told us Dan would be seeing on 7^th, the one they’d assured us, has a good reputation) is apparently now not going to meet with Dan at all, as his list is too full. We are also informed that there appears to be no available appointment with any psychiatrist until the 25th of April!  If we want Dan to see someone before that date, it will have to be a trainee doctor, an F2, (no more experienced than our own son, Tom)

We are astounded and left wondering if this is a typical picture of the current state of mental health services throughout the land, or is it just this bad in our area ? Having spent weeks agonising over Dan’s mood and the side effects of his medication, we are now being told that there will be no help available for months. What further harm might it do if our son is left so depressed and so sedated for that long? Graham begins to wonder, not for the first time, about exploring alternative, private care.

Eventually we decide to lower his dose that day, planning to check later, whether or not, we have done the right thing. We feel sure that we should not have been left in the position of having to make this decision on our own, but imagine that lowering his meds just a little, might just give Dan some hope and maybe enough motivation to press on and to continue to co-operate.

We write a carefully worded email about our anger and disappointment, which is then forwarded to the appropriate health trust and patient liaison body. We are sent a document about how to carry out a formal complaint but amazingly, this is followed up by an immediate promise of a consultation for Dan as before, on the 7th January plus ongoing follow-up appointments booked in for him at six-week intervals. We are relieved by this but know full well that it has only come about through our dogged persistence.

I am starting to experience the enormous responsibility of being carers for our son, realising his complete dependence on us to be his advocates and to make the right decisions on his behalf due to his inability to instigate any of this by himself. I remember bringing our new-born babies home from hospital which was daunting enough, but at least there were sources of support provided for new parents. Becoming a carer feels much worse than that, and very much lonelier.

‘Mum, I need to start looking for my dress for the school prom.’

Em interrupts my spiralling thoughts.

‘Can we go shopping this Saturday? Some of my friends have already got theirs. I’ve seen some nice ones advertised in the sale and they aren’t too expensive.’

Although I am struggling to generate any enthusiasm for a trip to the crowded January Sales, I wonder if it might provide a welcome distraction from my constant anxiety. I know how important this special, coming of age event is to Em and I feel I owe it to her. Then she reminds me,

‘You always said you wanted to be given the chance to choose a lovely dress for your only daughter.’

As the younger sister of three brothers, Em had been a dedicated tomboy for much of her childhood. A tough and confident child, her closest friends always seemed to be boys, mostly footballers. She showed preferences for jeans and combat trousers and maintained a quiet contempt for dresses, frills and anything pink or sequinned. Despite my temptation to indulge her more elusive, feminine traits, I always admired her confidence to be herself. Later, she transformed independently, to become a fashion-conscious, and remarkably beautiful teenage girl, joining the styles rankings of her peers.

Her friends have been already been sharing pictures of their prom dresses on social media, to be sure that there are no awkward clashes and Em has efficiently made a list of clothes stores she wants to visit, after reading the reviews and researching the best offers around. This all helps make our shopping trip very much easier.

Graham urges us to take as much time as we need and to make sure we treat ourselves to lunch out. I make up my mind not to dwell at all on any Dan worries, but to focus fully on my daughter for once. Fuelled by some strong coffee, I manage to stay focussed and sustain my energy throughout the expedition, acquiring prom dress, shoes, bag and sparkling accessories before we leave. Em repeats a series of heartfelt ‘thank yous’ as we travel home, rubbing her face affectionately against my upper arm. But it really has been a pleasurable day for me as well, effective retail therapy of the best kind.

Whilst we were shopping, Graham had taken Dan to Banks, the big music store in York to look for some more guitar music.  Then, showing respect for Dan’s current mindset and beliefs, he’d suggested a tour around York Minster in the afternoon. Dan seemed interested but was also very quiet that day.  Graham noticed that he was walking slowly, like an old man shuffling along beside him, lacking his characteristic energy or enthusiasm.

On Saturday, I take down all the decorations with Dan’s help and instead of carols playing in the background, the only accompaniment is Graham’s annual grumbling about glitter, pine needles and the extra mess created by Christmas. On Sunday afternoon, he suggests a refreshing walk on the coast, to revive us before the school term starts again. Em has already planned one final day out with her friends.

We drive to the estuary at Spurn Point. Dan seems particularly vulnerable that day and I realise he is weeping silently in the back of the car all the way there. I ask if it might help to talk to us about his feelings and he explains how much he is struggling to find any purpose in his life and how he feels numb and disconnected from everything around him.

‘I think this is the hardest stage of this thing I’ve got’ he says, ‘Feeling constantly down, not wanting to do anything.’

The fact that he’s calling his illness ‘This thing I’ve got’ seems to me like a glimmer of insight. He goes on to say that although he realised he needed to calm down, he had not expected to be robbed of all positive emotions and even his ability to feel.

As we walk on, Dan begins to talk, describing in detail what happened to him from the start of that eventful Autumn term. He talks about the build-up of his thoughts and beliefs and describes in detail the birthday weekend at Mark’s house which led to the phone call, the rescue mission, and his eventual admission into hospital. I notice him growing more animated and happier, the more he opens up and shares.

This walk marks the beginning of Dan’s narrative, which I later record in my own writing and diary notes. It gives us moving insights into the experience of this strange illness from the inside, so we both remain quiet and encourage him to continue to talk for as long as he wants, only asking the occasional question.

The most spell-binding moment is when he mentions again, the text he’d received, which he is still convinced, is from God. His phone has the message stored, so he quickly scrolls back to find it. Then the three of us stand completely still on the empty, windswept beach, mournful cries of gulls accompany Dan’s words as he reads aloud. I hold my breath, then ache for him as I recognise the words as my own.

This message was a text which I had sent to Dan, the weekend he’d started talking excitedly about his beliefs and when I became concerned about his newfound religious fervour escalating and spilling over. My intention had been to steady him by measured words. I wanted to help him to avoid persecution and cruel backlash from the sceptics. I wanted to protect him. Now, as I stand and look with sadness into Dan’s eyes, holding both of his hands in mine as he finishes reading, I say,

‘Dan, I have to tell you that it was me that sent you that text. I remember the words I wrote. I chose them carefully at the time.’

I am wondering how he will react to this. Will this be a huge disappointment? Will he even believe me? He looks up smiling.

‘But isn’t that a truly amazing thing Mum? God gave this message to me through you? It is a good text, and it is one that was sent through love!’

That feels true enough to me. It was a message which I sent with the best of intentions. We hug, agreeing that even if things are not completely clear right now, we will hopefully all arrive at the same place in the end.      

But Dan’s confidence deteriorates further. It is as though we have completely lost the bright personality that was our son, the talented, capable, funny person we’d known, and we grieve our loss. It is as though we are now trying to repair him, putting him back together, one piece at a time, learning that recovery post-psychosis is not a linear climb back up to normality but a fluctuating wave of ups and downs, with painfully slow improvements.

In the hope of adding to his weekly routine and helping to maintain a sense of purpose during his time at home, I arrange for Dan to come into school with me to do some voluntary work with the pupils in the learning support department. The facilities staff promise to find a few practical tasks for him in between times. Graham also organises some long hikes and piano lessons and Dan starts attending drama groups with ‘Converge’ (a charity set up in conjunction with York St John’s university, providing activities and employment for people who have suffered mental illnesses.) On Fridays it is arranged that Dan will travel into Leeds, to work with his brother Rob in his studio, composing and recording music.

Some plans end up being postponed because of Dan’s crippling fear about starting anything new or even stepping out of the house. They are all quite casual, unthreatening activities, things which he would normally have taken in his stride. It is troubling to see him struggle but with much coaxing and encouragement, once the initial hurdle is crossed and the first steps taken, things didn’t usually seem quite so bad the second time. Gradually we watch his courage build, but only a fractional amount at a time.

The drama rehearsals he attends are stumbling, amateur efforts, embracing the most shy and vulnerable people, vastly different from the professional standards he had been used to in his drama school training. But they are also a helpful and unthreatening way to develop enough confidence to perform again. Dan makes us laugh when he describes some of the local characters who attend the drama groups. One guy’s mobile phone goes off regularly during rehearsals.  (This kind of interruption would never have been allowed in drama school!) But what amuses Dan the most is the fact that he always answers his calls, mid-session, shouting into his mobile in his broad Yorkshire accent, while the rest of the group sit around, waiting patiently to continue.

‘I can’t talk or say owt right now ‘cos I’m doin’ drama!’

At four pm on the afternoon of the seventh of January, the hard fought for and long-awaited meeting, with Dan’s early intervention psychiatrist, finally takes place. Leo hands us an updated care plan. We ask our questions about the level of medication.  He tells us that the dose required for the patient to become well again, is usually the level that they need to stay on for at least two years. But I query the meaning of ‘well’ explaining that Dan is much quieter and more manageable, but his beliefs persist, and the medication seems to have caused him to sink into a state of abject misery. The consultant says some encouraging things to us like,

‘If things go well and the treatment plan is followed, Dan should be able to get back to where he was before he became ill.’

Although this is really difficult to imagine right now, it makes us more determined than ever to help him through the process of recovery and the challenges he will encounter on the way. I had taken for granted that he was heading for a successful career in acting. We are now trying to adapt our thinking to more basic aims for him, like achieving mental stability and independence and remaining happy and fulfilled.