The Bravest Thing I've Ever Done.

I am a huge physical coward. I climb carefully into the swimming pool down the ladder and shudder at the idea of diving in. The very thought of bungee jumping makes my stomach turn. I don’t cycle on the road any more because I’m scared of traffic. But I did do a very brave thing, one of the bravest things that anyone can do, when I took the test to see if I would develop Huntington’s Disease.

This is in the news today and it is ten times braver to do it in public with a camera crew. A few years ago my friend Jaqui did the same on the radio.

Their courage is just astonishing. 

It seemed a good time to share my story too, as I’m writing a memoir about my mum, Nick, and how Huntington’s came into our lives. It’s still work in progress but this is an excerpt about my decision to take the genetic test. I'm eternally grateful for the huge support that was around me at the time, and that for once in my life I did something really brave.

“Nick and I were having a beer, talking about Mum. The misery of her last few years, how the illness had stolen her life.

         ‘If I thought this would ever happen to me, I’d kill myself. Seriously, I would rather top myself than end up like that.’ 

He had said this before, whenever our conversation danced around the one subject that we could never quite properly talk about. But it won’t be you who ends up like Mum, I privately thought, it’s going to be me.

‘None of us know what life is going to throw at us,’ goes the saying, but actually with a Huntington’s diagnosis you do know. And it’s never good.

When you have a 50% chance of inheriting an incurable illness, the proverbial axe is always poised over your head. Or maybe the Monty Python giant foot. I don’t know if anyone not directly affected by something like this can really understand the feeling. But I will try to explain.

You are born with this built-in time bomb ticking away inside your body. And so are we all, you may say, but unlike any other illness I can think of there’s a world of difference between ‘likelihood’ and ‘definite’.

It’s not a predisposition that might be averted with careful lifestyle choices and good luck. No surgery can remove the affected part.

If you have the HD gene you will develop the illness, the one you have already seen destroying your parent or siblings, and it’s this inescapable repetition that is so nightmarish.

         So, unless you are 100% sure that you will not inherit the HD gene, if it is in your family then you are always wondering – Will it be me? And if you have siblings, inevitably – what about them?

Well, how can you think about that for long without driving yourself mad?

If you’re brave enough, you can take a predictive test that will analyse your DNA from a blood sample. The test became available in the UK in 1993 and will reveal whether or not you have inherited the genetic mutation in chromosome 4 that causes Huntington’s Disease.

The blood analysis will measure the repeat sequence of Cynosine, Adenine and Guanine, three chemicals that form the building blocks for a person’s DNA. In a “normal” person, these chemicals display a certain number of CAG repeats, usually up to 35 times.

Someone carrying the defective gene will have a much higher number of CAG repeats – typically between 37 and 45, which is the inevitable marker for the illness.

Could a high number be a mistake, miscounted or misinterpreted by an inexperienced lab technician? No.

So that’s what the blood test will show – your number of CAG repeats. Significantly higher than 35 and the HD gene is stamped through your DNA like writing in a stick of seaside rock.

If so, however young and healthy you are now, there is no escaping the disease. As typically it doesn’t begin to manifest until mid-life, it can be hard to believe that you are carrying this invisible time bomb. You can disown your family, emigrate to Australia, call yourself a different name or have a sex change. But if it has marked your card, it will come for you. No escape.

The testing process is lengthy because this is clearly not a decision to be taken lightly and there are staging posts along the way where you can discuss your fears and back out at any point before actually taking the blood test. But do you really want to know? It’s such a gigantic decision that many people don’t.

As a counsellor had said to Nick and me after Mum died, ‘You are young – get on with your lives. Don’t let this dominate you, who knows what could happen, you could live in fear of Huntington’s and then get run over by a bus!’

Not the most cheering way of putting it, perhaps, but it did the trick for us. For a while, anyway.

Because it is hard not to live with some level of fear. You do get on with life, other things take centre stage and Huntington’s gets gradually shunted to the dark corners that you don’t investigate too often.

Living with that knowledge in the back of your mind is like living under a shadow; it soon becomes normal, disregardable, your eyes adjust so you forget it is there. But nevertheless….

And as you get older and approach the age when it might begin, an undercurrent of superstition starts to envelop everything you do. When you know it might be you next, your whole being conspires to avoid properly thinking about it, even though it’s all you do think about.

Generations of families can be affected in this way, knowing exactly what’s going on but not talking about it. Watching. Dealing with the fall-out of early symptoms, which can range from a slight tic to hyper-mania, car accidents, obsession, crazy spending and sudden violent rages – but somehow not acknowledging it as the onset of HD.

Even when you are actively looking out for the symptoms. You know they’re there and in hindsight it’s so obvious, but it’s as if your brain simply cannot acknowledge the significance. It’s a weird paradox.

Whole families become experts in denial because the reality is just too overwhelming to face.

So you can read up about the illness and genetic science. You can campaign, you can talk about HD and do fundraising ‘til the cows come home but when you or a loved one are at risk yourselves, there’s always a tender nerve inside that you avoid going too near.

         Is this it? This twitchy eye, that dropped plate – is this the onset of Huntington’s? You worry about that all the time and yet when the evidence is actually there you can’t seem to see it. It’s the permanent elephant in your living room that you just can’t look at directly, however many times you have to walk around it.

I was like that for years, and then one day I just got tired and booked myself in for the test."

Sunshine and Rain (and a touch of snow)

It’s been a full-on week, and one that I really thought might break me. When you spend the majority of the day, every day, dealing with someone else’s business and never seem to get to the end of it and no time even to check in with yourself, it’s just exhausting. Your brain starts to shut down, dreams forgotten and plans on hold. You feel you have no life. And it’s true. When things hit like this all at once, you have no life – you just have to shut down your ego, you are there to serve.

Especially on weeks like these. As well as the TV and the NHS penalty notice, there has also been a problem with Nick’s benefit payment failing to arrive in his bank account this week, and a warning from his utilities provider that his gas consumption is unprecedently high and they are going to suspend his account. Oh, and his CEA card is about to expire and they need a set of evidence. Lots of emails, lots of phone calls. Nick sits flailing while I try to explain to him what I'm doing.

He has been to the dentist and he's had a haircut. And we’ve seen the neurological specialist too. 
Who was concerned about the severity of Nick’s chorea; he’s on pretty much the highest doses he can be of the Sulpiride and Olanzapine and he’s still unable to keep still, head nodding, arms jerking and legs kicking out like a mule. The specialist decided to try a different medication and has prescribed Tetrabenzine – not instead of, but in addition to all the other tablets he’s taking.

Naturally it’s not just a simple dosage but a trial run of half a tablet a day for two weeks and then gradually scaling up to a larger dose. Nick gets his current meds in a blister pack, compartmentalised for morning, noon and evening meds for each day of the week. This will be separate, administered three times a day by Nick’s carers alongside the tablets in the pack.

I’ve printed out instructions for the carers very clearly and just have to hold my nerve and pray that they can cope with this new development because some of them still can’t seem to read a label on a dish saying “Please give Nick this pasta for lunch”.

There’s a slight risk that the Tetrabenzine will cause a low mood, and actually this is already a big risk with Huntington’s as inevitably it goes hand in hand with a low mood. To put it mildly.

Nick has been taking anti-depressants for the last ten years, since before he was diagnosed, but since moving to Sheffield he has consistently said that he feels happy and loved, and rarely feels down – which is terribly moving to hear, thinking how much his health has deteriorated in that time and how many reasons he could have to feel bad. So we think it’s worth a whirl.

“How will we know if it is affecting his mood?” I asked.

“Oh, you’ll know all right” was the answer. So we’ll watch and wait.

It’s all been an uphill struggle though, exacerbated by the fact that Nick has not had his TV or radio all week and has been sitting, slumped, staring at the wall when we’re not there to chat or take him out. I’ve spent hours on the phone trying to sort out the various technical, financial and bureacratic issues, on hold listening to Vivaldi, Beethoven and easy listening jazz until my ears are ringing. 
On Wednesday I managed to get the TV to come on but could only get one channel  - of all things, Parliament Live. It was the night of the big Brexit vote of confidence / no confidence in the Prime Minister. She'd scraped through and most people had left the building, so there wasn’t much to see. The red seats were empty, just four or five stragglers slumped on the benches in a similar attitude of apathetic despair to Nick, or maybe just dozing. 

“Oh blimey, you won’t want to watch this, Nick!”

“Yes” he said, “I do!”

So for the last three days he’s been sitting watching the Parliament channel instead of his usual diet of Netflix, radio 6 music and the Archers, and it seems to have kept him – well, if not entertained exactly, then occupied. He probably knows more about Brexit now than any living person, except that his short term memory is so bad that he won’t remember any of it.

It's been such a bad week in terms of Nick's movement deterioration, speech slurring, spillages and general loss of understanding that despite last week's lovely birthday, for the first time I have really wondered how much longer he can live on his own. 

But. As the week ends, I decided to have one more go at the television, spent an hour on the help line and, with the help of two patient and skilled virtual technicians, have finally and fixed the software glitch and paired yet another new remote control too. Yessss!! What a triumph. 

I’ve spoken to a proper human being at the DWP who says that Nick’s full benefits will be reinstated next week with a rebate going back to November, and although the NHS business service are intransigent about charging for a prescription that we still can’t trace, they say we don’t have to pay the fine and his exemption certificate is on its way and will cover any future problems.

And this - just when I was feeling most desperate, a dear friend got in touch out of the blue and offered to help with the costs of a new TV. I can’t begin to say how kind that was. 
Not just the thought of a practical solution. It felt like a miracle just to have someone reach out at the point when I felt most alone and unable to put one foot in front of the other or see straight.

We’ll probably struggle on with this one now it’s working again, but I’m feeling braver all the time about asking for help and accepting it.

I’m beginning to think that no-one could do all this without going half crazy, there’s nothing to be ashamed of if sometimes I can’t cope, and that mostly I am doing a good job.

Meanwhile Nick is in Netflix heaven, it’s the weekend, and if just for a short hiatus, I can breathe easier again.

A Colouring Book for Carers (Geography saved my life)

Geography kind of saved my life last year. Once upon a time it might have been a DJ I guess, but my son is the night clubber of the house these days.

In the first few terrifying weeks of my brother arriving in Sheffield and me realising just how ill he was and how completely reliant on me, I walked around in a state of grief and shock.

One day, absolutely banjaxed by everything and wondering how the hell to go on, I noticed that the local branch of MIND was just opposite Nick’s flat, and I just went in. 

I knew there would be massive waiting lists for counselling and didn’t think I stood a chance, but I just needed to talk to somebody. It was just pure luck that it was across the road from Nick, literally within shouting distance of his front room. 

To my amazement there was a free counselling programme available for carers in their fifties and I could put my name down for it and be seen fairly soon, and in the meantime let’s have a chat and take some details…

Even doing that was helpful, being able to say out loud what was happening and feeling not quite so alone. It’s one of the biggest things for new carers, that utter clobbering of overwhelming emotions  - guilt, fear, rage, exhaustion, sorrow and a love that you don’t know what to do with. It’s no wonder that for most of us in that situation, mental health takes a steep decline. You spend so much time and emotional energy looking after this vulnerable person that it can suck out all your juices until you genuinely feel there is no longer any you at all.

So, cut to the early autumn and I started seeing Olga who I quickly realised was very, very skilful in her work and more to the point, really got me. I spent the first few weeks just crying and ranting but gradually somehow she helped me to see a glimmer of light and hope in the situation. She helped me come back to my own life in between the caring duties, and even though it is a constant juggle, identify things that I love to do and that recharge my batteries. All this helps me to be stronger and more able to care for my brother. 

By the time we finished the 24 sessions (lucky me) I felt like a different person – still clobbered daily by the unexpected and the ongoing grief of this living bereavement, but capable of happiness too, remembering who I am and what I want and just feeling ten times stronger.

I wanted to be an artist – I always have been one, but never really took myself very seriously and it always felt like the life that might have been. But Nick’s situation changed that – seeing how precious is the time we have and what are we waiting for? Why not just follow that crazy dream?

I honestly don’t know how I’ve made time for it, but somehow I have managed to start making art again and this month I’ve got a small exhibition of my illustrations and astonishingly, it feels completely natural and normal.

And I have made A Colouring Book for Carers and would love to share it with you.

A Colouring Book for Carers started life as a leaving present for Olga, but I realised that it might be useful for other people and that I wanted to share it.

I had started drawing some doodles while I waited on the phone during the seemingly endless admin involved in caring for another person, and thought it would be fun to do a “colour yourself calm” style book specifically for carers, with situations we would all recognise. 

It has ended up as a cross between a colouring book and an illustrated self-help guide and I could have made it three times the size, but small is beautiful, hey?

If you would like a copy, it’s available from Airy Fairy in Sheffield while my exhibition is on (throughout November) and soon in other outlets, or contact me for mail order.