Category Archives: Family

On family: Hey big sis

Hey big sis,

I’ve been thinking about you a lot this Christmas as I have done every year since you left. You know how crazy life gets, but I should’ve  written to you sooner. So much has happened in the past six years I don’t know where to start. Of course the children are no longer children (and John and I no longer in our thirties). Barney boy is in his first year at university studying philosophy and loving it. You’ll not be surprised to hear Ashley went on a gap year after finishing her A-levels – volunteering and travelling in Central America. She took your battered rucksack and your attitude. I spent the year going even greyer, but John and I did ‘man up’ and fly to Honduras for a week in March. Shock, horror, I know. Ashley rightly attributes her wanderlust to you. Well it was hardly me was it hon.

She was fourteen when you spent all that time together – an impressionable age as it turns out (she also wants a daisy tattoo!) I wish you could see her now. She is incredible; confident, natural and beautiful – and I mean seriously beautiful. When people tell me we look alike I always say she is a better version of me, but truth is she is in a different league (just like you were). She is also funny and dramatic and bossy and loves cooking. Oh and she loves to shop for makeup and beautiful clothes and always fits in coffee and cake. You and she would have made a formidable MK team.

If only you could have been here for Christmas. Ashley, just like you, homebaked her presents (you should’ve seen the state of the kitchen). You two would have cooked mince pies and shared Christmas recipes. You would have gone Christmas shopping with her and giggled over illicit purchases. On Christmas day, we would have played board games and drunk Baileys. You would have told her things about me as a teenager that I had forgotten or tried to forget. We would have squabbled about something stupid and she would have taken your side. At times we would have laughed so hard our stomachs ached deep inside. The three of us would’ve got tipsy and you would’ve given her advice about life and men and moisturising. We would’ve eaten chocolates until we felt sick and beaten the ‘boys’ at charades because of our sisterpathy. I would’ve done a Doo-Doo impression, pulling my top lip over my bottom one, and Ashley would have announced she had disowned me. We’d have sung ‘Doo-Doo on a jet plane’ really badly and collapsed on the sofa laughing.

In our pyjamas we would’ve snuggled up with an Irish coffee and watched a Christmas film. Your bony elbow would’ve dug into my side and we would’ve bickered and Ashley would’ve told us to be nice to each other. I would’ve lain my head on your shoulder. Your cheek would’ve smelt of lily of the valley and roses. I would’ve linked my stubby fingers through your piano playing ones and you would’ve kissed my forehead and said

I so love you JueyAndy candlelight

and I would have smiled from the inside out and told you the same…

I so love you too Pandy, and I miss you so very, very much.

Until we meet again,

Your little sis xx

On family: You’re a long time dead

The comings and goings of almost adult children brings instability, an ever-changing family scape. One leaves for a year and then returns, another has just left for university, and another (my nephew) has moved in.  On top of that we got a new puppy (it seemed like a good idea at the time).

I am feeling overwhelmed – like I should be attending to multiple things, only I am not quite sure what those things are (except when I am just about to fall asleep). I don’t like this edgy sensation, but I also know this flux is going to continue for a good while yet, so I am going to have to get used it, or run away and hide.

beach hut

I remember my mother talking about wanting to live all by herself in a beach hut by the sea when I was the same age as my children are now. At the time I didn’t get it and thought her desire both ridiculous and selfish. Now I just want to bang on her driftwood door and be allowed to enter her haven of order and certainty.

There is some research that suggests that lifetime happiness is shaped like a U, decreasing steadily until the age of 44 before rising again. Other research correlates happiness with the age of your children, dropping as they reach teenage years only to rise again once240098_10151212539561346_156497008_o they leave home.  However, I am not sure what happens when you reach forty-four at the same time as your children leave home, but also come back again, and you add another one (and a puppy) into the equation.  Am I heading for my happiest or unhappiest year yet? Will I even have time to notice?happy U

And then I am reminded of the saying; be happy while you’re living, for you’re a long time dead.

It is so easy to get caught up in the minutiae of life, to rush from one task to another without considering just how invigorating change and instability can be. So things are little manic right now. But before I know it, the children will be gone, the puppy grown, and all I will be left with is a perfectly ordered home and deep yearning for the past, unless I too embrace this state of flux, go with the flow and see where it takes me, rather than wishing everything could remain the same. There’s plenty of time for that, but only when I am dead.

On family: She’s coming home!!!!

It’s been three hundred and sixty days since she left. Now there are only two to go and I can barely concentrate on anything, unless it is related to her.

Her bedroom has been completely gutted, cleaned and put back together. The vast shopping list is written, containing all the foods she has missed, like blueberries and strawberries, cheese and chocolate spread. Car cleaned inside and out (more so she can see the standard she must maintain). Insurance restarted (although she owes me) and the rest of the house is in the process of a thorough spring clean and sort out. It feels like I am in the final weeks of pregnancy. This need to nest is all consuming.

A year away from home is a long time.  At the beginning, I wasn’t sure how I would get through it. I measured my progress by events that I had reached.

The start of school in September.

A weekend away with the girls in October.

My husband’s birthday in November.

Christmas in Blackpool (where I got horrendously drunk).

Reaching the halfway point in February,

and then the countdown to our visit in March, which left us with mixed emotions – utter joy at seeing her well and happy, but heartbreak at leaving her behind.

The final four months have been the longest, and the nearer her return gets the slower the time seems to move and the more I worry something will go wrong…

Bus crashes, flight hi-jacks, dengue fever, kidnapping at gunpoint – you name it, I’ve obsessed about it.

Before she left, she said to me as only an eighteen year old can:

Mumma, I want you to know, if I die when I am out there, I will have been happy and fulfilled.

Just don’t die on me, please, OK? I said, and have done at every opportunity since.

I know she will be apprehensive about coming home (as well as excited). She has changed and so have the rest of us. A year is an especially long time when you are eighteen. There will be a period of adjustment. I am sure it will be stormy at times. She left home a child and is returning an adult.

But right now all I care about is that she gets here.

So for one more time, my darling daughter, please, please don’t die on me. OK?

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On family: coincidence or connection?

It would be fair to say, I am not one for flights of fancy. I will always look for the rational explanation for supposedly ‘spooky’ occurrences. The mind is not the objective tape recorder, many believe it to be, rather it is easily tricked and distorted (see experiments by Elizabeth Loftus on planting false memories) and it often trips over itself, for example deja vu and tip of the tongue syndrome.

Take the ghost on the staircase…

ghost on staircase

… this is a result of the mind’s acute sensitivity to the human form and our evolutionary imperative to survive  – better to see an enemy that isn’t really there, than to not see one that is.

I do admit to a softening of my stance since my sister died. They are things she experienced in her final weeks that I have trouble explaining away or putting down to the opiates. The little black cat is one. A friend mentioned that my sister kept seeing a little black cat skulking around the room. At the time I dismissed it as a waking dream brought about by the pain medication, but it wasn’t until after she died I discovered the only time my sister saw ‘the little black cat’ was when this particular friend was present – and that this friend had a black kitten as a child, which died, leaving her devastated. My sister also saw an old man coming in and out of the bathroom in her room at the hospice. She said he looked agitated, like he needed to wee but couldn’t. She would get very cross with him and tell him to find his own room.

Do I dismiss my sister’s observations as hallucinations? Or accept that in her altered state, she was able to see planes of existence the rest of us couldn’t?

Bank holiday monday, just gone, was one of those ‘spooky’ coincidences, where two or more events occurred together that do not appear to be causally related. But then why is the idea that the events happened by chance any more plausible than the idea that they are infact connected by waves of seriality (unknown forces), which carry meaning to the person experiencing them. (Wiki link)

The day before the Bank Holiday Monday we went for a walk to Maulden Woods – me, my husband and our dog. I sometimes go there as the woods back onto my old childhood home, dating from the seventeenth century. I moved there when I was twelve (my sister fourteen) and my parents were custodians of its eccentric character for nearly twenty years. After our walk we decided to stop off in the pub next door to the house, and noticed it had been ‘sold’. We briefly discussed who might have bought it and I reminisced about living there. I said I wished I could look inside and see what had been done to it in the twelve years since my parents moved out.

On Bank Holiday Monday, we decided to go for another walk which ended in a pub, but this time we left the car at home, so we could drink more beer! and headed  across Flitwick woods towards Steppingley and the French Horn, where we were assured of a dog friendly pub and sun bathed beer garden.

The garden was buzzing with people and chat. Our dog paraded around greeting everyone who had turned out to see him (his world view). A family arrived and sat down beside us. They had two little girls, with long blonde hair. The parents, I guessed, were near our age, but then I tend to think I am still in my thirties so make of that what you will. We talked dogs. They had a gorgeous, plump six month old puppy. The owner of the pub, also a dog lover, joined in and we told him we were adopting a rescue dog in a few weeks (we are going to call him Fred).  The first pint of bitter went down in a sunny, doggy haze. Eventually the little girls went with their mother to play in the nearby park. We moved from discussing dogs to where we lived. I joked about being dragged, kicking and screaming, to a village at twelve (from Luton) and being stuck in the middle of nowhere. I cautioned the father that his daughters wouldn’t appreciate village life and he laughed and said, too late, because they had just bought a house in the village of Maulden. The ‘sold’ sign flashed in my mind.

“Not to Holly Cottage, next to the Dog and Badger pub?”

“Yes,” he said, “The offer has just been accepted.”

The hairs on the back of my neck rose, deliciously.

my sister and my dad in Holly Cottage.
my sister and my dad in Holly Cottage.

His two daughters, just like my sister and I, will have the two attic bedrooms tucked under the eaves, impossibly hot in the summer and like ice in the winter. I told him about finding the vast inglenook fireplace behind the Victorian mantelpiece, and the cellar under the kitchen floor, and the death-watch beetles, tapping until dawn, (although I left out the flying ants swarming in the lounge each summer, and the fat, buzzing May bugs that invaded the bathroom in the attic). We mentally walked through the house together and I pointed out all the things my parents had added – like the huge bathroom on the first floor, with the tub in the centre of the room, and the wrap around conservatory.  We parted, swapping phone numbers and a promise that my parents (and me) get a visit when they’ve moved in, which I know will mean as much, if not more, to them. Holly Cottage was our last family home before my sister and I left to make our own lives.

I guess, in hindsight, and without the soft haze of beer, I can explain it away. If I hadn’t visited the pub next to my old house the day before, I wouldn’t have seen the ‘sold’ sign and we probably wouldn’t have discussed living in a village at all – my unconscious mind no doubt prompted me to start this particular conversation.

Or I can choose to see it as a wave of seriality, caused by unknown forces from somewhere beyond the constraints of the here and

outside Holly Cottage. my husband, daughter and me (pregnant with my son) in 1995.
Outside Holly Cottage. My husband, daughter and me (pregnant with our son) in 1995.

now. I didn’t tell him that my sister had died five years ago. It was nice to talk about a time when she was fully present, without the complications of sympathy. And who else (except my sister) would want to talk about my childhood home in such detail than the man who has just sunk everything he’s got into it.

As I said, I’m not one for flights of fancy, but maybe there are things that scientific empiricism will never be able to explain … and just maybe what happened on Bank Holiday Monday was a ‘gift’ (an enduring connection between my sister and I) – and a reminder that little black cats and ghosts on the stairs, cannot, and should not, always be explained away.

On family: To my adventurous and daring daughter

SAM_0078Saying goodbye to you for the second time was no easier than the first, particularly as you were entering the most chaotic bus station I ever experienced, situated in the murder capital of the world. I am sorry I cried, I did try not to go all ‘weird’ on you, but you and I are different in that way.

Spending a week with you in Honduras was truly special after eight months of having to make do with the lingering scent of you in your wardrobe  – yes, I am going all ‘weird’ again.

I won’t lie, I was petrified about coming to Central America, and only you could have got me there. You were right of course; the people of Honduras are, in the main, kind and decent, just like people are everywhere. But, and call it paranoia if you will, where you saw curiosity in the attention of the locals, I saw hostility, particularly on the Bay Island of Roatan. The disparity in wealth is overwhelming and uncomfortable, particularly on cruise days, where tourists are disgorged onto the island en masse for five hours and not a minute more, to swarm over the local shops, waving dollars in their well-fed fists.

When we got the taxi to West Bay and you negotiated, in Spanish, a local price, I realised how much you have become your own person and how small my part in your life is now. And when the taxi driver stopped to pick up two Canadians from the port and charged them three times the amount he had charged us for a third of the distance, I couldn’t help but revel in our shared camaraderie and the reflected glory of being able to speak the lingo – even though of course, I don’t speak a word. It was both disconcerting and exhilarating to be the on the other side of our relationship.

I loved our bus ride to Santa Barbara. I loved the fact you wanted us to experience the way you travelled. Yes, we could have afforded a taxi, but then I would have missed the sellers, hawking juice in plastic bags, which you bite the corner off and suck out, jumping on at one stop and then off at the next.  I would have missed the slow crawl through dusty towns and villages, where people gathered around the bus stops for a chat and a drink and something to eat because no one ever knows when the bus will arrive. Although poverty is not romantic, there is something to be said for the loss of community that individual wealth brings.

I won’t deny I nearly keeled over with heat stroke when we arrived in the tiny village of Gualjoco and foolishly decided to accompany you, in the heat of the afternoon, without a hat, to meet the Honduran families you have been living with since August. Your ten minute walk turned into a twenty minute hike, it seems you haven’t adopted the Honduran pace, even if you have adopted the people and the food.

I still can’t get my head around who would build a five star hotel in a place as remote as Gualjoco, particularly as we seemed to be the SAM_0014 1only guests. I don’t believe it is to benefit the local people, based on their reaction to us bringing fourteen children to swim in the hotel pool.  But I am sure glad we argued our case and despite being fleeced, seeing the children’s joy made every Lempira worthwhile.

Like you, the Honduran people are at times hard to fathom. They want better lives, but there is a fatality in their reaction to what is happening in their country and like their government it seems ‘face’ is more important than action. I remember you said to me before we came out, the Honduran people are wonderful and they want you to be happy, even if that means they have to lie to you. As we waited for the flight to Roatan and every smiling airport worker after another said it would be leaving in five minutes (for over three hours), I couldn’t help but agree with your perceptive assessment of your hosts, but also your acceptance of their way of doing things.

‘Honduran time, mumma, just go with the flow.’SAM_0057

SAM_0028 (1)You cannot imagine the pride I felt, when the families put on a celebration meal for our arrival because it meant that you had turned into the adult I’d always hoped you would. The letter Jesus wrote to us, in which he said you were a strong woman and he would always hold you in his heart, left me breathless.

You wear no make-up or shoes, and your feet are dirty, your hair is loose and long, bleached to amber at the ends, your nail varnish is chipped and your clothes are worn out, but you have never looked so beautiful and I have never been so in awe of you.SAM_0136

The savage beauty of Honduras, I will forever associate with you at your most alive and essential.

Thank you my brave and adventurous daughter for giving me such incredible experiences and memories. I know you cannot, like the jungles of Central America, be tamed or contained and that to truly love you means having to accept this. I am trying really hard, and if you think this letter is me being ‘weird’ again, then you too will have to learn to accept me as I am.

Wherever you go, whatever you do, I will always be there for you, and will always welcome you home.

Love, Mum xx

On family: The challenges may change, but being a mother doesn’t

I just read this fantastic blog post from Mom at Work , Anna Spanos, about how she is working so hard to be a good mother, she feels she is failing to be precisely that.

“Some days […] I am so busy taking care of her that I barely get to just see her.”

Her sense of maternal guilt, although prompted by her daughter’s difficult birth, is one I recognise.  If, like Anna, I make all my daughter’s food from organic ingredients, read to her every night, restrict TV viewing, disinfect every surface in the house twice daily and keep the households medicines locked away, then she  will be safe.

The problem is, whereas Anna can tuck her daughter up at night and baby-proof the lounge, I no longer have that luxury because my daughter grew up!

Once, I was my daughter’s world, and everything she ate, drank, saw, read and believed in came from me. Now she is thousands of miles away in Honduras, a country I have never visited, volunteering in a cultural environment I have little knowledge of.

Saying goodbye to her at the airport in August last year, and watching her walk through the boarding gates, away from the safety of home and me, was physically painful, as if the umbilicus really is still attached. Knowing, at 18 years old, she was flying into the ‘murder capital of the world’  didn’t help matters.

I cried a lot in the first week and each night struggled to fall asleep as I imagined her hurt, alone and desperate for her mother, suffering from malaria or dengue fever, or worse, injured in a bus crash or diving accident, or worse still kidnapped by a gang – there is nothing I haven’t imagined in those dark hours before sleep.

But 8 months later, she is alive!!! and well, speaks fluent Spanish and has travelled far and wide across Central America. She has also turned nineteen, survived the end of the world (she spent New Year at the Mayan ruins in Copan) learnt to scuba-dive, teach English to stroppy teenagers (the same the world over it seems), wash her own clothes, cook and clean (hopefully), as well as snowboard down volcanoes and countless other adventures that I’d rather not know about. At this moment in time she is arranging to move from the project she is currently on to a new one because she feels she can do more to help the people of Honduras in a different organisation.

This is a daunting prospect for me and one I had not foreseen.

I vetted her first project, spent countless hours on the web searching obscure references for the possible dangers lurking behind the glossy website. I was there helping her to write letters to charitable trusts, doing research, fundraising, and sorting out travel arrangements to Scotland for her training. Even though she was striking out on her own and leaving home for the first time (to go to the murder capital of the world – can’t shake that thought), I had control, was able to steer and direct her.

This time round I have been left on the sidelines. She has researched and found the second project, gone to visit it, made the difficult decision to leave where she is and start up somewhere new, on her own. Although she has informed me along the way, she has not asked for my opinion, or for my permission. I have had to see things from her perspective and offer her guidance rather than tell her what she must do. I have had to trust her judgments and support her decisions, rather than make them for her.

This is by far one of the hardest aspects of motherhood I have ever encountered.

A big part of me wants to insist she stay where she is. Tell her that I know best and that she is silly to take on a new project.

Yet, when we manage to skype, I can hear the excitement in her voice and the determination that she is making the right decision.

And so I remind myself I brought her up to think for herself. To make thoughtful decisions and consider all options. This is the first time she has ever had to, and I have to trust she will do it the way I taught her.

Did I teach her well enough?

I don’t know what the right thing to do as a mother is (I never have). But I do know undermining her decisions, or trying to manipulate her thinking to suit what I want (to stay where she is because I know she is safe, if frustrated) is not the right thing to do, however difficult  it is to give up control.

Her dad and I fly out to see her in a few weeks. By then her decision will be made and her new plans in place. What I do know is, I will hug her very tightly (and probably cry). I also know I will tell her how proud I am of her, and, for a few nights at least, I will get to tuck her up in bed again, just like I used to.

The challenges may change, but being a mother doesn’t. Nine months or nineteen, you still want to do everything you can to keep your child safe – and when you realise that you can’t, that despite all your efforts they will make their own decisions and mistakes, you can only hope you did it right, or at least you did it good enough.

Life cannot be baby proofed, but maybe you can life proof your child, so whatever they face they will make the right decision – or at the very least the one you would’ve made 🙂

At 9 months
At 9 months
And at 19!!

What is the right balance? Do you feel you have got it right? All thoughts welcome. 

A review: My top ten for 2013

Time to review my list for 2013, one month in:

  1. Get an agent- well, I jumped. MS is sent.
  2. Get a publisher – depends on 1.
  3. Fast twice a week – yup, still doing it. Still feel great. Husband starts it tomorrow.
  4. Meditate regularly- not once. I really must start doing it again. Make time.
  5. Enjoy the moment (live in the present) – always trying, but would help if I meditated.
  6. Worry less (see no. 5) – nuff said.
  7. Read more books – reading two at once, currently. Spent a great train journey, immersed in Sadie Jones, Small Wars.
  8. Write more (instead of procrastinating on the internet) – well I’ve sent the MS and my friend and I are challenging ourselves to write something new each month and put it in our shared dropbox.
  9. Keep blogging- love my blog.
  10. Accept change is part of being alive and embrace it – I’m getting on a plane to Honduras! And looking forward to it.

Anti-aging secret:but which is it?

. DSC05761 (2)

20121222_170401An age spot on my left cheek has completely disappeared, and the seborrhoeic keratosis (benign warty growth) on my back, which the doctor said was due to age, has fallen off. On top of that the form of arthritis I have suffered from since childhood, ankylosing spondylitis, which necessitates taking Voltoral daily, seems to have put itself in remission. I haven’t taken a painkiller for over two months, and have not once woken with back pain or stiffness.

What the hell is going on?

Two major changes took place in August at around about the same time. My wonderful, energetic, annoying, make-up and clothes borrowing (stealing), daughter, left home and is currently living and working in Honduras. And…

I started the 5:2 diet. Which means I eat normally five days a week, and fast on two days (one 500 calorie meal).

So which is it that has led to the turning back of time?

Well, the daughter is back in August 2013, and I intend to keep fasting twice a week for the long term, so I guess this time next year, I will have my answer. If the age spot is back; I am out of energy; have a back covered in warty growths; and am popping pills for pain, then the only option will be to kick the daughter out for good.

Anyone else tried the 5:2 diet? If so what changes, aside from weight loss, have you noticed?

On Family: holidays

I have a confession. I am not normal.

Who is? I hear you say.

No really, I am not normal.

I hate holidays. Not having time off work – I’m not that abnormal. No, I mean going away on holiday. I hate it. Hate it. Hate it.

i hate holidays

It doesn’t matter where it is, or for how long. As soon as I get there I immediately start pining for home and suffer from terrible homesickness (not a vague depression, but an acute physical reaction, with vomiting and stomach cramps). I always used to put it down to a tummy bug, but it happens when I holiday in the UK, and without fail, as soon as I start the journey home, I begin to feel better. Once I cross the threshold, I am completely cured.

I’ve given up worrying about it or pretending otherwise. I am a homebody, and luckily I married a man as equally averse to travelling as I am.

The only thing I love more than being at home is being at home with both my children tucked up in bed, which at nearly 19 and 17 is rare occurrence these days; even more so since our daughter left for Honduras in August for a year’s volunteering and travelling.

She, as you’ve probably gathered, does not take after me, or her father. Her rucksack, covered in badges from places like Cambodia and Nepal, India and Thailand, belonged to my sister. My adventurous and determined sister, who filled her niece’s head with tales of exotic palaces and fragrant bustling markets, when she came to live with us in the last few months of her short, but drama packed life.

Ever since then (five years ago) our daughter has been adamant she would take a gap year after her A-levels. And ever since then, I have been trying to convince our daughter that 18 was far too young to go travelling and wouldn’t it be better all-round if she waited until after university.

Of course, my adventurous and determined daughter listened to her aunt, who, as she is dead (with all the glamour of dying young and beautiful) held an unfair advantage over me. Thanks sis. Not.

honduras_mapsSo with a heavy, heavy heart, I said goodbye to her in Heathrow terminal 5, four months ago. And of course she loves it there (for the most part), which is obvious by her lack of contact, unless she needs something.

But the other day she skyped me, not because she needed money or was feeling poorly, but because she wanted to ask if we would like to come out to visit. She wants us to meet the family she is staying with and the project she is working on.

My stomach flipped over, not in nervous dread, but in actual excitement. I miss my daughter. Her laugh. Her scent. Her jingly jewellery. Her funny songs. Her nicknames for us. Her energy. Her soul.

And unbelievably, one week later, everything is booked, even down to the airport parking (you may have gathered I am not one for spontaneity). Despite the fact Honduras is not what you would call a tourist friendly country – San Pedro Sula (which we fly into) has the dubious honour of being the murder capital of the world (though to be fair, this relates to the drug trade, fueled by the usage of cocaine in the US and of course UK) – I am still excited.

I finally get what all the fuss is about. I can genuinely join in the conversations at work (rather than feigning excitement). Except, for me, going to Honduras is a cure for chronic homesickness, brought on not by location this time, but by separation from a little bit of home. My daughter.

On a trip to Italy with her aunty Andrea (my sis) in 2006
On a trip to Italy with her aunty Andrea (my sis) in 2006

I know she will never live at home again, properly, as a child. But wherever she is, I know that is where I will want to be.

Maybe I am not such a homebody after all. And just maybe my sister is laughing at me.

If you weren’t dead already, darling sister, I think I might just murder you. But also thank you for giving my daughter the confidence to experience the world without fear, and in doing so, give me the incentive to see a little bit more of this wondrous planet that you weren’t ready to leave and would have loved to have visited with me.

Honduras here we come! Adios!

Anyone else hate going away as much as me? Or maybe there is something else that everyone, except you, seems to love? Share your quirks here. I won’t judge, much (unless it’s really freaky). 

On Parkinson’s: Falling down the rabbit hole

Me and my Dad

My dad asked me to look into Deep Brain Stimulation surgery for him.  He finds the computer screen hard going these days. It’s like the keyboard and mouse are out to get him, either that or they’ve shrunk like the furniture in Alice in Wonderland. I guess Parkinson’s is a bit like falling down the rabbit hole, where you can’t trust either your eyes or your body, to tell you the truth of your surroundings. 

When he sits in his chair, he slouches heavily to the right. Mum is always saying ‘sit up straight’, like he’s doing it on purpose, but she’s only sharp tongued because he wouldn’t register it otherwise.  He straightens himself, and then I watch him slide slowly to the right once more. If you don’t keep him talking, or sometimes even if you do, his eyes close and he drifts to sleep.  Sometimes he dribbles, but that is only on his ‘off’ days, which thankfully are less frequent than his ‘on’ ones, which brings me back to Deep Brain Stimulation surgery, or DBS for short.

They want my opinion on whether ‘now’ is the right time. My initial reaction is ‘yes’ because I want to see my dad like I do in my head; tall and strong, with a huge booming voice and even bigger laugh. Parkinson’s steal voices, leaving behind a whispering echo. I hate having to ask him to speak up. He is speaking up.

I temper my enthusiasm and tell them I will do some research on google scholar.

My visit ends with Dad going into the garden. He keeps himself busy out there, but this summer Mum took over weeding the vegetable patch because she couldn’t bear to see him struggle. Not that she told him that was the reason. She tells me these things instead. How he’s stopped laying the breakfast table and spends half the night in an upright chair, as he legs do a jig to a tune only they can hear.

Could this operation bring my dad back?

Parkinson’s is a disease that destroys the brain cells that produce dopamine. Dopamine is a neurotransmitter. These tiny chemicals cross the gap between the neurons in our brains. Dopamine is responsible for voluntary movement (so thankfully breathing and heart rate are not affected). Reflexes are unaffected too. Throw a ball at Dad and he will catch it – his body reacting instinctively – but ask him to walk through a door and he will dither backwards and forwards for minutes at a time.

One of the funniest scenes I have ever witnessed was in a narrow hotel corridor in Cornwall. A white haired gentleman, much older than Dad was approaching from the other direction. He too had Parkinson’s, his face expressionless, like he was wearing a mask of his face, covering his real face. Reaching each other, they began a Parkinsonian jig, shuffling backwards and forwards, staggering left and right as if dancing to the Devil’s fiddle  – Devil went down to Georgia. After I had wiped the tears from eyes, my belly aching, I guided Dad past. If I hadn’t been there, they would still be dancing now.

I go back next Sunday for coffee, as I usually do. Dad is looking really good. He is standing relatively upright and only falls asleep once in his chair. Mum sounds and looks upbeat too. She has on a bonkers t-shirt over animal print leggings. Will she ever dress her age? I hope not. We discuss his 65th birthday the following Friday. We are going out for a meal to celebrate. We won’t know until the evening whether dad will be ‘on’ or ‘off’. If he is ‘off’ the evening will be short and Mum will be bristling with disappointment and worry.

I tell them I have done some research on DBS.

Mum’s face takes on that pinched expression she gets when she is feeling threatened.

I tell them the research shows that the global outcomes for those who have DBS compared to those who haven’t, is significantly better. I explain that significant means the findings are not due to chance, but as a direct result of the surgery. I tell them that those who have had it done, and posted their experiences online, don’t regret it and would do it again in a heartbeat.

I tell them that there has been some evidence of cognitive impairments like short term memory loss, though overall these impairments appear to be temporary, and serious events, like psychosis are statistically insignificant (in other words they are the same incidence as in those who don’t have DBS). I tell them the biggest risk is a stroke during surgery. 

I tell them it requires two operations; one to insert the probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. Dad will have to go through a series of assessments first. He will have to come off all his medication for a time so they can see what the most troubling symptoms are. He may not be suitable, but age is on his side.

He hasn’t fallen asleep and his eyes are solid blue, like they’ve always been. I have more ‘on’ days than ‘off’ he says, and the thought of it terrifies me.

‘Sit up straight, Stuart,’ Mum snaps.

He does, immediately tilting to the right again.

‘Well there’s your answer then,’ I say. It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable. We all agree that until he has more ‘off’ days than ‘on’, he should wait.

Mum is pleased he is not considering it, yet. Even though she is angry that Parkinson’s has stolen their retirement and tells me how resentful she gets at times. She is thankful for the good days.

And I realise, under the mask, through the looking glass and down the rabbit hole, my dad is still here. Still strong, still thinking booming thoughts, and still laughing. And when Mum snaps,’ sit up straight, Stuart’, he is still tall, if only for a little while.

As always, your thoughts, comments and experiences are welcome.