The Special One

I’ve just had an impromptu few drinks with some lovely friends, who asked me when my next Blog would be out. I admitted to them that since my last one, I’ve written two more in my notepad but haven’t published them. Why? I don’t want to be the person who is constantly whining about life and how difficult it is. I’ve been a bit sick of the sound of my own self-pity and didn’t want to inflict that on the rest of you. But they all told me that people were waiting for another and so I have promised I would put pen to paper once more.

Paul didn’t come for drinks. He is still getting used to the PEG, and the nutrition-rich formulas that I feed him are playing havoc with his stomach. Having shat himself earlier today, he didn’t trust his own arse to go down the pub. I offered him a sanitary towel, but he declined. I took Cozmo with me instead. I’m glad I went. It’s so easy to cut yourself off from people and I really enjoyed just chatting about shit for an hour. It’s so refreshing to listen to other people’s tales and just switch off from your own life for a while. And, of course, Prosecco is always welcome.

This past few weeks have been intense. I’ve aged 10 years. I look like shit. My Botox has worn off and my eye bags are spectacular! My brain is mush and I can hardly string a sentence together. But it’s Paul that has had to endure some serious shit. Deciding to have the feeding tube fitted was a big step for him, as it’s another win for the disease. He is no longer in control of that aspect of his life, and he has finally had to accept that fact. Driving to the hospital was hard. On a routine visit to the Palliative care team the week before, we had been asked to start thinking about ‘plans for the future’. The leaflet we were handed included questions such as:

·         Would you like to be resuscitated in the event of a medical emergency?

·         Would you like to donate your organs to research?

·         Have you made a will?

·         What kind of Funeral would you like to have

I was going over and over these questions in my mind and realized I didn’t know what Paul’s wishes were should the worst happen. And if I didn’t establish this information I would most definitely make the wrong decisions and he would, without doubt, haunt me forever. I was also very aware that he was nervous having never been admitted to hospital before, and so if I brought these things up I was probably going to make matters worse. But I had to know. So, I asked. He was absolutely fine about it all. I cried. What kind of shitty conversation were we being forced to have? Man, this is fucking harsh.

The operation was not straight forward. The wait was awful and being told that they had to abandon the procedure due to him being unable to breathe, was really worrying. They rescheduled for it to be done under GA, but Paul was told that there was a huge risk of him being on permanent ventilation afterwards if they couldn’t get his lungs working for themselves. I’m glad I didn’t know that until he was out of theatre and awake.

I’ve never seen him look as poorly as he did laying in the High Dependency Unit. He was weak, tired and in pain, and looked gaunt and yellow. He was attached to all kinds of machines that beeped constantly. He was exhausted and could hardly speak. I couldn’t stay for long. I was glad when it was time for the school run, so I could get out of there. I cried as I drove home, not caring who could see me. My big, strong, mouthy, pain in the arse husband was laying in a hospital bed, a shadow of his former self, and not a damn thing could be done to help him. I made myself busy at home, knowing that others would be visiting him (one of them being Nigel, who the nurses thought was his gay lover). Naturally.

But, he was soon home. The PEG is surprisingly easy to use. It looks neat and you wouldn’t know it was there. I mean, I can’t say he’s chuffed to have it, but I think he knows it’s necessary as he continues to lose weight. At his heaviest, there was 6 stone between us. There’s now 2. I’m getting fatter as he’s wasting away! Not on if you ask me. Bastard.

After 6 days without alcohol, he steadily weaned himself back on the beers. Beer is his friend. He is determined to continue his habit for as long as possible. I suppose cirrhosis of the Liver is the least of his worries. He eats when he wants to, but at least he’s got the option if he’s too tired or his hands won’t work. He has now started to use the lift, finally admitting that a fall on the stairs is now highly likely. But I cannot get him on the mobility scooter. It still sits in the corner of his ‘special’ room. The ‘special’ room is where all his stuff lives. We don’t really call it that when there’s no-one around. I might as well be honest. It’s the Spaz room. For his Spaz stuff. Cos he’s Spaztastic. Spaz.

So, life goes on. I’ve got my game face on most days. I have the occasional meltdown, but I don’t let it show because it’s hard for everyone else too. And I must keep things going. It’s amazing what you can deal with when you have no choice. And Paul doesn’t feel sorry for himself either. His consultant said he wishes he could prescribe Paul’s attitude to his other patients, because it’s so refreshing. He just has to be good at everything doesn’t he? Even dying. ‘Yeah, I’m dying, no worries, it’s shit but that’s how it is so let’s get on with it’. FFS.

That’s it. I’m off now to sort his feed. They come in different flavours. Why? It’s ‘Forest Fruits’ tonight. It smells like the worming medicine I had to drink as a kid. Gross.

V X

PS. His Funeral request? No God and no Man U shirts. He doesn’t care about the rest.

Food for Thought

 

I was sat next to Paul the other evening while he ate his dinner. His nose was blocked from hayfever, so he was struggling to breathe with a mouthful, but watching him struggle to dip a piece of celery into his sour cream and onion and then lift it to his mouth was exhausting to watch. Not to mention the chewing. Paul’s jaw is now offset because his facial muscles are not strong enough to hold it in place. His tongue (a muscle) doesn’t move away from his teeth automatically, so he bites it quite often. This weakness also means he can’t move food to the back of his mouth in order to swallow it, so he normally wrestles with one mouthful for a good five minutes.  These factors, coupled with his pollen-filled nose, meant the noise he was producing on this particular evening was akin to that of a farm animal that’d been starved for a week!

Now, you need to understand I’ve always had an issue with noisy eating. It grates on my every nerve. It infuriates me in fact. It’s not good for my rage! It’s actually a thing you know; it’s called Misophonia. Anyway, this particular aspect of the MND has tested my patience. It’s also been a challenge for Paul too. He has many, many, many oddities, one of them being a phobia of saliva, spit, and mucusy substances in general. Particularly the drooly, goopy-type stuff that hangs from the jowls of large dopey dogs, or the white, foamy bubbles that can gather at the corners of someone’s mouth when they speak. It makes him gag. Literally wretch.

I looked at him with a mixture of pity and irritation. Mostly irritation. The noise was unreal. He noticed me watching him, and knowing he was winding me up amused him greatly. He laughed suddenly, (he can’t stop this from happening anymore; another symptom), and out sprayed his food in all directions. Dribble was hanging from his chin as I scrambled about for tissues, chuckling at the ridiculousness of the situation.

“Someone is having a fucking laugh with me”, he slurred (his speech is pretty bad now). “He likes talking – oh, let’s just screw that for him. He likes eating – oh, let’s just make that a massive ball-ache for him. He hates saliva – oh let’s just prevent him from swallowing so he spits it out all over the place. Fucking hilarious! I must have been a mean fucker in a past life!”

He likes the word ‘fuck’ as you may have gathered. It was one of the first words he recorded for the voice bank.

“It just looks like such hard work”, I said, now genuinely concerned for him.

“It is”. He answered. Then continued on his quest, determined to finish what he’d started.

But although we laugh, the seriousness of the situation is real. The problem with the excess saliva combined with chewing and swallowing issues, is that choking is a major danger. You know when you eat a cracker, or some bread, or something dry like that and you accidently breathe in a crumb? Well that’s what it’s like for Paul all the time. As his throat muscles and lungs get weaker, it’s becoming increasingly possible that the next morsel he inhales he won’t be able to cough back up again. This in turn could cause an infection such as pneumonia, which we’re under no illusion will probably be the thing that kills him in the end.

So, he has been a very brave boy and had a consultation with the Gastro surgeon to discuss the fitting of a feeding tube, or ‘Peg’ as it’s known. The tube will be connected directly to his stomach, so that food and essential nutrients can be put straight into his body without the risk of choking. It won’t be a pleasant procedure. It will all be done under local anaesthetic and he’ll be in hospital for a week. He’s been putting it off for ages because he loves his food. He’s a greedy git in all fairness, but now it’s a chore for him and he’s started to skip meals which he can’t afford to do as he needs extra calories for energy as his muscles disintegrate. Paul’s solution up to now has been to supplement his diet with as much beer as possible. I’m quite sure he will attempt to connect said feeding tube to a keg of booze at the first opportunity; however I’ll just be glad to get essential nutrients into his body quickly and easily.

He will probably be admitted for the procedure sometime in September, when the holidays are over and there’s not much going on. Until then he will continue to slop and splutter his way through meal times. He will continue to burn himself on the oven and scald himself with the hot water. He will continue to leave a trail of destruction through the house (I can cunningly deduce where he’s been from the dot-to-dot of coffee drips on the carpet and the sticky splatters on the kitchen floor). I kind of lost my patience when an entire King Pot Noodle was dropped on the sofa, so he is now banished to the kitchen for the consumption of all foodstuffs. At least when I’m at home. I know full well that when I’m not around he loads the lift up with snacks, bumbles upstairs, calls the lift to the first floor and pulls his treats out into the comfort of the living room. Clever sod.

I will keep you all posted on the op’. He’s not looking forward to it, but the prospect of an intravenous intake of alcohol appeals to him. Plus, it might numb the pain of his frozen shoulder now that his bones have apparently fused together. FFS. There’s always something. I’m sure he just likes the attention.

Vikki x

Just had a thought… I wonder if I could get one of those tube thingys for Prosecco purposes? I should ask…

 

 

 

 

 

 

Whatever You Do, Don’t Press the Turbo Button.

A wheelchair ramp has now been fully installed at the back of the house. It’s huge! Paul and me were stood in the garden the other evening contemplating how we could improve the remaining space and make it into a nice place to sit during the Summer (assuming we get one).

“We’ll have to bring the paving out further” I said. “The ramp now covers the existing slabs and we need a place to put furniture. “

A discussion ensued about the logistics of it all. Jack had been hovering in the background for some time and I could see he’d got his own thoughts on the matter in hand.

“Don’t worry Mummy. We can just put everything back to normal when we don’t need the ramp anymore” he said, quite matter-of-factly.

The implications of what he had just said flashed through my mind as I glanced over at Paul. He had an amused expression on his face which began to turn into a large grin.

“Ohhhhh that’s right Jack!” he exclaimed. “When Daddy’s dead you can have it however you like!”

He laughed at his own dark humour. Jack laughed too as he wondered back into the house; “Well it’s true” he muttered to himself, knowing he had a perfectly valid and reasonable point.

You see, we’ve been honest with the boys right from the start.  They know the future outcome of  Daddy’s illness and they are processing it every day in their own separate ways. If they ask questions we give them truthful answers. Nothing is sugar-coated. We don’t hide anything. When we are sad, we cry. When we get angry, we shout. When we are happy, we laugh. And because the boys see us this way they are open with their own feelings and emotions and will express themselves without worrying about what our reaction might be.

During the past year I’ve learnt that kids are tough. They adapt to circumstances far better than adults. We grown-ups over-think everything.  We over-analyse and worry about things that haven’t happened yet and may never happen. Kids don’t. They take each day as it comes and live in the present. The beauty of this is that it makes any given situation much less scary or stressful because they are simply dealing with their current reality and not 100 different imaginary scenarios.

I have tried to take a leaf out of their book. When people say to me “I don’t know how you cope”, I simply say it’s because I have no choice. We have to play with the cards we have been dealt and get through one day at a time. One thing I’ve most definitely become aware of is that everyone is fighting, or has fought, some kind of battle. It’s just most of us are too wrapped up in our own woes to realise. But by taking it day by day and not thinking about 6 months or a year down the line, we stay happy. And we are happy in the midst of it all. This road we are walking has forced us to appreciate each other and everyone around us more than ever before. And not sweating the small stuff we have the freedom to be happy, together.

Which leads me on to tell you how important our friends and family are in the midst of all this. Especially considering how difficult it is for them too. In fact, if you’re reading this, you’re probably one of those people I’m talking about, so I’m going to address you directly, because I haven’t up to now.

Thank you for everything. You are amazing. Whether you have organised events, donated your hard-earned cash, participated in sponsored activities, given raffle prizes, or spent your time and energy helping us no matter how big or small the gesture, we want you to know it is appreciated so much. Your love and support helps us get through every day. You are the best, and I hope that knowing how much you are helping us makes you feel good about yourself, because you should. Thank you so, so much.

To keep you in the loop, the next steps for us now that the ramp is in place and the fancy loo seat is up and running (if you ever use it expect a full tutorial from Max including strict instructions not to press the ‘turbo’ button*), is the installation of the through-floor lift and wet room. The council have (unexpectedly) approved the funding for a disabled elevator from ground floor to first floor, and the builders have started work already.  We have quotes in for the bathroom to be made into a wet room, and the Robert Sinclair-Davidson Foundation has kindly offered to cover the costs of that, which is amazing. This means that Paul will maintain his independence as much as possible and be able to move freely around the house. Something you take for granted until you can’t do it anymore.

So, that’s our news so far. Paul is cracking on with life and fighting every step of the way. He’s breaking all the plates. He’s spilling all the drinks. He’s banging into all the doors and walls. He’s insisting on feeding himself even though it takes him an hour. But at least he’s doing it.

Love, Vikki

 

*PS: The ‘turbo’ button is an enema. Don’t press it. “It shoots right up your bum hole”, Max says. Just so you know.

 

 

Ain’t That the Truth

It’s been a while since my last post. Apologies, but I slipped down a very dark hole, which I’m slowly emerging from. Kind of. Maybe. I think.

You see, it’s hit me. The passing of Professor Stephen Hawking a few months ago made me realise there’s no happy outcome to this grim tale. This is happening. This is real. Shit.

When it was announced on the news of his passing, I felt sick. I cried as the reporters detailed the horrors of Motor Neurone Disease and how it forces someone to die a slow and painful death. It was just too much to bear. Too close to home. On seeing me upset on that miserable March morning, P asked me what I was crying about. “It’s Stephen Hawking”, I said. “He’s dead”.

“Oh”, came the reply. I looked at him. He didn’t seem at all affected by this revelation. “How old was he?”

“76”, I said.

“How did he die?”

“In his sleep”, I answered.

“Hmmm… 76 and died in his sleep.  That’s a bloody good innings if you ask me! I’ll take that!”

Therein lies the difference between me and P. All I saw was the tragedy of the situation, and yet from his point of view this was good news! Stephen Hawking didn’t die gasping for breath, riddled with Pneumonia and in agony. He died peacefully, surrounded by his family. He lived 50 years with this bastard of an illness and fought it every step of the way. From P’s point of view this provided some comfort and dare I say hope. And more importantly it has spurred him on to now accept help.

It’s now time to start adapting the house to accommodate P’s deteriorating condition. He is weakening at a pace and now struggles with the most basic of tasks. Over the past few months we’ve had visits from Physiotherapists, Nurses, Occupational Health and Psychiatrists, not to mention lift-fitters, ramp-fitters and even someone who will install  a fancy loo seat that heats up and washes your bits! And it’s remote-controlled! I’m telling you now – I’m shoving P on a potty ‘cos that bad boy is mine!

P is dealing with new challenges every day. Extreme fatigue is a major issue. The simplest of tasks can wipe him out for hours. He needs a straw so he can drink without spilling. He has to put special drops in his mouth to stop him dribbling, as he can’t swallow often enough to get rid of it (which most of us do without thinking). He can only eat small, soft pieces of food and has an appointment next month to arrange the fitting of a ‘peg’, which is a feeding tube straight to his stomach. Something he has been trying to put off as long as possible. He has to sit with a neck cushion on to support his head, or else he ends up in a lot of pain from the effort it takes just to sit upright. paulHe is so bony from muscle wastage, that it hurts him to lie down in bed. He is in pain most of the time and has constant muscle twitches, and yet he rarely complains. He’s clumsy. He spills things. He falls over. There was a time when I would piss myself at him going arse over tit, but P losing his balance can now have serious consequences, as he cannot use either of his arms to break his fall. Something he finally accepted after throwing himself over the handlebars of his bike (don’t even ask me why he was on the bloody bike), resulting in a broken cheekbone and dislocated jaw. As if I’m not going insane already, I just reckon he’s making sure that I’m going to end up rocking and dribbling in a corner somewhere!

But, he’s a determined swine. When he’s tired he will ask me for help getting dressed, or to cut up his food (not pizza), or lift something, but most of the time he wants to do it himself. Even if it takes three times as long. This is a man who needs two hands to lift a toothbrush, yet he will still vacuum the carpets, or iron a few clothes, or go to the Aldi for the groceries, because life goes on and that’s the way he likes it. Although, he’s not best pleased I’m now stronger than him and can totally beat him up whenever I like! Come on matey, try to tackle me with your ‘special’ arms! No chance. (He’ll be calling me a bitch right now).

But this is what see’s us through. Finding the humour in the dark times. Well, that and a mild anti-depressant. I mean, sometimes that hole is just too deep.

I’m going to leave you with one last thought, from the great man himself, Professor Stephen Hawking: stephenhawking

Ain’t that the truth.

Vikki x

PS: Anyone want to buy a bike?

Let It Go: A Frozen (Berry) Tale

Two bags of frozen smoothie mix hurtled across the kitchen, their intended target standing in the doorway with an expression of bewilderment.

“Fuck off!” I screamed. “Fuuuuck offfff!”

P just stood there and looked at me, shaking his head as icy nuggets of various berries and mixed fruits exploded on the tiles and scattered to all four corners of the room.

“It’s a good job you’re such a shit fucking aim!” he said calmly, as he walked away.

What prompted this outburst I hear you ask? Well, it was tea time and P had settled on the sofa after a full day, unable to move either of his arms. They had weakened to the point of being useless and it was just heart-breaking to see the exhaustion and frustration on his face.

“I’ll make you a nice pizza”, I said and set about putting all his favourite things on it. Pepperoni, salami, fresh chillies, extra cheese and lots of Jalapeños (the pickled ones in the jars).  “He’ll love this”, I thought to myself as I pulled it from the oven and placed it carefully on the plate.

Now, you must understand that P is very  particular about many, many things and pizza is one of them. He will not eat a pizza that has been cut into slices. I know, I know it’s weird, but the pizza must be whole, and he must eat it with a knife and fork. I was therefore faced with a dilemma. His arms were too weak to cut up a pizza. He could manage to pick up a slice of pizza maybe, but he doesn’t like slices. Hmmmm… what to do, what do? OK, I will cut the pizza into bite-sized pieces and then all he needs is a fork to eat the wonderful morsels of deliciousness, lovingly prepared by moi. I presented it to him, delighted with my efforts…

“What the fuck is this?!” he exclaimed with disgust.

My face dropped.

“What the fuck have you done that for?! I’m not eating that! Why didn’t you just cut it into slices?!”

I couldn’t believe what I was hearing. I was trying to help him, and he was furious. I took the pizza, stormed downstairs and threw it straight in the bin. What then ensued is what we will now refer to as ‘berry-gate’.

Looking back now (amusing as it is), I can see that I was actually insulting him. What I thought was a kind gesture was in fact me showing him that I didn’t think he was capable of the simple task of eating his own meal. That must have been frustrating for him. I didn’t ask him what he needed, I made the decision for him and then responded to his anger with my own fury.

People ask me all the time how I cope with our situation and I’m never quite sure how to answer, because I don’t really know. Sometimes people will say, “you seem to be fine/coping well/very strong” (delete as applicable). I look at these people and silently scream (whilst searching for a polite response), because they don’t see the tears and frustration behind closed doors.  They don’t hear the arguments. They don’t see the stress when we’re trying to budget with only one income and a hefty mortgage. They don’t have to answer a 7-year-old’s questions about death at 9 ‘o’ clock on a Wednesday night. They don’t have to witness an 11-year-old boy paralysed with anxiety for fear his Dad might not wake up in the morning. All this bubbles like a pressure cooker, and when you see a smiling face, we’re normally about 3 minutes away from an outburst, a meltdown or a screaming fit of pure rage!

On the darkest days it’s easy to allow yourself to get bitter. I can’t speak for P, but I get bitter about other people’s happiness. I don’t like these days. They feel deeply unpleasant and it’s a part of me I don’t recognise. On these days I don’t want anyone to have fun and I don’t want anyone to be happy. I begrudge good things happening to anyone and I don’t care. Why should she have that holiday? How dare she be dressing up and going out! Who does she think she is driving that car? Oh, look at her – skinny bitch! Aren’t you all just perfect with your husbands not dying blah, blah, blah. I really have to work hard on these days to remind myself that everyone is facing their own difficulties and I don’t necessarily know a damn thing about it.

Then there’s the sad days. This comes if I allow myself to think about the life we will never have. You see, me and P were going to move to the seaside when the boys had grown up. It’s always been his plan to grow old by the sea, with the grandkids running across the sand without a care in the world. But he will never be a Grandad. It’s not meant to be. It’s no longer the plan. And the new plan is just too sad to dwell upon for any length of time.  Living in the moment is the best remedy for sad days. Being present in whatever is happening right now normally snaps me back to reality. Maybe a stiff drink too!

But I’ve come to realise that all of this is OK. It’s important to express these emotions and for the boys to do the same, because that’s the only way you can let it go and stay (reasonably) sane.

So, P is continuing to struggle with his own pizzas (I ain’t touching them). The frozen fruits are being used for their intended purpose and all is currently calm. Well, until the next outburst, but that’s OK.

Oh, and if you visit and find a random blueberry nestled in the corner of the carpet, best not to mention it.

Vx

[VB1]

This Man Can

P and I were sat watching ‘First Dates’ the other night. There were a few people on the episode who struggled with conversation and didn’t know what to say when introduced to a complete stranger.

 “I don’t get it”, P said. “Just ask questions, make chit-chat, have a laugh – it’s not difficult”.

“Some people find it very difficult” I said. “It doesn’t come easily to most of us”.

“It’s always been easy for me” he said. “I could always pull birds with my banter, I was good at it! Now of course I don’t say anything. It’s just easier not to.”

P has always had the gift of the gab. It was his sheer cheek that attracted me to him the night we met, 17 years ago. He had all the chat, said all the right things and introduced me to his colleagues who were with him on their Christmas party. They obviously loved him, laughing along and joking around. He seemed to be the entertainer, the centre of attention I remember – keeping spirits high and getting everyone involved. He had a wicked sense of humour and I liked it!

We sat for a few minutes and mulled it over.

“It’s a cruel twist of fate really isn’t it?” I said. “Having all that taken away from you”.

“Yep”, P said, mournfully. “I can no longer do my two most favourite things….”

A wry grin appeared on his face. I’ll let you guys work out for yourselves what the second thing is. FFS.

Having a basic function taken away from you can fundamentally change who you are as a person. I’ve noticed the subtle differences in P’s personality and how Motor Neurone Disease is chipping away at his confidence as well as his physical capabilities. Of course, he’s full of the usual bravado on the outside, but he will no longer pick up the phone to make a call, even to order a takeaway, for fear of the person at the other end thinking he’s downed 10 Jaeger-bombs for breakfast!

However, that’s the only thing he shies away from. As far as everything else is concerned, it’s a personal challenge. When people ask me how P’s doing, there’s always a focus on what he can’t do. I’m as guilty as the next person, focusing on his slurred speech, his weak arm, his neck not being strong enough to support his (giant) head. But he doesn’t do that. He concentrates on what he CAN do. He does the housework. He does the washing. He does the ironing. He does the school run. He’s teaching himself how to use his left arm for most things. He still put the Christmas fairy lights on the bay trees outside, (even though he had to dance round them like they were tiny maypoles, to get the lights placed nicely)!

On a recent Christmas holiday visit to Stockeld Park, P decided on the journey over that he probably shouldn’t risk a fall on the ice-skating rink and he would sit it out this time. But lo and behold when it came to the crunch he just couldn’t say no. I watched as he clung to the side all the way round the rink, not daring to let go because he knew he wouldn’t be able to keep himself up. Stubborn sod he is. The kids then fancied a trip around the ski-trail. He agreed that we’d have a leisurely walk around the lake whilst they grappled with skis and poles, but as the boys emerged from the cabin all trussed up, so did P. “I can do it!” he said, as I rolled my eyes and set off on my solitary walk. Still, it meant I could laugh and point as the kids raced ahead and he bumbled his way down the track. Muppet.

PaulSkiing

But this is who P is. He will not give in to what’s happening to him. If he didn’t continue as ‘normal’ he would go insane. Yes, Motor Neurone Disease is all about the body failing, but the mind does not. It never will. P knows that in a year or maybe two, he’ll be trapped inside a body that has simply stopped functioning, making him a prisoner within his own self. So, whilst P can still do stuff, no matter how hard, or whether he ‘should’, he will. For his own sanity if nothing else.

To that end, we’ve made a big family decision. I’d like to introduce you to Cozmo! He’s a beautiful Springer/Lab cross and we pick him up in a few weeks! Cozmo will be a welcome bundle of happiness, and the idea is that he will be support, comfort and distraction for the boys, both now and when things get tougher.

Cozmo

So…. P has now got some serious work ahead, with all the training and walking and turd-cleaning! Ah well, it’ll keep him busy. He’s more than capable after all.

 V x

There’s Always a Way

I was sitting at my dressing table, trowelling the makeup on ready to face another day.  P was getting ready as usual, but this time when I looked round he was kneeling down, his head on the floor in some kind of praying position, trying to dry his hair with the hair-dryer he can no longer lift. “Let me do that for you” I said, trying to fight back the tears. “No” he replied. “There’s always a way”.

You see, my husband is dying. Sounds a bit dramatic doesn’t it? But the fact is, that at the age of 41 he’s been diagnosed with Motor Neurone disease and probably won’t make it to 45.

When I sit and write those words it sounds heart-breaking, and there are times when the world seems so black we can barely get through the day. There are times (although increasingly rare) that we don’t think about the diagnosis at all. But most days we face the music with humour as much as we can, because that’s the only way we know how to cope.

For example, P used to enjoy singing. He would sing during a long commute in the car, in the shower, around the house; he was always belting out some tune or other. He never got the lyrics right. He would sing the most random words to songs (think Peter Kay’s “just let me staple the vicar” routine). And he was flippin’ LOUD! He still tries to sing occasionally, but the signals from his brain to his speech muscles no longer work properly, so when he’s three lines behind the rest of us I can’t help but laugh at how ridiculous he sounds! He says I’m an evil b*tch for doing so. But if I didn’t laugh I’d probably cry.

Comedy falls are also hilarious of course. P’s core strength is now so weak he can’t stop himself from hitting the deck when he loses his balance, like most of us can. You can imagine the fun we’ve had in the recent icy conditions! Whilst we were out on a country walk last weekend he totally lost his footing in a muddy field, and because his arms are too weak to break his fall, he ended up covered in mud from head to toe. The boys were laughing for hours!

But I have decided to write this blog for a more serious reason. Me, P and the boys all know that over the next year, or perhaps two, he’s going to become a man we don’t recognise. He will be with us, but trapped in a body he can’t control, and his voice will be heard through a computer. I don’t want to forget him. I want a record of this part of our life, both good and bad and everything in between.

So, this is the first of many blog posts about how this ‘short circuit’ in P’s brain is taking hold. It might make you sad at times, but my intention (for those of you who know him) is to take some comfort in the fact that that my wonderful husband is facing this illness with strength and positivity. Something that helps me and our two boys through the most difficult days.

Until next time…V x

PJM