Tag Archives: dad

If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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MS Survivor’s Guilt – Is That Even A Thing?

guiltIt’s bad enough being made to feel guilty by some fellow-MS’ers, now I’ve had Alemtuzumab treatment.

‘You’re lucky.’

‘You don’t know what I’ve gone through.’

‘Are you sure you have MS?’

Before this treatment, I was a wreck – relapse after relapse was destroying my body – I barely had time to breathe before the next onslaught.

The treatment is brutal but effective; it’s held off the endless relapses and hopefully I will manage to see The Teenager off to University – my main aim.

My detractors forget something.

Not only do I feel ‘bad’ that I’ve been deemed eligible for a treatment not everyone can access, but I also live in the shadow of so-called survivor’s guilt.

My dad died from his MS complications, way back in 1978. His birthday would have been today. He was 35 when he died.

When MS first appeared when I was 37, I’m not ashamed to say I panicked. I fell down a deep well of despair. I went in to denial. This could not be happening to me. There was no way it could happen. Could history really repeat itself?

Well, it seems it could. I was diagnosed four years ago this May and as my MS was highly-active and rapidly-evolving, I took the step of taking Alemtuzumab treatment. I have now had three courses over the last four years. The relapses still appear, there’s just fewer of them.

As I was hooked up with a cannula, having steroids first, then a flush, then the treatment, I lay back and thought about how lucky I was. Not to have MS, but to have the treatment options.

So, today, on my dad’s birthday, I will mourn everything he missed out on due to this disease. The unfairness of it takes my breath away. I miss him.

And if I have elected to undergo a horrible treatment three times to make sure I can give The Teenager experiences I never had, I will.

Why wouldn’t I?

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So You Can’t Miss What You’ve Never Known?

Dad2It’s strange.

I grew up ‘knowing’ my dad died of MS.

I was guided to a window shortly after his passing and shown him travelling to heaven.

A lot of people get angry when I tell them this  – you don’t die from MS.

Well, back in 1978, you did.

There were no MRIs, no disease modifying drugs, nothing.

Technically, he died from a complication arising from his MS; in my mind, he wouldn’t have had this complication at the age of 35, without having MS. Which came first?

So, yes. It was normal to grow up with one parent. I missed him at seminal points in my life and often wondered how he would laugh, how he would hug me, how he would sit down with me and put the world to rights. How he would protect me. I strove to bring the photograph to life to no avail.

When people found out my dad died when I was four, they were sympathetic, of course. And I would reply,

‘You can’t miss what you’ve never known.’

I was adamant. A protective mechanism?

I now stand corrected. You really, really can.

At 37, broken and alone, I missed him more than anything.

Think of the conversations we could have had! I would compare symptoms, speak with someone who understood exactly what I meant by ‘fatigue’, ‘nerve pain’, ‘abject terror’. He would have held my hand and understood.

When I was going through the diagnostic process, I felt closer to that figure in the photograph than never before. Now I knew. Now I had an inkling of what he had gone through.

It was this that made me choose Alemtuzumab as a treatment option – I was going to blast MS with everything my dad never had. Call me sentimental.

On this sentimental strand, I would like to think he would be proud of me and all that I have achieved, despite MS. Sure, I have collapsed, reached rock bottom and felt like there was no tomorrow.

But everything I have done since, whether it is making The Teenager toast or writing a book, it is all with my dad at the back of my mind. According to others, he was intrepid, fearful of nothing.

I would like to think I have picked up where he left off.

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MS + T + W + MA = Stress?

new to MST = Teenager and W = work – an impossible equation.

The MA is just the wildcard.

MS = LIFE x 1000.

I’ve been exploring the theme of MS and radical life changes recently, and a good few of you have got in touch with your own incredible stories, both personally and through the blog.

The overriding theme is, ‘ok, I’ve got MS, but I changed my life for the better, and decided to do what I always wanted to, sticks/wheelchair/nerve pain or not’.

Of course, walking with a stick or waking up to numb limbs doesn’t tend to feature heavily in our good-news scenarios but the fact that a large number of us appear to live more fulfilling lives puts it all into perspective. Yet it can take a while to get used to.

Like me. On Monday, we had our book club Christmas party. Readers, I had to take my stick.

Awkward. I had unwittingly marked myself as ‘other’, even though I knew I could grasp the tables and chairs and stagger my way round the room without it, the stick was a solace and it helped. I am proud and didn’t want to look like a toddler taking their first steps or face the inevitable whispers of, ‘has she? Too much red? She always says she dances on tables when she drinks red’.

Yet the stick also rendered me speechless and quiet. And anyone who knows me will know that’s pretty unusual.

Anyway, Monday taught me a lesson. I am still the same person, with or without a stick for balance. Perhaps I should fashion my own one from driftwood, imbuing it with magical powers, terrifying the neighbourhood children. I already have the black cat, so why not?

What I’m trying to say is, what does it look like like to have MS? For me, and people like me? The few memories of my father are distorted and shaped by familial prompting. All I remember is that in his final days, he lost his power of speech and moved from his wheelchair to his bed. And he looks odd in the few photographs I have, whereas I appear to be happily sucking my thumb on the grass in the backyard.

So, what am I? Yup, I got his eyes, his chin, his dismissive sense of humour. And for good measure, the MS.

Who are you with MS?

Are you still denying its existence or have you accepted it and understood that you are not MS. It does not have you, unless you allow it.

For those of you with more advanced forms than I, I apologise. The aim of this post is to inspire us who are still at the beginning; if we give up now, who’s going to care?

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My Life As A Half-Orphan

Father's DayDadExcuse the sensationalist title.

Tomorrow is Father’s Day, that one day in the year I dread/look forward to in equal measure.

My dad died a few months before my 5th birthday as a result of complications arising from his MS – the biggest complication being that he had MS in the 1970’s.

No MRI’s, no DMD’s. The first picture is of me at nursery before he died. That dress! And I still bite my lip.

Anyway, I first became aware of Father’s Day when the kindly folk at Social Services held a party for all us peeps who had lost a parent (careless). Being told at every juncture that this was for our benefit as we were poor, deprived children who couldn’t hope for much in life put paid to that and I left, humiliated and confused.

In primary school, I dreaded Father’s Day. We were told year in, year out, to draw our family. In Year 5, I drew my older brother standing on a rock, so he looked taller than the rest of us. If the teacher squinted, she could perhaps think he was my dad, as I placed him before my mum. I was embarrassed. Divorce was unusual, the death of a parent was non-existent.

In Year 6, I was called forward to the teacher’s desk on the first day of term and asked about my dad. Must have been a marked-point in the register. I replied (in front of the entire class) ‘Yes, he’s dead, can I go back to my seat now?’

Fast forward a good few years to my wedding day. A mixed blessing. I missed my dad. Fast forward some more years and I come to the whole MS palaver. I got his eyes, I got his MS. I hope I got his cheeky sense of humour too.

I’ve cobbled together tales I’ve learned about him – how he hung out tea-bags to dry on his sister’s washing line to wind her up in front of her neighbours, how he sat before a glass of water in a pub for so long, when people came up to him and asked him what he was doing, he told them he was waiting it to turn to wine. Gentle humour, but it makes me smile.

Now, I don’t feel so sad. He was 35 when he died, I’m now 40. He really does live on – in my son, with his cheeky grin and knowing look. I just wish he had the chance to meet his grandchild.

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