Tag Archive for young

Victims, Tattoos and Survivors

One of our number has had a one-word tattoo done on her wrist.  It says “survivor”.

Others among us have asked if she’d mind if they copied her, such is the strength of feeling about it.


I don’t want a tattoo.  I don’t consider myself a survivor in a strong sense of the word at all.  But I do understand those rallying – on other message boards – to remove the word “victim” that people often put after “stroke”.

Do I sound like a victim to you?  Of anything?

I’ve blogged about the power of labels before.  But other than the girls and their tattoos, and someone else pointing out very loudly that he “wasn’t a bl**dy victim, thank you very much”, I had cause to think about it all again the other day.

I was getting bloods done at the nurses surgery attached to my doctor’s surgery.  They were doling out flu jabs and, having had a stroke I’m supposed to have one.  When that flashed up on the screen the nurse looked at me kinda funny:

Weird,” she said, “This thing thinks you had a stroke.

“I did.” I said.

No, it thinks you had an actual stroke.

“Yeah, I did.”

You’re too young for a stroke.

“Yep.  Happened anyway. VAD.”

God, when?

“Two years and three weeks ago.”

Blimey.  Wait here a sec.

And off she went to the nurse in charge to find out what to do next.

We’ve a young girl here [she said this, I promise!] who’s a stroke victim.  She’s really young and she looks great.  Do you think she needs the flu jab or not?

“Well.  Stroke victims get it.  But let me check.”

Right… Besides the overuse of the word ‘victim’, check what?  And why do I get prickly every time someone uses that word in relation to me?

The Oxford English Dictionary defines a ‘victim’ as:

  • a person harmed, injured, or killed as a result of a crime, accident, or other event or action:victims of domestic violenceearthquake victims
  • a person who is tricked or duped:the victim of a hoax
  • a person who has come to feel helpless and passive in the face of misfortune or ill-treatment:I saw myself as a victim[as modifier]:a victim mentality

I suppose that whilst the first bullet point is technically factual, I tend to associate the word with the second or third bullet points.  As do, it seems, a lot of my new stroke-made friends.  And I suppose that’s one of the reasons we hate it.  

When it all first happens you are in other people’s hands.  Then you’re either helpless or having to make a conscious choice to hand over responsibility to someone else.  I was  definitely the latter; I fought to stay in charge even though it was flipping hard work until I finally had a neuro who told me exactly what was going on and that he was “taking me back to his hospital”. That was 19 hours after I got to the ED so it had taken some time for everyone, including me, to realise that it wasn’t nothing that was going on.  But after he said that I pretty much blanked out for 24 hours, probably because I knew I didn’t have to be in charge any more.  But as soon as you can – and in my case within a day or so, all heparined up, you take it back because – lovely as everyone might be – you’re in charge of you.  You might not be able to walk or even sit up, but as soon as you can talk – and luckily I could, if a little slowly for a while – you can be in charge of you.  

Does that sound like a victim to you?  No, me neither.  And it’s been 2 years people.  How long do you want to apply the label?!

Anyway, I got the jab.  We also worked out I was a little older than they thought I was, but anyone else who wants to think I’m still in my 20s may go ahead with my blessing! And I wondered if I should ask them to drop the word ‘victim’ from their stroke vocabulary.

I didn’t of course.  They were lovely and I didn’t really think it through very hard while I was there.  But there is something utterly disempowering about attaching that label.  In the same way, it feels somewhat overegging the situation to attach the word survivor in my case.

So victim is kind of insulting, if I’m honest.

Survivor definitely applies to some, but not to me.  

Most of us just get on with it.  Simple as.  No labels required.

Thanks though.



The one where I move… and maybe write a book

moving house

I’m moving.

Out of the city.

Creating a new life.

It’s time.

If you’d told me when this all began that it would end up with me leaving my life in the city to find a new area, a new home, new job, new friends, and so on, I’d have told you to get stuffed. Mostly because I wouldn’t have wanted to believe that could be the outcome, rather than because it wasn’t true.

But it’s not just the stroke that’s got me to this point.

If you haven’t worked it out already, I live in London. I haven’t named locations much before for various reasons, and I probably won’t blog on where I’m going either. It’s a security thing. London is an unusual place. There are big, huge jobs here, and very expensive housing. It’s brilliant, and there’s also lots of free things to do. But it’s not sustainable for me in the long term.

Even before the stroke, I had a plan to move out of the city “at some point”. At that time I thought I’d commute into town for work for many years before finally bowing out of city life completely. But it hasn’t turned out like that.

As you know, I left my job last April. Exactly three months after I returned to work (part-time at first) exactly three months after my stroke. I’ve never gone into the whys and wherefores, but it’s what happened, and I’ve been finishing an MSc and doing a bit of freelance work since. But the house I rent is being sold and it’s time for me to create some lifelong stability for myself.  So I want to buy a house.

In London houses are expensive. Even with the brilliant salary I had before I was only ever going to be able to buy a cupboard in a location I liked or a small flat in a place I didn’t. To buy a two or three bed house with a little garden means making a big move. And I need that security. And I need a full time job to pay for it because that’s how one gets a mortgage. While my brain works again as it did before in thinking and doing capacity, I do find a need more control over my hours and pattern of work than before the stroke. That doesn’t mean I don’t work as hard nor that I work any less hours, just that I need to be able to have a little control over them. For example, if I have two full days of meetings and/or presenting/coaching/training big groups then I need the third day to be a very quiet one. I can still work but I’m not going to be able to repeat the previous two days that day.

Now, if you’re about to say, “Well I’ve never been able to do that, so now you’re just normal like everyone else,” – please don’t. I might shoot you. I’m so sick of people saying that. I might have always been your normal but it’s never been mine. And it’s my normal that I measure everything against, not yours. Sorry if that sounds harsh but after the 100th person has said it you just stop explaining….

So. The idea is to move out of London. Rent a place while I find a job. Get a job that’s a bit more provincial (and therefore hopefully a little more controllable than the 24/7 on call job of before). Buy a little house. Live. I know, it won’t be that easy, but I’ve worked out that even if I lost a big chunk of my old salary, the combination of my London-sized deposit and drastically cheaper house prices means it’s do-able.

I move on 30 June. For the following few weeks I’m going to take a holiday at the very beautiful and mercifully empty flat of an amazing friend in a seaside town. And then make the move to the final destination.

Oh, and I was thinking, should I turn this blog into a book in the few weeks that I’m there? I don’t know. I can download all the content easily enough…

There are two significant stories that are missing from this blog. The first is about a boy, and the second is the real whys and wherefores about why I left my job and what a cock-up one, or perhaps two, individuals who called themselves HR professionals made (needless to say this wasn’t my boss nor my boss’s boss, who were both 100% fantastic). Never before has it been so satisfying to be able to answer the statement, “Well, you obviously aren’t clear on the HR law around this,” with “Actually, my degree is in HR and I worked in this very department for some time before you arrived,” been so bloody satisfying.

Like I said, there was a lot I didn’t feel I could blog about!  In some cases it was things weren’t my prerogative to share (Liz Jones anyone?).  With regard to leaving work, I didn’t want to taint the innocent, and I wanted to retain my ability to rise above it all and preserve my relationship with an organisation – and many people – that I love. But, in hindsight, the work stuff was actually pretty outrageous and, besides, I might have a way to keep it relatively anonymous… maybe.

Anyway, I think I’ve decided I’m going to write it. Mainly because I’ve been asked to, and the boy surprised me a great deal by saying he thought that I should.

Whether I do anything with it afterward, well that we shall have to wait and see!

Wish me luck with the move!


The One Year Check Up

Sorry it’s taken a few days for me to get around to this update.   You know how life gets busy…

Here’s the answers to my questions, in no particular order, and what happens next.

(1) Aspirin.  The 75mg a day of baby aspirin has to continue for two reasons.  First, the clot is still there in my vertebral artery (in the back of my neck).  The aspirin prevents it doing any more damage. Second, there is the minuscule chance that there is some kind of congenital weakness there – he made it sound more like winning the euromillions type odds than getting struck by boring old lightening, though the figure of 5% chances of reoccurrence on a tear has been bandied around the VAD group  recently.  In any case a baby aspirin would prevent this doing much harm so it would make sense to continue that even if the clot ever clears itself.

Read more


5 percent?

Lots to say after yesterday, but I’ll write it up and post it before the weekend.

In the meantime, this appeared on the Young Stroke Survivors facebook page this morning:

Read more


Moving On…

Tomorrow I’m seeing the neuro at the stroke clinic at Hospital Number 2.  You’ll remember he stole me back from Hospital Number 3, in possibly ego-related act for which I was grateful.  I haven’t seen him, or any other stroke related doctors, in six months.

I suspect that he’ll probably discharge me permanently tomorrow.  There’s a possibility he’ll want another MRI or CT I suppose, but my instinct says he’ll let me go after tomorrow.  Unless there are persistent issues, there’s often nothing new to tell after a year.  And it’s been just over a year now.  It feels like a very long time ago… and what an interesting year it has been on many fronts.

It’s got me thinking about questions I want to ask him, as well as things that have changed in the past year.  Let’s take each in turn.

Read more


World Stroke Day

I do dates. You may have noticed.

I remember it’s a week since, or a month since, or a year since. And not just about the stroke, but about EVERYTHING. I’m sure it’s very annoying for people who don’t. But I do. You probably noticed.

On October 29th it’s World Stroke Day.

Maybe you could mark this one too?

Read more


364 days ago…

This time last year I’d just gotten back from an Island where I’d been househunting.

I’d narrowed it down to a choice between a little cottage with no parking or a flat with no garden. I had decided on the house right up until the end of the day when I realised the ‘lock-up-and-leave-ability’ of the flat made it more suitable.

Tomorrow last year, which was a Monday, all this started. Not really sure how I feel about that.  Almost everything has changed since that time; job, relationship, everything.

Read more



As some of you know, since my first day blogging from the hospital I’ve had a thing about ‘hospital kit’ lists.

Read more


Resources page (look up!)

Right.  Ages ago I said to the Facebook Young Stroke Survivors Group that I’d put up a resources page collating a lot of what’s been said about what was useful.  I also asked them for things that they found useful.  They’re on the new resources page – look up, see the tab?

Read more


Stents, English and Facebook

No posts for ages and then suddenly three things to say.  This post has three points: stents may be bad, English speaking nurses are required and facebook support is priceless.

Read more

To keep in touch with new journal entries:
I don't share email addresses - spam is evil!