‘We Need A Cure!’ – Why I Don’t Ever Say That On Here (And Also Why I Understand Why Others Do).

October 11, 2017

I love September as in my mind it’s the start of Autumn (my favourite season).  I run to my own timetable and declare the 1st of September to be the first day of Autumn (even though it isn’t) because I love it so much and I don’t really care that I am factually incorrect.  I get all happy and excited and start taking waaaaay too many photos of red and brown leaves, conkers on the ground and squirrels running around with horse chestnuts in their mouths.  I’m probably quite irritating with it.
What I didn’t realise this year is that September had been selected as ‘Hydrocephalus Awareness Month’ in America by the Hydrocephalus Association (HA), a worthy organisation which focuses on finding a cure for hydrocephalus as well as providing information and community resources for those affected by the condition in the States.  Whilst I am all for raising awareness for medical conditions (writing this blog does that a little I suppose), I do sometimes struggle with the many ‘we need a cure now!’ messages regarding hydrocephalus that find their way onto my social media pages (I get tagged a lot!).  I never post them.  The first thing I do is untag myself so they don’t show up on my account.   The reason for this is because whilst I do think that yes, a cure for hydrocephalus would be a wonderful thing which would alleviate a lot of suffering for people all over the world,  I have personally found that doing what I can to improve my life right now, with hydrocephalus, makes me feel far more hopeful than holding out for someone else to come up with an outright cure and solve all my health problems for me.  A total cure may well not happen in my lifetime; after all, hydrocephalus has been affecting people on planet Earth since human brains developed.  Hydrocephalus symptoms were regularly described by Hippocrates (born 460 BC; that dude is old) – and so far a cure has still not been found, despite the awesomely jaw-dropping developments in medicine which have kept us all alive thus far.
The actual causes of hydrocephalus can be in themselves a bit mystifying.  I suddenly got it out of the blue when I was 26 after a gym session…well, maybe I didn’t actually develop it right that second but that’s the very moment the headache which I still have now made itself known.  The docs never discovered a concrete reason for it.  And I have a very complex case which has proved notoriously difficult to effectively treat over the years as even the teeniest adjustment in pressure causes my brain to throw a complete, over-the-top, diva-esque hissy fit of a tantrum.  My neurosurgeon, who is the top in his field, told me he’s not even sure which category I should fall under!  So for a total cure to be found which will suit everyone…well good luck to those who are trying.  And I honestly mean that ever so sincerely.
Shunts, to me, are downright amazing.  Yes, they fail.  Yes, they get infected.  Yes, we have to undergo a brain surgery to put them in, take them out and fix them.  But if it weren’t for that unassuming device in my brain right now, I’d be dead.  Simple as that.  And I’m really glad I’m not dead because then I’d be missing out on Autumn.
To me, the most positive thing I can do whilst living with a condition which hurts every day and for which there is no cure is to live my life in the best way possible; to try and socialise, to try and work, to try and do all the little, strange things which make me happy and to deal with the bad days (usually by keeping myself to myself and just getting through them knowing that they, too, will pass).  The reason I’m writing about all this today is that some of the messages I’ve seen on social media highlighting the ‘need for a cure’ and the call for ‘no more brain surgeries’ (which has been highlighted by ‘#nomorebs’ on social media) have worried me a bit.  Whilst I understand the sentiment – and frustrations! –  behind these messages, I also feel they are not all that helpful to people like myself, who have and will face more brain surgeries in order to survive.   No alternatives to brain surgery in terms of treatment are offered in these social media posts demanding an end to brain surgery…what are the choices for us if not that?  There are actually ways of treating hydrocephalus symptoms without a shunt in some cases…medication to reduce the amount of CSF production if the individual’s brain is able to drain a small amount on its own…but in cases like mine, where I’m 100% shunt-dependant, there is no alternative.  So to present brain surgery as nothing but negative to me is not that helpful.  Those of us who’ve been through brain surgery or surgeries know…it’s not good.  It sucks.  We’d all love to never have another one, ever.  But if you’re reading this and you’ve had a brain surgery, you’ve survived it, got through it and are well enough to be sat here reading.  So hey, we’re alive from that brain surgery!  We rock!  Virtual high-fives all round!
I would say that although I get the hope behind the particular campaign I’ve mentioned, although I understand the desperation felt by families of children and individuals facing their umpteenth surgery, for me focusing on the here-and-now is the best way to cope.  One hour at a time, if you like. Maybe one day there will be a cure.  Maybe one day there will be ‘no more brain surgery!’.  But right now, even though all those healthcare professionals and researchers are working as I type to achieve just that, we don’t have a cure and we will have to face more brain surgery (most likely).  So I say focus on the positives.  Don’t dwell on what you’ve missed out on due to being ill.  Think about what you can enjoy, NOW, since you recovered from that surgery.  Don’t regret the negative impact that surgery and illness may have had on your education and career.  Think about firstly what a freaking achievement you’ve made getting through what most people would never want to face.  Think about what you CAN do in terms of work and study…and adapt accordingly.  You may have to do things a little differently to the way you’d imagined but I’ll bet there is a whole load you can do with time and consideration.  If you’re struggling with your symptoms, talk, talk, talk to your surgeon and team about options.  If you’re hitting brick walls with that, go to your GP for a referral.  If you gather the support of friends and family and keep focused on what YOU can do, even though I know it’s hard when you’re feeling generally crap, you can make changes for your own life, no matter how small and that can feel so empowering.  And then you can leave the hunt for a cure and no more brain surgery to the pros whilst you marvel at the positive changes you’ve made, for you, right now.
I do hope we will one day have a cure.  And I totally get and respect all those who are crying out for one.  But I also say it’s okay to look at your situation and think ‘okay, this isn’t how I planned things and it feels really bad right now.  What can I do?’.  And if the #nomorebs social media hashtag comes true, great…just don’t forget to thank #brainsurgery for all it’s done for you so far because without it you most likely wouldn’t be revelling in the beautiful colours of Autumn and the cutesy little squirrels and the smells of bonfire smoke and…what do you mean, ‘that’s just you’?!

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5 Comments

  • Reply Nick Minnion October 17, 2017 at 2:24 pm

    Great article Jordan – I have shared it on my FB page (first time I have felt moved to do such a thing 🙂

  • Reply Scott Nordyke November 15, 2017 at 10:34 pm

    Thanks for your blog. I was born with Hydrocephalus 53 years ago. I appreciate the encouraging blog. Most would consider my very lucky (and I am). But some days are very hard and your blog has helped my mood.

  • Reply boopster277 June 8, 2018 at 4:43 pm

    You said you have a complex case of Hydrocephalus. What kind do you have?

    • Reply jordantheheadcase June 8, 2018 at 8:57 pm

      Hi Boopster,
      Well they don’t really know! My surgeon told me they don’t know what category to put me into as my brain doesn’t behave any way that it should with hydrocephalus, the cause is unknown and I don’t have although I check a couple of boxes, I certainly don’t check all of them. I spend a looooong time in hospital when having treatment as my brain is so pressure-sensitive that they have to do any procedures/pressure changes in tiny stages rather than just doing them in one go as they do with their other patients. So I’m not sure exactly what I have. It’s not classic hydrocephalus and it’s not classic IIH. But it has some of the characteristics of hydrocephalus. I think they gave up trying to work out exactly what it was a long time ago and now just focus on treating it! Fine by me! 🙂 Jordan x

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