{"id":1954,"date":"2017-10-11T11:49:29","date_gmt":"2017-10-11T10:49:29","guid":{"rendered":"https:\/\/jordantheheadcase.wordpress.com\/?p=1954"},"modified":"2024-06-01T10:48:31","modified_gmt":"2024-06-01T10:48:31","slug":"we-need-a-cure-why-i-dont-ever-say-that-on-here-and-also-why-i-understand-why-others-do","status":"publish","type":"post","link":"https:\/\/jordantheheadcase.com\/index.php\/2017\/10\/11\/we-need-a-cure-why-i-dont-ever-say-that-on-here-and-also-why-i-understand-why-others-do\/","title":{"rendered":"‘We Need A Cure!’ – Why I Don’t Ever Say That On Here (And Also Why I Understand Why Others Do)."},"content":{"rendered":"

I love September as in my mind it’s the start of Autumn (my favourite season). \u00a0I 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. \u00a0I 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. \u00a0I’m probably quite irritating with it.
\nWhat I didn’t realise this year is that September had been selected as ‘Hydrocephalus Awareness Month’ in America by the Hydrocephalus Association<\/a> (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. \u00a0Whilst 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!). \u00a0I never post them. \u00a0The first thing I do is untag myself so they don’t show up on my account. \u00a0 \"\"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, \u00a0I have personally found that doing what I can to improve my life right now,\u00a0with<\/em> 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. \u00a0A total cure may well not happen in my lifetime; after all, hydrocephalus has been affecting people on planet Earth since human brains developed. \u00a0Hydrocephalus 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.
\nThe actual causes of hydrocephalus can be in themselves a bit mystifying. \u00a0I 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. \u00a0The docs never discovered a concrete reason for it. \u00a0And 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.\u00a0 My neurosurgeon, who is the top in his field, told me he’s not even sure which category I should fall under!\u00a0 So for a total cure to be found which will suit everyone…well good luck to those who are trying.\u00a0 And I honestly mean that ever so sincerely.
\nShunts, to me, are downright amazing. \u00a0Yes, they fail. \u00a0Yes, they get infected. \u00a0Yes, we have to undergo a brain surgery to put them in, take them out and fix them. \u00a0But if it weren’t for that unassuming device in my brain right now, I’d be dead. \u00a0Simple as that. \u00a0And I’m really glad I’m not dead because then I’d be missing out on Autumn.
\nTo 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). \u00a0The 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.\u00a0 Whilst I understand the sentiment – and frustrations! –\u00a0 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.\u00a0 \u00a0No 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?\u00a0 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.\u00a0 So to present brain surgery as nothing but negative to me is not that helpful.\u00a0 Those of us who’ve been through brain surgery or surgeries know…it’s not good.\u00a0 It sucks.\u00a0 We’d all love to never have another one, ever.\u00a0 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.\u00a0 So hey, we’re alive from that brain surgery!\u00a0 We rock!\u00a0 Virtual high-fives all round!
\nI 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.\u00a0 One hour at a time, if you like. Maybe one day there will be a cure.\u00a0 Maybe one day there will be ‘no more brain surgery!’.\u00a0 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).\u00a0 So I say focus on the positives.\u00a0 Don’t dwell on what you’ve missed out on due to being ill.\u00a0 Think about what you can enjoy, NOW, since you recovered from that surgery.\u00a0 Don’t regret the negative impact that surgery and illness may have had on your education and career.\u00a0 Think about firstly what a freaking achievement you’ve made getting through what most people would never want to face.\u00a0 Think about what you CAN do in terms of work and study…and adapt accordingly.\u00a0 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.\u00a0 If you’re struggling with your symptoms, talk, talk, talk to your surgeon and team about options.\u00a0 If you’re hitting brick walls with that, go to your GP for a referral.\u00a0 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.\u00a0 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.
\nI do hope we will one day have a cure.\u00a0 And I totally get and respect all those who are crying out for one.\u00a0 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.\u00a0 What can I do?’.\u00a0 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’?!<\/p>\n","protected":false},"excerpt":{"rendered":"

I love September as in my mind it’s the start of Autumn (my favourite season). \u00a0I 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. \u00a0I […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[4],"tags":[19,20,22,56,63,81,82,103],"class_list":["post-1954","post","type-post","status-publish","format-standard","hentry","category-living-with-hydrocephalus-the-truth-not-the-textbook","tag-brain","tag-brain-surgeon","tag-brain-surgery","tag-health","tag-hydrocephalus","tag-neurosurgeon","tag-neurosurgery","tag-shunt"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1954","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/comments?post=1954"}],"version-history":[{"count":1,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1954\/revisions"}],"predecessor-version":[{"id":2284,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1954\/revisions\/2284"}],"wp:attachment":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media?parent=1954"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/categories?post=1954"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/tags?post=1954"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}