I wasn’t sure about writing this blog post, being reluctant to spill my guts to people who might just want to know about nice places to visit n’all, but I felt it needed writing, even if only to encourage others to talk.
In a nutshell, we travel to stay sane. Rich has NF2 (Neurofibromatosis Type 2) – a very rare genetic condition that causes tumours to grown on nerve endings, and indeed the little buggers do grow everywhere, and sometimes become very big buggers. His life has revolved around major surgery, hospital visits, going deaf, paralysis of different parts of his body, and uncertainty, but in spite of it all, he’s the most Zen person I know. For the last 18 months or so, he’s been having chemo for an index NF2 tumour in his brain. We found out a few days ago that this has grown a little, but at the moment we’re optimistic that upping the dose can bring it back in check. If it doesn’t, then the bridge we have to cross involves brain surgery, and possible further paralysis. Rich has trouble swallowing thanks to a previous surgery that damaged his throat, and has a plastic valve in place, but it sometimes means that I have to perform the Heimlich manouvre on him. Dinners are never dull in our house! We’ve been advised that further surgery might mean that Rich loses the ability to eat solid food again, and to speak. Whilst we joke about a voice box voiced by none other than Steven Seagal, the reality is that this outcome would make life even more interesting.
Interesting, but never impossible. If it comes to it, I’d carry feeding tubes and bags all over the world with us and we’d go places where I could arrange help from local hospitals if need be. We refuse to let ill health define us, or limit what we can do. I have a few medical quirks of my own – POTS and EDS, that sometimes mean that Rich has to look after me, but again once I’m feeling ok-ish, we make up for the down times. We travel because it helps us forget the not so nice things, to delight in the wonders of this world, and to meet others who are in a far more unfortunate situation than ours. We both care a great deal about others, and make an effort to help where we can, and this in return helps us too. We’ve experienced extreme acts of kindness all over the world, often in the most unexpected of places, and meeting Rich in some ways seems to help other people too. They realise that if he can do what he does in spite of the obstacles, that they can too. He inspires others as much as he inspires me.
So that’s why we go away a lot. We want to see the world whilst we can. We travel reasonably cheaply – luxury hotels and resorts are not our thing, and we take things slowly. We’ll never say that we’re ‘doing’ a country in a week. We’d rather go back again and again and really get to see what’s beneath the surface. Yes sometimes it’s hard, sometimes we both feel very rough indeed, but then we’d be feeling rough at home, so it’s never seemed reason enough to make us not go. In holiday mode, pain and discomfort seems that much more tolerable, and we’ve never not had help when we needed it. Usually, we never even need to ask – most humans tend to prefer to be kind than not, and this is possibly the most important lesson traveling has taught us. Yes it’s not all sugar and spice, and we bicker when we’re tired and lost for instance, but when we arrive, and experience what we do, it makes it all worthwhile. Life really is so short that we intend on making the most of it, in as many places and ways as possible!