Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
I realise I may have been a tad absent...four months can be described as a 'tad', right? There are many reasons for this, but mainly just getting on with life.
A few things have happened in the last month that has made me think it may be time to share again. The first was a conversation with a friend. Well, I say a conversation. It was more of a whine on my part, a whine about how people were making all sorts of assumptions about what our lives were like now and some irritatingly flippant comments about how cushy it is. The friend pointed out that as I only ever post the good stuff on Facebook and have stopped writing the blog, its impossible for anyone to see the balance and understand the reality.
The second is possibly the most shocking demonstration of malice and cruelty I have ever witnessed. From very early on in our brain injury journey I connected with a fabulous young man on Twitter. He was on his own journey to recovery and his willingness to share and endless positivity kept me sane in some very dark times. Over the last few days there have been increasingly worrying updates from his family, culminating in the horrific news that he passed away the night before last. I was heartbroken. This meant so many different things in the context of our own journey that I felt so much more than grief for my friend. I felt a suffocating mix of shock, grief, an aching empathy for his family and gut wrenching fear for my Jake. How could someone who had been so strong and done so well suddenly get a new bleed and die? What did this mean for Jake?
The answer? He didn't. His twitter account was hacked and someone with no heart or conscience, but a great deal of time on their hands who had painstakingly gone through his old tweets to construct a completely believable, fact laden fabrication. I am at a complete loss as to why someone would do this? What on earth could be their objective? What sick need can this have fed? Can you imagine his family's confusion and then horror when they finally regained control of the account today and read the hundreds of messages of condolence and support? Yesterday I cried, today I REALLY want to hurt someone!
What this has given me (aside from a strong homicidal urge) is a bit of a kick up the arse generally. My amazing Twitter friend is still alive and well (hurrah) and there is SO much good in our life. If I'm going to help others to understand our reality then I really need to stop whining and meet them in the middle; I need to share more of the tough stuff and I need to appreciate the good stuff more.
So, I am going to try to motivate myself to share one of the tough bits and at least one of the good bits each week. Here goes!
Today has been a bit tough because I have felt emotionally battered (and hungover) and really needed Jake to be the sympathetic, supportive grown up. This is not a natural state for someone with frontal lobe damage and he just wanted to remind me that his back hurts and tell me that he was hungry! Probably doesn't sound like much, but it can be totally soul destroying and wholly dissatisfying; it's really hard to indulge in self-pity when you know the other person has no control over their lack of empathy and is actually doing an amazing job in the context of their injury...boo hoo for me!
Today is exciting because four weeks today we will renew our vows in Central Park, New York, where we married 5 years ago. Jake is well enough to make and fully engage with the trip and we have the resources and the support of family and friends to make it truly memorable. Which is good because Jake can't remember the first time and because I get to buy another dress!
Next week will be good because my yoga class starts up again after the Summer break. You've gotta love a bit of down face dog!