The problem with this frankly awful experience is that, despite continuing progress and the small, uplifting triumphs that thankfully still come, it is too huge and unpredictable a challenge to stay on top of. Everyday I get up, dust myself off and start again and everyday I feel so utterly helpless and inadequate; my beautiful Jake is having such a tough time at the moment and I would give anything to take it all away and would swap places with him in a heartbeat. I know it's pointless to feel this way, but I suppose what I am saying is ITS NOT BLOODY FAIR!
Imagine being a highly intelligent, successful and well respected man, finally settled in your personal life, starting to achieve great things in a new career that you switched to in your 30's, having already excelled in a previous career and looking forward to hopefully soon becoming a Dad. You are known for your quick wit and impressive vocabulary, people often turn to you for help, you can turn your hand to pretty much anything and you enjoy setting yourself and achieving stretching challenges like cycling from Lands End to John O' Groats unsupported...twice.
Now imagine slowly becoming aware that something is very, very wrong. You no longer have control of your mind, emotions or body. You can't find the words to express yourself anymore, and you can't understand what is being said to you. You have permanent double vision, you topple over if you try to stand or walk too quickly and you have gone from being strong and able, to needing help with pretty much everything. You get frightened, angry, upset and confused without really knowing why. You get stuck doing the simplest things and have to be guided and supported to achieve the most basic and personal tasks. You have to surrender your fate to others and feel so completely out of control it is crushing. Then someone tells you that this is because you have been in an accident which has left you with a severe brain injury, it happened nearly a year ago and no one can say how much you will recover, only that it will be a life long journey.
Everything that defined you has either changed or gone. The rug you were standing on has been well and truly pulled out.
I don't know about you, but I'm not sure I would survive this experience. Not my Jake though. He is undoubtedly struggling; he's not a machine, but his ability to pick himself up and keep on trying in the face of such a huge mountain to climb is both inspiring and heartbreaking. He is so hard on himself if he gets it wrong or can't do something (which happens a lot) that my role has become one of cheerleader, coach, counsellor and, sometimes, just listener.
I try to be strong for him, but I get so angry and overwhelmed by how bloody unfair all this is and I certainly don't think I would be able to find the strength to use humour to manage my anxiety and be self effacing when I repeatedly make the same mistake. My Jake does though.
He is terrified but determined, frustrated but focused, devastated but resolute.
If all of the pride, love and respect I feel for my husband escaped from within me it would envelop the world and Felix Baumgartner would have been able to see it from his balloon!
I love you Jake.