Tuesday 6/3/2007

Just back from the hospital where I had an appointment with the neurologist. I had sworn never to go there again, after my disastrous last time where I was made to feel like an incompetent piece of crap. He talked at me, and into his microphone, where I was the "highly spastic" visitor. And I took a days leave, and made my way up to dublin for this. If you are a doctor, of course you are very intelligent, but there are many forms of intelligence, so as far as human interactive skills go, you can leave a lot to be desired!

I was going to hold firm, and not be swayed. My brother wanted to go anyway,so he could be the designated rep from our household. In work yesterday, I got an unexpected call from the FA society founder, urging me to go as they are funding research in tallaght, and if I went I could contribute towards the research efforts. This was the only argument which could have had any hope of changing my mind. As much as I hate friedreich's ataxia, and all that goes with it, I hate the thought of no treatment being found, and it infecting another generation even more!

The FA society arranged transport, so I braced myself for another pointless talking shop, although I did hope that it was'nt going to be a complete waste of time. My affirmations for the day really worked, the day was lovely and clear, with more than a hint of spring in the air. We had a lovely indian doctor,who listened and did his best to honestly answer all our questions. He even seemed to understand why I am so jaded about everything, and yet eager to help fight this disease. As much as I hated the thought of having to use a holiday day off work for a potential waste of time, I hate the thought of FA going unchecked, and potentially infecting another generation even more!

I let him know that as far as I am concerned, that the ship has sailed for me, and that I was definately not here out of any desparate self hope. Indeed, it is depressing, to look around the chaos of the hospital, witnessing people clinging on so fiercely to this life. Although maybe I'm being too negative on this score. Anyone can die, the hard part is living, and living well has to be the goal.