Building up speed.

It has been ten days since I suggested I'd compile the 75th Anniversary book. I have just received my 17th offer of a contribution. With the odd stray (like myself) that I haven't added in yet, there is probably about twenty stories so far. It looks like this is actually going to happen, all I may have to do is point the ship in the right direction. I was asked today if I was going to go to the PKU Association's AGM. It's on at 10 am at Westmead Hospital. I would be guaranteed to be late and have no idea where to go once I get there, the place isn't referred to as 'Big W' for nothing. It also means taking another day off from the Museum and another day without access to emails and given I had 18 to wade through this morning, it's getting kind of necessary. However, I'm feeling that I should go. There are likely to be more pku adults there than I can contact via pku tree and I may be able to say something about the project in general business - assuming of course I have a clue what I'm actually doing by then. Crap.

The problem with ideas

I like to think that I have good ideas. Sometimes they're more trouble than they're worth. I mentioned on the pku tree site that I thought it would be a good idea to record people's stories, particularly the stories of us 'oldies', to record for posterity's sake the way it was when the effective management of pku was still in its infancy. This idea met with great enthusiasm by some people and ended with me agreeing to write/compile a book to commemorate the 75th anniversary of the discovery of pku. Four days ago this happened and today I find people wanting guidelines of what to write, urging that they need time to get their thoughts together. Guess what guys, I need time to get my thoughts together too. Something is always a good idea when it seems that someone else is going to do most of the work. I still can't get my head around the idea that I will actually be doing this. I find the stress of living so great sometimes. Hell, I can't even pay my damn bills, now I'm supposed to spend the next year doing this. At least if I do it there will be no one else to blame if it's crap. If someone else did a crap job on something that could end up being such a historically significant document, I'd be a bit pissed off. This is all on the same day I applied to be on a reality television programme. My agenda was to raise awareness about pku and special diets catering in general. I'm sick of being an after thought or overlooked all together, just the same, I hope to God I don't hear from them, after all, I have a book to write.

Fear and Loathing

"What's my motivation?" the actor screams. I don't know what it is now, but I think I now what it used to be - fear and loathing. Sounds dramatic doesn't it? I used to be a member of a religious order - no seriously. For four years. In many respects the longest four years of my life, but I don't regret it, I guess it was something I had to do. For a nember of reasons, it's a time of my life that I don't talk about much. It was during this time that I started having panic attacks. I hadn't been a Novice for very long, so I just assuming that I was having doubts about the whole vocation thing. Whatever it was I thought that I was losing whatever was left of my mind. Being a Novice in a Religious Order meant I told nobody anything. I was expected to be reasonably healthy in both body and mind. I felt that I was loosing both. The Community had some weird attitudes towards food, everything was designed to make you harmogenous, invisible, self-affacing. You didn't like standing out in anyway, even when you were received as a Novice into the community. It gave you the appearance of being modest and at the very least, unselfish. It was never about you, it was always about someone else. Some of the food stuff went like this; you cooked simple yet healthy meals. Most times of the year two courses were served, a main and a dessert. You ate everything that was provided regardless of personal preference. You hate it, tough luck Sister. The exception to this was if the food was 'medically harmful' to you. I didn't figure that I fitted into this category since the food itself didn't make me 'sick'. I was totally off the diet and hadn't taken a supplement since I 'graduated' from the Children's hospital. When I was on holidays in Sydney I got myself back to the hopital, saying that I thought that I was having panic attacks. To my suprise, no one questioned my self-diagnosis. My blood phenylalanine level came back at over 1400. I had discovered that the saying 'no brain, no pain' doesn't really follow. All of a sudden I was standing out and not for a good reason, but it did exempt me from the over cooked Friday night omlettes! Others were kind of jealous, I was kind of relieved. I was terrified of having to go onto low protein food substitutes if I couldn't get my levels down on my own. These products were always expensive and I struggled to see that the Community would be too happy to fork out big bucks on a packet of dried pasta and baking mix! Getting back onto the supplement was the hardest, that coupled with the constant hunger. Hunger like a gnawing pit in your stomach. I ate anything and everything that didn't have an animal somewhere in its DNA chain. I felt the need to apologize for this. At the time we had a Novice from another order staying with us who was a compulsive eater. Strict limits were put on who could eat what and when. I had free reign on the kitchen, others had to wait for designated meal times. I felt I needed to apologize for that too. For over two months my blood count stayed the same. I started to fear that the low-pro foods were around the corner, but then there was a shift. In the end I got it down to an acceptable level, almost half what it had been. I should be proud of this milestone. I have had reason to examine this time in my life and I was wondering what my motivation was. One word kept coming to mind - fear. When I realized that my mind was being affected, the fear gripped me like a vice, for even if I kept it together long enough to be Life Professed I may still ended up dependant on these women and I'd seen the way some of them had treated older sisters. One sister in particular gave us the creeps and the thought of being in any way dependant on such and emotionally stunted, objectionable person was truly horrific. So I sorted out my diet and got onto the supplement. My distaste for this person was my motivation. My distaste for her was greater than my distaste for the supplement! That's saying something. So there you have it! Fear and Loathing. Now if I could only find something else to hate as much, then I'd be set!