Shit!

Jack's avatar on the forum was
 Leonard Cohen (one of his two fave
artists, the other being 'The Gorilaz')
I will never see Leonard the same again.

I am super bummed about the events of the last few days where yet another great person was taken from this planet by this ugly disease. "Jack sadly died on Friday 23rd September 2011 at 11.05pm UK time"  - we were informed by his loving family. He was diagnosed in 1988 and has gone through many years of intense drug therapy and ups and downs due to both the disease and the treatment.

Jack was an inspiration to everyone who went on the Wegener's Forum for advice, guidance and camaraderie amongst those in the battlefields of Wegener's Granulomatosis. His awesome sense of humour and compassionate ways made the worst of days better and most uncertain of situations bearable. He was quick, witty, economical with words (something I very much envy) and full of wisdom and unfortunately lots of experience with dealing with Wegener's and the medical profession.

This is something he wrote to me not that long ago. "Hope you continue to improve, you have certainly come a long way in the past year and although you will never be the same person, you might even be a better one!"

Love you Jack. Rest in Peace wherever you are and know that you will be alive in our hearts as long as we're here, and after that.... we'll see you on the other side and party without stupid Wegener attached.

Time's fun when you're having flies

I know I've been the absent Weggie, but there's a reason. The reason? Things have been looking up. I'm always so scared to say that so that I don't jinx it (as I'm so well aware now that things can turn on a dime) so instead of telling the world I'm feeling stronger I've just been trying to use that time to try and get closer to the old Marta. I miss her, and want her back in my life. On that note, I got a glimpse of her (not on the outside, but more on the inside) on our first REAL holiday as a family since this all started. We went off to Hawaii for a couple of weeks before I head back to work and since the Wegener's gig started and it's the first time I felt like a normal person in the last year and a half or more. It was great. Amazing. Not sure what part of the experience triggered that feeling, or maybe it was a combination of things, but it was amazing. I had a hard time coming home not because home is bad (home is paradise and I love where I live) but because I really didn't want to loose that feeling of 'normal'. I still get a little weepy at the loss of that liberating state of mind - liberated from Wegener's.

But onto new things now. Hana just started kindergarten and it's only her second day today but she seems to be liking it. There is a whole change of life around starting school which is new and slightly cumbersome but will become second hand in no time. One thing that is slightly perplexing to me is that I think with this disease came some very important lessons in life - whether the disease was brought to us to teach us those lessons or they came as an accompaniment to the disease is irrelevant but they were very focal and powerful when we were in the thick of it - and as things get closer to normal the lessons learned seem to be sliding off the plate like plastic plate full of raw chicken breast quickly getting taken out to the BBQ. This makes me sad. It's sad that we have to get a bitch slap to learn what's important in life and what the priorities are but once the sting from the slap goes away we start to forget, it also scares me that the universe will give another little bitch slap to remind us of the lessons and I'm really not up for another one at this point.