Dying daisy

New blog posts

Hi guys - here is a post I recently put on my blog www.middleofthefifth.blogspot.com. I also have posted some photos on my photo blog
www.justbeforedaybreak.blogpot.com, but I wont be posting them here, because I find it too much hassle. Hope everyone is well.


In the last ten days, there have been three anniversaries of events that have significantly changed my life. Yesterday, the 21st of September, was the fifteenth aniversary of my marriage. It has been very tough at times, due to circumstances beyond our control, but I can honestly say that I can't think of anyone I'd rather have by my side than John. The second anniversary is the events that took place on September 11, 2001. I lived in New York for ten years and love the place so much. It broke my heart watching it being attacked.

The third, and perhaps most life-changing moment for me, came nine days after 9/11. On the 20th of September 2001, I was diagnosed with Parkinson's Disease (PD). I was 34 years old.

I intended to write all about how awful Parkinson's is and all of the ways it has ruined my life, but, I decided that shouldn't be the focus of this. I will moan. Don't get me wrong, as anyone who knows me will attest, I complain a lot, and I am very impatient. That has not changed at all. Its probably, no definitely, gotten worse. Make no mistake about it, Parkinson's Disease really sucks and I wish I didn't have it.

I'm writing this to explain a bit what the last ten years have been for me personally. This is not one of those 'its only made me stronger' testaments. Make me weak and get rid of the disease! I'll take that deal any day. This disease has robbed me of a lot (look out! here comes the moaning part....). The worst is my independence. My mobility is screwed, my ability to come and go as I please is gone. I can't drive, almost never leave the house on my own, and, although never a really active person, I've become limited in what I can do.Collapse )

Here's the thing. Parkinson's affects everyone differently. Two people can have the same symptoms and react completely differently to the drugs or two people can have completely different symptoms having had the disease for the same amount of time. The medicines have never worked properly for me. I must have changed them six or seven times. I blame myself, mostly, for not taking a more proactive and holistic approach to my own care. I feel like i was in a daze for the first couple of years, just trying to get through every day. I also feel the Western medical community, especially the pharmaceutical companies could do a lot more to manage the symptoms, halt or even cure the disease.

Well, the whole thing sucks. if I hadn't got sick, I might have had kids (though, probably not), would reluctantly still be working (or maybe found that perfect job) and would, most likely, have moved back to the States, but now I can't afford health insurance.

But even with that there have been unexpected consequences (I won't say benefits, because there is nothing beneficial about PD) and even more surprising negatives that are not health related.
Here are some of the negative things I've experienced. People can be incredibly rude, selfish and prejudiced. Before I started using a cane, wheelchair or crutches, some people would openly stare with barely disguised revulsion because my awkward lurching walk would make me look drunk or on drugs. Little kids are the best, though. They stare at you with curiosity, not judgement. I've had small children, strangers as well as those known to me, come right up to me and ask "what is wrong with you?" or "why are you shaking?" I appreciate their candor as opposed to the bombastic Rush Limbaugh who accused Michael J Fox of "faking" his symptoms and made my blood boil.

The varying degrees of accessibility around the world is also a huge issue. There are places I would love to travel to, but know I can't because there would be major accessibility issues. You would think by now that the European Union would have homogenous laws regarding accessibility and rights for the disabled. I admit to not looking too hard for them, but having travelled to at least ten European cities in the last ten years, I can say that if there are such laws, they are not being enforced. The vast differences in accessibility in Europe is amazing. And what I found even more disturbing is how a lot of Dublin's businesses, restaurants and bars don't seem to have thought aboout it at all. But that is a subject for another post.

On to the unexpected positive things. I have always known what an incredible group of friends and family I have. What I didn't realize, or maybe pay attention to, is how loyal, strong and supportive they are. My friends are the best. They put up with a lot of crap from me, especially my moodiness and complaining. They have encouraged me to be more active socially and have made sure I was okay at all times.

My family are amazing. Not only my mother six sisters and their husbands and ten kids, but my three dozen or so cousins and their families, my in-laws and some of my sisters' in-laws who aren't related to me at all have given me so much strenghth, comfort and encouragement, I can't even begin to express my thanks.

Then there is the one who has to bear the brunt of the storm that is me - my husband. He's the one who gets the worst of me. He has to deal with me every day and its not easy. I admire his forebearance and his insane sense of humour that he uses to drag me out of the depths of despar when I'm having a particularly hard time. He is very loving, and having been ill for two-thirds of our marriage, I'm amazed he's put up with me for 15 years.

I started writing a lot of poetry and continue to take pictures, which suprised me because shaky hands + camera = out of focus pictures. But I've learned how to hold my breath, like when you dive underwater, while taking the photo and more come out blurry than before, and I miss some shots because I'm so slow, but I still get a good one here and there. Both of these things make me happy.

Coming up to this anniversary I got very down. The enormity of tme, both behind and ahead of me seemed too much for me. And then, I turned on my computer and an episode of Curb Your Enthusiasm was on called Larry vs Mchael J Fox. I had to watch. It was hilarious. Maybe others wouldn't find as funny, but for someone with PD, well let's say I was crying with laughter. It reminded me to just get on with life as Michael J Fox has, takng roles that don't try to mask his illness, setting up his foundation to find a cure for PD and spending time with his family. So, thank you Michael and Larry David for bringing me out of my funk, and to everyone else for your love and support.

I hope in 10 years we aren't commemorating the twentieth anniversary of my diagnosis, but rather the fifth or sixth year of a cure for Parkinson's Disease.
Dying daisy

Where'd I go?


Its been two years! since I last posted. I'm okay but things haven't been easy.  I've got a new blog at www.middleofthefifth.blogspot.com and will shortly have a photography one at www.justbeforedaybreak.blogspot.com.  So drop on by if you feel like it and I hope you are all well.
Dying daisy

A few things

I'm attempting to post at least a couple of times a week. 

A few links:

The Red Sox are off to a flying start this season and it has a lot to do with Jacoby Ellsbury.  Here is a unique moment in baseball when he stole home against the Yankees at Fenway:


UNICEF Ireland has a particularly effective ad, that, even in these hard times, had me opening up my wallet:


Finally, George Clooney was named one of the 100 most influential people by Time magazine.  In an Anderson Cooper special on CNN, Bono interviewed George.  See them fawn all over eachother as Bono unusually is somewhat inarticulate and George's pallor is as grey as his hair.


You've got to be kidding me

I've said it before and I'll say it again, the United States cannot hold its head up and say it is the epitome of democracy and freedom.  i don't care  if you  are Republican, Democratic, born-again or atheist, woman, man, gay, straight, pro or anti war, you cannot agree with this.  Just because the White House says its not torture doesn't make it so.  That's what dictators do.  I urge everyone to write to their representatives in Washington and the Presidential candidates and urge them to publicly condemn the United States' use of this barbaric practice.

This is a printer friendly version of an article from www.washingtontimes.com
To print this article open the file menu and choose Print.

Article published Feb 7, 2008
White House says waterboarding not torture

February 7, 2008

By Jon Ward - The White House yesterday said the interrogation technique called waterboarding, as practiced by U.S. intelligence officials, does not amount to torture, one day after an administration official said publicly for the first time that such a method has been used.

A White House spokesman said that President Bush authorized his CIA director to confirm on Tuesday the use of waterboarding — commonly described as simulating drowning by covering the mouth with a cloth and pouring water down the throat — on three suspected terrorists.

"This program and the techniques used in it were determined lawful, through a process," said White House spokesman Tony Fratto.

Mr. Fratto also said the technique is authorized currently, but could be used in the future if a rigid set of legal and procedural safeguards are followed.

Senate Democrats, however, have demanded a government investigation into the matter to determine whether laws forbidding torture were broken.

Senate Majority Whip Richard J. Durbin, Illinois Democrat, told Attorney General Michael B. Mukasey in a letter Tuesday that he would stall the nomination of U.S. District Judge Mark Filip in Chicago to be deputy attorney general until Mr. Mukasey responds to his request for a criminal investigation and other torture-related inquiries.

Mr. Fratto clarified his comments on the legality of waterboarding by saying that each specific time the technique has been used, its legality was "dependent on the circumstances."

In the future, Mr. Fratto said in each case where officials think the technique is needed, the CIA director will present "a plan" to the attorney general, who in turn would judge its legality on a case-by-case basis. If deemed legal, the attorney general and the CIA director would present their plan to the president.

Before this week, Mr. Bush and his administration had refused to discuss any interrogation techniques used by U.S. officials on suspected terrorists, but insisted the U.S. government does not use torture.

Late in 2006, Mr. Bush spoke publicly for the first time about "enhanced interrogation techniques" that he said were being used on select terrorist suspects.

Mr. Bush has said the techniques are "tough" but lawful. He did not elaborate, saying he does not want terrorists to "adjust" or train to resist interrogation.

But after extensive debate inside the White House, Mr. Bush gave CIA Director Michael V. Hayden approval to talk about waterboarding, based on "the cumulative impact of public discussion of that technique," which included "misinformation," Mr. Fratto said.

Mr. Hayden, in testimony before the Senate intelligence panel on Tuesday, said three men were subjected to waterboarding between 2002 and 2003: Khalid Shaikh Mohammed, the mastermind of the September 11 terrorist attacks; Abu Zubaydah, an early member of al Qaeda and close associate of Osama bin Laden, and Abd al-Rahim al-Nashiri, who helped plan the USS Cole bombing and headed al Qaeda operations in the Persian Gulf before his capture in 2002.

Mr. Fratto, when asked why the practice is not authorized currently, said that the intelligence community's "knowledge of how to interrogate in effective ways has evolved."

Mr. Hayden, in his testimony, said that waterboarding was used in 2002 and 2003 in part because U.S. officials were fearful of another terrorist attack after September 11.

"There was the belief that additional catastrophic attacks against the homeland were inevitable. And we had limited knowledge about al Qaeda and its workings," Mr. Hayden said. "Those two realities have changed."

Jerry Seper contributed to this article.

Spike smoking


The BBC just showed the first episode of Season 2 - Kiss, Kiss, Bang, Bang in its entirety (at 7pm!) and then had a 10 minuted programme on the making of it with interviews with James and John Barrowman and it was really interesting.  I can't seem to get the video off of the website, but if you want a look check out www.bbc.co.uk. 

Cleaning up

I'm going to clean up my LJ a bit and in doing so, I'm going to remove people on my friends list that I either a) have nothing in common with anymore or b) never comment on my posts and I don't  comment on theirs.  My interests and reasons for being on LJ have changed a lot over the past few years.  I don't mean to offend anyone and if I take you off and you'd like to be put back on, just email me.  Thanks.

Good wishes

I'm off to America later this morning, so I wanted to wish everyone a happy holiday (whichever one you celebrate) and fabulous New Year!!