Anniversaries

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.

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.