Tuesday, 9 May 2017

A tale of two countries...

I'm not sure where this post starts; today is the 16th anniversary of my father's death, and that event always leaves me with a deep sense of loss. But I think it stretches back 25 years to the day I got my first internet account.

In 1992, there was no world wide web, no pictures, only words. And I was fortunate enough to stumble upon a group filled with witty, challenging, loving words created by a group of witty, challenging, loving people from around the world, mostly, of course, in the United States. Over time, I got to meet many of them. We went whitewater rafting, held quilting bees, attended chocolate fairs, and weddings, and consumed copious quantities of amazing food and drink.

I think it's fair to say that Nancy was the most beloved member of our group. She was a funny, kind, deeply loving woman with a great love of animals - no more so than her pet lizard, Herman. Nancy was a docent at the Memphis Zoo, the doting mother of Jenna and Derek, and an employee of the University of Memphis, where she covered the door to her office with Dilbert cartoons.

In May 1998, Nancy was diagnosed with a rare cancer of the bile ducts. The tumor was large and would have been difficult to remove surgically, but, by some miracle, Nancy's HMO agreed to let her have treatment at the Vanderbilt University Hospital cancer centre. The doctors were going to perform a chemoembolization - where the artery feeding the tumor would be blocked with a plug containing chemotherapy drugs to cut off its blood supply and shrink it to a point where it could be removed.

This is a fairly routine procedure today, but almost 20 years ago it was considered experimental, and Vanderbilt decided to fight with Nancy's HMO for her to have the treatment. They had it all arranged and approved, and she checked into the hospital in Nashville for the procedure.

Only to have someone at the HMO change their minds and pull the plug on the treatment while she was being prepped for surgery.

In the 1990s, universities in the US were one of those employers with "great" health plans for their employees. But, as remains the case today, insurers decide what treatment you get, NOT the medical professionals treating you.

Nancy died on August 12, 1999, she was 56, the same age I am now. Her loss was keenly felt by our group as a whole, and I think it's fair to say that we miss her still.

Despite having good coverage under her work health plan, Nancy's chemotherapy still cost thousands of dollars, and after she died, Jenna and Derek were forced to sell the family home to settle the debts that remained.

Fast-forward a year to Papa's diagnosis with throat cancer.

My father lived in Ste-Thérèse, on the north shore of the St. Lawrence across from Laval and Montréal. His cancer was discovered when he had a stroke caused by a tumor pressing on an artery in his neck. At his choice, he delayed chemotherapy to undergo physio to treat the side effects of the stroke.

Then he had another, more serious, stroke, paralyzing him on one side of his body. And started aggressive treatment for the cancer.

Here's the big difference in how treatment progressed for my Papa and Nancy:  Papa had the same oncologist as one of his hockey heroes - Jean Beliveau. Somehow, I can't see Michael Jordan would have been denied treatment as Nancy was - simply because he could pay for it without worrying about those pesky insurance company flunkies.

When my father died, my online family asked if my sister and I required any financial assistance to meet his expenses. Papa had prepaid his funeral and all his treatment was covered by the Ministère de la Santé and the Régie des Rentes, as he was placed on partial pension due to his illness. We got money back from the hospice because the Régie paid a month in advance for his stay.

No assistance needed.

*****

Nearly 20 years after these events, my friends and family in the United States continue to find their health care choices left to the mercy of insurance companies and conservative politicians who are little better than faith healers and snake oil salesmen.

After the vote in the US Congress last week, I publicly expressed my wish that I could adopt my American friends, and thanked my grandparents for emigrating to Canada.

Our health care system is far from perfect, and still underfunded, but I am grateful that I can walk into a hospital and walk out without handing over a credit card or worrying about pre-existing conditions negating the insurance I do have. Yes, my tax rate is higher, but it's a small price to pay for peace of mind.

And that's what makes The True North genuinely strong!

*****
My previous post about my Papa:  http://labellatestarossa.blogspot.ca/2013/08/it-must-have-been.html


Wednesday, 12 April 2017

I See You...

In the 1970 song "Everything is Beautiful", songwriter Ray Stevens echoes the words of 17th century clergyman Matthew Henry: There is none so blind as he who will not see.

I've been thinking about this a lot lately as a result of a Twitter conversation with my friends Marci and Amanda coupled with a book I've been reading.

I live in London, Canada, a city currently in a state of upheaval due to proposed changes to our transit system. We are the largest city of our size without a rapid transit system of either light rail or buses running on a separated grade. And we are bisected by two rail lines. While the southern line has many over and under-passes (as there are 3 rails), the northern line, run by Canadian Pacific, has one rail that runs at grade.

In the 11 years that I have lived here, I cannot tell you how many times I have sat in a bus on Richmond Street, stopped in traffic due to a train blocking the road. To make matters worse, two of the city's main hospitals are on the north side of those tracks and ambulances sit in traffic, too. The proposed transit plans would see a tunnel built under the tracks that could also be used by emergency vehicles.

Amanda has been economizing and using public transit instead of driving everywhere. She is a naturally gregarious person and chats with fellow riders and the bus drivers, and one of the topics of conversation is the transit plan. To her astonishment, a fair number of transit riders and even DRIVERS say they are unfamiliar with the plans.

And that fact astonishes ME, because there's been no shortage of public participation meetings about both transit and the municipal plan that has transit at its centre, as well as television and newspaper coverage. But, more than that, there were information posters ON THE BUSES themselves.

The information posters were conveniently placed in dedicated frames attached to the door of the driver cubby, where they can store their coats in winter. It's one of the first things you see when you step on the bus.

But you have to actually LOOK at it in order to SEE it!

Which brings me to the conversation with Marci and Amanda. Marci asked how we make people LOOK at something in order to SEE the information?

And, of course, the answer is - we can't.

That made think of all the things we look at, but don't really see.

This introspection was brought about by Amy Krouse Rosenthal, the acclaimed children's author, who died last month at the age of 51. A week before she died, the New York Times published an essay she wrote about her marriage and her husband. Having never heard of her before reading the deeply moving essay, I looked her up and discovered that she was not "just" a children's author, she had written some witty and insightful adult books, and was generally a "bon-vivant" - she lived very, VERY well!

I went to Kobo and found that her "Encyclopedia of an Ordinary Life" was on sale and downloaded it.

It is, indeed an encyclopedia of Ms Rosenthal's life, but I was struck by how much she saw in those ordinary things that we do each day. I have an odd gift for remembering, but Ms Rosenthal absorbed life and found beauty daily in the world. She perpetrated random of acts of kindness, and hosted a flash mob at the Millennium Park in Chicago in 2008.

Last Saturday was an almost perfect spring day despite the snow the day before. So I hopped on a bus to head out to shop for groceries. I had forgotten to charge my iPad and didn't have anything in my hands to distract me on the trip there or back.

In eight and a half years of making that trip to that store, how had I never noticed that the sign outside the restaurant Piri-Piri has the caption "Eat, Drink, Repeat" under the name? Or that the Portuguese Fish Market sells juices for home-made wine and lists them all on a board on the outside of the store?

I have been making a conscious effort to see the world this week as I continue reading Ms Rosenthal's book.  With some luck and effort on my part, I will continue to do so, it's not natural for me. I'd rather tuck myself into my books and games and music on my travels - maybe so that the world won't see me.

In our transit debate, it seems more and more that the people against the plan refuse to see the people who actually use transit. "Certain types of people" use public transit a downtown merchant said to the chair of the transit commission, and the merchants are certain that "those people" don't patronize their establishments. As one of "those people", I'm tempted to ensure that those merchants don't see a penny of my hard-earned money!

This morning, someone nearly walked into me because she was too busy looking at her phone to see where she was going.  Has our connected world made us look at things - and people - but not SEE them?

It seems so; and the words written by a man who could not have foreseen the existence of cell phones ring truer than ever:  we are willfully blind because we will not see.


*****

Amy Krouse Rosenthal got less time on planet earth than I have had, and that's a sad thing. But her publisher has found a way to honour her spirit, and you can join in. Visit this web page to learn more:

http://www.chroniclebooks.com/blog/2017/03/10/amy-krouse-rosenthal-wish/

Saturday, 1 April 2017

One year on....

I was so, so wrong about so many things.

The angioedema took a 5 month break, returning with a vengeance on New Year's Eve. I am now on episode number five in a three-month period. Allergy testing found something new, but it doesn't explain this, and the blood tests were inconclusive. It's back to the drawing board, or more medical tests probably.

My job has taken an even worse turn. I've gone from a boss who barely gives me anything to do, to one who refuses to give me ANYTHING, or access to the tools that would allow me to do the few things she can't take away. I've had one interview in 15 months that went nowhere, and this is killing me. My family raised me to take pride in my work and a job done well, this isn't who I am.

My dearest friends have had major changes in their lives, and there is no place for me in those lives.

Most of all, they've found love that I now have to accept will never be mine.

My high school friend disappeared shortly after my last post to this blog over a year ago. He had a major anxiety attack and vanished.

Several months later, the two men that had been in my life for over half a decade each rejected me; one deciding he wanted my tiny perfect friend instead of me, the other for reasons I have been unable to discern.

I am desperately lonely and afraid all the time. The panic attacks I thought were behind me have returned, in the middle of the night, in the middle of the day, while I get ready to go to work in the morning. I have painful arthritis leaving me unable to do the things I love.

The self-loathing is worse than ever; the fears of dying alone and never being loved are even stronger.

I hold it together for my public persona; my mother called me today to praise my performance on TV 2 weeks ago concerning my community work.

In all this world, I feel there's no place for me. And no one should feel this way about themselves...

Friday, 26 February 2016

Death by a thousand paper cuts....

"Angioedema is a ... type of swelling that affects deeper layers in your skin, often around your eyes and lips." - From www.mayoclinic.org

I had my first allergic reaction as described above when I was 5 years old and my body finally said "no" to Aspirin - baby Aspirin at that! It was the severe kind, where one's tongue and throat swell as well as the lips; and spending most of your life knowing that you can react like that to a common drug gives you a healthy respect for pharmaceuticals.

Conversely, I'm also a huge believer in better living through chemicals, at least if a medical professional is proffering said chemical. While my teen friends were experimenting, I was the poster child for "just say no". But I wimped out on menopause with 6 years of HRT, and agreed instantly to anti-depressants to go along with talk therapy when I needed them.

In the intervening 50 years since the Aspirin incident, I discovered that Ibuprofen was also out of the question following a similar (though less severe) reaction to that. Which left me with the "safe" anti-inflammatory, Naproxen.

For the past week, I have been dealing with my fifth episode of angioedema since October. I can no longer blame Naproxen for it since I haven't had a tablet since January 4th and the pharmacist I talked to on Monday assured me that it would have long ago left my system.

This time around, I swear my lips made me look like the love child of Angelina Jolie and Mick Jagger, though other people said it wasn't that bad. But the corners cracked and the swelling was crooked, as if some untrained plastic surgeon had gone to town on my mouth with a vial of Juvederm! If I wasn't careful, the blood would trickle from the left side and one would think I was a vampire who'd just had lunch.

Have you ever cut your lip while licking an envelope? Imagine that times 12!

Hot beverages are out of the question, they sting too much. I caused many a laugh in my office by putting a straw in my cup of coffee. The natural acids in fruit are painful - every piece went on a fork and placed on my tongue so I could eat anything other than bananas.

The lactose in cream sauce stings, as do salty things - I found myself rubbing the salt off the bag of almonds in my desk drawer in order to have a snack.

Hot meals had to cool, cold meals had to warm....

I've finished a tub of Blistex Medicated, a tub of Aquaphor and most of a tub of Vaseline Lip Therapy. 

9 days out, my lips continue to crack and bleed and I have to soak a washcloth in warm water to exfoliate off the peeling bits twice a day.

There was one upside; a coworker complimented my beautiful full lips when I made a remark about the gorgeous lip gloss she was wearing.

With any luck, some of the fullness will last after the pain recedes; and this will be my last episode of angioedema.
  

Tuesday, 26 January 2016

Lonely no more...

In the year since I drew attention to my mental health blog post and my continuing struggles with avoidant personality disorder, a few things have happened to bring more balance and happiness to my life. (http://labellatestarossa.blogspot.ca/2014/10/the-ugly-truth.html)

The first was the number of people who reached out to me to express their support; I can honestly say that it wasn't what I expected. What I thought I would hear is "that's not a real thing". I didn't. (http://psychcentral.com/disorders/avoidant-personality-disorder-symptoms/)

The second is that I took steps in order to deal with some of those things I have been avoiding in order to open my life to more possibilities. With help from the wonderful Amanda Stark, my home is a place where I am able to invite people, and will soon be a place where my friends can gather and my family will be able to celebrate holidays. I may even get a canine companion.

The third is the love I have found with my girls, Laurie Bursch and Shelley Carr. They have provided me an anchor to tie to when my mind wants me to spiral down to depression, and give themselves and their time freely. Individuals with avoidant personality disorder have limited social circles due to the fears built up in their minds; I have been blessed to find two people who were willing to help me break down those barriers. I don't tell them often enough how much I love and appreciate them. Now the whole world knows.

My personal successes with my non-work commitments to Women & Politics and now the SoHo Community Association have shown me that I can make valuable contributions to my community. It's a confidence booster. But not without challenges where I question my ability to do a good job for them. As we used to say in Brownies, "I promise to do my best".

The reappearance of an old friend from high school has certainly been the most unexpected thing of all.

One of the reasons I'm not on Facebook, and that neither this account nor my Twitter account identify me by name, is to help me avoid people from that time in my life when everything bad was happening. I'm smart enough to know that I should stay away from triggers, lest I get trapped in that cycle again. But I was persuaded to put a profile on LinkedIn for professional reasons and was discovered that way.

There are fewer than 10 people from my high school years that I wouldn't mind spending time with again; D is one of them.

Since he made 'first contact' at the beginning of December 2015, we've spent a lot of time via email, text, and phone baring our souls to each other. When you're a teenager, you don't talk about hopes and dreams and fears; and you definitely don't tell people about the darkness in your life, lest you be rejected, ridiculed, and disbelieved.

Now we're well into middle-age and a lot of those hopes and dreams have fallen by the wayside, and, shockingly to both of us, we're discussing ALL of it. Shockingly because we weren't that close all those years ago.

Is it possible to miss someone without knowing it? Because that thought went through my head more than once as we sat in my living room talking a day away recently.

I don't have an answer for that. But I do hope we'll be friends for the next 35 years making up for those we were apart (with any luck).

*****
Every day presents challenges, this doesn't just go away. I continue to find myself mired in self-loathing on a daily basis; there are many, many days when the ugly takes over and the worthlessness moves in.

In her book "Fat Girl Walking", Brittany Gibbons implores those of us dealing with this to:

Remind yourself of all the ways you are beautiful, stop the negative talk... and do what it takes to get comfortable in your skin.

I'm still not sure how to get there. For me, sharing how I feel with the world was a big step. Talking myself into self-love is infinitely more difficult.

But now it feels easier, definitely less lonely; and maybe that will be something that builds over time, allowing me to find some measure of contentment.

Next to True Love & Eternal Happiness that would be the best thing of all.
   

Tuesday, 19 January 2016

Heartache tonight...

I was 13 years old when I heard "Desperado" for the first time.

There was something about the plaintive vocal and it's final line about allowing oneself to be found by love that resonated; words that continue to have meaning in my life well over 40 years later.

It was the start of my love for the music of The Eagles, a love that time has not diminished. No other band has captured the pain of heartbreak and loneliness more than they did in only eight studio albums. Yes - 8! All other albums are compilations.

But those eight albums produced some of the most iconic music of the 1970s - no one can deny that. The haunting opening notes of the title track of "Hotel California" are proof enough of the band's ability to catch your ear and hook your heart and take you on a journey to places you never thought you'd go.

Unless you're a single person who knows the words to "Wasted Time" by heart:

"You never thought you'd be alone
This far down the line
And I know what's been on your mind
You're afraid it's all been wasted time"

*****

I only got to see them play live once, on a magical, hot summer night at the amphitheatre at Ontario Place in July 1996. It was the day before I moved to Ottawa.

Despite being two years into the infamous Hell Freezes Over tour, the band were in perfect sync, and the music still held onto your heart. At the end of the encores, as the crowd filed out and my uncle and I remained in our seats, I remarked to him that if my plane crashed the next day, I would die happy because I had finally seen my favourite band play.

Now it will never happen again with the death of Glenn Frey yesterday.

I have few words to describe how much his body of work with The Eagles and as a solo artist have meant in my life, this blog entry just scratches the surface.

The Eagles' website posted the lyrics to Glenn's song "It's Your World Now" that closes out their last studio album Long Road Out of Eden:

"The curtain falls, I take my bow
That's how it's meant to be, it's your world now"


But for me, it's the title of another song from the same album that captures my feelings at the moment:  "What Do I Do With My Heart".




Tuesday, 20 October 2015

Remembrance of things past....

(With apologies to Marcel Proust, because I can never seem to have an original thought!)

In the last federal election held in Canada in 2011, the NDP became the official opposition under the leadership of Jack Layton.  A native Québecker, he had lived in Toronto for many years, sitting as a city councillor before entering federal politics.

Mr. Layton always spoke of hope - it was central to his message to his party and his country; in his acceptance speech upon becoming the leader of the NDP he said:

"Hope ... is what drives New Democrats."

And it was that message that he left to Canadians in an open letter sent around the world only two days before his death:

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.

In the election campaign that my country just went through, it is safe to say that the former ruling Conservative party didn't believe this at all.

But, sadly, Mr. Layton's party also seemed to abandon his ideals and left the hope and optimism to Justin Trudeau.  Whatever it was that Tom Mulcair hoped to accomplish, the message that came through appeared to offer little in the way of traditional NDP values, swerving dangerously far right in a vain attempt to siphon votes away from the Liberals and Conservatives.

Yesterday, my country once again embraced hope and optimism - in the personage of the eldest son of our former Prime Minister, Pierre Trudeau.

Justin they called him, over and over again; using his first name alone to belittle him.  "Just not ready," the Conservative attack ads said, over and over, long before the election campaign even started.  The mockery and ridicule were picked up by the NDP in the last weeks, as they saw their support erode, while the Liberals soared.

Mr. Trudeau fils ignored it all and appealed to the better instincts of the Canadian people.

And they responded with hope and optimism.