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...