I write because…

owl_first-issue_jan-1976I remember being eight years old and excitedly entering one of my stories in a writing contest for OWL, my favourite magazine at the time.

While my story didn’t get published, I received a really nice handwritten postcard in the mail, encouraging me to keep writing.

I write because I feel compelled to write. It’s almost as though I didn’t choose to be a writer. Writing chose me.

I don’t see myself as a literary writer. In high school I did very well in a Grade 10 English literature class, finishing in the 93rd percentile, But in Grade 11, I didn’t get great marks on short story assignments and I wasn’t my teacher’s favourite student. I didn’t impress her. My stories weren’t considered as interesting as those of my classmates.’ At graduation she gave me an award for being “most improved in English” or something like that. She said she issued that award to help me because I was planning to be a writer but I felt pitied and I doubted my writing abilities.

I had originally planned to become an environmentalist. But I was terrible at math and didn’t do well in science classes. I figured since I failed Grade 11 math and I didn’t understand it at all, my chances of ever realizing that dream were low.

So writing seemed realistic. I figured journalism would work since I didn’t need to be literary, I could just present the facts and I could play with words without worry and be creative in a way that suited me. After reading about freelance writing I decided that when I had children I could work from home and have more chances to spend time with them. I had no idea what that would actually be like but when I was 16 that sounded great.

Over the years I’ve had  a few editors (five out of 20, something like that) who’ve hated my writing style. I’ve been told I lack a voice and personality and that I should join a writing group.

I’m not sure what to make of such criticism. I’m not a ‘hey look at me’ kind of person. Because of my news journalism background and leanings I’m not always comfortable putting myself in the articles I write. I was taught that stories weren’t about me but about the people I was covering or profiling.

I write because I enjoy sharing people’s stories, exposing injustice, informing people. I write because writing helps me get my thoughts and daydreams out of my head.

I write because…

Inherited kidney disease – carriers’ guilt?

kidneyimageMy 21-year-old nephew is ill, his kidneys failing. We’ve known for years this would happen eventually. Alport Syndrome, the kidney disease in our family, is relatively rare. But it progressively damages the tiny blood vessels in the glomeruli of the kidneys (the kidney’s filtering system in the basement membrane of the kidney) to the point that eventually they can no longer filter wastes and extra fluid from the body. It’s caused by a mutation in a gene for a protein in the connective tissue, called collagen that progressively affects the kidneys and may affect the eyes and ears. In my family, we don’t know of anyone whose hearing was directly affected by Alport Syndrome and while a number of us wear glasses, it’s unclear whether this is because of Alport’s.

My nephew’s situation hits close to home because my 19-year-old son has the same disease. Besides worrying about my nephew, his situation has me thinking that we could be in the same position in only a few years.

When our sons were born, neither my sister nor I knew we were “carriers” for Alport Syndrome, which in our family is the “X-linked” transmission type, passed down by mothers to sons. We discovered our connection to Alport’s when my nephew was three years old. He’d contracted an illness and doctors were checking his urine to see if the infection had cleared. They noticed hematuria, microscopic amounts of blood in his urine. A doctor asked, is there kidney disease in the family?

Of course there was. It wasn’t in my mother’s immediate family but two of my great aunt’s three sons died of the disease. Other relatives had it. We didn’t know much about it but what we’d heard was scary.

My sister and mother had their urine checked for hematuria. I was urged to do the same. It was shocking for my mother to discover her daughters are carriers. She feels terrible about it.

Over the years I’ve felt sad that I brought two sons into this world with this disease, not because of their existence but because chronic kidney disease is no fun. Yet I don’t think I should feel guilty about being a carrier or not knowing that one of my X chromosomes had a “defect.”

I hate the disease and what it does to the affected male members of our family but I don’t hate my genes if that makes any sense. The disease is just one small part of my DNA and my family’s DNA and it doesn’t define who we are.

The men in our family affected by Alport’s who died in their 40s didn’t have access to the incredible medical care available today. As I understand it, my relatives received kidneys from cadaver donors. I don’t know what kind of screening was done to make sure the transplanted kidneys were a match for their bodies but as I understand it, they underwent more than one kidney transplant throughout their lives. Undergoing dialysis, experiencing their bodies rejecting transplanted organs, taking powerful medication and having many kidney transplants was hard on their bodies.

Today a young person experiencing kidney failure may receive a kidney from a living donor. Doctors do blood tests to see if a donor’s blood type is compatible with the recipient’s and if it is, further blood tests (tissue typing and cross-matching) are done to ensure a match. A living donation means better donor organ survival rates, there’s less waiting and the recipient may even avoid dialysis.

Until now it’s been a waiting game for my son and nephew. We knew they had the disease but their kidneys were healthy enough. Besides visiting nephrologists and receiving prescriptions for blood pressure medication to take pressure off the kidneys, there’s been nothing to discuss.

Now my sister is caring for my nephew and it’s a crash course in hemoglobin, potassium, phosphate and creatinine levels. She knows all about the renal diet, different types of dialysis,  the location of the MUHC’s three dialysis centres and which one to take my nephew to and when, that blood transfusions are a bad idea for a person who needs a kidney transplant, the list goes on.

I’m sorry I don’t have any relatives to talk to about this disease. I’m sure the cousins who died would have wanted to live a lot longer than they did. I only met them briefly but from what I remember they were intelligent, interesting folks, hard workers who made the most of their lives.

Right now a kidney transplant from a living donor is my nephew’s best bet. Thankfully his odds are excellent. A number of people have offered to donate a kidney and when his body is stronger and a match is found, he’ll receive a transplant.

My sons and nephew are blessed with amazing medical care and there are all sorts of potential cures on the horizon for Alport Syndrome and other kidney diseases.

I don’t know what else to do but learn more about Alport Syndrome, talk to people living with it or whose loved ones have it and prepare for when my son’s kidneys fail.  I’ll raise funds and give to groups such as the Kidney Foundation of Canada, whose staff and volunteers have already helped me tremendously with information and support, and the Alport Syndrome Foundation, an incredible organization that not only helps people living with this devastating disease realize they’re not alone, it advocates for people and funds research to find a cure to end Alport Syndrome forever.

Inherited kidney disease – carriers’ guilt?

Aargh, some Montreal St. Patrick’s parade misconceptions

giant Saint Patrick at parade
Giant Saint Patrick figure at Montreal’s St Patrick’s Parade                            Rosana Prada/Flickr

Okay. It’s true that in spite of my last name I am only part Irish. If you look at my ancestry I’m probably more Scots and English than Irish. At this point, nine generations in Canada on my dad’s (O’Hanley) side and seven generations in Canada on my mom’s side, I am Canadian, not really Irish at all.

But having O’Hanley as a last name has meant for years I’ve had people in Quebec confuse my last name with that of the chocolate bar “O’Henry,” which isn’t even an Irish name, and I’ve often heard, “your last name is Irish, are you Irish?” So I’ve sort of embraced this Irish heritage and learned a bit about Irish culture and the community here.

Here are a few mistakes I see every year around parade time that for whatever reason drive me nuts:

Happy St. Patty’s Day!

I saw this written on the side of a float in yesterday’s Hudson’s St. Patrick’s Day Parade. The problem? It’s St. Paddy, not St. Patty! St. Paddy is a reference to Patrick, also spelled Pádraig. St. Patty would be St. Patricia. So the slogan on the side of the float should have said Happy St. Paddy’s Day!

The danger in getting it wrong? You could be mocked by the Irish in Ireland. There’s even a guy who’s been writing about this for years (check out Marcus Campbell’s “modest proposal” for Paddy, not Patty here). He even has a Twitter account where he posts such errors. Besides, mixing up Patty and Paddy makes people here look like ignorant Americans. 

St. Patrick’s Day Parade

While this is the correct name for Hudson’s annual parade, it’s not the correct name for Montreal’s parade. Technically Montreal’s parade is called the St. Patrick’s Parade, not the St. Patrick’s Day Parade. It usually doesn’t take place on the day itself (March 17), so the official name of the parade does not reference it. But the United Irish Societies of Montreal aren’t helping the media get the name right when the site description for their own website mentions the St. Patrick’s Day Parade! If you read the text on the site carefully you’ll see the event is officially called the St. Patrick’s Parade. But how many media outlets get it right? At this point they should probably change the name to match what it’s almost always called, Montréal’s St. Patrick’s Day Parade.

United Irish Society or United Irish Society of Montreal

It’s been getting better over the years but you usually see at least one media outlet get the parade organizer’s name wrong. I suppose the reason the name of this community organization is plural is because there were several societies involved in putting the parade together in 1928 when they took over running the parade. So it’s United Irish Societies of Montreal, and not United Irish Society or United Irish Society of Montreal.

I suppose I’m being nitpicky. I make mistakes all the time. We joke in our family that whenever you feel stubborn or critical it’s the O’Hanley coming out. This is our Coat of Arms so what do you expect?

ohanleycoatofarms

 

Happy belated St. Paddy’s! I hope you’ve enjoyed at least one parade this weekend!

 

 

 

 

 

Aargh, some Montreal St. Patrick’s parade misconceptions

Highway 13 drivers weren’t the only ones stranded during Montreal’s record-setting blizzard

Gare Sainte-Anne-de-Bellevue
Snowy Gare Sainte-Anne-de-Bellevue, as it looked when I finally arrived on March 15, 2017

What about STM and AMT commuters?

Yesterday there seemed to be a lot of finger pointing at the Quebec government for its abysmal emergency preparedness. I agree that there is no excuse for 300 drivers being stuck overnight on Highway 13  with no help because of the storm.

But I believe the City of Montreal failed many people affected by the storm, especially when it comes to public transportation.

On Tuesday night (March 14)  I attended a University of the Streets Café discussion and because I had no idea the STM buses were having such a hard time on the road, I thought I’d be able to get most of the way home to Vaudreuil-Dorion by bus. I stupidly stuck around after the discussion when it would have been better to take a commuter train. But because I missed the last train of the night, buses were my only affordable option.

When I got to the 211 stop, just down the road from the Lionel-Groulx metro, I joined a very long line of people who were waiting for the bus. It was around 9:30 p.m. and when I got there the folks I spoke with had been waiting for over an hour. There were two buses parked across the way from the stop and an STM inspector’s car was parked in the middle of the roadway but the bus drivers didn’t invite people aboard the buses so they could warm up, nor did the inspector tell people what was happening. I waited an hour with the people I’d met and during that time no one came by to let us know anything, for instance, would the buses eventually be on the road? There were no city councillors or city officials or anyone really bringing people hot beverages or something to keep them warm while they waited outside. The woman I spoke with is a student who had parked her car in Dorval and was worried about receiving a ticket if she didn’t get her car (I hope they didn’t ticket her. She had a very good excuse for not getting to Dorval). The information was murky in terms of the reasons (work on Highway 20? Highway 13 mess? accidents?) but it seemed no one could get anywhere via Highway 20. The man I met lives in Île-Perrot and couldn’t get home. The woman had a possible place to stay in town but the man didn’t know anyone. They were just two of the many people who live in the West Island and beyond who could not get home Tuesday night and no one from the City of Montreal or the STM or the police or anyone official offered them any information or comfort. Technology exists to send text messages on smartphones. There’s not really any excuse in this day and age for neglecting people like this.

This situation shocked me because I thought Montreal was hardcore and good at handling emergencies. It’s not as though we haven’t had bad snowstorms before. We survived an Ice Storm in 1998 and handled that well. On Tuesday I had the impression city officials were asleep at the wheel. Didn’t they know people were stranded across the city? Isn’t there a protocol for such a situation, even if it happens off hours? Could they have arranged with the AMT to put more trains on so that people heading west would at least have a chance of getting home?

When a huge group of buses suddenly arrived at Lionel-Groulx and abruptly parked, the woman and her friend and I decided it was time to go but the man from Île-Perrot stayed. As I headed into the metro, I asked the guy at the ticket booth what was going on and he said 150 buses were out of service (apparently drivers couldn’t make their shifts and many buses got stuck in snow , most likely because they’re not equipped for it. In their story about the buses, CBC reported Montreal buses aren’t equipped with snow tires. What’s puzzling me is this story mentioning the STM tweeting that its buses have winter tires.  It seems the tires mentioned in the story may not be winter tires at all but something called traction tires. If you know anything about this, please write a comment below). I headed to Villa Maria metro, the closest metro to my parents’ house. A large number of people were waiting in vain for the 103 bus. Among the group were many seniors, people who regularly depend on public transportation to get around. I waited with them for a while, maybe half an hour. But when we saw a bus on Monkland struggling to move forward to get to the station but unable to because there was too much snow, I knew I wouldn’t be taking a bus. So I walked to my parents’ house. I wasn’t the only one walking. I followed a family as they made their way along Monkland. I also met women who too were walking along unplowed sidewalks. It was beautiful out and would have been fine were the wind not so icy. It took more than an hour to get to my parents’ house and I got there close to midnight. But I was lucky. I had a place to stay in Montreal. I don’t know that everyone else did. There were no “portes ouvertes” efforts on Twitter or Facebook to help stranded people out, there was just nothing in terms of emergency preparedness.

Food for thought?

Highway 13 drivers weren’t the only ones stranded during Montreal’s record-setting blizzard

Tonight! Progressive Salon’s Harm Reduction in a Marijuana World

 

salonprogressistemarijuanalegalizationdiscussionimage
Source: Salon Progressiste/Progressive Salon/Facebook

 

If you’re in Montreal and especially if you can get to NDG tonight, there’s a really interesting event happening at the Coop La Maison Verte.

Progressive Salon (Salon Progressiste) aims “to offer regular opportunities for Montrealers to convene and discuss in a serious and structured way the great questions challenging Canada” and tonight’s Harm Reduction in a Marijuana World – the implications of legalization of marijuana in Canada will have you wondering what life will be like if Prime Minister Justin Trudeau keeps his promise to introduce legislation to legalize pot this spring.

Guest speakers include Dr. Mark Ware, Associate Professor in Family Medicine and Anesthesia at McGill University and executive director of the non-profit Canadian Consortium for the Investigation of Cannabinoids (CCIC)  and Adam Greenblatt, Head of Quebec Engagement for Tweed, a Smiths Falls-based company licensed to produce medical marijuana.

When: 7:30-9 p.m.

Where: Coop La Maison Verte,

Admission: Free but get a ticket by filling out a form here.

Or visit the event’s Facebook page

Tonight! Progressive Salon’s Harm Reduction in a Marijuana World

Shiny happy government?

20170308_st_sub_1040x585_02
Prime Minister Justin Trudeau meets with women on International Women’s Day 2017     Source: PMO 

I have so many mixed feelings about our current Canadian government. After so many years of seeing pretty much everything I love destroyed under former Prime Minister Stephen Harper’s government, you’d think I’d be thrilled with our progressive, “feminist,” prime minister.

But I can’t shake the feeling that this government is all about photo-ops and I’m tired of seeing a slick marketing machine.

I mentioned it before on this blog. I’ve been sick. I have some sort of chronic illness that’s making me feel incredibly tired and is messing up my digestive system. I’ve undergone all sorts of tests and conventional medicine is not giving me any answers. It could be IBS-C, food intolerances, something with my gallbladder, a microbiome needing nourishment. Friends have made excellent suggestions, I’m trying out different solutions, am changing my diet (which already was mostly vegetarian and usually low-fat!), and I think I will be fine in the long run. But being home sick means I’m watching TV.

I was watching a clip of one of our federal cabinet ministers, I won’t name him, but all I could think of was ‘wow, that goes guy does not have a hair out of place and does he have a manicure?’ I’m supposed to be listening to what he’s saying but instead of listening I’m thinking, ‘wow, he looks a lot more styled than what I’m used to.'” Then on International Women’s Day, all the Members of Parliament (MPs) were gone for the day, replaced by young women who sat in the MP’s seats in the House of Commons. The Prime Minister was there addressing them and listening. The young women were amazing but all I wondered was the event even about them? Or was it, you’re such a feminist, Justin! What a gent! What a photo-op!

As a teenager I met my MP,  the late Warren Allmand, who at different times in his career was a cabinet minister in Pierre Elliott Trudeau’s government (Justin Trudeau is the son of former Prime Minister Pierre Elliott Trudeau). Mr. Allmand wasn’t ill-groomed but he didn’t look like he’d stepped out of GQ Magazine either. He looked normal.  He spoke normally too. He wasn’t on message all the time. He wasn’t looking for a camera. And he didn’t give me the feeling he wanted to be liked. He just did his job.

My high school wasn’t co-ed so I have no idea what life is like in a typical high school. But to me, Justin Trudeau’s cabinet is like some sort of student council run by the popular kids. They look good and they want to be liked and they think they’re cool. Why does everyone dress like it’s school photo day all the time?  Why is their hair so perfect? Do they have a stylist on standby? And why is everything they say so scripted? What happened to simply being yourself? Or staying on message but speaking in a normal way?

Here in the Montreal area a scandal recently erupted surrounding a nomination for a Liberal MP in the Saint-Laurent riding. The local borough mayor wanted to be the Liberal candidate in an upcoming by-election but he wasn’t selected even though he had tons of credentials and knows the area incredibly well. The word on the street was the federal Liberal party had chosen their own star candidate and wanted her to get the nomination, even though she wasn’t from Saint-Laurent. Last night the star candidate the Liberals had supposedly handpicked came in last during a nomination vote. To everyone’s surprise, a young woman from Saint-Laurent secured the nomination instead.

It’s a relief to know that not everyone is drinking the Trudeau Kool-Aid. People want an MP from their own neighbourhood, not someone the Liberal brass parachuted in. Substance matters more than style. In Saint-Laurent the people’s voices were heard.

Political parties need to remember their grass roots. Their representatives need to listen carefully to voters and connect. I would love to see the folks in Trudeau’s cabinet go off script from time to time. Life is not an endless press conference or a marketing campaign. I vote for keeping it real.

 

 

 

Shiny happy government?

Our bizarre experience transferring an RESP from Investors Group

broken-piggy-bank
Source

 

Last fall our financial advisor at Investors Group told us he was leaving. Not long after, a letter arrived saying our account was now “orphaned” but folks were doing their best to find us another advisor. Eventually, another advisor took over the file for my son’s Registered Education Savings Plan (RESP) but no one bothered to inform us.

It didn’t matter anyway. I was pretty fed up with Investors Group and in spite of news about a phase-out of Deferred Sales Charge (DSC) fees for existing DSC accounts, I still wanted out.

My boyfriend is pretty happy with his financial advisor and we liked the guy so in early December we started the transfer process. I figured it would take a few days, maybe a few weeks.

When we set things up, we explained a quick transfer was crucial because my son is attending university and would need the money to pay his tuition by the end of January.

Without going into detail, I’ve investigated things and I’m feeling angry and frustrated with the whole situation but also bewildered since the transfer is still not done and tuition is due on Jan 31st, plus my son needs his textbooks now and I’m going to have to borrow money if the situation is not resolved very soon.

Here’s a timeline of what’s happened with our file, based on my investigation:

  • Dec. 2:  opened file with new advisor
  • Dec. 8: new advisor’s company set up our new mutual fund with new company
  • Dec. 9: Investors Group does a trade for the money in the RESP
  • First week of January: I follow up with new advisor’s company and am told transfer is not complete.
  • 2nd week of January: New advisor’s company phones. Someone from support staff says Investors Group is one month behind with its transfers and is refusing to go any quicker. Maybe if I call Investors Group that would speed things up or I could request the funds so my son has his money?
  • After hearing from the new advisor’s office, I phoned Investors Group’s local office and tracked down the guy who was handed our file. He says the new advisor’s office should have phoned him first and not dealt with Investors Group headquarters. Says he’s handled transfers and they take three days to complete. I relay this to the woman in my new advisor’s office and give her his phone number.
  • Apparently, a cheque containing my son’s RESP funds was sent by Investors Group’s headquarters in Winnipeg to the new mutual fund company in Toronto by snail mail on January 12th. It still hasn’t arrived.
  • On Friday (Jan. 20) the new mutual company says if they don’t see the cheque soon (they said they scan their mail and would know if it had arrived), they’ll ask Investors Group to cancel the cheque and reissue. They’ve apparently sent Investors Group several “notices of delay,” to no avail.

When we’ve dealt with the new advisor there’s been a lot of badmouthing of Investors Group for having such a slow process but when I’ve phoned Investors Group they’ve been helpful except for the bit about mailing all of our RESP money in an old-fashioned cheque via Canada Post by regular mail, no tracking whatsoever!

I don’t feel like anyone in this whole mess really cares about me or my son and the problems we’re having accessing the RESP money. There’s no one proposing a solution. (UPDATE: On Monday, Jan. 23, a customer service rep from Investors group offered to have the original cheque cancelled, reissued and sent by courier to Toronto but it would only get to Toronto next Monday or Tuesday. This was way too close to the Jan. 31st deadline for me and I decided to borrow money instead. The cheque has still not arrived and it’s unclear when this situation will be resolved). No one is forwarding the funds so we can pay for tuition and books. And because I’m not getting many updates on what’s happening, I’m looking into it myself.

If you’re leaving Investors Group, my advice is to budget a couple of months for a transfer. And be careful about transferring because I was charged DSC fees. Apparently, if your money is in a DSC fund, the fees apply for seven years from the last day you made a monthly payment, something I was never told.

I wish I had withdrawn my son’s tuition money before beginning this transfer. I had no idea it would be such a nightmare.

I’m calling Investors Group tomorrow to find out exactly where that cheque was mailed. If it went to the wrong address, I will track it down!

 

 

 

 

 

 

 

Our bizarre experience transferring an RESP from Investors Group