So you want to talk about mental health

Have you caught that show on cable lately about mental health and the chick doing the interviews is like mentally ill? Not like sittin naked in the bath tub rubbing feces on herself but like legit PTSD. She had a kid that died I think or some shit like her Dad didn’t hug her enough. She used to be my roommate so I overheard her on the phone talking about it.

That’s how we talk about mental illness. Those are direct quotes from different people. 

I published a book about how I “got” PTSD and my mother-in-law posted a review on Amazon that said anything negative in there about her was due to my mental illness making me remember stuff wrong.

That’s how we talk about mental illness.

When a guy back in Newfoundland started a charity for mental health I sat my oldest son down and told him all about it. He wanted to know what mental illness meant and I said it’s like stuff in your mind that you can’t help, like being sad but for no reason, or worrying all the time when there’s nothing to worry about. He thought about it for a second or two and then looked up at me with those eyes he got from me and said Mom do you have a mental illness?

Yes honey I do but if it can be broken, it can be fixed. And I’m working on it. That’s why I do yoga and why I meditate and why I go talk to a doctor and do Reiki and why we all talk about our feelings in our family. 

Okay cool Mom. I love you. Can I go play Wii U now?

That’s how we talk about mental illness in my house.

Recently we were at a concert and my son got pulled up on stage by his musical hero. He stole the show with his enthusiasm and honesty. The crowd laughed and clapped again and again and it felt like it lasted an hour. It was a little more than a minute and when he came back to his seat he was ecstatic.  And then a few minutes later that big bottom lip that he got from me was quivering and his eyes were all watery. I asked him what was wrong and he hugged me for all he was worth and said “I don’t know Mom, I was happy and then I started thinking about bad stuff. Like that game I lost and I should have told that guy that I wanted you to come up there with me because he’s YOUR favourite singer.”

Luckily I had just read a meme on Facebook about your brain playing tricks on you when you feel too good. I had been reading this other more in depth book called “Make the Leap” and there was a big section on times when you shit on your own happiness. It’s as though there’s an upper limit on happy and your mind starts picking away when you reach that imaginary line. I held his little face and yelled over the music “You have my permission to enjoy this. It’s okay to be happy. I wouldn’t trade what happened to you tonight for a single second. It made me happy to see you happy. So just enjoy this for a while longer.”

We did a few breathing exercises and I hugged him a million more times and we danced like only Newfoundlanders can - half crying and half laughing, vacillating between depression and ecstatic joy and wanting to go home to get some sleep and never wanting the night to end.

This is how we talk about mental illness at a concert.

That same week I attended the ECMAs to do a feature on their Mental Wellness Center. The awards have been around now for 30 years but never before have they had services on site for mental wellness. There was yoga and acupuncture and massage and a keynote speech on taking the weirdness away from mental illness.

Last year there was a musician on the US side that did a sold out show and went back to his hotel room, said goodnight to his wife and kids over the phone and hung himself. It was the first I had heard of that direct of a correlation between music and mental illness.

The news about the ECMAs wellness center seemed directly linked to that story at least in my mind.
I wanted to talk to the people who had made the decision to include the ‘mental health services’ but they were unavailable for comment. I was told I could wait around and grab one of the executives on the committee after the awards show on the last night but by then I was all out of the creative pluck I’d need to approach a stranger, introduce myself, explain my project and then ask for a heart to heart chat about mental illness.

So I came away with what I had managed to put together in my three days in Halifax. I spoke to the volunteer coordinator who had not heard about the extra training that was supposed to be provided for the ECMA front line folks to spot a mental crisis. I met a volunteer who had filled in well beyond the shifts she had originally agreed to and was still smiling even though she had not been able to partake in the wellness offerings. I sat down with the coordinator of the wellness center who had been teaching yoga nonstop all weekend and was planning to treat herself to a float in a sensory deprivation tank to decompress from the hectic week……of…..teaching…nonstop……at a music conference.

I met a musician who was thrilled about the new initiative and disclosed that a friend of his arrived at the conference, had an anxiety attack and stayed in his hotel for two days, missing meetings and completely unable to function. I met another musician who sat through over an hour long interview with me and as we were getting up to leave, in true doorknob confessional fashion blurted out “Pfft, mental wellness….I’ve been seeing a professional therapist since I was 11.”

One of my interviews was with a musician who toured with the late great Ron Hynes. I knew Ron about as well as most and I knew he went to rehab years ago and wrote an entire album when he got out. It was my least favourite of all his work. I remember a fellow fan touching my arm back then when we got the news that he almost died and his family had forced him into a program – she said, “It’s terrible I know but can you imagine the music that’s going to come out of this.”

Fucking parasite. That’s what we all are. Parasites.

Ron’s former band mate looked as if I had punched him when I brought up the wellness center and whether it’s current format would have ever helped someone like Ron. Eventually he came around and said you know, Ron should be here. But who the hell are we to force anyone to confront their issues. Maybe he would have gone to someone and asked for help here at the ECMAs but I doubt it.

The most eye opening and genuine conversation happened with the keynote speaker. He is a musician/recreation therapist who made a documentary about something he tried to do to combat his PTSD symptoms.

It didn’t work. He still has PTSD. He’s trying to raise a family, still hesitates to identify as a person who has PTSD for fear that that is all people will see and we were finishing each other’s sentences. He got it. He got me. I felt like I got him too at least a little bit. I don’t think we mentioned the ECMAs or the wellness center. We just talked like a couple of people who were prone to PTSD because of our childhoods (our words, nobody else’s) and then something horrific happened. For him, it was watching his friend die doing something they both loved. For me it was carrying my middle son for seven weeks knowing he would probably be dead when he came out and then holding his tiny still body beside me for hours before finally letting the nurse take him to the morgue.

So we all have our demons.

There were moments of pure human connection when I was out shooting my little mental health show. You probably can’t see them because my filming and editing skills haven’t caught up with my creative vision yet but that’s something I’m working on.

Talking about mental health is all the rage now but putting a hashtag on your selfie doesn’t make you deeper or more tolerant or even someone anyone wants to talk to when they’re struggling.  Share your own goddamned story. Stop saying you feel bad for people. Put your phone down. Shut up ‘talking about mental illness’ for a minute and be real.

That’s a terrifying idea right? What if we all took a picture of our messy living rooms or the projects we never finished. Or snap a picture of our kid’s scared faces when we yelled so loud they cried…..there’s a funny meme going around about how we become that person sometimes when the wine runs out…..hahaha! alcoholism – that’s even funnier.

Let’s talk is not a fucking hashtag. Start talking. I dare you. I encourage you. I'm listening. Are you?

Five years and 4 days

For the Grace of Joe is now available in most countries on Amazon. For US orders go to Amazon for the ebook or paperback.

Canadian orders can be placed directly with MPower Books. The total cost is $22.00 Cdn (shipping included) and payment can be made by e-transfer or Paypal to

This book was written for families who are where we were. You are not alone.

Cover art: Steven Hoke

Life will never be the same

I'm currently 24 weeks pregnant.  Seven weeks ago we had a routine ultrasound.  It was the first time in my life that I didn't lay awake worrying about what they'd find.  I'm going to call that my last night of peace.  On the way to the hospital we joked about having the doctor write down the baby's sex and sealing it in an envelope.  We would open it only if we both gave the launch sequence.

An hour later I was asking my partner if we could find out so we could name the baby in case the room full of specialists' predictions came true.

Let me back up a little.

December 28, 2012

The ultrasound technician wasn't saying anything during the scan.  I was asking what we were looking at and telling her what I had just learned in Biology 101 in university.  She wasn't really smiling or responding so I said are you seeing ten fingers and toes on there?

She zoomed in and showed me the baby's left hand and said yup, there's a little thumb and four fingers...on that hand...

We had been there twenty minutes and she put her hand on my arm and said I'm going to stop here to go get the doctor.  There are some problems with your baby.

I glanced over at my calm husband with a knowing look - I know honey, we've been here before.  These assholes are going to try and scare us.

"What problems?" I asked not at all worried.

She said there were issues with the kidneys, brain, heart, stomach, mouth/nose, jaw, feet, hands and the fold of skin at the back of the neck.  Oh and the intestines haven't gone inside like they should.

Oh.  Is that all???

A doctor came in that we had never met and told us we were probably looking at a chromosomal abnormality for there to be so many defects and issues.  He told us our fetus would likely be so delayed and deformed if it survived that we should consider our options for continuing the pregnancy.

First of all, our baby is not a fetus.  The person kicking me as we speak and the heartbeat we all just watched together means we've gone well beyond a medical term.  Secondly, my definition of a successful pregnancy is clearly different from this guy's so I made a crack about not caring if the baby becomes a doctor since they're overrated anyway.

We went in to this ultrasound appointment expecting to get some cute pictures for the scrapbook.  It's impossible to take in this much information with a toddler in the room who is getting restless and I need to go pee and I'd much rather talk to a doctor I trust.  We asked if we could stop the conversation and have the report sent to my obstetrician and take some time to talk this over as a family.

To continue reading: MaterniT21 test

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MaterniT21 test

January 4, 2013

We considered getting a second opinion.  Maybe go to Boston or to the Catholic hospital in town so maybe they wouldn't be so quick to offer an abortion. We have already been to the best facility in the state.  If we went to a less-equipped place, they would refer us right back to where we had gone already.  Boston would tell us the same thing.  We needed more information and despite our vow to never set foot in the hospital again - we went back.

There's a blood test they can do on me called MaterniT21.  It's only being performed by a lab in California and it takes two weeks to get the results.  It's intended to look for Trisomy 21 which is Downs Syndrome.  When the baby's blood cells break down, some of the dna material comes out in my blood.  They can also look for Trisomy 18 (Edwards Syndrome) and Trisomy 13 (Patau Syndrome).

According to the internet:

This test is most accurate at detecting T21 (Trisomy 21).  A little less accurate for T18 and less accurate for T13 but still about 92% accurate.

Babies with T18 are not expected to survive more than a week.  Babies with T13 are given about a year at best.  There is a range of severity with these conditions - partial, mosaic and full.  Some babies get all the markers for their condition.  I can't find an exact list for each diagnosis.  There are kids with full Trisomies that survive.  Some are partial and don't.

January 14, 2013

My obstetrician called me with the results from the MaterniT21 test.  Our baby has Trisomy 13.  The test doesn't indicate whether it's partial, mosaic or full.  But there is little doubt that the baby has T13 - Patau Syndrome.

I'm really wishing at this point that I had not bothered to talk to the genetic counsellor when I went in for the blood test.  I told her the information I had found online and I knew she had already told my OB that she suspected T13.  She advised me that to expect the baby to live past one year was very optimistic and that six months was more likely.  She also warned me that we probably would never take the baby home from the hospital if we made it to full term.  Insert that phrase after everything the doctors tell us 'if we make it to full term.'  In this lawyer-friendly society, they add that phrase after every sentence so that we won't get our hopes up and sue them if I have a miscarriage.

And here I was just hoping not to have the worst of the three diagnoses.

Too much information to process.

January 17, 2013

I went to see my OB and we had a long conversation about our options.  He is not afraid to just talk to me.  He doesn't warn me every other second that I might not go to term.  He has been researching the statistics and shows me a report that says a lot of the medical profession is of the opinion that these babies are not worth saving but that this attitude is not universally accepted because when there are interventions, there are success stories.

We discuss the options before us.  We have taken abortion off the table and it has now been labelled medical termination even though MY health is not in jeopardy.  Once we establish that my partner and my doctor and I are in this for as long as nature allows - we have two options.  Do nothing.  Or do something/everything in our power to keep this baby alive after delivery.

I walked out of the appointment with renewed hope.  The baby was kicking up a storm and my heart felt lighter.  We just needed more information to prepare for what lay ahead.

I asked for a full body, head to toe scan, no interruptions, no advice, just a full report on whether anything had changed from the 18-week ultrasound.  I wanted a dvd copy of the scan and I wanted pictures like they give you when your baby counts.

I also made an appointment with the only pediatric cardiologist in the state who does fetal heart ultrasound scans.  My biggest concern is the baby's heart.  Everything else seems to be irrelevant if the heart won't work so let's start from there.

January 25, 2013

From the internet:

There is also a condition called CPM - Confined Placental Mosaicism where the placenta has the chromosomal abnormality and the baby is fine.  There is a woman who found out at 20 weeks that her baby had enlarged kidneys.  The MaterniT21 test came back positive for Trisomy 13.  She had an amniocentesis that said her baby was fine. She was due to deliver a few weeks ago. 

That could happen to me right?  I could be that one in a million women who gets a positive result from this so-called foolproof test and it's just something wrong with my placenta.

February 1, 2013

The baby hasn't kicked me more than twice in two days.  That's what the doctors have told me to look for to determine how the baby is doing.

If there is a death in utero, the baby will not deliver spontaneously.  I will have to go see if there is a heartbeat at the doctor's office, then over to the hospital for an ultrasound to be sure there's no heartbeat and then labor would be induced.  Unless there is a normal, pregnancy-related cause for a C-section, I will have to deliver the baby like any other pregnancy.  We are already well beyond the point of bleeding and cramps.

On the way to the OB's office, I'm scheduling everything in my mind.  Okay, if I have to go get induced tonight, the person who will be taking care of my son is available and I'll probably be in the hospital all weekend.  I'll tell my professors what's going on and I might even finish out this semester at university.

Clearly, I was already numb from a month of counting kicks and monitoring movement and researching what could go wrong.  I had no pictures of the baby and everything was unknown except for a too-early ultrasound that showed most everything was wrong.

My OB found the heart beating just fine.  The heart rate was a little slower than it had been but it's still strong.  We're doing okay.  Just get through the weekend and go to the next couple of ultrasounds and see where we are.

In the meantime, I asked about CPM - Confined Placental Mosaicism.  He had never heard of it but guessed that the ultrasound in that lady's case hadn't indicated any problems and there was reason to doubt the MaterniT21 result.


Just wishful thinking I guess.

To continue reading Joe's story...