yes. let’s talk.

Once again, it’s a telecommunications giant’s day of hashtagging to promote themselves and an open discussion of mental illness…

But for one day only.

That being said, mental illness is a 24/7 365 kinda thing for those who live with it. My struggle with mental illness, particularly depression, PTSD and anxiety disorder has been ongoing since 2014. I still go for treatment and I am often told that I should:
– be grateful that a large corporation runs this campaign.
– REALLY should try to get over things.

And one person asked “what are YOU bringing to the table?”

These are people who have used the branded frame on their profile picture and reposted the hashtag many times. They’re all pretty aware folks however repeated the VERY SAME stigmatizing talk that the day is supposed to be avoiding IN THE NAME OF the day!

Let’s talk is a good first step towards ongoing conversations regarding mental health issues. It was a good first step taken in 2011 and seven years later we’re STILL ON that “good first step.”

Let’s talk raised $100 million and counting for mental health organizations, yet a 50 minute session with a counsellor still costs $160 for those without comprehensive health insurance plans.

I won’t comment that one of the organizations who benefits from this is notoriously “top heavy” with executives and has a reputation of a focus on “white collar” mental health issues while trying avoid the “messier” diagnoses.

THIS is why I seem ungrateful:
– If they truly cared the hashtag would read #letstalk without the advertising. I’m all for talking about destigmatizing mental health, however, even as a customer, I am NOT going to extend social media reach.
– This campaign treats dealing with mental health issues as a “holiday” instead of removing the stigma by forcing people to deal with Mental Health issues as I do – 365 days a year. This is why I post about my struggles – often triggering the “get over it/yourself” comment.

And it wasn’t just me – I know of other people struggling who were targeted for being critical of the campaign while sharing their experiences. These three other people have been up front and open regarding their struggles and LIVE “mental health awareness” 24/7 365.

I guess by talking and writing publicly of our struggles, we are whining and not contributing. Because we currently don’t have a bright and shiny story that ends with a “happily ever after” to suit a corporate video campaign, our struggles don’t fit the “let’s talk” paradigm.

I guess my having an inexplicably bad day where things are just “meh” or worse for absolutely no reason whatsoever doesn’t fit the “let’s talk” paradigm.

I guess by repeatedly advertising services who support mental health treatment and provide crisis intervention, working as both a social worker and lay minister doesn’t fit the “let’s talk” paradigm.

I’m not doing this to complain or to be an “inspiration,” I’m trying to get people to understand that mental illness treatment is an ongoing process that may not have a tidy ending with all loose ends neatly tied in a bow.

Dear friends, if you were truly invested in ending stigma around mental health beyond feeling good for posting/tweeting a hashtag to raise 5 cents, you would engage your friends who haven’t had their happily ever after and still struggle.

You WOULDN’T tell them to get over it. You’d be there to listen, you’d ask them if there is anything they can do and if not you’d JUST BE THERE.

Fuck. The residents in the Hundred Acre Wood accepted Eeyore, despite his chronic depression!

To instead of a hashtag, let’s share information regarding the resources.

#letstalkhamilton #nomorestigma

If you are depressed, in distress, or in crisis, call the Distress Centre.

Coast Hamilton Hamilton Crisis Line 24 hours – 905-972-8338

Barrett Centre for crisis support 905-529-7878 (24 hour crisis support phone line, 10 residential beds for 3-5 day crisis stay, DBT skills group, CAMS therapy)

Salvation Army army HOPE LINE…1-855-294-HOPE

Sacha Hamilton 24 hour support line 905-525-4162

on scary people

I think it’s finally time that I express my opinion about the clown situation happening across North America.  A lot of people know that I once worked as a clown and have studied the art of clowning for almost 30 years.  A lot of people might just think that it’s a hobby, however it’s far more than that.  I’ve worked as an entertainer since I was 13, I have performed thousands of shows in that time, entertained for people dying, people getting married and centenarians in nursing homes. The past few years (since my weight loss) I haven’t clowned as much but I still hold the art close to my heart and have taught and presented at international lectures throughout the past few year. My goal is to further the education making better clowns with new ideas and programs worldwide.

Now my opinion on what’s happening.

The current clown “thing” started with some people (mostly teenagers) dressed as clowns going up on to people’s porches and smashing pumpkins. After watching the story, at the very end the newscaster mentioned that most likely the people doing that knew the people they were messing with.

This year pranksters bumped it up a notch and the public copycats grabbed it and ran with it.

However a LOT of the reports have been proven to be either unsubstantiated for lack of evidence or outright hoaxes perpetrated by teenagers or young adults wanting attention.

This current escalation and media attention is troubling to me. As media attention grows, many legitimate professional entertainers are being harassed or outright threatened by the “dog whistle” alarms in these media reports. It frightens me that people I know and respect are now potentially being placed in danger because people are concerned for their safety against pranksters.

To a lot of people this is not a problem at all and possibly even a celebration. This is a problem, because first it’s the clowns next what?

Yesterday, a leader in the clown industry sent an email to his organization to suspend wearing makeup to any performances until further notice because of their safety. He also mentioned that any form of bullying is wrong and encourages other forms of bullying.

Clowns have been bullied for a long time. Almost every time I go out, I have somebody tell me to my face that they “hate clowns”. Now I understand that there are jobs in this world that people do that I don’t care for, however I don’t specifically walk up to them and tell them that I hate them. I keep my opinion to myself.

But honestly folks, this is pretty simple

1. If a clown approaches you with a hostile demeanor, protect yourself as you would against anybody with a hostile demeanor. Most clown training progams train clowns NOT to approach someone, however be open, friendly and approachable.

2. If you ARE a clown, consider temporarily lightening your look – use less makeup and be more “human.” I have been suspecting the days of heavy make up are ending in this country as the public is wanting less. It’s time to stop fighting that and embrace it.

3. Clowns need to learn to act as professional adults; the “clowns lives matter” is an absolute embarrassment. Clowns are not being oppressed and shot in our cars like the African-American community has been dealing with for centuries. Clowns cannot equate a few months of negative press to that experience therefore cannot and should not even try!

4. Please understand that anyone can put on a halloween mask, crappy makeup and a wig; however that really makes them a person in a costume. If someone dressed as a policeman and did this, the media and public wouldn’t say policemen were committing the acts. They would say imposters were. There’s a difference between a professional and the people now roaming the streets. They’re just sad individuals. They want people to be terrified, and unfortunately, it’s working. People that advertise as professionals are highly unlikely to be the troublemakers allegedly lurking in the woods.

5. Clowns are real people. We love people and we love kids. Most of us want to provide happy memories, and it saddens me that people running in the streets would stain the idea of what a clown should be. Professional clowns are not only trained, but the government requires them to do background checks before jobs, particularly those involving direct contact with children.

6. If you hate clowns or they scare you, that’s perfectly okay but clowns really don’t want to hear that. It doesn’t give any pleasure to somebody to hear another person tell them that they are hated and honestly it gets old FAST. Please keep your opinion to yourself and announcing it loudly to the public is kind of a douchey thing if it’s at a public event where it’s known entertainers are going to be. If your fears are affecting your ability to perform activities of daily living, perhaps you should get them checked out by professional help too, being afraid of a person wearing makeup and a costume, which essentially is their work uniform is NOT healthy or a normal psychological response…

the phone call and aftermath

On the evening of August 9, 2013 I didn’t sleep at all. Sunny had completely collapsed onto the bed, exhausted and Chloe fussed about between him and I, not knowing who needed more comfort.

I lay awake in bed and read until 11:30 pm. Then I lay awake in the dark.

At 12:09 am, the radio on Larry’s side of the bed came on, loudly.

At 12:14 am, the phone on my side of the bed rang. I answered the phone call that permanently changed my life forever.

“Hi, it’s the nurse. I just checked on Larry and he is gone. I’ve called the doctor and figured you want to spend time with him.”

I hung up the phone and got out of bed, called the taxi company and got dressed. I let the dogs out for a bio break and grabbed a duffel bag. From my cell phone I called Larry’s ex wife and my parents.

I sat in the cab, numb, and wept quietly, wondering about my future. Thankfully the driver seemed to understand why I was in a rush to get to the hospital at that time of night and kept the chatter to a minimum. I suppose my eyes were red and puffy by that time and it was obvious that I was upset and not willing to speak.

Larry’s room was empty, the light over his bed was on. I went in and his body looked so peaceful and quiet. Not in any pain.

Sadly my pain was continuing.

I sat quietly for a while until the nurse came in to check on me and confirm that the doctor was coming to pronounce him dead. I began to gather his personal effects:
– slippers
– glasses
– pentacle
– the final Sookie Stackhouse book, which I read to him while he convalesced so he knew how the saga ended (because of this, I can’t watch True Blood any more – the ending was a disappointment and I have too many unhappy memories now)
– the flowers that Bekah and her boys gave Larry
– the gift that Larry gave his daughter on his deathbed, but she left (still super pissed about this – I finally gave up on trying to give it to her in April and donated it to someone who would use it)

As I finished up, I took the final picture of our hands together one last time. And then the doctor came, I introduced myself, thanked the doctor for doing this task and called Leslie and Jeff to pick me up. I needed folks who could help my spirit and they have and remain there as I work things out.

I came home to an empty house with an empty heart and sat on the couch with Sunny and Chloe for a few hours, finally posting the announcement. I went to bed out of exhaustion, unable to cry any more.

That morning, I got up at my normal time. Did my morning ritual and went out to the farmer’s market to have my morning coffee at “Cafe Gay.” Ironically, I had a funeral to sing at that morning.

Chris Godwaldt, having read the news hugged me and asked me “What are you doing here today?”

My reply was I had no where else to be. This was the truth, I no longer had to be at the hospital daily and quite honestly, home felt really empty at this point.

I sat quietly, having coffee with friends, until it was time for the funeral. I sang dutifully at the funeral, no one in the choir having suspected what I was going through, and found a great amount of satisfaction in allowing myself to grieve while helping others grieve.

I had arranged to meet my parents at Cannon Coffee Co after church, where I sat in the window seat and just was there, quiet and peaceful. My parents joined me for lunch and remembrance while various folks who saw me sitting there popped their heads in to offer their condolences.

I went home and walked the dogs and fell into a fitful and restful sleep for the first time in about a month, despite the uncertainty of my future.

who am i to deny a dying man his last wish?

Since being checked into the hospital, Larry was on a rapid decline as far as his condition. His kidneys and pancreas had completely shut down prior to entering his hospital and his lungs were under attack as cancer cells replaced healthy tissue. The main thing that lead to his final decline was his liver had completely shut down.

What happens when one goes into liver failure is the blood is no longer filtered and the body floods with all the toxins that would normally be cleaned. One of the earliest signs of liver failure is confusion and lack of ability to communicate. By this time, the best treatment for liver failure (the laxative lactulose) was no longer working and it was determined to keep him comfortable and take no drastic measures to prolong his suffering.

At this point, all that was left of Larry was instinct and the pain as cancer ravaged his internal organs. As his liver was no longer processing his blood, intravenous pain medication no longer would work, so he was on a regime of three medications administered under his skin in 20 minute intervals: a sedative to relax him, morphine to ease his pain, and a muscle relaxant to prevent him from fighting the catheter and the restraints and prevent further injury. These injections occurred around the clock to prevent his suffering and I thank the doctor and staff of Juravinski Surgical Ward in ensuring that he was well taken care of.

The last coherent conversation with Larry confirmed that he was ready to let go and we asked him to, however he kept saying he was afraid and wanted to say goodbye one last time. When asked who he wanted to say goodbye, he could never explain fully. However I suspected who it was.

As I left the hospital to take care of the dogs, I ran into the palliative care doctor and he said the first words he said to me since he told me “seven to ten days.” This isn’t a complaint as the doctor did most of his work through gesture and facial expression – which I found incredibly helpful. There is little that can be said to a dying man and the family who is processing their pain and grief as they watch their loved one fade away. What he asked me was “Is there any more I can do at this time?”

Yes, there was.

During the entire time Larry was in the hospital, I was working with the nurses and social worker in getting permission to bring the dogs in for one last time and I was constantly running into roadblocks, despite bringing in immunization and medical records. Finally I asked the doctor whether it were possible to bring in at least one of the dogs to have one last visit with Larry.

He was with the charge nurse and his flock of interns at this time and his response was quick: “Who am I to deny a dying man his last wish.” He turned to the nurse and confirmed that all staff were to be in a meeting with him at 7pm that evening and turned to me and said, what happens between 7:00 and 7:30 that evening was up to me. Point taken.

I swallowed the lump in my throat and rushed home to confirm my ride up to the hospital to be there just at 7pm. Thankfully, incredible neighbours Jeff and Michele were on the case and I was able to arrange for a drop off and pick up 30 minutes later. I had purchased a simple carry duffel for Sunny and prepared him to go in it, I put his towel in the bottom of it and he seemed to understand what it was for. I did my chores around the house

At 6:45 Jeff and Michele honked their horns and I convinced Sunny to get in the carry bag, while keeping the zipper opened so he could see. Sunny knew that something big was up and he actually settled down and relaxed. When we got to the hospital, I tucked Sunny’s head in the case and proceded to lug this bag with 16 lbs of Sunny over my shoulder, trying to be as low key as possible as we walked to the elevator. We got on the elevator and made our way to Larry’s room, I pulled the curtains tight as I announced myself to Larry.

I said to Larry quietly that I had someone special to see him and he opened his eyes. I put the case on the bed and opened the zipper. Sunny cautiously stuck his head out and Larry’s eyes widened when he saw him. Larry moved his right arm away from his body and Sunny cautiously got out of the bag and sniffed around, carefully creeping up the side of the bed and lying down to rest with his head on Larry’s shoulder and chest.

“Hi Sunny,” Larry moved his left hand across his body and laid it to rest on Sunny’s back. No mean feat as Larry had been non responsive beyond reflexes for over a day at this point. We sat quietly as Larry and Sunny had what was likely to be one final snuggle. I sat in silence watching them together until twenty minutes passed and Sunny began to visibly shake and whimper.

I told Larry that we really needed to go as Sunny was getting nervous and we had to be out of there by 7:30. Larry moved his left hand off Sunny and said “Goodbye Myke. Goodbye Sunny. I love you, thank you” and went back to sleep. I put Sunny back in the bag, zipped it up and kissed my husband goodbye one final time.

Jeff and Michele were at the entrance when we came down and drove us home. I walked Sunny and Chloe as I was too uneasy and didn’t want to be in the house. Finally at 10pm I collapsed in a heap on my bed and went into a troubled rest.

it takes a village…

Over the coming days, I settled into an uneasy pattern of visiting Larry at the hospital.

During this time, I was incredibly amazed at the incredible support we received as we prepared for his final journey.

Leslie Cabot Armstrong and Jeff Cabot Sutton – Wiccan priestess and priest who exemplify “harm ye none” and what it means to live up to the Wiccan Rede. They helped handle Larry’s spiritual needs and were there to support my more esoteric needs as well. As friends, as clergy, as human beings. I consider Leslie and Jeff among my best friends.

Rev. Doug Moore – Laidlaw Memorial United Church – a truly human “Man of the Cloth” who also helped handle Larry’s spiritual needs and support my spiritual needs as well. Doug has been an incredible mentor and guide as I muddle through life and navigate a new calling.

Santa Bob Boyter – Bob was perhaps Larry’s best friend in latter years. Always willing to help out, even if it was just to listen. Since Larry’s passing, he has taken the reigns of Santa Canada and put it in the hands of someone with the knowledge and patience to ensure it thrives. I owe Bob a lot.

Bekah Kristensen – another good friend who was always willing to take Larry for rides in the country or go for a Costco run. With her two boys, Bekah also gave Larry the chance to be a grandfather when his own daughter wouldn’t. She and her family often gave Larry a reason to keep going when little else could.

Ellen Irvine – Larry’s seamstress and good friend. There to keep him company and listen/support him.

Cheryl Lantz – yup, Larry’s ex wife. We tag teamed the hospital time to ensure that Larry was surrounded by those who loved him in his final moments. She didn’t have to, but she really came through – especially when it came to getting his daughter up to visit .

Doug Jones – my best friend since grade 4. I can always count on Doug, especially when the excrement makes contact with the ventilation. We’ve shared pretty much every emotion in the book and last summer definitely ensured that .

My parents – wow! What can I say but thanks? Throughout the entire journey Mom and Dad were there for Larry and I.

My brother, sister-in-law and nieces. Stephen, Dana and girls were awesome, I know I can rely on them for support. I’m proud of Lauren for realizing that she wasn’t ready to handle being so close to illness and death. Hannah, I’m especially proud of as she visited Larry and was strong enough to know when she had enough. The conversation we had in the Starbucks was incredible and helped me greatly.

I’m honoured to have these people in my life and look forward in our further journeys together .

endgame begins.

Since Larry’s birthday, things had been getting worse for him and the home care nurse had been visiting regularly and I’d been trying my best in focusing at work.

It was clear that we were nearing endgame. Larry’s kidneys were gone, he was in acute liver failure and the treatment was becoming less and less effective.

Rev. Moore had visited several times as had my family and friends. I don’t know what was harder to watch, my husband failing and fading away or witnessing the reactions of our loved ones realizing that this was IT. This was the big one.

On July 29, 2013 the lactulose stopped working altogether and Larry was entering acute liver failure. He was unable to walk, unable to answer simple questions and all sense of “him” was slipping away.

I called Avi, the palliative care nurse, to ask what to do and was told that I could either call 911 myself or wait 45 minutes and he could.

I dialled 911 and a good friend and neighbour answered the line “Hi Myke, it’s Larry isn’t it?”

I was in tears and unable to speak but somehow conveyed “yes,” Joe confirmed he would send the paramedics, however the fire department would most likely arrive first.

While I don’t want to disrespect our fire department, Larry did not need their help, he needed to go to the hospital so I held them off with the magic words “end stage liver failure due to hepatitis, needs a transfer to the hospital.”

They retreated immediately and went to get their hazmat gear while the paramedics arrived. I explained the situation and suggested they get the chair as Larry was no longer able to walk, let alone handle stairs and the stretcher would not work.

They did so and as Sunny, Chloe and I quietly watched in shock, they escorted my husband from our home for the past 13 years for the final time. I was beyond tears at this point and just frightened and confused.

The paramedics confirmed that they were taking Larry to Juravinski for cancer care consideration, we had hoped that we may eke out a few more weeks or months in hospice with the right treatment at that point still.

Incredible neighbours Michele and Jeff didn’t hesitate and drove me up to the hospital behind the ambulance. Where I spent a sleepless night by my husband’s side in the ER until they sent me home at Larry’s insistence, exhausted.

happy birthday hon!

One year ago this date, Larry and I embarked on our last public “date” as a couple.

Due to his rapid decline in health and mobility, the palliative care team from the Community Care Access Center (CCAC) had been engaged and he was getting regular visits from the nurse and support worker while I was able to maintain a (somewhat) normal schedule at work.

By this time, his kidneys had completely failed and his legs were swollen with edema to the point he couldn’t walk. Courtesy of Rev. Moore (thanks Doug!) at Laidlaw Memorial United Church, we had borrowed a wheelchair and we were able to get around town using the bus, patience and brute strength on my part. He was also starting the earliest phase of end stage liver failure, which starts to show as periods of fatigue and confusion as the body drowns in the toxins the liver no longer clears from the blood stream (hepatic encephalopathy) and we had started the only treatment for this condition – a strong laxitive called lactulose.

Larry didn’t feel like going out often as he was getting weaker as the cancer consumed his body, his strength and his will, but he wanted to go out for his birthday.

He was not able to tolerate most solid foods and we had him on a very soft diet including Ensure shakes to keep him in protein and calories. However it was his birthday and he wanted a treat (despite how crummy we both felt) and to also get him out of the house. When asked where he wanted to go he answered with one word: Cannon.

We got him out of bed and down the stairs (by this time, he was so weak that we needed to put a chair on the landing for him to rest 10-15 minutes prior to taking the next series of steps. Getting him from the bedroom to the wheelchair at the bottom of our front porch steps was now a process that took nearly 45 minutes and a heck of a lot of patience on my part. Going out with someone who was in kidney failure and end stage liver failure meant that one also had to have a change of clothes or two, so taking Larry out was no mean feat.

I would then tuck him in and cover him up with the polar fleece blanket and slowly walk him the three blocks to Cannon street, where we waited for the bus. We got off at Ottawa St. and took him to the back entrance of the Cannon Coffee Company where I could get him in unemcumbered by the step at the main entrance. What would have normally been a 20 minute walk from our house to the Cannon, was a nearly two hour ordeal.

We were able to tuck Larry and his wheelchair into one of our regular tables and I placed our order, he napped while we waited for our food and coffee order, while I read. I was getting exhausted as well as the Lactulose usually meant a washroom trip and I didn’t know how I’d manage at the Cannon, should he have a call of nature.

I requested our coffees in “to go” cups and my food in a take out container, just in case, Larry just wanted a muffin top. When his food arrived, I woke him up and picked at the muffin top and had a few sips of coffee. At this time, I could see what little colour he had in his face draining, so I packed our stuff away and got ourselves to the bus stop to head home. Larry dozed the entire way.

So 2 hours to get to the Cannon, 1 hour to get back home, 30 minutes to get Larry upstairs and tucked into bed with the help of a neighbour and the homecare nurse, just so we could have a 15 minute chance at a normal life at Larry’s favourite cafe on his birthday.

I’d do it all over again. In an instant. Happy birthday Larry. I’ll have a coffee for you at the Cannon tonight!