“So, the doctor has told you that you’ll need a kidney transplant.”

The young resident was so nonchalant in her statement, her smile so kind, that I simply didn’t know how to react.

“Uh, no. He didn’t. You’re the first person to mention this.”

Her smile faded. She looked at me, looked back at the computer screen, and said, “I’ll go get the doctor.”

The resident stood up, walked past me, and left the examining room.

As I sat there staring at the computer, trying to make sense of the graphs in front of me, I tried to absorb the words I had just heard. “You’ll need a kidney transplant.”

It all seemed surreal.

In 1993, when I was pregnant with my first child, while undergoing a routine ultrasound, the technician said, “Oh my, you have cysts in your kidneys!” There were about 10 tiny cysts in total.

No one seemed too concerned about it.

In 1998, when my daughter had a urinary tract infection (rather rare for a child of four), I happened to mention to the doctor that I had cysts in my kidneys. Suddenly there was interest. My daughter was sent for an ultrasound and — lo and behold — they found cysts in her kidneys. She then became a patient of the Nephrology Clinic at the Children’s Hospital. I was then referred to a nephrologist at the Royal Victoria Hospital and was followed by her until her retirement.

In 2001, I was sent for genetic counselling and it was determined that my daughter and I both had PKD — polycystic kidney disease. In our case, it is Autosomal Dominant PKD, which means that I, as the parent, have passed it on to my daughter. There are two major peaks when symptoms are usually diagnosed; age 30 and age 60. I was 30 when they found those cysts.

In 2001, my youngest daughter, then only seventeen months old, was not tested. We were told to keep an eye on her as she aged and to be certain that she too would need to have an abdominal ultrasound. Thankfully, her recent abdominal ultrasound has not shown any cysts.

As it was explained to us in 2001, we had the “good kind” of PKD. It was not the kind that affected infants at birth, and we would be able to live a long life, and to basically, “carry on”. So we did.

Fast forward twenty plus years. There have been several operations over the decades, with a series of abdominal ultrasounds as part of the process. Each report from a radiologist had a comment that said, “…patient presents with numerous cysts in the kidneys consistent with polycystic kidney disease”.

No one seemed too concerned about it.

My GP announced his retirement in the spring of 2021 and I asked him for a series of tests so that I would have a baseline of results to bring with me to a new doctor.

June 2021: “The liver contains multiple cysts measuring up to 4 mm in size….Both kidneys are enlarged, the right measures 18 cm and the left measures 15 cm. Both contain multiple cortical cysts measuring up to 5 cm….Enlarged kidneys containing multiple cysts consistent in appearance with polycystic kidney disease.”

Suddenly, someone seemed concerned.

September 2021: I was sitting in my Nephrologist’s office. A brain MRI was needed (PKD can cause blood clots in the brain), another CT scan of my kidneys was needed. My doctor was calm, reassuring, and very thorough in explaining how the disease could progress. My high blood pressure (despite having lost forty pounds) was not due to stress but due to my kidney disease. I was put on medication. He told me that we would meet again after the tests were complete. I went home concerned, but relieved that I was now “in the system.”

The resident returned to the examining room with the doctor.

The good news was that the brain MRI showed no sign of any clots. The not so great news was that my kidneys were enlarged by 80%. That would explain the back pain that I had been experiencing. My kidneys were functioning at 40%. The growth of the cysts would never stop. And, yes, within eight to ten years, I would need a kidney transplant. Sure, dialysis might work for a while, but, ultimately, my kidneys would be a mass of cysts and would simply fail. Stop working.

We discussed a new drug that I could take that would slow down the production of the hormone that makes the cysts. Everything from that point on really seemed a blur. I filled in reams of paperwork, left his office with a booklet about the drug, and walked out of the hospital. I don’t remember driving home but I do recall collapsing on the kitchen floor when I gave my husband the news. I just sat there, leaning against the fridge and sobbed. I was scared, and I felt helpless. That was November 30, 2021.

The drug, I had been told, if not covered by our insurance, would need to be approved by the Quebec government’s medicare system or else we would have to pay $36,000 a year for it. Six months of back and forth with our group insurance, the drug company, and the RAMQ, and it was finally approved by the government. I started taking Jinarc in May 2022.

If you’ve ever wondered what it feels like to be thirsty all the time, just ask me. This medication has changed my lifestyle. It causes the patient to FEEL thirsty and causes one to drink copious amounts of water. I average 5 to 6 litres of water a day. I carry my water bottle everywhere. I measure what I consume. Ice water, tap water, hot water. And, yes, what goes in, must come out. I plan my outings very carefully.

Has my diet changed? Not really. There is a diet that is recommended by the Kidney Foundation of Canada but fortunately, I was already following it when given the seriousness of my condition in November. I eat a mostly vegetarian diet, I haven’t had alcohol in over twenty years, I don’t smoke, I don’t cook with salt, and I exercise regularly.

What has changed? My vision for the next stage of my life. I never imagined that at the young age of 68 or so, I would be looking for a kidney donor. I never imagined that I would be on dialysis. I never thought that I would be hooked up to a machine that would be filtering my blood. I thought that I had the “good kind” of kidney disease.

Here’s the thing. There is no good kind of kidney disease. “Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases, affecting approximately 1 in 400 to 1 in 1,000 people.”

September 4 is #PKDAwarenessday.

Sign your donor card. Investigate living donor programs. Take the time to learn more about a disease that affects 66,000 Canadians. I am one of them. #endPKD

Attics can be scary places.

In the movies, they are often filled with cobwebs. The broken windows give bats free access to scare the poor children who are hiding from a faceless ghost. Other attics are melancholic, dimly lit. A trunk sits in the corner as an elderly couple opens it, taking out memorabilia, reminiscing about days gone by as they prepare to sell the family home.

Our attic has no windows or bats. It does have an empty trunk in the far corner that came with the house, boxes of holiday decorations, suitcases, and folding chairs and square tables from the bridge games that the previous homeowners used to host. And, there is a ghost.

This ghost has been with me since 1976. It has followed me from home to home. It moved into our attic when we bought this house in 2000. Prior to that, the ghost lived under my bed, in my bedroom closet, and in the bottom of a steamer trunk that served as a coffee table. You can either be haunted by ghosts or confront them head on. The choice is yours. I recently decided to confront mine.

“Dear Parent,

Every girl is a special girl with her own particular personality; her own special needs and desires. Each is growing up towards the fulfillment of a happy, successful future. For a young teenager to be burdened with the problem of weight in these most important years is indeed a serious handicap.

The overweight girl is often unhappy. Haphazard, on-again, off-again diets and the resultant frustrations are likely to make the young girl think her weight problem is hopeless. Unless preventive measures are taken in time, her mental, physical and psychosocial health may eventually be threatened.

Concentrated efforts to correct the condition should be made while she is young, before her problem becomes serious. At Camp Stanley, your daughter can enjoy a happy, wholesome, carefree good time for 8 wonderful weeks while losing an average of 20 to 45 pounds. She will find it great fun to join in weight reducing activities with other girls her own age, who have the same problem.

…the greatest joy will be the new confidence of a happy girl glowing with the radiance that comes from within.

Sincerely,

Gussie Mason”

Sign. Me. Up.

In the winter of 1976, during my first year of high school, I found the ad for Camp Stanley in the back of my Seventeen Magazine. I was miserable. I had attended public school for my elementary years but my parents switched me to an all-girls private school in the fall of 1975. It was there that I was smacked in the face with the meanness and ostracization that comes with being “the fat kid”.

I was befriended by teachers and two or three classmates. Fitting in was not easy. It was an awkward situation. We newbies joined a group of girls who had moved up through the private elementary school together. We had to work hard to fit in.

The gym shorts sold by the official supplier were not available in my size. Mine were custom made for me by a seamstress. So, not only was I one of the last to be chosen when the class was divided into teams for sports, I didn’t look like the other girls either.

My pediatrician wrote a note to the school administration so that I would be seated at the “diet table” in the cafeteria at lunch. We picked at cottage cheese and lettuce while the rest of the girls devoured soup and a hot meal. Looking back, we were probably the lucky ones — we avoided the shepherd’s pie — but at the time, sitting at a “special” table made me feel anything but.

“Who can be self-conscious when everybody’s in the same boat? That is perhaps the greatest single advantage of our slim-down camp. No need to worry about “I look too fat in shorts” or “I’m too clumsy to dance”. Self-consciousness disappears and day after day sturdy self-confidence takes its place.”

Sign. Me. Up. NOW.

I learned a lot that summer at Camp Stanley. Eight weeks away from home living in a cabin with nine other girls, three counselors, and all the drama that comes along with it was eye opening. I was serious about my commitment to losing weight, and I was shocked that a camper across the hall had asked her parents to mail her Mars bars! They were confiscated by the counselors when she opened the package.

I knew the cost of the camp. I understood the value of money. These eight weeks in the “pollen free Catskill Mountains” cost more than a year at my private school. I wasn’t going to waste my time.

I won Camper of the Year for Division 5, I learned how to fence, I dutifully jogged from activity-to-activity just like photos in the brochure. I wrote in my journal about my commitment to continue to lose weight when I got home. I drank my Alba 66 and 77 (diet chocolate drinks that were eventually pulled from the market) and I chewed my diet gum and sucked on hard candy both loaded with sorbitol. At the end of the season, I had lost 35 pounds and my Wrangler bell-bottom jeans simply fell off.

The return to school in September reaffirmed who my true friends were. Girls who had shunned me in my first year were suddenly talking to me. I wasn’t picked last in gym class. I was invited to Halloween parties. I went to a high school dance with a friend from elementary school and wore NEW bell bottom jeans in a much smaller size. I got my ears pierced. Something had changed.

“…smaller sizes, loss of pounds and inches, better posture tell the happy story. Our new girl is delighted with herself. Dramatic proof of her success is the end-of-camp photograph placed next to the beginning of camp photograph.”

I didn’t need to carry around the photograph because I was the living proof. I could see it in the mirror. I could see it in my old clothes. I felt it inside. I would try on my Wrangler jeans time and time again as if to remind myself that I would NEVER EVER be that girl again.

I eventually packed away the Wranglers. They became a symbol of accomplishment. A reminder that I was once THAT big! Through my teen years, I would occasionally pull them out to make sure that they still slid down easily — to assure myself that I wasn’t sliding backwards.

How many people do you know who want to fit into clothing that they owned when they were thirteen years old? It’s ridiculous. I realize that. But, I couldn’t get rid of the jeans. The memory of how they used to fit pre-camp haunted me.

Life happens.

1984: Met a boy. Started dating. Lost weight. Confided in him my tale about “Fussy Gussie’s Fat Farm” and showed him the jeans. Too big!

1990: Marriage. Joined Weight Watchers pre-wedding. Lost weight. Jeans are too big!

1993: Pregnant with my first child. Jeans won’t even do up. Thank goodness!

1997: Daughter’s third birthday. Jeans are big again!

1999: Second pregnancy. Bed rest. Jeans? What jeans?

2000: Birth of my second child. Nervous breakdown. You want me to get dressed?

2003: Second nervous breakdown. You want me to get out of bed?

2005: Diagnosis of bipolar disorder. New meds. Who cares, what’s another 60 pounds?!

The jeans fell to the bottom of the pile and my priorities shifted. I completely forgot about them until one day several years ago when I went to try them on and they didn’t fit. As in, they didn’t even zip up. I was shocked. I shouldn’t have been. I knew that I weighed more than I did when I had started at Camp Stanley so logically the jeans wouldn’t fit. BUT they had always SEEMED so damn big! They represented a time in my life when I felt so small and insignificant as a person and yet so huge and ugly. Each time I held up those jeans they looked massive. Their wide legs looked as if two people could fit inside. The memories of shopping for them would come flooding back. In my mind, they were the biggest size of pants available at the store and I had to buy them. I shoved them back in the bag in the attic and vowed to not think of them ever again. Impossible. Ghosts do not rest.

Looking back over the forty-six years since my summer of “permanent weight loss through re-education in eating habits, physical activity and development of new interests”, I wondered why couldn’t I let them go?

Are the jeans like the “Ghost of Christmas Past”, there to teach me a lesson? Bringing me back to my past, to remind me of the difficulties that I overcame, the true friends that I had before I lost the weight, not the ones who courted me once the jeans fell off. Perhaps the jeans remain with me to remind me that I really wasn’t so huge and ugly, but that I was merely a teenager going through changes that all adolescents must endure.

I decided to confront the ghost head on for one last time in 2021. The year seemed right. Forty-five years since camp. An anniversary of sorts. It just so happens forty-five is the “sapphire anniversary” according to the wedding website The Knot. “The deep blue color of this dazzling gem is a reflection of a couple’s deep love for each other. Nearly five decades together is quite an achievement,…” Well, the jeans aren’t quite deep blue anymore, but we do seem to have a deep love for each other.

I started losing weight when COVID-19 reared its ugly head in early 2020. I’ve continued to do so and in the early spring of 2021, I added walking to my routine thanks to a dear friend and her dog who got me out in the early mornings. I logged over 900 kilometres in ten months. Given how poorly I play, I likely walked another 100 kms on the golf course from May through September. For those of you still living in miles, that’s about 620 miles in 2021.

July 2021: Jeans are out of the attic and in my closet. Not even close to zipping up.

September 2021: Button does up. Who needs a zipper anyways?

October 2021: Zipper and button do up. Breathing is highly overrated. Can’t sit down.

December 2021: Jeans zip up! Button does up! Breathing is relaxed. Look, a chair!

Am I the same weight as when I LEFT camp in August 1976 at the age of 13? Nope. I will likely never see that number again.

Am I the same weight as when I STARTED camp eight weeks earlier at age 12? Nope. I don’t really care.

I weigh five pounds more than I did when I was an unhappy, unhealthy 12-year old child. How absurd is that?! I’m active. I’m healthy. I eat a balanced diet and I’m taking care of my mental health. The thing is this: I discovered, on my own, that it wasn’t the weight that was holding me back. It was my own ghosts. So I opened the attic door, and I let them out.

…the greatest joy will be the new confidence of a happy girl glowing with the radiance that comes from within.

In 1973, when I was ten, I convinced my mum to buy me a guitar at the church rummage sale. It likely cost no more than five dollars — if that. I thought it was beautiful. It was an acoustic guitar, black with brown burnished details and a white pickguard that provided just the right amount of contrast. The strings were all broken and there was a hairline crack along the side, but I was convinced that it would be the instrument for me. We then had to purchase a soft sided case for it, new strings, pay for tuning, and of course, guitar lessons. Did I mention that I couldn’t read music?

I took lessons around the corner from our apartment building once a week in the music store that doubled as a hippy hangout. It was the 70s after all. The smell of incense was overpowering but I thought I was so cool to be learning guitar and wearing bell bottoms. I never really thought about the fact that I would have to practice. Practice? Put some effort into learning how to play this instrument? I think the lessons lasted about three or four months until my father declared that I had nothing to show for the investment and that the five-dollar guitar had been a waste of time and money.

I had no discipline. I didn’t understand that if I wanted to play the guitar it would require commitment both of mind and body. I didn’t like the way my fingers hurt from pressing on the steel strings and I certainly didn’t like sitting in my room trying to create chords. I wanted to play! What were these dumb black blobs sitting on lines that I had to decipher? Where were the songs I expected to be strumming? How come I couldn’t just sit down and play “Delta Dawn” or “Leaving on a Jet Plane”? I gave up.

My great aunt died when I was eleven leaving me with her double keyboard electric organ. The keys lit up from beneath, it had foot pedals and two rows of knobs and buttons that allowed it to sound like anything from a jazz guitar to steel drums. When I spent weekends with her at her apartment, I used to perch on the music bench and pretend that I was playing for a big audience. I could easily use the music books that came with it because they had letters above the black blobs that matched the light up keys. I could “read” music.

Once the organ was moved into my bedroom, I convinced my parents that the keyboard would be different. I would practice. I would learn to read music. Back around the corner. My piano teacher spent a great deal of time teaching me that “All Cows Eat Grass” and that “Good Boys Deserve Fudge Always.” I would go home and transpose the blobs into letters so that I could memorize my homework with the lights of the keyboard. Unfortunately, there were no lights on the piano around the corner when I returned the next week. “Start at D Marilyn and continue from there.” I was lost. The organ stayed in my room until it was passed along to my younger cousin. It did serve as an excellent clothes rack for most of my teenage years.

We have three guitars in our basement. Remnants from days when our youngest daughter and my husband attempted father-daughter guitar lessons fifteen years ago. Don’t ask what I paid for the electric guitar that I bought him. It didn’t even come with a case. I was so enamoured with the fact that he mentioned he might want to learn how to play that I forked over the cash with the biggest smile on my face to a man with an even bigger smile. The lessons lasted a season. Father and daughter now share a love of quirky videos, a great sense of humour and excellent taste in music. The guitars look really cool on their stands.

When COVID hit in March 2020 and we were in lock-down, our oldest daughter and our son-in-law moved in with us for two months. I asked him to bring his guitar so that he could teach me how to play. He is a fabulous musician and I reasoned that being cooped up in the same house with nothing to do would be the best time to take up the guitar again. I hauled up an acoustic guitar from the basement, he tuned it, set me up in the den and began the lesson. I lasted two, maybe three days. My hands hurt, my old brain could not decipher the blobs on the page, and it did not bring me joy. I gave up.

I hadn’t thought much about guitars or music or dedication to acquiring a new skill until a post appeared on Instagram in June 2021. Woven into the post were the words “Picked up the guitar a few years ago and leaving here some modest proof that old dogs can learn new tricks.” I clicked on the accompanying video and was mesmerized by the talent of a neighbour who I only knew as being a wonderful parent, as someone with great athletic ability and having a super sense of humour, but… now this! I had to know more.

I wrote to his wife to ask how long her husband had been playing the guitar. It turned out that the guitar had been a gift from her close to twenty years ago but that he had only really dedicated himself to learning how to play within the last five years. Since then, he had also acquired an electric guitar and was also sharing his riffs on Instagram. I listened to him sing along with his guitar several times that night. I clicked on his “Riffrences” and appreciated his growth and perseverance over the 126 weeks of video clips that had accumulated. I have since learned that he taught himself to skate at a later age — and he skates incredibly well. He finds something that he wants to do, hones in on it, and accomplishes it. I wondered what lived within him that wasn’t inside me.

I thought of how his actions have influenced his children — likely through osmosis. His two sons practice their sports tirelessly outside of their house. Whether it’s slapshots on the backyard rink in the winter, shooting hoops in the warmer weather, or throwing a baseball or football in the summer, his boys are constantly improving their skills. Do they expect to be professional athletes? Likely not. Does their dedication bring them joy? I guarantee it.

I have been thinking about my neighbour and the words to the song that he was singing in that Instagram post four months ago. Written by Tom Petty, performed by Rod Stewart, it’s poignant, sad, and so much can be read into it. But one part of it hit home for me.

“So, leave Virginia alone
Leave Virginia alone
She’s not like you and me”

I’ll never play the guitar. I likely won’t be fabulous at any one thing. But I am inspired by those who have the dedication and determination to do so. Left to my own devices, I will continue to plug along, hone my modest skills at writing, and in that I find my joy.

Thank Goodness for Facebook

I have always been very good at remembering birthdays. I can relate them to other events surrounding them, seasons of the year, and even what I was wearing when I learned that a younger cousin was welcomed to the family. Birthdays are usually happy events (unless there is a clown at the party, or someone yelling “I’m the birthday girl, or a drunk uncle…..I digress).

Dates of death, are different. I knew them for clients when I settled estates over thirty years ago. Of course, I was typing the “DoD” as we referred to it, on government forms over and over, day after day. There were no computers to make the job easier with shortcuts like “Apple C, Apple V”. The date of death of an estate was impersonal; it was simply part of the file. It was like sheet music; “06/09/89”.

My father died ten years ago. It was Facebook that reminded me and the connection was that my daughter graduated high school ten years ago in June 2011. He died the week of her prom. It was a terribly sad time, but he was ready to die. He’d had it. He was sick, he was in the hospital, he was in pain and he was on a morphine drip. We had said our goodbyes and we were very pragmatic in the days leading up to his death. Don’t get me wrong, as an only child and someone extremely close to her dad, I was sad to lose him but relieved that his suffering was over. I’m never quite sure of the exact date in June, but I remember what he said the night before he died as we left his room; “Tomorrow is the longest day of the year, right?” I replied that it was indeed. “Well, it’s all downhill from there,” he said as we walked out the door. He hated darkness and always considered that once the Summer Solstice was over, winter was on the way and that was the end of the light and warmth. Sometimes, I remember he died on June 21, other times I don’t even think about it. I do remember how much he loved the summer and how much I loved him.

I totally mix up the date that my mother died although I was with her as she took her last breath. I know that it was around 5 am on a Saturday morning in December. The problem is that it was either the 16 or 17 and the year was either 2016 or 2017. I have to really sit and think about it. “Ah, yes, I was working and my youngest daughter was in Grade 11. That makes it December 2016, so she died on the 17th.” My mother and I were so very close during the years after my dad died. She missed him so much, but I told her that his gift to us was allowing us time together. She moved into the house next door to ours, spent evenings watching football with her “favourite son-in-law” and joined the seniors club in our neighbourhood. She too was calm and accepting of death. The cancer had spread throughout her body and the pain was unbearable. Slipping off her wedding bands as she lay dying was not something that I had ever thought I would need to do, but I had to. Holding her hand as she died, cleaning her face as she coughed, wiping her brow, were all part of being her daughter. I don’t need to know the date. I know the love.

My father-in-law died one year ago yesterday. I had no idea that it was the anniversary of this death. I was reminded by a post on Facebook. He had been living in a long-term care facility and receiving excellent care throughout the pandemic but, unlike my parents, he did not have an easy death.

Eighteen months prior to his death, he was hospitalized for congestive heart failure. While I was with him in the emergency room over the course of the two days waiting for him to be admitted, we had the opportunity to have some serious conversations about death. He asked what my mum went through when she died. I told him that she went peacefully, that she was ready to die, and that she wasn’t scared. He asked about his mother-in-law who died nearly thirty-five years earlier. His son and I had been at her bedside. She too, had basically slept into death. He confided to me that he was scared. He wasn’t sure that he would be going to Heaven.

It was interesting conversation. An eighty-eight year-old lapsed Catholic talking to a fifty-six year-old Atheist about the “hereafter”. I knew very well why he was scared. I had known for thirty-six years. There had been many long talks at the kitchen counter with my mother-in-law the first summer I met her. He was probably aware that I knew. Standing in the emergency room, looking at him so helpless and scared, it fell to me to assure him that death would not be fire and brimstone. I did my best. I was very kind.

He rallied from that stay in emergency. Although he did not return to his home, he lived through the pandemic to the point where end of life plans ultimately became necessary. My husband received the call. All superfluous medications were stopped, morphine was started and the doctor said it would take about a week for him to die. He hung on for thirteen days. The expression that my husband used was, “He was scared to life to die.” I can only assume that he never forgot his transgressions and still feared the fire and brimstone.

What caught me the most off guard about yesterday wasn’t that I hadn’t remembered the date my father-in-law died, but rather I had forgotten about him altogether. In the thirty-six years I knew the man, the emotions that I felt towards him ranged from anger to pity. Genuine love or admiration had never played in the equation.

Of course, he was the father of the man I love with all my heart. Yes, he was grandfather to my daughters and he did dote on them, but only while they were young enough to not express thoughts and opinions of their own. He wasn’t a great husband. He certainly wasn’t an exemplary father to his two children. My mother-in-law died first and he expected my sister-in-law to care for him at home until the end. (As an aside, I know my mother-in-law died in April because income taxes were due and it was at the same time my husband had surgery, and my daughter was in a school play. I spoke at her funeral. She was so done with living.)

What I do remember about my father-in-law is how he treated his daughter with intellectual disabilities and insulted her when she tried to cook something, how he spoke to my daughters about their appearance and weight, and how he rarely praised his son. I recall his racist remarks while watching sports on television and how he thought he could simply smile and get away with it all.

I tried to write about my father-in-law when he was dying, just after he died, and again after his burial. I held so much anger inside me about how he had treated people, that I could barely type fast enough to get the words onto the page. Draft after draft. I couldn’t get it right. Then I forgot about the essay. Life went on. The anger subsided. I forgot about him.

And then, the Facebook reminder.

I think I will always remember those I loved. I will never forget the tender moments. I will choose to keep close to my heart the sound of their voice, the memory of my years with them. I don’t need to remember when they died.

And, for some, I don’t need to remember them at all.

#Unblocked21
“Write about your journey here today”

A writing exercise — August 31, 2021

It’s about time that I sat down and wrote again. How long has it been? I can’t just keep sitting in this damn green recliner avoiding the computer. I have stories that need to be told. When this seminar appeared on Medium, I told myself that this would be the only way that I could write again. I have writer’s block. I signed up. I added the event to my calendar. I then added it to my note book. I knew that I would have to attend and then of course I knew that I would have to participate because, after all, I am nothing if not compliant. So…here I am.

I am writing.

I am finally letting my fingers hit the keys again.

I am exhaling.

This feels good.

Holy crap, I am about to cry.

What has been holding me back?

There is so much that I want to say. Why have I been ignoring all the weekly prompts that come to me via StoryWorth? I know why!!! It’s hard work. It was a Christmas gift that was supposed to bring happiness. The perfectionist in me wants to research each question, do the gut wrenching, soul searching work to answer each prompt with the authenticity that is needed to leave the story of my life in a neat little book. A book that will be honest and tell the true story of my life. BUT….is that what it is meant to be? Maybe I could simply answer the questions as they are presented and stop trying to analyze each one. Stop digging. Just write. It’s not meant to be painful.

“Keep a memoir of the past to pass on to future generations. Discover things you never knew about your family, and grow closer together.”

Seriously? Do they supply therapy with their online check-out?

So, how did I get here? Here, today? I was tired of sitting on my ass and avoiding what I know needs to be shared. I love writing. I am pretty damn good at it — I’ve been told.

This feels so good. Time to fit it back into my daily routine. Stop hiding from the truth and stop avoiding the accolades. It’s not so bad to share a talent. Afterall, wasn’t that the advice in one of my own stories that I shared not so long ago?

“She’s such a show-off!”

“Look at her, she’s showing off.”

“She’s always showing off in front of everyone else.”

“Don’t be a show-off, dear. No one likes a show-off.”

I can hear these expressions in my head from childhood. I can’t pinpoint who said it about whom, but it was always one girl saying about another girl who was doing something that someone in the group couldn’t do. Or, it might have been someone commenting on an outfit that one girl had that perhaps the others couldn’t afford. I recall my mother reminding me that I was not to flaunt a gift from a special relative. Keep your head down. Blend in.

Kids can be mean. Girls are a tough group especially in a pack and behind your back. Whether we want to admit it or not, we have at one time or another held the bow or received the arrow of jealousy. It’s human nature.

Somehow, I always wondered why we couldn’t praise the girl who could kick the ball really far or solve every math problem when called to the board. I thought it was mean when people made fun of someone who had new clothes or a cool calculator (LED technology was so amazing!). I also wondered why I couldn’t show my friends my flower power watch received on my birthday.

With maturity comes genuine admiration, awe, and acceptance that others can do things that we might not be able to do. Others can have things that we might not ever have. And others may have worked hard for results that deserve praise not ridicule.

As I have aged and reflected on my own experiences, I have come to accept, albeit with some difficulty, that I am fairly adept at writing. I enjoy it. I work hard at it and I want to improve. I ask for help, I share my work, and I hope that by doing so I might inspire others to find an outlet for their creativity. Perhaps they may read something that I have written and find a small connection to something in their life. Perhaps they may reflect on my musings. Perhaps not.

Today, I came across a beautiful musical composition by a classmate of mine from high school days. She recently went back to the piano after thirty-nine years without one in her home and said that once she touched the keys the music flowed again. Her talent in high school appeared effortless. She could sing, play the guitar and the piano. There may have been girls who said she showed off.

I asked her if she was going to share her talents again with our group of friends and she said she didn’t want to appear to be “showing off”. Whether we are cognizant or not, the vestiges of the trials and tribulations of our youth remain with us. Lessons from our parents are ingrained and are difficult to shed.

Today, I sit with admiration for her determination to resume playing the instrument from her youth. Awe that she composed a beautiful melody that brings me joy. Acceptance that I can “show off” another woman’s talents and not feel jealous.

I hope you will take the time to listen to her music. Not for her, but for you. Realize that you too can return to a talent that you once loved; that you can take the time to practice, to hone your craft, to improve, to work at something that is meaningful to you.

Then, when you ready, flaunt it, parade it, strut it, unveil it, and show it off. Believe me, it will be worth the effort.

https://youtu.be/HRwzaId3VZU

I learned to drive a John Deere tractor when I was eight or nine years old. Spending summers on my grandparent’s farm, I used to drive the noisy, green machine up and down long rows of freshly cut hay as the old wagon and loader tagged along behind. It was heavenly. Hot summer days, not a cloud in the sky and singing at the top of my lungs in harmony with the engine. Yes, with the engine. My grandparents were on the wagon or walking alongside pitching hay. They occasionally yelled at me to slow down or speed up the pace, of the tractor, not the song.

No one could hear me belting out the hit tunes of the 70s. Everything from the Carpenters’ “I’m On the Top of the World” to John Denver’s “Leaving on a Jet Plane”. I was fabulous! It didn’t matter that I sang the same songs over and over again. It didn’t matter that I may have missed a note or two. It didn’t matter that I didn’t know all the words. I was singing.

I used to sing in the junior choir in my mum’s church. It didn’t last for long. I used to sing in my elementary school choir. It didn’t last for long either. Somewhere around Grade 5, while sitting on a school bus coming home from a school trip, the Music Teacher, Miss Delavan, tapped me on the shoulder during the group sing-along and said, “Marilyn, why don’t you let the other kids sing?” I was done.

Somewhere deep inside I knew that I wasn’t a great singer, but to be told to stop singing stopped me. I stopped singing “Happy Birthday” at parties. I mouthed the words from then on. I stopped singing “O Canada” out loud. I either stood at attention or mouthed the words if I knew that someone might judge my closed mouth. The farm was long-gone by the time I was a young adult; there were no more sing-alongs with the tractor.

Music has always been an integral part of my life. From 33 rpm records on our family stereo, to cassette tapes and 8-tracks, there was always something to sing along to in our house. My mum and dad always sang aloud, and on car drives with my dad I remember harmonizing with him to “You Are My Sunshine”. At least, he said I was harmonizing. I loved the cocoon and safety of the car, where no one else could hear me sing. I secretly wondered if by harmonizing, he meant that I was singing in my own (off)key.

As an adult, I desperately wanted to learn how to sing and even took singing lessons from a professional teacher. I explained that I simply wanted to learn how to sing “Sentimental Journey”. She insisted that I learn the scales. I was doomed. There was no joy on Saturday afternoons. I lasted ten lessons.

When our daughters were born, I sang to them all the time. They could not talk back, so the relationship was perfect. From Broadway to Folk to old-time Gospel music, as infants they heard it all. As they aged, I made up songs about brushing their teeth, washing their hands, cooking macaroni, and how to spell their names. However, as they got older, my self-consciousness returned and my singing all but stopped.

“Let the other children sing, Marilyn.” That was over forty years ago.

A Honda CRV has an excellent sound system. I occasionally drive to visit my oldest daughter who lives two hours from me. Last weekend, during my drive, I was listening to The Chicks, driving past hayfields, barns, and farmhouses and it struck me; I was singing with abandon! There wasn’t a cloud in the sky. It was fabulous. I didn’t know all the words to every song, (although I can rattle off “Goodbye Earl” without missing a beat), and I may have missed a note or two, but it didn’t matter. I was singing. Out loud. I had to pause a moment to realize that I was physically and mentally happy from the actual act of singing. I felt as if I was back on the John Deere again. I felt free.

We each have our own feelings of self-consciousness that can hold us back from feeling joy and happiness. There are certainly enough laminated posters sold that tell us to “dance like nobody is watching”. My epiphany came on a highway, listening to The Chicks, sing “Some Days You Gotta Dance”. To quote from their song,

“Some days you gotta dance
Live it up when you get the chance
’Cause when the world doesn’t make no sense
And you’re feeling just a little too tense
Gotta loosen up those chains and dance”

I’ll be singing “Happy Birthday” the next time I have a chance. I don’t care if I hit all the notes.

I have always thought of September as a fresh start.

Summer days waned, holidays ended, and the ads on TV touted “back to school in style”. This meant a new school bag and pencil case when I was in elementary school, along with new running shoes and perhaps a few new tops and maybe some bell bottoms.

I looked forward to September. September meant new beginnings. A chance to reinvent ourselves. That moment of entering school on the first day of classes was filled with anticipation. “Who will be my teacher? Will I have to sit beside the girl who picks her nose again? Will I be teased? Will I have to do a flexed arm hang in phys-ed?”

Elementary through high school, college and university proved that January was merely a blip in the calendar. New Year’s Eve came with the occasional party, perhaps a night out, but it never held the cachet of the new penny loafers, a fabulous LL Bean sweater, and the Levis 501 jeans that I bought when I started college.

Even in my working life, September marked the start of a new season. I managed a trade show company and summer was typically a dead season for professional associations to hold meetings and major conventions. We started ramping up in August for “show season” that began in September then ran full-tilt through to spring. Summer in the office meant a more casual wardrobe but new suits came out in the fall along with killer pumps and perhaps a new purse bought while on holidays (something had to fill in for the pencil case).

On the morning of September 25, 2000, September’s new beginnings took on a whole new meaning.

Smoke and mirrors.

I had been sick since before our second child was born. Working seven days a week for a company recently purchased by an American firm. Placed on bedrest for the final months of my pregnancy, I worked from home next to a laundry basket filled with files. On the day our daughter was to be born in February, my husband was yelling at me to get off the phone with the office. I took calls in the hospital from the office hours after her birth. Upon returning home from hospital, I would rock her in her car seat with one foot, while working on my computer. I returned to work six weeks later.

As the weeks and months went by, I could no longer function properly. By May, I wasn’t sleeping. By June, I couldn’t write a sentence and I didn’t know the salt from the pepper shaker. By August, during our family vacation, I cried every day. By September, I was looking for the number for the employee assistance program. On September 24, I was sitting on a street corner, unable to walk back into my office building.

“Miss, Miss, unlock the door.”

I was in the emergency room in the hospital and I had asked to use the washroom. Of course, I had locked the door! Why wouldn’t I? It was September 25. Two colleagues drove me to the hospital after my employees found me under my desk quivering and shaking, unable to speak. My colleagues notified my husband who called my parents to come and sit with our infant daughter and pick up our eldest at school. The army had stepped in.

“So, whaddya you have? Schizophrenia?”

A nurse put me on a bench in a corridor with other patients. I was to be seen by a psychiatrist. By now my husband was with me and I was calm, exhausted. I wondered why I was in the hospital.

“So, you see, according to your postal code, we really can’t help you here. Hospitals are assigned to assist psychiatric patients according to specific regions and you have the wrong postal code.”

The psychiatrist gave us a paper with a list of hospitals in our city and referred us elsewhere. As we stood outside on that beautiful September afternoon, I sobbed. My husband called various numbers and we headed to the emergency department of another hospital.

By late afternoon I was in triage again, knowing this time to not lock the door if I needed to use the facilities. By early evening I had been assessed. Another paper, with an appointment for three months down the line. I’d never make it. I was numb.

The next day I received a call at home from a friend who had tried to reach me at the office. Upon hearing that I was at home she knew that something was up. Within a matter of hours, she had arranged for me to be seen by a psychiatrist in two days. As it turned out, I had taken care of a major congress for him the previous spring. I have a vague memory of my husband bringing me to the office and sitting with me.

“The employee suffers from major depressive disorder and will not return to work for at least three months.”

Three months turned into six.

I never did return to my original office or position in the company. Panic attacks prevented me from even going near the downtown core for more than a year. I did return to work in a new job with a sister company on a part-time basis. Ultimately, I resumed a management role and full-time status.

The years sped past.

Weekly visits with a psychiatrist. Medications. Various diagnoses. Part-time to full-time work. Another nervous breakdown in 2003. Weight gain from medications. Eating disorder treatment. A new diagnosis in 2005. A return to part-time work in 2007. Another nervous breakdown in 2017.

Twenty years.

Smoke and mirrors.

Most people who meet me wouldn’t know that I have been to over 648 psychiatrist appointments. Most people who meet me would have no idea that in over twenty years, I have swallowed over 26,767 pills ranging from anti-depressants to anti-psychotics. That averages 3.667 pills a day. You might, by now, have concluded that one of my diagnoses is OCD. There is also depression and bipolar-2. FYI, that’s the good kind of bipolar. I don’t “see FBI agents at my door” or have delusions, but man, oh man, when I am manic you should see how fast my fingers fly on the keyboard!

Some people who are reading this may be learning for the first time that it’s alright to talk openly about mental illness. Some people may not know how to react.

I’m not working anymore. The 2017 breakdown was the last straw. I volunteer. I exercise. I write.

I also celebrate the joys in life; family and friends.

And, September continues to be the start of my new year. How grateful I am to be living in it.

Asking the hard questions.

My husband and I celebrated 30 years of marriage this year. Thirty-six years together if you count the years of dating prior to the formal “I Do” in front of witnesses. But I knew that we would be together forever well-before that date in June 1990. I knew it in my gut on a cold winter day in March 1984 at the corner of Cavendish and Fielding, as I was walking home from my aerobics class. It hit me like a ton of bricks. I was already cold, but the shivers that went through my body were enough to stop me in my tracks. “I’m going to marry that guy. He’s my person.”

I wasn’t even twenty-one years old. My one serious relationship before him had not been a resounding success. But, somehow, I knew that this guy, this person, this human being who I had had only known for a few short weeks was it. Not my soulmate. Not my best friend. Not my man. Not my lover. He would be my husband. He would be the person who would be with me through thick and thin (if you read my first article, you know what I mean), from apartment to duplex to house; from childless to one to two kids; through the death of grandparents and parents; through surgeries and illnesses; from camping to cruising; from Kraft Dinner and hot dogs to vegan chilli and black bean burgers; from blonde to grey to white.

Those transitions and milestones didn’t happen overnight. We had the luxury of time. We grew together. We learned together and we leaned on each other. We invested in each other.

Over the course of our six years of dating, we eventually moved in with each other but still knew that the ultimate goal would be marriage. We talked. We planned. We had the serious conversations that people do before that big commitment. Kids? Yep. Baptism? Nope. Savings? Important. Debt? To be avoided (mortgage excluded). How to handle major holidays with the in-laws and outlaws? We settled that as the kids came along. We nurtured common friendships, we traveled, we bought a second-hand car (no debt!). We listened to each other, to the fears based on experiences lived, to hopes for the future, and worked to build our life together.

Each day that I wake up next to him, I marvel that we made it against the odds. According to Stats Can, the divorce rate of those married in 1990 is 13.21%. Just ten years later, that rate rose to 25.83%. Perhaps couples rushed into choosing the “millennium year” to tie the knot and then realized that they hadn’t found their person. They hadn’t taken the time needed after they had been hit by the ton of bricks.

In my current circle of friends, I am an anomaly. Several of my friends are divorced, some have never married, and a few have decided that they are perfectly happy on their own and have no plans to find the perfect partner.

Experiencing today’s world of dating vicariously has been eye-opening for me. From Tinder to Bumble to Match, there is no end to the resources available to women who are ready to take the plunge. A few of my friends have had some interesting dates from these sites. Our post-date get-togethers have left me in tears of laughter as they describe the ones that don’t work out. But, sometimes, one coffee date turns into a lunch date, and that turns into a movie, which then results in a dinner date and so on. Sometimes, the guy is a good guy.

The text read, “He broke up with me last night. I’m fine.”

How the hell could she be fine? I wanted to run right over, but I wasn’t anywhere in the vicinity and knowing my friend, she also needed her space. We met today for coffee. Good strong coffee, and maybe a cookie or two, or three. And, you know what, she is fine. She is also beautiful, admirable, wonderful, outstanding, and splendiferous. Synonyms that I plan to remind her of when she may be feeling less than fine in the days ahead.

He came over last night. Seems that for a few months now his “heart wasn’t in it” but just didn’t know how to tell me. So, I said, “Ok. You don’t love me. Please leave.” He wanted to talk more. He wanted to make sure that it wasn’t a frustrating situation. He wanted to explain more. I said to him, “What is there to talk about? So, please leave.” I went to get his books that were in my house and I returned to the room. He still wouldn’t go. I said to him, “Look, there is really nothing to talk about. It’s not like we are going to be friends, right?” He said that he hadn’t even thought about that but that he still wanted to talk, to explain. I told him that he had said enough and that, again, he should leave. Then he moved in for a hug! I told him not to come near me and I opened the door so he could leave.

He was a good guy. They had been dating for nine months. He had been to our house for dinner. They had travelled together. He bought her beautiful gifts; he sent her flowers. They enjoyed the same sports, they loved to go on long walks, they held hands, they laughed, it all seemed fine. But… he had never divorced his wife. They were only legally separated.

It didn’t seem like a big deal. They had separate homes. They shared custody of the kids. But, why was he still legally connected to “his person”?

“I told him I had three pieces of advice: get a divorce, learn how to love, and learn how to be loved.”

Along with being fine, my friend is immensely wise and strong. Although I know that she is hurting today, I wanted to write about how she inspired me and how I hope she inspires others who may one day go through something like this. She didn’t let the guy off the hook in this break-up. She didn’t let him continue to talk, so that he could feel that he had “let her down easy”. She didn’t let him have the power. He said, “I don’t know what I will tell people when they ask about what happened.” Her reply was, “Well, you will have to figure that out.”

She could spend the days ahead ruminating over why he broke it off. Why he didn’t do it months ago when he started to “not feel it”. But, what good would this do? There would never be a concrete answer. Love is subjective; based on an individual’s perception for its existence. My friend is fine, not delicate. There will be time to grieve, but then she will accept the learnings and move on.

Love is never easy. It’s complicated, messy and sometimes painful.

When the right person does come along, I truly believe that we know it. Deep in our core. We can’t deny the obvious. We have to have the hard conversations with each other and be honest with ourselves. Sometimes this might mean saying goodbye but finding that we love and respect ourselves even more.

How this pandemic reminded me that I’m still fighting a war.

It started on May 11, 2020. I distinctly remember the day. I felt fine when I woke up, but I knew that something was different. By 11 am, I was in the basement, dripping with sweat, nauseous, and could barely stand. My muscles hurt; my back was sore; I was exhausted. It continued for days, weeks, through the month of June.

I started to lose weight. My eating habits changed. The family noticed that I was cooking differently. I no longer craved sugar. I no longer gazed longingly at the jar of peanut butter. June came and went and the number on the scale dropped. Clothes that had not fit at the start of the pandemic in March were suddenly zipping up. The sweats were still there each morning, but the aches and pains had diminished. I felt stronger, in control, happier.

By the end of July, I was readily admitting that I had LOST my Covid-19! Shed weight! While I had read stories on social media stories about people who had been struggling with the “Covid-15” and the weight gain from eating too much sourdough bread, I felt as if I had escaped the plague. I told friends about my enjoyment from my virtual training, my new meal plans, and how well I was feeling both mentally and physically.

And, then it happened.

My scale got moved. Simply relocated to another spot on the basement floor. To be honest, it’s an old scale. It came with our house. It’s likely fifty years old if it’s a day. BUT, it was my guidepost. It had sat on the exact same two tiles since May 11. I weighed myself every day on that scale, situated on those tiles, in that basement, like clockwork. And then it got moved. And that’s when I fell apart.

Had I really lost those Covid-19? Apparently NOT. Not according to the new placement of the scale. Today, I have only lost 17. Or is it 16? Who the hell knows?! And, now, I feel like a failure. It doesn’t matter that people have noticed my weight loss. It doesn’t matter that clothes fit better. It doesn’t matter that my frozen shoulder is working again. I am sitting here, in a chair, bitching that I am pissed off about a 2-pound weight gain because a fifty-year old scale has told me that I am worthless because I weigh 32 ounces more than I did yesterday.

Why do women let the number on a scale define us? I have fought this battle most of my life. I thought I was done with it. I thought I had beaten the demons. Does an eating disorder ever “leave”? Does treatment ever stop? Why can’t there be a vaccine for the illness? Or, if we have had the disease once in our lives, why can’t we develop anti-bodies that fight the battle for us when the bingeing returns? When does it stop? When are we simply enough? Enough without the comfort of the numbers on the scale.

I don’t have an answer today. I thought I might. I don’t. All I have is me. In a chair. NOT going to my basement to see if the Covid-19 may have changed since this morning. I’ll let you know how it is and how I am tomorrow.