This morning, two days before I leave Muskoka, I looked out the window and there was my favorite bird: A Great Blue Heron. This is how 30 minutes were spent this morning, as I followed a magnificent bird.
Everything was going well the summer of 2018. Having just arrived in Canada after a wonderful trip to Alaska, I was at the cottage with my husband, two oldest children, and mother. My youngest daughter was at camp. We were in the one place that has always brought me happiness: Muskoka; a wonderful place to continue an already idyllic summer. Life, however, has a funny way of sneaking up on you. Just when you stop holding your breath waiting for the next bad thing to happen, you are hit hard. The path you thought you were taking changes course completely.
The day started like any other. I was getting ready for an early morning run because I was training for a half marathon, the first in many years. Outside, the sun shone bright; we were promised a beautiful day ahead. My husband had been over at the cottage. I heard him walk up the stairs and enter the bunkie (the rooms over the boathouse where the two of us were staying). When he walked into the room, I heard him say: “Bay is ok, he’s asleep, but we have a problem”. Confused and readjusting my thinking, I sat down on the couch.
As my spouse sat down beside me, I was handed a letter my son had written the night before. The only words I remember are “I’M STILL HERE”. The letter went onto explain the depression and plans of suicide that he had over the last few years. My middle child had planned to take his life the night before, but instead wrote us a letter. We were lucky.
I was stunned and in shock. My husband and I both were. Over the last year we had asked Bay to talk with us, but he kept insisting everything was “FINE”. My middle child did not want to let us know just how much he was suffering. Everyone has their breaking point. The point that tips someone over the edge can be something that others would find insignificant, but to that person it is everything. Bay had reached the edge and was at a critical point.
Memory is a funny thing. Sights, sounds, smells, and music are among the things that can trigger a part of your brain that pulls a vision from the past, forward. Sometimes it is the wind blowing, with undercurrents of cold, or the way the sunlight plays upon the landscape that allows me to recall years gone by. When I think about that day just over four years ago, I remember the numbness. For me time stopped and I didn’t know what to do…..
How should we proceed? Would the correct thing be for both my husband and I to take Bay home? With both our daughters in Canada, maybe one parent should stay at the cottage and the other take our son back to the states…..we went over many scenarios about what to do for our child. In the end, the answers was staring us right in the face, but it never even occurred to me.
That morning while, Bay was still asleep, we went over to the cottage and told my mother what had happened. We all sat, with tears in our eyes, while we talked about the best path forward. Suicide was not new to my family: my aunt was schizophrenic and took her life in the late 1960’s, then my dad took his life in the September 0f 2010.
The phone rang, it was our neighbor. My mother automatically picked up the phone, although she was too choked up to talk. The friend on the other end of the phone line knew something was wrong. Down the road our neighbor drove in her golf cart. When she walked into our cottage, she asked my mother what was wrong. Our neighbor was told what had happened. This no nonsense woman looked directly at me and said: “take him to the emergency room”. If my child had an accident or was extremely ill physically, I would have done just that. For a mental health condition, it never occurred to me that an emergency room would be the right place to go. The advice was taken. We woke Bay up, grabbed him something to eat, then headed into town. The whole way to the hospital I asked myself: “Is this my fault?”; “Has DNA been the cause of Bay’s suicidal ideation?”; “Did I make a mistake in finally telling my two youngest children, just the summer before, how their grandfather died?”. These thoughts circled, around in my mind.
Once we arrived at the emergency room we were seen quickly. The morning was long however, with all of us being spoken to: Bay by himself, then my husband and I together, then the three of us. We needed to give the history of our family’s mental heath issues. My family had the conditions that were known, so my part in the discussion with the doctor and social worker were detailed and tiring. Little did I know this would not be the last time I told of my family’s past.
The morning turned into early afternoon. In the end, it was determined that our son was safe to return to the cottage with us. Weekly we drove to town, Bay would meet with social worker that he felt comfortable with. Calls were made, and mostly unanswered, to find a therapist for him to see when the summer ended and we were home. For the time being our middle child was free from self harm.
That summer I needed to talk. Not having a therapist to talk to, I was fortunate to have a life long friend that I could confide in. We took some long walks together. During one of these excursions, she said to me: “you are only as happy as your saddest child”. For months, those words felt solid and true. This morning, four summers later, I look over the calm lake and think about how far this unexpected journey has taken me….
Authors note: As a mother, I feel fortunate to have a strong bond with all three of my children. Each relationship is different, yet wonderful. This story, although mine, surrounds my middle child. For those of you who do not know me, the name of my second child has been changed to “Bay”, to protect their privacy. As this is a story of my experience, it will be continued, most likely with other stories in between. Keep reading to find out where this journey leads. Perhaps my story will help some of you.
The summer of 2018 dawned bright with the beginning of a beautiful summer. I had just turned 50. My eldest daughter graduated salutatorian from high school in May and was about to turn 18. As a gift for these momentous occasions, my mother offered to take my family on the trip of a life time. Four years ago, in late June, off we went: a trip that seemed like the beginning of an idyllic summer. Travel with me to the great Northwest, as I traveled 4 summers ago:
Vancouver, British Columbia
In late June my family joined my mother and her partner in Vancouver; there were seven of us in all. We spent a few days seeing some of the city, before embarking on a cruise to Alaska.
Gastown: Vancouver’s oldest neighborhood and original settlement
Stanley Park
On Board The Star Princess: the beginning of our Alaska cruise and land tour
Traveling to The Land of the Midnight Sun
Ketchikan, our first stop, was founded as a salmon cannery site. Of the three ports of call, the time in this city was the shortest. Our time ashore was spent walking around the city, visiting the Totem Heritage Center and seeing the Ketchikan Salmon Ladder and waterfall.
Juneau was the second port of call. We passed the morning hours walking around the capital city of Alaska….Someone, perhaps in the visitors center, told us to go to a waterfront park where there was a sculpture of a whale in an infinity pool; for me that was the pinnacle of our morning.
The afternoon was spent on a Whale Watching and Mendenhall Glacier tour:
Skagway, our third and final port of call, is known as a town of the gold rush era because it is a gateway to the Klondike gold fields.
An amazing tour was taken from Skagway, by bus and railway. We had a fabulous tour guide named Bruce Schindler; he came to Skagway one summer, from Washington State, to be a guide on a tour bus and basically stayed. I mention Bruce, not only because he was such a great tour guide, but also because guiding tours was rare for him at the time. We were lucky to have him give us our tour. He had become an artist, creating sculptures and carvings out of mammoth tusks, as well as using the ivory and Yukon gold to make jewelry. Look him up.
Rail and Bus Tour
The bus took us to salmon bake buffet for lunch at Liarsville Gold Rush Trail Camp and ended at The Red Onion Saloon. I have no pictures of these.
The City of Skagway
After Skagway, we had one last big adventure aboard the ship:
Cruising Glacier Bay National Park and Glacier Fjord
The Cruise ended in Whittier, where we disembarked. The fascinating thing about Whittier is that it was built as a secret facility during World War II to support the war effort and provide a reliable trade route to the Alaskan Rail Road; the water here is ice-free all year making it an ideal area for a military base.
The Alaskan Land Tour Begins
On The Train
From Whittier, we boarded a train to Denali National Park. The trip on the train took about 10 hours, but we saw beautiful scenery along the way:
Denali National Park and Preserve
Moss and lichen grow in abundance in Denali National Forest. Among other things, lichens provide a good food source for many animals and moss helps control soil erosion.
Some Of The Flora and Fauna in Denali National Forest
The official land tour ended in Anchorage, where an unofficial tour began
We spent a few days in Anchorage after our excursion with Princess Tours. Like most tourists in a city, we went to a museum, walked around, and ate at extremely good restaurants.
Unlike many visitors, we scattered my father’s ashes in an area south of the city called Girdwood. My father had been an anthropologist, whose work focused on the people and the land above Arctic circle. We couldn’t make it up as far as the town called Kivalina that was so close to his heart. A former colleague of my dad’s suggested scattering the ashes in Glacier Creek: we wouldn’t have to walk on mudflats that could be dangerous, but the water would eventually be taken out to the Pacific Ocean by way of the Gulf of Alaska. I had arranged for the remaining half of my fathers ashes to be sent to one of two Anchorage hotels where we stayed. The other portion of my father’s ashes had been scattered seven summers before on a lake in Ontario; the thought was to spread what remained of my father in the water of the two areas he loved most: Muskoka, Ontario and Alaska.
At 10:00 in the morning, on July 4, 2108 we toasted to my dad. My three children, husband, mother and I sipped bourbon (his favorite drink) out of tiny bottles, while my mother’s partner looked on.
After the ashes were scattered, and we said our goodbyes, there were two more stops on that little road trip: Alaska Wildlife Conservation Center and Alyeska Resort.
Alaska Wildlife Conservation Center
The Views from above Alyeska Resort
Our Final Day In Alaska
On our last day in Anchorage we had one final destination: Potter Marsh Bird Sanctuary.
My mother took us on the trip of a life time! Truly this was the beginning of an ideal and beautiful summer. Unfortunately beauty can be fleeting. When we arrived in our summer home in Muskoka, about a week after our trip, our lives took us on a different kind of journey; one nobody could have expected…
as told to me by Laurie Jewell
Three weeks ago, a woman named Laurie Jewell reached out to me on Tell Me Your Story. The first few lines of our chat conversation went like this:
Laurie: In need of a place to live asap, I’m disabled.
Me: I am sorry, I can’t help you with that.
Laurie: Ok. Your headline says tell me your story; I did.
Me: Oh, now I understand. Sorry, I thought you were asking me for help in finding a place to live. I do apologize!
We chatted for quite a while. As it was late, I promised to get back to her the next evening. Unfortunately, life got in the way, and I never finished our conversation. Yesterday, Laurie reached out to me again….the following is her story:
Not long ago, Laurie ( a woman in her mid-late 60’s) was told that she needs to leave her home of many years. The people who own it, in Springtown, Texas, have decided to sell. By July 30, everything has to be packed and her house has to be vacated. Today is July 16 and Ms. Jewell has nowhere to live.
At the age of 55 or 56, Laurie was diagnosed with Torticollis. According to John Hopkins medicine this is what the condition is:
“Torticollis, also known as wryneck, is a twisting of the neck that causes the head to rotate and tilt at an odd angle.” (To see more go to: https://www.hopkinsmedicine.org/health/conditions-and-diseases/torticollis-wryneck).
Her neck lies on her shoulder. When asked what the doctors did for her, I was told, “They gave me a neck brace made out of foam and I got a big blister from the heat”.
The life this woman once led has changed drastically.
Years ago, before Laurie had Torticollis, she would walk 9 miles to and from her job. Working the third shift at CVS, she would be on her feet all day. No longer can Ms. Jewell run or play with the grandkids. The easy mobility once known, has disappeared: the top of Laurie’s spine is crooked, her leg goes numb and she loses her balance a lot. A walker helps her move around.
Laurie told me she does very little in life anymore, but cry… Her landlord, said something to her children two years ago and they haven’t talked to their mother since; when she calls they hang up. The person who will soon be selling Laurie’s home, has known her for 32 years, yet will not even help to take her to the doctor.
Soon Ms. Jewell will become homeless. She is in need of subsidized, affordable housing, with access for her walker. Springtown is about a 35 minute drive from Fort Worth, TX. If there is anyone reading this story, who might be able to help Laurie in anyway, please message me and I will help you connect with each other.
After reading this story, many people may decide to no longer follow Tell Me Your Story. That is your prerogative and I understand. However, please give me the courtesy of reading my story.
A storm is coming, across our land. Perhaps it is only the black clouds of anger that are encircling me. I am mad, frustrated and scared for what is happening within our country.
Everyday, during the school year, kids recite the Pledge of Allegiance; it goes like this:
“I pledge allegiance to the Flag of the United States of America, and to the Republic for which it stands, one Nation under God, indivisible, with liberty and justice for all.”
For a while now, I believe that the United States has been becoming divided and the “liberty and justice for all” is being extinguished.
Overturning a 50 year old ruling
The storm grows closer upon finding out Roe V Wade was overturned, although not surprised, I was filled with a gray sadness. I am pro-choice. For years, not engaging in conversation about this, was best for me; it’s such a divisive subject.
In college, I had (and still have) a dear friend who was (and perhaps still is) pro- life. Our differing beliefs have no influence on our friendship. Differences are what make us human. One day, years ago, this young woman came to me and said “ My mom thinks she might be pregnant. She can’t have a baby, she’s too old.” I looked at her and said: “what do you think she should do?”. The response was: “She should have an abortion.” “That’s what it means to be pro-choice”, I said with surprise. “You have the right to choose what is the best thing for you.” Granted, this was her mother she was talking about and in the end her mom wasn’t pregnant.
In my early twenties I was moving into an apartment with someone I barely knew. Before we moved in together, she wanted me to know that she was pregnant and was going to have an abortion. Not long after she told me this news, I took her to the clinic. I held the hand of my new housemate, as she lay on the table, while her pregnancy was terminated. Although I haven’t seen this friend in 21 years, that day is something we were both thinking about as Roe V Wade was overturned: she on one side of the country and me on the other. She had many good reasons to choose this course of action, but she had a CHOICE.
Ten years later, I mourned with my neighbor, another friend. She continued with a pregnancy that she knew would ultimately end with the death of her child. My heart broke as I watched this woman go from the joy of finding out she was pregnant, to the grief of knowing her baby would die. She was so strong, enduring months of sadness. Although the termination of the pregnancy was a possibility, this wasn’t something she would do. Her baby had a chromosomal disorder, Trisomy 18. My friend’s life wasn’t in danger, so she continued through with the pregnancy.
The overturning of Roe V Wade: could it lead to more human rights being overturned?
The thunder begins to rumble, as I hear the words from Justice Clarence Thomas:
“landmark high court rulings that established gay rights and contraception rights should be reconsidered now that the federal right to abortion has been revoked.” https://www.cnbc.com/2022/06/24/roe-v-wade-supreme-court-justice-thomas-says-gay-rights-rulings-open-to-be-tossed.html
Several months ago, after telling someone close to me that Roe V Wade might be overturned, I was told “Roe V Wade can’t be overturned, there are too many checks and balances”. A few weeks ago that same person apologized to me saying, “you might be right about Roe V Wade being overturned”. Today, when I mentioned that I was extremely worried about Justice Thomas’ words, this man told me the same thing about checks and balances. I reminded him he was wrong before.
Why does this upset me so much, as a cisgender, heterosexual, white woman, who is almost out of her child bearing years? I have three daughters, one of them is transgender. If these rights are taken away, what is the recourse for contraception, and for anyone to live their life in the LGBTQ community? Is a whole segment of society going to be outlawed?
If I could speak to Justice Clarence Thomas
Roe v Wade was over turned by a majority rule, this is true. However, it’s the words from Justice Thomas, that make the storms clouds swirl rapidly around me, and the earth quake under my feet. If I could speak to Justice Clarence Thomas, this is what I would say:
On the matter of abortion and contraception: Do you really think taking contraceptive rights away from a generation of women is a good idea? Let’s take a few examples….
1) rape and incest: if a woman becomes pregnant because of these atrocities she would have one of two choices: carry the baby to term or get a back alley abortion. Not everyone can afford to travel to a state where abortion is still legal.
2) medical reasons: I consulted with a doctor and found out that there are so many medical reasons to terminate (to see the full list see the note at the bottom of the story*): The top two are ectopic pregnancy and critical maternal illness. Ectopic pregnancy is seen in 1% or more of all pregnancies; it is the “Leading cause of death in the first trimester. Ectopic fetuses can have cardiac activity at time of diagnosis. Pregnancy termination to avoid death by tubal rupture and massive bleeding is an obvious, lifesaving surgery, because treatment can be severely toxic to fetus or cause miscarriage.” Critical Maternal illness the “Treatment can be severely toxic to fetus or cause miscarriage”. The over turning of Roe V Wade does not allow for so many women to have the ability to make a Choice that’s best for her family. Are you telling me a life that has not been fully formed is MORE important than the life that already is?
3) Contraception (otherwise known as birth control): if a woman’s right to contraception is taken away, how is she supposed to prevent pregnancy? Perhaps “Justice” Thomas, you mean the morning after pill, but I have a feeling you truly mean all contraceptives. Let’s go back to the morning after pill…I don’t know much about it, but it is obviously less invasive than an abortion and safer than other means a woman will go to.
When it comes to revisiting gay rights, I hear that you would like to take these liberties away. In The Declaration of Independence we are taught, as children, that “every human being has unalienable rights” among which are ” life, liberty and the pursuit of happiness”. If you take away these absolute rights, you will be criminalizing a population of people: men, women, children and those who don’t conform to any of those labels.
You say “gay rights”, however it unequivocally means the whole of the LGBTQ community. My child has finally, after a long struggle, come to accept and have pride in who she is. Mr. Thomas, you are not a “just” man. Haven’t you had bias against you? I don’t care what your race is, but the fact of the matter is you’re a black man. Also, I just found out that your wife is white. I don’t care about the color of your wife’s skin either, but if you decide to revisit contraception and gay rights aren’t you opening the door for the Supreme Court to “revisit” Loving vs. Virginia? It could happen, after all the ruling is 55 years old; 5 years older than Roe vs. Wade.
Words have power
To me the word CHOICE means so many things, but above all it’s this: people should be able to live life the way they want without the anger and hatred of others. It doesn’t matter to me what color or ethnicity you are. Color and ethnicity cannot be changed, neither can gender identity or sexual orientation. I believe in the freedom of religion and how one chooses to pray. What I don’t respect is when people can’t listen and hear the reasons WHY a person lives their life in the style they do.
I can’t talk with Justice Clarence Thomas, but perhaps people in this country can start by have a conversation with each other. For those of you who are still reading this story, I challenge you to take time to listen to the opinion of others. Respect and embrace the differences within our country. Our country was founded so that people could have freedom. If contraceptive and gay rights are taken away, it won’t just be a storm; it will be a hurricane, leaving devastation in its wake.
*According to the doctor I consulted there are so many medical reasons to terminate a pregnancy; these include:
“Fetal anomaly/lethal defect If the fetus has no chance of surviving must this pregnancy continue and place mother at risk?
Selective reduction Used to reduce #fetuses being carried to decrease health risk to mother and increase likelihood survival for remaining fetus
Selective termination Used to terminate one abnormal fetus while allowing the in uterine siblings to continue. Technically the woman remains pregnant
Premature Rupture of Membranes If this occurs in second trimester a live birth is highly unlikely but this carries increased risk serious infection (not necessarily imminent but eventually)
Cancer Both chemo and radiation harmful to fetus, especially/predominantly in first 3 months. Causes birth defects, fetal loss and neonates with compromised blood counts.’
by Joye Lange
What do you envision when you hear the word ”joy”? I envision a bright light, full of happiness. Over the last few weeks, I have learned a little about the life of Joye Lange. She has had a life full of tragedy and trauma, but a brightness seems to glow within in her. Here is Joye’s, story as told to me:
My name is Joye. I was born in Chicago in 1952, two years after my brother Larry was still-born. My parents called me their bundle of joy. Perhaps this is how they came up with my name? At birth, I fought really hard for 12 days in an incubator. Born a “blue baby”, my respiratory system wasn’t developed well at birth. I also had pulmonary hypertension from the beginning of life. The Catholic nurses in the hospital insisted that “E” be added to the end of my name, for the word extraordinary. That is how my name became Joye.
We moved to sunny Southern California in the end of 1952. I wouldn’t have lived past the age two if my folks didn’t move to a warmer part of the country. We loved living in California from the 1950’s to 1990’s. Many wonderful and crazy experiences! One fond memory of mine was having Ron Howard open the door for me at Valley College. Fun years were spent there, but I still had my share of traumas and health issues.
My little sister had an accident when she was about two and I was six. My sister got her head cut open. Our grandpa and I brought her to the doctor just in the nick of time. Also, when I was six our mother had to make a choice to save her life. Mom was pregnant, with by brother Wesley, but had tumors along with the fetus. I don’t think that my parents really wanted to terminate the pregnancy, but decided to. None of us were the same emotionally or mentally after that. My dad drank and my mother smoked cigarettes throughout my life, but after the pregnancy was terminated it was much worse; they used these things to self medicate.
When I was a little older, measles, mumps and chicken pox made me sick. Sledding a Mt. Pinos, left me with a broken foot. Then at age eleven, I was hurt when I stepped between three boys fighting near my pregnant teacher; ligaments were torn from that incident. In my teen years, I had my share of sexual abuse.
In Los Angeles, I helped hostess with the VFW2323 . On January 4, 1969, I met a wonderful guy named George at a USO Dance. He was a Canadian who joined the USMC. The corps took him to Vietnam from 1967-1970. We married in 1972. Two sons blessed us. We lost one baby, in 1977. In 1986 I had a total hysterectomy. The agony didn’t stop there. At the workplace in 1987, I was exposed to toxic chemicals. The trauma was so bad! The fact that I am still alive to talk about it makes me grateful!
Our son James (Jim) was shot in 1989, at the age of 15. He was brought back to life after dying on the operating table three times the night of his operation. Sadly, Jim died in 2013. Something happened after my son died: I dreamt of my brothers, both of them as adults. Larry, my first brother hugged me really hard before he had to go back to heaven. Wesley, looked just like my son Jason; he had long hair and was really tall. Dad said to me in the dream “see I told you he was really nice” .
We moved to northeast Ohio in 1993, where we still are today. I love everything about my experiences here! Well, almost. There were also traumatic events in the Buckeye State: My husband lost his hand in 2002. Three nervous breakdowns were suffered by me over the years (in 1989; 1998 and 2015). I have many health problems too.
Now at the age of 70, I am enjoying retirement. Traveling, writing and graphic designing keep me busy. In August, George and I will celebrate our 50th wedding anniversary! A life lived full of ups and downs, but I wouldn’t change much. I have learned a lot over the years!
Books I have had published
Lyric Poems I have written:
Graphic T-shirts I have made
Fatherless Recently my husband said to me “I do not want YOU to do anything for me for Father’s Day”. His expectation was clear to me. This is Father’s Day.
Last fall, as my Father-in-law was dying, I watched somewhat with envy, as my husband saw him through those last days. My dad ended his life almost 12 years ago. The weekend before his death my parents came to visit us. I didn’t know this would be the last time we would see him. The chance to say goodbye escaped me. With both my husband and me fatherless, will there be another Father’s Day celebration? That is for our children to decide.
I think about my father often. He truly was a wonderful dad! When he took his life in September of 2010 we were in shock, but that is another story…my father gave me so much over the years. He truly helped shape the woman I have become.
When I was young, putting words on paper and creating a story was joyful for me. Raising children and living life pushed my creative energy to the back of my mind. The very last gift he gave me was the gift of writing. How did my dad give me this final present? When he passed, feeling compelled to say something at his memorial service, I wrote him a letter to say goodbye. Although reading the letter, while fighting off tears was nearly impossible, the creation of the letter reminded me of how much I loved the art of writing.
The Goodbye Letter To My Father (This is written in the present tense, as written in September 2010, a little rusty from years of not writing. Some names have been omitted for privacy.)
Dear Dad,
Every once in awhile Greg will ask out of the blue: “What do you remember about your parent’s while you were growing up?” This of course takes me by surprise and I mumble a few things. When asked this, I thought of you and mom collectively.
Over the last four days, I have had pictures and memories flood back. I cannot write them all down or put them all into words. These are some of the things that have made me into the person I am and the habits I have formed:
When we were very small you used to tell us stories of the Three Ninnies, who we knew were really us. My siblings and I would die of laughter.
As I grew older and stopped having bedtime stories, I had a hard time getting to sleep. One night I wandered out of my room and complained that I couldn’t sleep. You sat me down and said: “You should read before you go to sleep because it will take your mind off of the day’s events”. I followed your lead and for the most part have gotten to sleep without a problem.
In being active yourself, you taught me to be active. As you know, I was a swimmer. When I could not swim after my spinal surgery, I followed your example of staying active by walking. When I was able to slowly start doing more, I cycled and then I swam. Finally, following your lead, I ran and rarely ever stopped.
Dad, I remember cross-country and downhill skiing in the winter, and cookouts in the snow. You said you weren’t a builder, but you built: a playhouse that we loved, ice skating rinks in our yard in Winnipeg and even an igloo one winter in Muskoka.
You sat with me and cried as you explained the options I had ahead of me when my scoliosis had gone past the point of wearing a brace. You supported me as you allowed me to make my own decision to have the spinal surgery. Then following the surgery, every Sunday, you patiently unscrewed my brace so that I could take a weekly shower.
There were so many trips that gave us our love for travel. You encouraged us to explore the world and never discouraged us when we were heading into dangerous territory. When your eldest daughter, two of our friends, and I were heading to a country on the brink of war, all you said to me was “Don’t go to Sarajevo, there is fighting there”. You never stopped me from going to Mauritania, even though you were were scared to death of the high slave trade in the area. I never knew you felt that way until last year.
When I was pregnant and alone, you helped me turn my house into a home by hanging shelves and showing me how to do it myself. You held my hand when my first marriage ended and let me go when I met Greg, you knew I was safe and happy. You gave me your blessing when we were married, because you said I was not only marrying a good man, but a good family.
Dad, when you became a grandfather you wanted to be called grandpa, but my eldest had other plans. First she called you “Gucky”, much to your chagrin. She said to me the other day “I must have called Bop Bop ‘Gucky’ first because I loved ducks so much. Eventually, my child coined the name Bop Bop and that became your name. All the grandchildren loved you, even though Nana was doing all the work. You only had to smile and play the “mousie” game and the kids would laugh and laugh.
There is so so much more I could say. You taught me to always do my best and be strong in whatever I did. I never saw your scars emotionally or physically. I am sorry. I hope you know how much we all loved you. Although you never believed in Heaven, I hope there is one. I hope that you and your sister are looking down upon the day. We have come together to celebrate your life. We will never forget you.
Love, Sarah
My Father’s Continued Effect On My Character This piece of writing was pulled out last week; it is unpracticed and raw, written on a computer that wasn’t my own. What struck me, when reading the letter for the first time since 2010, is how my dad’s influence still resonates today, in my words and life. I didn’t realize, until now, how so many of my stories have echoes of what is contained in this goodbye. Me and my siblings were truly lucky to have such a great dad! Sitting in the Denver Airport, across from an elderly man, I wonder: “Who my father would be now?”. He had a good life, yet full of trauma, perhaps he chose how he wanted to be remembered.
By Heather Cartwright
My friend Heather wrote this beautiful and moving story about her heart condition called Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). The account of her journey living with heart failure was originally written and published on Our Heart Hub, https://ourhearthub.ca/. I contacted Heather and she was given permission for me to publish this on Tell Me Your Story.
I have lived over 30 years with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), and for the past eight years I have lived with heart failure. ARVC is an inherited heart disease that can cause deadly arrhythmias leading to sudden cardiac arrest.
As the disease progresses, the heart muscle is replaced with fatty and fibrous tissue, causing it to weaken and pump inefficiently. In the worst cases of ARVC, heart transplant is needed.
I have learned that the best way to cope with the anxiety and uncertainty of living with this unpredictable cardiac condition is to treat myself with self-compassion, to accept the realities of my disease, and to live the best life I can.
My journey has taken many twists and turns. It’s like a train trip over rough terrain; down deep gullies, up to the highest peaks, around hair-raising turns, and over precarious bridges. Each section of the track offers its own challenges such as cardiac episodes, ER visits, ablations and device surgeries, PTSD after ICD shocks, and new diagnoses and treatments. Yet my train keeps chugging along, finding safety along the way in quiet stations. In those moments of calm, the views have been lovely and the company fine. I have met fellow passengers on this journey who have enhanced my trip, sharing inspirational stories of their own. I hope my story helps you. Come aboard.
I was twenty years old when I collapsed with ventricular tachycardia following a rowing race. I was a collegiate varsity rower at Western University with aspirations of competing at the Olympics. I identified as a strong and skillful athlete, enjoying the thrill of outdoor pursuits like whitewater canoe tripping, cliff jumping, and ski racing. I used exercise for stress reduction, going on long runs to clear my head. In rowing I got the opportunity to push my body to its limits, enduring pain, and elation, at the outer edges of my potential. Suddenly, all that had to stop. When I was diagnosed with ARVC, I was told by my cardiologist that I could never do competitive or endurance sports again.
The particularity of ARVC is the unpredictability of deadly arrythmias. Some patients go years between events, and some may never experience a “hot phase” of recurring and random episodes of ventricular tachycardia, and even cardiac arrest. Whether influenced by stress, caffeine, physical exertion or other unknown factors, the heart can beat wildly and erratically, despite daily medications to keep it in line. The only way to save a patient during an event is to shock them with an ICD, inject them with anti-arrythmia drugs, or defibrillate them in the ER. Just like unplugging and plugging in a computer when it freezes, the reboot gets it back to normal.
I was devastated. I was in denial of my diagnosis. In response, I often pushed myself and took unnecessary physical risks that landed me in the ER.
During my twenties and thirties, I was angry and resentful at the limitations to exercise, diet, and day-to-day living I faced. I saw it as a betrayal of my body against the wishes of my mind. My dreams of the Olympics were over. I over-ate to numb my pain, lashed out at others, and retreated from intimate relationships in a misguided attempt to keep myself safe. I overworked in my career, trying for some fulfillment I could not find in my personal life. On the train journey of my life, I was in the lowest gully.
But from the depths, I could see new mountains ahead. It was not my nature to wallow in self-pity, and it was clear that my rebellious self-harm was only hurting me. I decided that big changes were necessary in my lifestyle. So, I quit my corporate job to become a full-time rowing coach at elite US colleges.
I loved coaching. Being on the water in nature, helping students reach their potential, and leading a group towards shared goals gave me purpose. Yet, even as my train was scaling higher peaks, I encountered scary hairpin turns – like the year my ICD delivered therapy 54 times. My type A+ personality had not diminished when I traded a corporate pantsuit for sweatshirts, a cubicle for a coach boat. My electrophysiologist encouraged me to slow down, but I simply changed schools to a more competitive rowing program.
Finally, my hard charging personality of always pushing myself caught up with me; I collapsed on the dock during rowing practice and was rushed to the nearest hospital where they saved my life. Later, my doctor, with tears in his eyes, pleaded with me to quit coaching. He warned me that my next cardiac episode would be my last. The reality of my situation hit me: no matter what adjustments I make to my work schedule or environment, it was incumbent upon me to change my attitude to save myself.
After quitting my coaching job and returning home to Toronto, I signed up for a week-long meditative retreat for mindfulness and self-compassion led by psychologist Dr. Christopher Germer and researcher Dr. Kristin Nuff. This retreat challenged every assumption I had about achievement and self-care. I had been brought up to believe that listening to that dark inner critic inside myself was necessary to my success. Initially, I pushed back at their encouragement to be gentle with myself, to forgive my body for its limitations, and to embrace my new reality. They advocated taking a pause and being mindful to provide a safe place for my body and mind to self-soothe and find relief. But it all seemed too soft to really work on a high achieving person like me.
Yet, as resistant as I was to their practice, I decided to give it a try, even if only to show it would not work. To my surprise, it did.
Over the years, I have attended many more retreats. I have learned to meditate by using phrases of self-compassion such as “May I be safe, may I be calm, may I live in peace.” I said these words with as much intention as possible. I tried to be open to whatever pain or unpleasantness came up and used these words to soothe myself. When sitting cross-legged on the meditation pillow, I resolved to make friends with my heart. I saw that it was not to blame, but to be forgiven. When words did not comfort me, I simply pressed my warm hands over my heart center. In time, I found myself less angry, more grateful, and more open to accepting the volatility of my condition.
This new-mind set was helpful when my mother was diagnosed with stage 4 incurable lung cancer. As her primary caregiver, I was with her each day and at all her doctor’s appointments, chemo treatments, and operations. We shared more than just a familiarity of the ins and outs of the hospitals along Toronto’s University Avenue: I had been living with the threat of sudden cardiac death to my mortality since I was 20; my mum was now confronted with the end of her life at age 78. Together, we shared our understanding of the impermanence of life, that nothing is for certain, and that accepting one’s reality of “what is” instead of “what one hopes for” is the most grounded way to cope. We had deep conversations about life and death, and where one goes after they die. We did not have answers for our questions or assuage all of our grief, but just talking about the taboo subject of death lessened our anxiety. My mother died a peaceful death, surrounded by loved ones, comforted by the fact that everyone was fine and it was her time to go. It was a profound experience.
Just four months after my mom’s death in 2014, I was diagnosed with heart failure. The train was now crossing over a bridge to an unknown land. But I felt confident that I could handle what came next because of my attitude shift. I was learning to love myself and to practice self-compassion in the darkest times. I was accepting my heart condition as it was. And I was no longer so occupied with my fear of death, but instead on living my fullest life. That shift encouraged me to embrace what I could do; to appreciate my friends, family, and loved ones with gratitude; and to live in the moment.
In short, I have negotiated a peace with my limitations, with death, and with living with ARVC and heart failure. “Negotiated,” because it’s an ongoing process to love myself and accept my condition when setbacks occur.
One aspect that has been helpful is to know my body. With heightened awareness of my heart rhythms and body feelings, I have an acute sense of when something is “off,” relative to times when I felt better. This gut feeling is so critical. When I feel “off,” I know how to begin again – with self-compassion meditation, healthy food, time in nature, and, most importantly, rest. That way I can enjoy the activities I love, like walking my dog, golfing, fishing, and kayaking. And if things don’t go back to how they once were, I have the mindset to try to accept my “new normal” with loving compassion.
My journey with ARVC and heart failure has been a long one, but I am not alone. On my train I have the best drivers and engineers: the doctors and medical team at the Peter Munk Cardiac Centre always find the smoothest, and safest, routes for me to take. Working in partnership with them, I know I have the support to go the distance.
And to enjoy the journey along the way, I have filled the passenger cars with my partner Karin, my friends, and my family. No matter the destination, I am determined we will appreciate the trip together. I will do what I can do, for as long as I can do it, for now.
It’s been one heck of a trip so far.
Do you have the desire to see the world, but not the pleasure of doing so? Have you been bitten by the “Travel Bug” or is it preferable to be in the comfort of your own home? I am a mixture of both: there is the love to see new places and things, yet it is peaceful and comforting to be in my own surroundings. Lately, globetrotting has been on my mind. Perhaps I am thinking about traveling because my eldest has taken a trip abroad, solo, for the very first time. Maybe, because in a week, I will be visiting my former roommate from London. Although she lives in the USA, her home is far enough away for me to have to fly. The mixture of memories from our adventures together, combined with the fact that this will be the first long trip I have taken in 21 years, for fun and by myself, is exciting!
When my siblings and I were young, our parents introduced us to traveling, domestically and abroad. The first trip I remember taking, not counting our yearly drives between Manitoba and Ontario, was to Alaska. My father was an anthropologist. Alaska was central to all the research he had done for his PHD and the work he continued to do. Although I had lived in Kotzebue, AK at a very young age, I did not remember being there. Dad wanted us to see Alaska before the beauty was destroyed by a pipeline that was supposed to be built.
The summer of 1976 we left our cottage early to spend three weeks in Alaska. I was eight years old at the time and my memories are a little fragmented. These are the pieces of our voyage that I do recall:
On our way to Alaska we stopped in Vancouver to see friends we knew from previous years We ate salmon and corn on the cob An indoor pool was visited, where I jumped off a high diving board for the very first time
In Kotzebue, we watched Nadia Comăneci on the television as she won a gold medal, at a house I don’t remember, but memories of the couple who owned it linger
Kivalina is the place I remember most A village on a small island My family stayed in a house, that felt like home, On this island, we…
…drank TANG and played with the kids, from the village, under the midnight Sun
…Picked wild blueberries
…looked for puppies under the houses
…Walked to the furthermost part of the land, that seemed like the edge of the world, and looked over an endless sea – Russia the nearest country
Last I remember how we spent a day with my namesake (my father’s best friend),in his boat on a river, going ashore and skipping rocks
Anchorage, I don’t recall whether it was in the beginning or the end We were invited to dinner at someone’s house A friend of my parents or a friend of a friend?
The ferry took us to Seattle It felt like many days We probably stopped and saw some towns, But I only remember finger crocheting a hairband
Over the years, our parents enabled us to see a world greater than our own back yard. These are some of the the places we went, but not all.
At age 11, France
In a cable-car we climbed up a mountain, where I stood at the top of the world with my very first camera.
It was at the panoramic view of Mont Blanc where discovered that I am somewhat afraid of heights.
We drove past fields of poppies in the Loire Valley that my mother wanted to capture with her camera lens.
Escargot, turtle soup and crème caramel, were some of the delicacies tried; the first and last of these new tastes weren’t desirable to me.
Great Britain
I had just recovered from at terrible case of the chickenpox that only a 13 year old could have. As we traveled, my sister and I shared a bed where (much to her chagrin) I left my scabs behind.
Through the highlands of Scotland we walked.
A “haunted” medieval castle was a place to stay, where we ate dinner like the gentry in the Middle Ages…with our hands.
Then in Ireland, not a rest stop in sight. Some of us peed (unknowingly) in a patch of stinging nettles, just off the side of the road… can you imagine?
Hawaii…
…the very next year, an island state my grandparents had sailed to years before. Their journey to Hawaii is where their love story began. My Ana and Apa took my family and my uncle there to celebrate a big anniversary.
We toured in a van, eight of us in all, to see the island and a volcano.
I recall a pink hotel, attempting to surf, hours on the beach, and an excursion deep sea fishing.
We were fortunate. The love to see and experience new places and cultures carried on after the family trips of my youth ended. In my late teens and through my twenties I loved traveling; this was during the late 1980’s-1990’s. Life was a lot different then: no social media, cell phones, or instant connection. We actually had to write letters or postcards. My correspondence typically started out: “I’m so sorry I haven’t written in a long time…” If our loved one’s were to hear our voice, the telephone office was the place to go: we would stand in line and wait until it was our turn to make a call. I don’t remember why this was. Some countries had readily available pay phones and a collect call could be made.
Now, as my daughter is traveling with no one we know, no cellular data, and only the possibility of Wi-Fi connectivity there was some anxiety on my part. I heard from her within the first 24 hours. My mother would go weeks without hearing from me…If I had only known the unease I must have caused!
As summer is starting, many of you hope to travel. With the rise in gas prices and airline issues this might not be possible. Although it is not the same as going on your own adventure, I will share some accounts of my trips; this will take place over several months with stories sprinkled in between (hopefully not just my own). For now, I invite you to play a game with pictures from some of my past excursions. This game called is called “where in the world”. It can only be played from my blog. Go to the comment section at the very bottom of the story. Depending on how you are viewing this, you might see “leave a reply” or “leave a comment”; this is where tell me the location you think the picture was taken. The photos are numbered. This what to do, if you want to guess: 1) write the number of the photo and 2) write the location where you think it was taken. There are no prizes, just the satisfaction that you are right! Good Luck!
Over the years my family has enjoyed playing The Game of LIFE. On your first turn in the game, you choose one of two paths: 1) Start A Career or 2) Start College. In my family, my eldest always chose to start college, my middle child continually selected the path to start a career. Whether the rest of us picked a typical path I don’t remember…..
Not everyone has the opportunity to go to college. My children are fortunate because the path to higher education was always a choice. My eldest planned to go to university. The two us us went on some fun road trips to find the “right” school. We traveled well together, both of us enjoyed waking up and exercising before our day started. With the exception of my snoring, we were compatible roommates. Walking to explore nearby restaurants, stores and neighborhoods, in order to get a good feel for the area, was something enjoyed by us both. Despite the lack of pictures I took on these excursions, I do love a good road trip!
The first trip, in the spring of my daughter’s 10th grade year, took us to Massachusetts. Our first tour, on a sunny day, was at The University of
Massachusetts. Later that day, when we arrived in Boston, my daughter and I took a walk through the North Eastern University campus just as the sun was setting. After a morning of drizzle, The second tour was taken at Tufts University. Last, we strolled through the Harvard campus. Sometime during or just after this trip, my daughter said, “Tufts is where I want to go!”. In my mid twenties I had lived fifteen minutes from this school, so secretly I was happy with this prospect and could picture her there.
My daughter and I went on the next college tour in November of her junior year. The week before Thanksgiving, we headed to New York: first to Ithaca, then to a small town called Canton. Our last stop was to be Syracuse. Although lake effect snow was called for, we set out under a clear blue sky. Arriving at dusk there was no snow in sight. The next morning, the two of us went running: my daughter was in front and I trailed behind. Wet snow began to fall. That morning, through our tour of Cornell, the snow increased. After lunch, my minivan (with no 4 wheel drive or snow tires) headed to Canton. The snow became heavy and I drove at a snails pace. Finally, after an anxious drive, our hotel was in sight. After a good dinner, it felt nice to lay my head down and go to sleep. When we awoke, the ground was blanketed with about 7-10 inches of snow. While the snow fell, a private tour was taken at St. Lawerence University, my eldest child in her fashion boots, and I wearing my snow boots. Upon returning to our hotel, I lamented to the courtesy workers that we were supposed to leave the next morning to go to Syracuse. Our destination didn’t
look hopeful. I also worried about not having a room booked in Canton, but was told that there was a special “stranded” rate. Stranded we were! The room and tour at Syracuse were canceled. The excitement of the snow made this my favorite trip!
The last trip for her college tours was during the spring of my daughter’s junior year; these were to Pennsylvania colleges. Some schools were in the Philadelphia area: Haverford and Arcadia; two in the Lehigh Valley: Lehigh University and Lafayette College; then Franklin and Marshall College, in Lancaster. The Philadelphia schools and the Lancaster school weren’t for my eldest child. The schools in the Leigh Valley, suited her more. Even though I grew up in Pennsylvania, I had never been to Bethlehem, PA. We found a few good restaurants and enjoyed the town. Although this trip was fun, it made me a little sad because It signified and ending of sorts.
The spring my eldest graduated from high school my middle child finished 8th grade. I was worried that in four years time we would have two graduations on the same day….Life has a funny way of changing.
In the late summer of 2018, my eldest packed her bags and went to Tufts. Despite the stress of things that were happening within her families and the occurrence of COVID, my daughter excelled in her studies and made good friends. Within days, she will graduate Summa Cum Laude. We will celebrate with other families and with her friends. I am proud to see the strong, self sufficient woman she has become!
Although I have had the pleasure of taking road trips with my middle child, they weren’t college tours. There won’t be another graduation to contend with this year. My second daughter’s life took a turn the summer after 8th grade. I am in awe of how far she has come these past four years. Last summer, just before senior year, she decided to end her time in high school. With one more test to go, she should be receiving her GED very soon. That will be something to celebrate! Like in The Game of LIFE, she has chosen a not to go the college route.
I have learned that life can’t be planned; something inevitably changes and this is ok. Celebrate all the little things in life, no matter where the road takes you. Most of all, don’t be afraid to follow your own path!
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