My wife lived life on her own terms. Her death was no different.
Personal Stories | July 13, 2018 | Lorne Levy
When Linda Levy of Toronto was diagnosed with chronic obstructive pulmonary disease in 2011, her health — and quality of life — deteriorated rapidly. Living with excruciating chronic pain and unable to do the things she loved, Linda began to explore her legal options and never once stopped advocating for herself. She became a member of Dying With Dignity Canada, she sent hundreds of letters to decision-makers in support of both the organization and assisted dying, and she refused to take “no” for an answer when her requests for an assisted death were denied by her doctor. In 2018, after months of trying, Linda was finally granted the right to have a medically assisted death.
This is her story, as told by her beloved husband Lorne.
My wife Linda always lived life with one guiding principle: she wanted to do things her way. It came as no surprise, then, that she wanted her end-of-life choice to mirror the way she lived. She made the choice to have a medically assisted death in March 2018, and both she and our son Mike requested that I tell her story so that others in unfortunate medical situations can see that there is hope. Ultimately, hope is at the core of Linda’s story.
Before we take a look at Linda’s final act — what I call her long and winding road — it’s important to go back in time to where it all began: when I met my soulmate, Linda.
Linda in the early ’70s, at the age of 30.
Linda and I both lived in the same neighbourhood in 1974, and I actually met her through her son Mike. I would always see this curly-haired eight year old riding a bike with a red flag on the back. We always acknowledged each other and soon formed a bond. Mike would share pop, chips, and tuna sandwiches with me, saying, “Mom has lots of food. She won’t mind.”
Enter Linda, who started noticing food disappearing at an alarming rate. After quizzing Mike, she learned who I was, found me, and put me under cross examination, eventually coming to the conclusion that I was harmless and that anyone Mike liked couldn’t be all that bad.
This is how our love, which spanned more than 40 years, came to be.
Throughout our decades together, I was able to appreciate what an amazing person Linda Levy was. She probably could have been the poster child for the “Art of the Deal.” She always fought hard to get the best deal and to get it in her favour. Not surprisingly, she had amazing street smarts to go along with her unshakeable confidence. Linda would have stood up to anything.
And this incredible woman loved me with all her heart and often said she would lay down her life for me. She loved our son, Mike, with the same intensity, and held a special love for her parents, whom she cared for when they were infirmed until the day they died.
Linda loved the solitude and calmness that came with being near the water. She and Lorne often stayed at a resort overlooking her beloved Lake Simcoe in Ontario (pictured).
Linda also had a real appreciation for nature. She loved walking outdoors, especially near Lake Simcoe, which she had loved from childhood. She was always such a healthy, productive, and dynamic individual.
But this all changed in 2011.
In March 2011, I took Linda to the family doctor for a routine visit. While there, Linda complained that she was having trouble breathing and started wheezing. I was instructed to take her to the hospital immediately. When we arrived at the hospital, I rushed her into emergency and she was admitted instantly. She was kept there for seven days.
It was there that Linda was diagnosed with chronic obstructive pulmonary disease (COPD). It was a pretty big blow for her, not only physically but also mentally. She started thinking about her own mortality for the first time in her life. Physically, there was not much of a difference yet, but she became winded more easily. She went from walking more than two hours a day to 1.5 hours a day.
In June 2011, Linda’s family doctor recommended that she check out West Park Health Care Centre in Toronto, which is primarily a long-term care facility, but also has services to help patients facing life-changing health challenges reclaim their lives. She was there for six weeks and was taught pursed lip breathing for COPD, and as a result of this, she was able to breathe more efficiently.
When she came home, she was given a DVD of breathing exercises about 30 minutes long that she did religiously every single day. Even when we went on vacation, she insisted a DVD player be in the room so she could do her breathing exercises before we started our day. I would even do them with her. Now, that’s dedication on Linda’s part. She wanted to get better for me!
Linda and Lorne both loved to get lost in Las Vegas. Here, they are pictured posing in front of a million dollars at a Las Vegas hotel in the mid-1990s.
A few years went by and I noticed increasingly that my Linda would get more and more winded and could not physically exert herself as much. Physical deterioration is just one of the symptoms of this nasty disease called COPD, along with chronic pain. It just wears your entire body down. There was never a part of Linda’s body that was exempt from pain. This prompted me to leave work permanently to tend to Linda’s well-being.
My wife woke up on March 8, 2016 and said that she could not breathe, so I called 911. Linda was taken to Humber River Hospital, where it was discovered that she had an acute exacerbation of COPD symptoms, including shortness of breath and severe blockage of her airways. Her heart was even affected.
Linda was released from the hospital on March 15, 2016. From then, she had to be on oxygen 24/7. Thankfully, she qualified to have an oxygen machine at home as well as portable tanks for outdoor use. She became much weaker when she went into the hospital, and when she was released, she could not walk without the aid of a walker. Her food intake also decreased quite noticeably. At that point, she was still able to go outside for walks when the weather permitted, but for much shorter periods of time than she was accustomed to. She was always an incredibly dignified person and often thought people were staring at her, with her walker and oxygen tank. She felt embarrassed.
Linda, on a typical day, getting lost in thought on tiny Briars Beach in Jackson’s Point, Ont.
Linda always lived a full life, but her quality of life really worsened at this point, diminishing day by day. She was on so much medication that it was difficult to keep track, and she could do fewer things on her own.
Long before her diagnosis, Linda always said to me that she didn’t want to be in this world if she didn’t have any quality of life. “I want you to make sure of that,” she would say. She meant it, of course, and started to look at ways to have a dignified end of life. Years ago, when I was young and foolish, I would never have supported those thoughts. But, as this hit closer to home, I had a complete reversal of fortune and fully supported her wishes. Who could argue with her plight?
During her research, Linda discovered that not every option was available or feasible. At one point, she even considered going to Dignitas in Switzerland.
Thankfully, an option became available right here at home.
Being a news hound, Linda quickly learned that Canada had passed Bill C-14, its medical assistance in dying (MAID) law, in June 2016. At around the same time, she came across Dying With Dignity Canada (DWDC), a not-for-profit organization that offers personal support to Canadians navigating their legal end-of-life options, including assisted dying. She joined DWDC around the fall of 2016. In her final year, Linda received valuable personal counselling and support from DWDC.
Also during that time, Linda pursued other means to get what she wanted. She strongly believed there was no teeth in the law and started an e-mail campaign, sending emails to more than 700 senators, MPs, MPPs, and MLAs. There were little to no responses, and the responses she did receive were disappointingly generic.
Linda obtained via the community care access centre (CCAC) a nurse practitioner, who made home visits every two weeks to assess her condition. This became very valuable because it was difficult for us to just pick up and go to the doctor. CCAC also assigned a chaplain who came every three weeks to look after the mental aspect of Linda’s debilitating disease.
One of Linda’s secret hobbies was going to flea markets. She is pictured here at a handmade jewelry booth in Toronto’s Distillery District. (Lorne bought her a handcrafted brass ring there.)
Several months went by and there were multiple occasions when Linda would go to her family doctor or respirologist and ask if they would assist her in her wish to die. They refused, saying that although she had a terrible illness, she wasn’t ready to die nor did she qualify. This occurred over several months. This was disheartening, both to my wife and to me. It was painful watching the love of my life’s health and quality of life decline so rapidly before my eyes.
The final act
By the time February 20, 2018 rolled around, it was difficult for my wife to even leave the house. When Linda finally found the strength to see our family doctor, he was quite blunt and stated that there was nothing more anyone could do for her. He did suggest, however, that she contact Ontario’s MAID care coordination service, which she did the moment we left the doctor’s office. She was put through to a person right away who talked to Linda for 20 minutes to determine if she could potentially qualify for the procedure.
My wife passed this screening and got a call 48 hours later from a doctor who was involved in the assisted dying process. One week later, the doctor, along with his associate, met my wife at our home and gave her an intense screening that lasted about 90 minutes. The process was very thorough. At the end of the assessment, Linda was told that she would qualify for a medically assisted death. All that was left for her to do was to go through a 10-day reflection period in case she got cold feet.
Linda was a deep thinker, especially in her later years. She was deep in thought when Lorne took this photo three years ago.
They then asked me how I felt about MAID. I said I was all for it, and although no man could love a woman more than I love my wife, I told them I knew there was no quality of life left for her. So I had to let her go, even though it still pains me to this day.
The reflection period ended, and my wife remained firm in her choice of an assisted death. She chose March 11, 2018 at noon as the day and time. After she told the doctor and his associate, we high-fived each other. Within our sadness, there was incredible joy.
The closing scenes
With the date and time selected, Linda knew she was out of timeouts and decided she was going to run out the clock. (She loved football.) We decided that this was going to be as private as possible since we were both private people. Only a handful of people knew how it was going to play out and this included our GP and her cousin.
Linda immediately contacted our son Mike and told him the plan. Mike was aware of his mother’s wishes, and although deeply upset, he said he would make the trip in from London, Ont. where he resided with his loving wife Kim. One amazing thing about Mike, and there are many, is that whenever his mother was really sick, he probably broke the sound barrier to make it to Toronto. This time was no exception and Mike did not disappoint.
In our last week together, Linda and I woke up a bit earlier than usual to have coffee in bed, which we never did, just so we could talk to each other for hours on end. It was during one of our talks that Linda decided she wanted to die in our bedroom. She also made sure to take care of other details, like calling the funeral home to tell them when to pick her up.
Linda, 72, with painful shingles in June 2017.
During that week, I told Linda stories about all the things we did together, both eventful and uneventful. I would always start by saying, “Remember the time when…” There was no shortage of memories since we had been married for 39 years and together for more than 40, and had done everything together during that time. We were inseparable. Our conversations during that week were often interrupted by intermittent bouts of crying.
Our last full day together was terribly emotional. We both said that we would love each other forever. That morning, Linda sent me a heart-wrenching email about our life together. The email was not written with Linda’s usual writing style since she was physically unable to write in full words and sentences at that point.
Mike and his wife arrived from London around noon that day. Linda signed her last cheque, giving Mike and Kim a trip to Israel which was later changed to Greece. I have never seen Mike cry like he did that day. They spent the afternoon and left us in the early evening, so we could spend our last night together.
For dinner that night, I got a full-course lobster tail dinner from a place called The Octagon. Linda ate the whole thing — two nine-ounce lobster tails and all the fixings. That night, we watched a little TV and went to bed at 10 p.m. We held each other like we never had before.
Linda with the two people she loved the most: her son, Mike (centre), and her husband, Lorne. This photo was taken in Dorchester, Ont. in 2013.
Then, on March 11, we woke up at seven a.m. and had coffee. Linda didn’t eat anything. She showered, wore a black Ralph Lauren blouse, a pair of leggings, and a red cardigan. Mike and Kim arrived at around 10:30 a.m., and we sat quietly in the den making small talk and waiting for the inevitable.
The inevitable came when the doctor and his associate arrived at the stroke of noon. He asked where Linda wanted her assisted death to take place and then asked one more time if Linda wanted to proceed. She said “Yes.” Linda, who was always so selfless, turned to me at one point and said, “I’m going now. I’m sorry that I ruined your life.” Once in the bedroom, the doctor described the process for us. Linda got in the bed and sat upright, with Mike to her right and me to her left.
Linda said how much she loved me and I told her that I would love her forever. Then she turned to Mike and said something about forgiveness. The doctor then gave the first injection, a sedative, and after a few moments, Linda slouched over a bit and mumbled something. Then, the doctor gave her a second injection, an anesthetic. Linda being her stubborn self, still did not go as is usually the norm. Finally, a third injection was given — a muscle relaxant — and my beloved wife was pronounced dead at 12:35 p.m.
Mike and I held Linda for a few moments after she passed, barely keeping our emotions in check. The same held true for Kim who was also in the room. I still to this day play that fateful day over and over again in my head. I know I had to let Linda go, but it does not get any easier. Linda remains the bravest person I’ve ever known and I know she is in a better place now. Even though there is now such a void in my life — it feels empty — I am grateful she was able to make this choice. She was priceless.
Dying With Dignity Canada is immensely grateful to Lorne for being so open and candid about his love story with Linda, her suffering with COPD, and her choice of a medically assisted death. We are moved by his courage.