A ripple in the water
Personal Stories | October 22, 2021 | Mary Lou Bethune
What’s it like to ask your health specialist about your life expectancy when your condition worsens? Mary Lou shares her personal and honest experience of what it is like to know you have limited time left, how friends and family react in different ways, and how the knowledge of medical assistance in dying has given her unexpected peace of mind.
As I sat across from my respirologist that morning of my appointment I had a feeling that something was different about me. I had been feeling physically different lately and I had become more aware of my breathing and the fatigue I was experiencing with it. I felt that my prognosis of pulmonary fibrosis a few years ago had landed squarely at my feet. As the specialist spoke that morning, I internally struggled with whether I would ask a question about my life expectancy, and wondered how I would word it. It is not an easy question and one you wonder if you truly want the answer to, but it was something I felt compelled to ask. As the appointment was drawing to a close, I somehow drew up the courage in the moment and asked the doctor how long I might have? The doctor was very kind and replied that perhaps I could see the other side of five years, IF, IF, IF. And now I knew, the words were spoken out loud and surprisingly there was no dramatics on my part, no tears, at least at that moment. I thanked her politely and we concluded our appointment.
As I walked out of her office, I felt strange, I think I was experiencing a form of seriality. I passed a nurse in the hallway and thought she would know what I had just faced, that she had somehow heard the words the doctor had spoken, but of course that was unrealistic. She carried on her way and I carried on with mine. Next, I encountered an orderly pushing an empty wheelchair. I thought he might greet me with a sad expression, but he had things to do and didn’t take any notice of me.
My boyfriend picked me up outside the hospital and asked how did it go with the doctor? It surprised me when I could only shake my head, I felt that I couldn’t bring myself to tell him what the doctor had said. He chooses to give me the space he thought I needed and I choose in the moment to think his reaction was that he didn’t really care. I couldn’t say out loud the number of years to him. I realized then that I cared more for him than I thought, and I realized I was afraid of his reply. I felt so fragile.
I then proceeded to tell my family and friends about my prognosis. In all honesty I was expecting my family and friends to show real sadness or outrage, or dramatics, to feel that my life expectancy affects them and that I matter to them. That’s not at all how my conversations went. Of the people that I told, I have had only one friend that cried, and I cried with her, as I was trying to comfort her over a breakfast table at the Subway. It was only the two of us that morning and there are times over the years that I think it has always only been the two of us for conversations of such substance. Her reaction was exactly what I had been craving and not realizing. I felt in that space of time that I would be missed, I mattered. This was my ripple in the water moment. Thank God I have one.
Other close friends each in their own way expressed their feelings, they were uncomfortable, that’s to be expected. The conversations led to trying to make me feel better, again not unexpected, and it was truly appreciated. However, turning a positive spin on a topic like this isn’t what I could wrap my head around at the time. They were being wonderful friends, they had no idea what I was looking for them to say, because I myself had no idea what I wanted to hear. It’s impossible to put into words what I was looking for and harder still to judge the people I care about for their reactions. I needed to sort this out in order to move forward in my new reality. But my new reality was yet again to change.
A very short time later, and very unexpectedly, my boyfriend whom I had just mentioned, died suddenly. I was devastated and shocked at his passing. He had been my main support and relentlessly told me how no matter what was happening to me he would stand with me and would never leave me alone. I relied on him so much and I felt that together we could see this through. I know that he had meant to keep that promise and I had meant to tell him what the doctor had said in terms of time remaining. Now neither one of those things will ever take place. I was alone again to face this, and it terrified me. Being alone is something that I struggle with and don’t naturally feel comfortable with.
I had lost my husband three years ago to a sudden heart attack on a golf course. When I had been told at the hospital that he had not made it, I had what was referred to as a “broken heart phenonium” It is very rare, the adrenaline had attacked my heart and literally blew it up. I was rushed to the hospital by ambulance in Halifax and later returned to Kentville where I was to spend a week. I was left in a very weakened condition and required to take a lot of meds. It literally changed my life. I was now a widow and had had a serious heart event that complicated the fibrosis to a new level.
I had so many things to learn and adjust to. One decision that I will never regret is that I moved to a new duplex on a street of wonderful and caring people after the death of my husband. One of the people I first met was a retired nurse who has experienced many of life journeys of her own. Her husband was a very prominent doctor who fell ill too soon after his retirement and she was a great comfort to him as well as his main care giver. Through a great deal of research and reflection, he had decided to access medical assistance in dying. It would take a number of years for this to be passed into law and in September 2016, he became one of the first Nova Scotians to choose this option.
I listened to Sylvia’s story and was moved by her reflections, I also read what was available to me online. Anything that I could find that related to this subject. Sylvia and I also had informed conversations over coffee and my reaction to this topic was a sense of great relief and a hope that I perhaps could qualify for this program. I have taken some initial steps toward this process. I have informed my doctor and children of my wishes so they can understand that this is something that I have given a great deal of thought to. My children were wonderful and let me know that they were supportive in my decision. I have done some things right in my life the doctor has flagged my records so as to show my intent.
I’m not sure what twist and turns I will encounter on this journey of mine. I want to learn as much as I can about the medical assistance in dying program. I feel that knowing that I can have some control over my dying has strangely made me feel a huge sense of relief. I feel so blessed to know that people have worked so hard to clear this path for all of us and all the stories that are out there, I thank you all.