The one truth I know for certain is we are all going to die. We have all heard that joke that the only two certain things in life are death and taxes, but it feels like less of a joke the more you really think about it.
I am trying to control my death. I take over 40 pills a day to prove it.
I dedicate the majority of my waking time to living a high quality life. What makes a life worth living? This is a complicated topic with a complicated answer.
If we wrote a list of all the things we need to have a quality of life, what would they be? How do we each define quality of life?
The definition of quality of life is the standard of health, comfort, and happiness experienced by an individual or group. But those are all terms that are a little different for everyone. One person might believe that having children is essential to happiness in adulthood where another person might instead feel the most comfort and happiness in their career. Others see quality of life as being closely tied in with community, where you assess your own comfort and happiness levels according to what is happening to people around you. Others are more focused on themselves or a smaller group of people.
I was first asked to assess my own quality of life a few months after my diagnosis. The doctors knew my life, and therefore my priorities, was forever changed and that my death was likely to happen anywhere in the next one to ten years. So, their goal is not to kill my cancer, as I have too much of it and chemo would end up killing me before it killed all my cancer. The overall goal is to help me to live the best quality of life possible, whatever that might be.
From their standpoint it mainly means to live without pain (that is the goal, but not possible for most people in my position). More realistically, it is to be comfortable enough that on a pain scale of 1-10 (with 10 as highest), my goal is to be at a 2 for as much of the day as possible. Having a pain of 10 is when it is so severe that I would rather die than live with it. I have reached 10 six times, and each time I was in so much pain I could not even talk or cry. It was scary to be in that kind of pain. Anything above 8 is debilitating and feels extremely scary.
Generally, I do reach my goal of being as low as a 2, but at least once weekly I will hit closer to a 4.5. When this happens, we pull out all the tools we have, both painkillers and alternative methods of pain reduction, to lower it back down.
Secondly was my mental health, which for the first two years I was doing okay. I was on antidepressants and sleep aids, but life seemed manageable. The third year is when I had my mental breakdown, which was equally a 10 on the emotional pain.
I was desperate for any help and my doctor was my saving grace who helped rejig my antidepressants. But they also got me to see value in talk therapy and peer group support. Both of which were life changing for me and I continue to spend five hours every week focusing on my mental healing and health, and four hours each week doing exercise with a specialized trainer. Plus, recently I have started taking Concerta**, a pill to boost my energy so I can stay awake from 11am to 9pm with an hour nap in between. Although I still am mostly in my bed, I can at least be awake and have the energy needed to take care of showering, dressing, and to spend time on my writing (my newest hobby).
It also gives me the time and energy to think of these bigger questions, like those surrounding my quality of life and what I want the remainder of my life to look like.
Have you played the game Would You Rather? Through my years of playing this game, one of the top scenarios played is: Would you rather be blind or deaf?
Majority of people I have played with have picked deaf. I would agree. For me, the thought of not being able to see what I already can see feels really scary, as if one of the main ways that I connect to the world around me were to go dark. How would I interact? So much of our day-to-day items are vision centric. Millions of images are sent to our brain.
I think that I just have more of a frame of reference for what it would be to lose my hearing. I have had moments when I couldn’t hear the world around me, because I was wearing headphones, underwater swimming or in a loud place where it was impossible to filter out all of the sounds that were happening, and still moved forward without fear. I find that I am instantly more disoriented when I lose my sight, maybe from being in the dark or looking directly into a light.
I hope that no one will be offended by this example. But I have committed that my writing will be as honest as I can be, given the idea that I am not a strong enough writer to always accurately interpret my thoughts without the potential for misunderstandings.
What I am trying to say is that I think our quality of life is very tied to those elements of our life that feel constant and secure. While it can be great to wish for me, it is about being content with what we already have as well. If I were to go blind, I would feel like a part of me had already died. I don’t think that I could go on with the same quality of life that I feel now.
Another question: What if there was an artificial intelligence that could ask you a series of questions and determine how close you were to living your peak quality of life? Would you want to know how close you are?
And what if your results also included a list of all of the things you are doing that are diminishing your quality of life and what changes you could make to increase it? Would you still want to know?
Lastly, what if by agreeing to this experiment, you were forced to try to improve your quality of life by implementing every single suggestion. If you fail or skip one, your are punished with a premature death?
Would you use the program?
I believe through research and observation that there is no greater enemy we face than ourselves. So many of us might die an early death. We like to self sabotage and opt to feel like a casualty rather than the person in the driver’s seat. Maybe, in some messed up way, that is what makes life worth living: The ability to feel sorry for ourselves might bring us joy.
What would the questions that determine our quality of life be? And remember this is run by artificial intelligence technology is so advanced that it also verifies your answer with your subconscious, and if you are not aligned it signals that in your results.
We continue to make bad decisions when it comes to our wellbeing. So, knowing that, would you sign up for this program and take the risk it could show vulnerabilities you have hid even from yourself?
Throughout much of my adult life, my definition of quality of life was determined by my career and what I wanted within business. So, I originally approached the idea of quality of life like a business case even after diagnosis. I included numerous inputs, a benefit analysis, benchmarking, stakeholder management, risks, and numerous other variables.
But as time has gone on, it has become more simplified and less about the details. Rather, my current definition is more about what needs we all share and I most want that feeling that my life has been worthwhile.
My list of the measures of quality of life is not as quantifiable as it once was. It can be confusing to see if I have reached the benchmarks and they might even feel like they move over time. But this is my list, as of March 8, 2022:
- To be loved.
- To give love.
- To be at no more than a 3 pain level.
- Mentally to feel in control of my life.
- For my mind to work creatively and see things differently than others (this one is currently a struggle and i feel very sad about it)
- To be emotionally stable. (I work on this daily, but lacking creativity is starting to affect this.)
- Laugh as much as possible.
- Feel joy.
- Not worry about finances.
- Give more than I take. (This is another one where the balance steadily goes in the other direction, where I fear one day soon it will mostly be all take and all I can give is my presence and my love.)
- Forgive past trauma and hurt.
- Be grateful.
- Experience and give physical touch.
- Not feel lonely.
- See and feel nature.
- Have hobbies to pass the time.
- Feel a higher presence.
- Continue to learn.
- Look fashionable and stylish even in my pjs.
- Have enough awake hours in a day to experience living.
- Have enough energy to get through the hours needed to do more than live, but have a life.
And then there are the most important items on my list. But, these are ones that I have the least control over, as they have to do with others. I want the people in my life to:
- Have healthy minds, bodies, and souls.
- Experience and seek joy, even if it is fleeting.
- Feel the love of another person and to love a person so deeply it hurts, butterflies in the stomach and all.
- Have the resilience to overcome failure, change, a broken heart, grief, and sadness.
- Say more yes’s in life then no’s.
- Be kind to themselves and be their own best ally.
- Forgive themselves and anyone who has hurt them.
- Never take themselves too seriously.
- Always be open to new ways to learn about everything and anything.
If I were to have all of the above until my last day on Earth, I would be grateful. But I know that change is the only constant in life. So my list will continue to change and be revised as I go along. For now, I am in a good place and have a good quality of life.
I hope with this read, you take a minute to make your own list of the things you need to have quality of life. Keep in mind that it will change, even a little day to day. But what are the most important things to you today, in this moment?
~ Karla xo
Karla Stephens-Tolstoy has stage 4 chronic cancer, diagnosed in 2018. She is Her2 negative, IDC. She takes 50 pills daily, including Ibrance and letrozole, her cancer fighting pills. Karla is the co-owner of the online store StandUpSpeakUp.ca with her son, Zach. Through this venture, they are proud donors to various charities. All proceeds of their limited edition Healing and Empowerment Scarves are donated to Wellspring Cancer Support Centre.