There are certain words in the English language we use so often that we forget what they really mean. For example, when was the last time you used the word “literally” when you were clearly exaggerating? Or said something was “awesome” when it was far from awe-inspiring.
Another word that often gets used outside its true meaning is “compassion.” More and more I hear this word used to mean feeling sorry for someone; however, compassion means a lot more than that. It is actually derived from two Latin roots: passion which means “to suffer” (think of the passion of Christ), and com which means “with.” When we are compassionate, we suffer with someone. We walk alongside them and feel what they are feeling in an intimate way.
When I think about compassion, I think about my dad. He was a man who was full of compassion, and I have been blessed to not only receive compassion from him, but to give it back to him as well.
When I was a little girl I hated going to bed. I am the youngest of six, and whenever I was told it was my bedtime, I was convinced that everyone else was staying up late playing games and having fun without me. I can remember several nights when I would lie in bed crying and staring at the ceiling, convinced no one cared about me.
But then I would notice a sliver of light as my door cracked open, and my dad would be standing in the doorway. He wouldn’t get me out of bed — he knew my mom had decreed bedtime and that he had no power to undo it. But he would lie beside me while I cried and would make sure that I knew I wasn’t alone.
Last June I was given the opportunity to return this compassion when my dad passed away after a yearlong journey with brain cancer. Dad’s illness slowly took away his ability to use his body. First he could not move his legs, and then his arms became too clumsy to be useful. Eventually he could not speak, but his eyes still lit up every time he saw me. Although he was completely dependent on his caregivers, it was clear that every moment he spent with his family was worth living.
The final weeks of dad’s life were filled with suffering, but my family and I stayed with him, knowing he needed us by his side as he completed his journey. We kept track of how often he was turned in his bed; we planned parties at his care home so he would feel involved; and we told lots of jokes to keep him smiling. In his final moments my mother, my aunt and I sang his favourite hymn to him, knowing we had cherished every moment that had been given to us.
In those moments, I finally understood why my dad had laid beside me so many times when I was a child. When you love someone, your decision is made for you: you are already experiencing their suffering whether you want to or not. The only choice you have is whether or not to open yourself to feel this pain and commit yourself to being present.
If there is one other thing I can say about my journey with my dad, it is that our suffering as a family would have been considerably eased if we had had access to hospice care. Dad lived his final three months in a long-term care facility that was staffed by awesome (in the truest sense) people, but they did not have the resources they needed to give him the care he deserved. A hospice would have provided him with simple yet critical care: regular baths, an opportunity for home-cooked meals, and more frequent visits from a specialized physician as his condition changed.
People with illnesses similar to my dad’s need a type of care that can only be provided by hospice care, something that is currently sparsely available in Saskatchewan. However there are projects underway to try to improve access to this type of care. Contact the Hospice Palliative Care Association of Saskatchewan to learn more about how you can help ensure families are given the support they need to journey compassionately with those they love.
Compassion is so much more than wanting to end another person”s suffering. It’s having the courage to walk down a path that all of us would prefer to never have to walk down. True compassion — true love — is lying with someone in the dark when there is nothing else you can do.
Deutscher holds an MA in Public Ethics from St. Paul University in Ottawa. She recently attained a PhD in public policy at the University of Saskatchewan.