On my way back from Montreal the other day, my sister and I passed an inuksuk high up on the rocks of the 401.
For me, the inuksuk proved to be a different kind of “directional marker.”
It’s been a rough week. The medical nightmare that was my early childhood seems poised to reoccur, and I’m actually not sure whether it is a good thing if the high protein diet I’m on works or not. If it does work, and the left ventricular wall of my heart shrinks, then my doctor wants to consider putting me back on nasal gastric (NG for short) tube feedings throughout the night.
NG tube feedings, for those of you who are fortunate never to need them, basically involve sliding a tube down your nostril, swallowing the tube when it reaches your mouth so it goes down your esophagus (needed the spell checker for that one) and threading the tube further and further down until it reaches your stomach. Then, the end outside your body is hooked up to what is called a kangaroo pump, which is nowhere near as fun as it sounds like it should be. Once hooked up the body then receives a constant supply of protein liquid all night long.
After I heard about the possibility of further NG feedings I was not in the best of moods. This state of mind was also affected by my finding out three of my favourite paintings I’ve done have been damaged by water and mold and may not be salvageable.
I was feeling low. Still, once I hit Friday, things were looking up. My sister had invited me to go to her friend Peter’s wedding with her in Montreal and we left Friday afternoon.
Since I still live in my parents’ house, the trip meant a sense of freedom. I felt free to be who I wanted to be without obligation or preconceived ideas. It was like… being back in university. I decided to forget my sick persona. No one needed to know about my illnesses and I could interact with people as I wanted because I didn’t have to worry about seeing them again.
As a result, once I got over my initial shyness at the reception, I had a lot of fun! Peter and his wife Haizen are both Chinese so there was a 10 course Chinese meal of real Chinese food, not American Chinese. Usually I am a very picky eater but I decided that I was going to try everything because we were in Montreal and when were we ever going to have this experience again?
Somewhere in the midst of going over the day with my sister that night I realised something I had forgotten. Since my medical matters started requiring more maintenance I thought that if I could just create a schedule for myself detailing when and how long I should sleep, what I should eat and when – nail down all the little pesky hygiene requirements into times – then I could control things and be happy. Except trying to do that didn’t work since I was resisting my own efforts.
It occurred to me that in my efforts to live a safe and controlled life, I had forgotten what makes life worth living to me. Experiences. Living in the moment, not being afraid to live and not letting myself become defeated by my illness. Instead I had became what I once feared, only an illness, no longer a woman.
I haven’t been focused on my quality of life; I’ve been focused on maintaining my life at all costs. And that, to me, is no way to live.
My inuksuk this weekend was pointing me to the need to develop a balance between caring for my body and caring for myself as a young woman. Sometimes it’s difficult to remember that underneath the illness there is a person who is like any other. Someone who has their own dreams and frustrations about life.