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What Makes a Full Life? A lesson in Change
By Emily McDonah
At the age of 28, with two toddlers running around our home, in one fell swoop I went from a healthy and able-bodied adult to one riddled with tumours and a heavy medical diagnosis. After a flurry of tests, appointments and surgeries, I was diagnosed with neurofibromatosis type 2 – a genetic disorder that leads to the development of tumours along the nerves throughout the body, chronic pain, nervous system dysfunction and often resulting in the loss of hearing due to tumours developing on auditory nerves. Prior to this, neither my husband or I were really familiar with chronic illness or disability. What lay ahead for us was change in more ways than we could have possibly imagined.
I’m nearly a decade into this diagnosis and I can’t think of a single aspect of my life that hasn’t changed as a result of it. My relationships have changed, my parenting, my activities and hobbies, my interests and passions, my outlook on life. I was forced to slow down and re-evaluate my every move; to pare down and be intentional about every spoon I used in the run of a day.
From a very young age, independence and work ethic played a huge role in my sense of self and my self worth. They were a point of pride. This illness that saw me laid up regularly following surgeries, coping with immense pain levels most days, exhausted and struggling with my mental health, pushed me into a long period of grief and eventually a re-imagining of what a full life can also look like.
While I do still grieve the loss of my active body, I’ve largely grown to love and respect the vessel I’m in for the miraculous job she does at keeping me here with my family, and allowing me, albeit in new ways, to enjoy this beautiful world I am still very much a part of. I’ve learned the value of boundaries, the gift of rest, and the religion that is gratitude. With these lessons firmly entrenched in my day to day, my outlook has changed from one of fear, underachievement and resentment to contentment, balance and grace.
A full life no longer rests on a fruitful career for me. My success isn’t measured by the idea that I must always be busy anymore. I have a new list of boxes to tick in the run of a day, and thanks to very open communication (and listening) with my family, we all understand this shift. The boxes? Listening to my body, getting outdoors, communicating with loved ones, setting boundaries – each of those with a side of grace. Accepting the unpredictability of any given day allows me to make hay when the sun shines and to fill my down time in ways that feel good (for me that might look like sitting quietly outdoors, reading or crocheting). I am learning to see the value in those moments (or days or weeks) too.
When our lives are upended by illness, we’re given an opportunity to see life from a new vantage point. Don’t get me wrong, the days are hard. Chronic illness is exhausting and challenges us in so many ways. But I think it also allows us to appreciate the little things; to be more present, to value small pleasures, and to truly welcome each day for the gift that it is. Change can sure be hard, but it can also be rewarding. Here’s to allowing ourselves to see the reward in the changes that come our way. Afterall, while we don’t necessarily choose the way our paths take us, we certainly make the choice everyday to get up and keep fighting, we can also make the choice to allow ourselves to soak in the goodness, whatever that may be.
Full post recording by Jenni Pettican