Emily McDonah - What Makes a Full Life? A lesson in Change

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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.