Novelette’s Story| Thriving with EB

You can watch the full video of Novelette’s Story here (or down below).

Novelette’s Story

Butterfly child

Each day you wake to a tainted frame

Wings so fragile you can hate how maimed

How hard it can be enduring all your pain

How lonely it can feel that no one understands your frame

Becoming a poet

I started writing poetry when I was in middle school. Poetry’s helped me to process my life and process my struggles, my joys, my fears, my sorrows. So it’s always been a source of strength and a way to just figure things out. Trying to make sense of the senselessness that can be life sometimes.

Helping others

I volunteer with an organization called the Scarborough Centre for Healthy Communities. I’m a peer grief facilitator. I’m not a counsellor or therapist, I’m just a volunteer who was at a point on my grief journey where I feel willing and able to walk alongside others on their grief journeys. Because of EB, a lot of friends of mine have passed away. The volunteering I do at least helps me feel like even though it’s hard missing all the people that I miss every day, that at least I can use it in a productive way.

I am a poet, I am an analytical thinker and I am a passionate advocate for grief literacy.

My name is Novelette and I am thriving with EB.

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