Novelette Munroe
I was born with this genetic skin condition called Epidermolysis Bullosa (EB) which is quite rare.
There are not a lot of people with it in the world. And when I was five, when I met someone
with EB, and I found that experience very fascinating.
It was just like seeing myself, outside of my body and knowing that it might seem you are
different, at the end of the day you were not that different after all. So, when I had the
opportunity to learn about skin conditions in a camp, I took it and went all the way to
US. It was a scary experience, travelling without my parents for the first time and using the
internet for unique experiences that are always tricky. My mother and I cried while dropping
me off at the airport but it was okay.
I went and met people with EB, and it was a very validating experience and all these unique
experiences that I thought was unique just to me was the same for, someone else around the
world. It felt like I am not so different, that there are other people who are tagging along, doing
their own things. I kept going to the camp to stay connected and met many people that I really
admire and inspired by that share the same condition like me. They were like my sisters, my
best friends.
We tend to lose friends over time, especially in the EB community. It is a unique and heartfelt
moment since it’s not something a teenager or a 20-year-old typically thinks about. That their
life will be cut shorter than the average person and so it was something I had to think about.
And then, be there for my friends as they experienced all their ailments that eventually took
their lives and wonder at the same time when that would happen to me.
Losing my friends was like losing my compasses. I had no direction to head towards and no
means of getting there. But finding SCHC changed that. I found meaning in my sorrow. I found
usefulness in my pain by becoming a Peer Bereavement Volunteer.
When I came to the Bereavement Centre, I felt heard and understood because they took time
to hear my story. I felt safe to continue the process and join as because I felt like they really
cared about my plight. So, I put my trust and tried to go to groups or have individual
counselling.
The first step is to pair up with a volunteer for around 10 weeks. My volunteer was very
thoughtful and caring and unique personality. I felt like he understood where
I was coming from as he had his own experiences. It was a validating feeling. Even though our
stories were unique, our experiences with grief were similar.
Suddenly, my pain meant empathy for others. A brand of usefulness that was more for me than
it was others. The power in that usefulness keeps me going by giving me something to live for. I
now wear my grief as a badge of honour because I belong to a human club that means love as
much as it means sorrow. The people I have worked with here have made me feel this way and
I am thankful to have them in my corner.”
Novelette, 2020
(Quotation and Story Shared with Permission)
While receiving HPC services, Novelette remains an active member of our volunteer team. She
provides telephone support to bereavement care clients and assisted with our first virtual
volunteer training: Peer Bereavement Support in times of COVID-19.
For more information about the suite of services offered through our Hospice Palliative Care
team, please contact 416-847-4111 or visit our website www.schcontario.ca.
There are not a lot of people with it in the world. And when I was five, when I met someone
with EB, and I found that experience very fascinating.
It was just like seeing myself, outside of my body and knowing that it might seem you are
different, at the end of the day you were not that different after all. So, when I had the
opportunity to learn about skin conditions in a camp, I took it and went all the way to
US. It was a scary experience, travelling without my parents for the first time and using the
internet for unique experiences that are always tricky. My mother and I cried while dropping
me off at the airport but it was okay.
I went and met people with EB, and it was a very validating experience and all these unique
experiences that I thought was unique just to me was the same for, someone else around the
world. It felt like I am not so different, that there are other people who are tagging along, doing
their own things. I kept going to the camp to stay connected and met many people that I really
admire and inspired by that share the same condition like me. They were like my sisters, my
best friends.
We tend to lose friends over time, especially in the EB community. It is a unique and heartfelt
moment since it’s not something a teenager or a 20-year-old typically thinks about. That their
life will be cut shorter than the average person and so it was something I had to think about.
And then, be there for my friends as they experienced all their ailments that eventually took
their lives and wonder at the same time when that would happen to me.
Losing my friends was like losing my compasses. I had no direction to head towards and no
means of getting there. But finding SCHC changed that. I found meaning in my sorrow. I found
usefulness in my pain by becoming a Peer Bereavement Volunteer.
When I came to the Bereavement Centre, I felt heard and understood because they took time
to hear my story. I felt safe to continue the process and join as because I felt like they really
cared about my plight. So, I put my trust and tried to go to groups or have individual
counselling.
The first step is to pair up with a volunteer for around 10 weeks. My volunteer was very
thoughtful and caring and unique personality. I felt like he understood where
I was coming from as he had his own experiences. It was a validating feeling. Even though our
stories were unique, our experiences with grief were similar.
Suddenly, my pain meant empathy for others. A brand of usefulness that was more for me than
it was others. The power in that usefulness keeps me going by giving me something to live for. I
now wear my grief as a badge of honour because I belong to a human club that means love as
much as it means sorrow. The people I have worked with here have made me feel this way and
I am thankful to have them in my corner.”
Novelette, 2020
(Quotation and Story Shared with Permission)
While receiving HPC services, Novelette remains an active member of our volunteer team. She
provides telephone support to bereavement care clients and assisted with our first virtual
volunteer training: Peer Bereavement Support in times of COVID-19.
For more information about the suite of services offered through our Hospice Palliative Care
team, please contact 416-847-4111 or visit our website www.schcontario.ca.
