It’s always a pleasure to work with Hospice. I first learned about their organization when my great aunt spent her last week in their care. I was amazed that such a place existed and was eager to see how I could support their efforts. Over the last few years, I have sponsored the Hospice Annual Fashion Show and I was honoured to be approached by the Art Therapy Department to document the incredible programs they offer. Like many of us, one of my greatest fears is death and being taken from the world too soon. But, as I spend more time working with Hospice, it becomes less worry and more about communication and awareness. I realized that talking openly made end of life more easy to accept.

I was approached by Nicole to shoot this campaign to highlight Advanced Care Planning, something I never personally considered. Like many, I assumed that my family would know what I would want and wouldn’t make decisions based on their own values or emotions. After talking with them, I quickly realized that they had very little idea of my wishes, if I couldn’t speak for myself. I jumped at the opportunity to be a part of starting the conversation about having the harder conversations. It is so important to KNOW.

The concept for this shoot took time to develop. There was a large team contributing to make this exhibition impactful. The goal was to show individuals with objects used to reveal their true self. Each person presented and allowed themselves to be vulnerable by revealing something important to them. While each participant has a different item and a different story, at the root of each story, the explanation revealed deep connections to their core personal values. Being aware of what compels these connections allows us to understand something real about each subject. In a sense, you start to know each person better from the one object they identify with.

Here is a full look at the series we created with Hospice Waterloo Region, Hospice Wellington and each subject. Without their words and time of everyone involved this could not have been possible. Each question has been answered with the exact words and structure of each subject. It is very interesting to see that everyone approached this differently…

Kingston

What makes me, me?
I love sports, and I specifically love playing hockey and baseball. I love it because I get to spend time with my friends and its so much fun! Even when we lose, which we do sometimes, most of the time we win which helps us forget when we lose. My position I play in hockey I play center and right-wing. In baseball, I play right and centre field.

What do people need to know about me in order to provide me with the best care?
I really love being active and doing fun stuff that uses my energy so I feel stronger and more confident in myself. Playing sports really helps me feel connected to my friends, that’s how we get to know each other, by doing things together. If we didn’t play together as much as we do, I wouldn’t know them as well as I do, and they wouldn’t know me.

If you have to make decisions for me, please remember this…
Please remember how much I love to be active. I would never want to stop being able to do that. People in my life are very encouraging, telling me “nice try” even when I don’t get it right the first time, I keep trying. When I keep trying my best, it makes me feel happy.

Emma

What makes me, me?
I like engaging in activities connected to school, specifically leadership functions with like-minded people, full of positivity and high energy. I find it hard sometimes in school with regular days which can make people lose faith and optimism. I try to carry what I learn in those leadership opportunities with me everyday to help keep me inspired. I don’t really see the point in being negative – I would rather focus on what brings me up then brings me down.

What do people need to know about me in order to provide me with the best care?
I value vulnerability and I try to be vulnerable with others, to show them that it’s okay to be real, to let yourself be seen. I know that it can be hard, it takes courage, so I try to have the courage to show my vulnerability first. I would like to break the mirror that people see, the things we hide about ourselves instead of being real. I find that I’ve grown used to being a mirror. I reflect back the actions, emotions, feelings and ways of those around me. As someone who really values vulnerability this is an unfortunate habit because I rely on others to be vulnerable first before being willing to express myself towards them. It’s a hard habit to break, putting yourself out there. I don’t want to be skewed by the mirror, I want to break down this mirror. When you get rid of the mirror it opens you up to, yes, being vulnerable but also to more personal and profound connections with others.

If you have to make decisions for me, please remember this…

I would like people to remember that I am not into judging others, I want to accept you as you are, and I hope that others can accept me as I am. I am honest, and real, and really value strong, authentic, connections with others. Please remember that I want to be connected with you, that the sound of music is so important to me, that I would always want to have music in my life, and that I would want to always be connected with you, so please be connected with me.

Nathan

What makes me, me?
I think my unique personality makes me, me – my sense of humour, my drive and ambition, and finally my ability to build relationships.

What do people need to know about me in order to provide me with the best care?
People would need to know that I care deeply about both my quality of life, and my independence. For me, a life of quality means being able to recognize and spend time with my family and friends, enjoy music enjoy food, and be active. Maintaining my independence for me, would look like being able to continue to make some decisions for myself, and to have say in my care. I am very close with my family, and I would trust them to make care related decisions for me, with my best interests at heart.

If you have to make decisions for me, please remember this…

If you had to make decisions for me, remember that I would carefully consider the impact of my decisions might have on those I love. And make a decision accordingly. If at all possible, I would want my immediately family members to make decisions for me, or for someone to make decisions in consultation with my immediate family members. I know my family would make the best decisions possible for me. I care immensely about my quality of life, and would not want to continue to live without being able to maintain it – and I would want someone who is making decisions for me to know this. If I could no longer enjoy time with my family and friends, and the personality traits that make me, me, were gone, I would hope that someone making decisions for me would know that this not how I want to live. I would want someone who is making decisions for me to have known me as a healthy person who as able to, at a time, make decisions for themselves.

Jessica

What makes me, me?
• my smile
• my sincerity and compassion for others
• my keen interest in always learning and sharing my learning
• my keen interest in competitive water sports
• my interest in music in all genres
• strong interest in the visual arts and being with people
• strong faith and spirituality

What do people need to know about me in order to provide me with the best care?
• My family is most important
• Be informed and apart of my care planning
• I will always welcome a network of people both formal and informal involved in my care
• To have choices that will include natural homeopathic medicine and traditional medicine

If you have to make decisions for me, please remember this…

• I would like art (Paint or colouring beside me)
• Always remember my family is important
• I have a gentle soul
• Having a Bible on my bedside
• Please always treat me with dignity even if I can’t speak for myself
• Like to have a shower and get dressed appropriately everyday
• Eat when I’m hungry
• Listen to music
• People present always (family and friends) – never be alone

Scott

What makes me, me?
I am curious and consistently crave opportunities to have a positive impact on those around me.

What do people need to know about me in order to provide me with the best care?
I am most happy while reading a book, travelling the world, watching and talking baseball, and spending time with people I care about.

If you have to make decisions for me, please remember this…

I want to contribute.

Elliot

What makes me, me?
I am the product of the experiences, emotions, relationships and conditions I’ve experience over the past 39 years. What makes me ‘me’ changes as time goes on, when I experience love, loss, joy and sorrow, this all builds on who I am, but who I am hasn’t actually changed over my life. I’d like to think that who I am and what makes me ‘me’ help to shape me, and expose who I am.

What do people need to know about me in order to provide me with the best care?
One of the most important things people need to know about me is that I like to feel loved, cared for, safe and surrounded by activity and people. I find physical touch to be extremely comforting, more so than words.

If you have to make decisions for me, please remember this…

I lived my life with no regrets, all decisions that I made I stand behind. When I ask someone to make decisions for me when I cannot, I have entrusted this to a person I trust and care for, and believe that the decisions that they might make for me, while sometimes difficult, will be the right decision for me, my family and the people who love me. I live my life as a proud and independent person, and want my care to reflect that.

Nan

What makes me, me?
We have large family and were quite poor in Taiwan despite our parents being teachers. We immigrated to Canada when I was 9 and faced a great deal of racism and bulling at school. I am thankful that these experiences did not crush me, rather it made me stronger. The biggest influence this has had on me is my very firm belief that:
• I am the only one that should have control over me and my life.
• I will NOT give someone the power to make me feel inadequate or inferior
• ALL people should be treated equally and with respect
• We should help others if they cannot help themselves

These beliefs has very much influenced my goals as a nurse:
• Engage with the patient, find that connection that allows me to understand them better
• Reframing their situation so that THEY can see alternative solutions or health behaviours
• Empowering them to understand that THEY are in charge of their health and that their voice is powerful

What do people need to know about me in order to provide me with the best care?
I demand and deserve the following:
• Respect
• Treated with dignity – I am a person, not the “name of a disease in room 7 bed 2”
• Clear communication – to be informed of all aspects of my care and options explained to me
• Choice – we moved to Canada to have freedom of choice!

If you have to make decisions for me, please remember this…

I value life but I treasure quality of life even more. If there is no hope to maintain quality of life by my definition, then let me go. If you go against my wishes… I WILL come back and haunt you!

Bruce

What makes me, me?
I believe that I am a person who is approachable with a substantial amount of integrity, respect and compassion for others. I am a “learner” who enjoys participation in lectures, theatre productions and reading. I now enjoy observing many sports (hockey, baseball, golf) as well as spending time outdoors in activities such as canoeing, fishing, and bird watching. In brief, I have a love for and with life, especially with family.

What do people need to know about me in order to provide me with the best care?
Certainly, I am a reflective person so I need to know that those caring for me really care about me. I am a person full of gratitude for all the blessings, of this journey called life. It may sound trite but I am more concerned with persons feeding my soul than feeding my body.

If you have to make decisions for me, please remember this…
In all of your decisions please try to honour my family and extended family. They are the most important factor in my life. Their legacy will in some way be my legacy and this bond must be honoured at all costs. They along with myself must feel that they “really matter” and they must have “hope” for the future.

Here is a short documentary video of the exhibition opening night with some more details about the full campaign.

(Video Provided by Ward 1 Studios)

Thank you for taking the time to get to know the subjects of this series and please be sure to make sure those closest to you KNOW.

– Brandon Marsh
www.brandonmarshphoto.com

(Official press release available at –  http://acpww.ca/know-now/ )