Katherine Haugh is an organizational learning and data visualization specialist living in Amsterdam, The Netherlands. She attended the first SmellTaste conference in 2017, and is planning to return for the 2019 meeting, where she will use her expertise in graphic recording to facilitate and visualize discussions throughout the conference. We caught up with Kat to ask about her experience at SmellTaste2017 and her expectations for SmellTaste2019.
- Why did you decide to attend SmellTaste2017?
I attended SmellTaste 2017 because I wanted to get clarity on what I could be doing, if anything, to get my smell back. I have an extremely diminished sense of smell as a result of a traumatic brain injury from a bike accident in 2016. After my accident, I saw several doctors who all told me different things about what I could expect (ranging from never getting my smell back to getting it back within a few days). They also had different suggestions as to what I could do to get my smell back (ranging from doing nothing to extremely costly and experimental procedures that didn’t have any guarantees). Friends and colleagues were equally befuddled when I mentioned my condition. I felt lost and alone.
At the same time, I was emotionally processing my loss and wondering every day if I would ever smell again. Not being able to smell the familiar scent of home when I walked into the house that I grew up in or take comfort in the smell of hugs from the ones I love made me feel like a spectator in my own life. It felt like I was looking in on my life but not taking part in it. It was incredibly isolating and lonely.
I didn’t have the words to describe what I was experiencing. So, I did my best to find the silver lining and make due with my new lived experience. I tucked my smell loss to the back of my mind. I talked to friends and family about it occasionally, saying lightheartedly that I was finding ways to cope, even though deep down I was suffering. Every once in a while I would find myself in a quiet moment and would just fall into deep despair over what I had lost. Even though my friends and family were there for me in every way possible, I felt really alone in my grief.
I went to SmellTaste 2017 looking for answers to questions about my condition and options for treatment. What I found was a vibrant, resilient community of doctors, researchers, advocates and anosmics. Being in this community and hearing everyone’s stories made me feel less alone in my loss. I felt seen and understood that weekend in a way that I hadn’t since I lost my smell. I suddenly felt like I had words to describe what I was going through. Attending SmellTaste 2017 gave me the answers I was seeking about my condition that helped me accept my new reality, but most importantly, it facilitated connections with other participants that helped me begin to have hope for the future.
- What elements of SmellTaste2017 did you enjoy most?
I really benefited from connecting with others, sharing in painful moments, finding moments of levity and laughter, and getting clarity on my condition and options for treatment. What I appreciated most, though, was having the opportunity to hear other people’s stories.
Attending SmellTaste 2017 was really a cathartic experience for me. I found myself going from sobbing my eyeballs out over a heartbreaking story of one of the participants to laughing to tears over one of the stories of another participant. Sometimes humor can help us get through situations we couldn’t possibly endure without it.
Before I attended the conference, I couldn’t entertain the idea of my smell coming back. It was too painful and exhausting to grieve something that was gone, but maybe not permanently. I’d settled into a more accepting stage of grief about my smell loss. Through the heartbreaking and resilient stories of other attendees, I began to hope. I started to believe that I could, too, one day get my smell back. And that I could, too, live a life that felt full without my smell totally intact.
For me, choosing to hope means saying that I have a diminished sense of smell instead of no sense of smell. Hope means believing and visioning myself getting my smell back one day. Hope means envisioning a full, meaningful, beautiful life without my smell totally intact. Choosing hope means picking up on the ways in which there is hope everywhere. Hope means choosing to metabolize my loss into something that is inspiring and beautiful.
- What was the most valuable piece of information you took away with you?
The most valuable piece of information I took away was this: everyone’s experience with loss is different and that is OK. There is not right way to cope and that is OK. Everyone needs and wants different types of support and that is OK.
Loss means something different to everyone. No one can really understand what your loss means to you and at the same time, no one can better understand your loss than someone who has also lost. We are an “us” that is made up of resilient, heartbreaking, beautiful stories but we are not the same. This helped me to own my story and to own my experience, while at the same time opening myself up to connection with others through loss.
- What advice would you give to someone coming to the event for the first time?
I would first tell them that I’m so glad they are coming and I can’t wait to meet them. I would suggest that they do what they need to take care of themselves and get what they need during the conference. Loss is deeply personal. I would encourage them to take the time and space they need, whatever that may look like, to look after themselves and ask for support. Some might find it rejuvenating to hear other people’s stories of loss while others might find that overwhelming. I would let them know that we look out for each other in this community and that they are not alone.
I would encourage them to accept wherever they are in their journey. In my experience, it can be tempting to think that you “should be” somewhere else in your journey. For instance, that you “should be” doing more to get your smell back or that you “should be” able to laugh about your loss. I would encourage them to let these thoughts pass by without giving them weight or attention.
I would remind them that their journey is their own. Their narrative about their loss is their own. It is unlike anyone else’s. They don’t have to be anywhere but where they want to be and where they feel they need to be to meet their own needs.
- What are you most looking forward to at SmellTaste2019?
People sometimes ask if my other senses are sharper now that I lost my sense of smell. I quickly answer no. My anosmia has made me feel like I’m sealed off from life–nothing is sharper. Yet at random moments, I notice that I become hyper aware of touch or music or beautiful imagery. It’s little things the sound of church bells as I ride my bike through the streets of Amsterdam, the touch of my boyfriends hand on the small of my back, or a breathtaking view of the sunset through the canals.
I sometimes find myself awestruck by how sensual life can be, if we only pay attention.
As a visual artist, my artwork has been an outlet of healing and expression. I’m really looking forward to attending SmellTaste 2019 and creating beautiful visuals of our conversations, our stories, our hopes, our questions, our fears. I’ll providing support to the conference with one of my passions: large scale graphic recording. Being able to visually capture the conference is a really humbling opportunity for me to metabolize my smell loss into something that is hope-giving, beautiful, engaging, and inspiring. We all have this power. Being able to engage one of my other senses in describing and processing the loss of another will be a profoundly moving, sad, and empowering experience. It is a gift for me to be able to participate in the conference in this way and I’m so grateful.