Have you heard about the spoon theory, coined by writer, blogger, speaker and lupus patient advocate Christine Miserandino? It’s basically a way of looking at chronic illness, a metaphor, that explains the difficulty of everyday life for people with an illness. Essentially, a person with a chronic illness is given a limited and unpredictable amount of spoons per day and every task they must accomplish uses up one of those spoons – like showering or getting dressed. Whereas someone who is healthy has unlimited spoons, a person with a chronic illness must be careful and deliberate about how they use their spoons. If they run out of spoons, they will likely not have the energy to complete any more tasks that might require an additional spoon. This means that often, a person with chronic illness might not be able to fulfill a whole day’s worth of activities. They might need to leave work early or stop studying. They might not be able to leave the house at all.
A new art exhibition in Toronto, Canada entitled Spoonderland embraces the spoon theory and the use of metaphor, assemblage art, street art and documentary and artistic photography to explore the ways that the artist, Katrissa Singer, and others navigate life with chronic health conditions.
Her level of respect for others with chronic health issues was evident right away – particularly during her artist talk where she thanked people for joining her and recognized the difficulty of visiting. Travelling to the venue and socializing both use an enormous amount of spoons.
During the artist talk at the opening reception,she said a lot with few words. “I’m tired. It’s really difficult to say in front of a crowd. I’m tired of there being silence around some very important issues.” Her aim with Spoonderland is to create a “beautiful and powerful dialogue” and help change the world make “more understanding, acceptance, and compassion for ourselves and others.”
The art exhibition blends the concepts of traditional physical and mental illnesses, demonstrating that there should be no distinction between the two. According to the artist, and I agree, the brain is an organ, much like the heart, and illnesses of the brain should be regarded on the same level as other physical illnesses.
During her short speech, something she said really struck me: “I want to live in a world whether there is no stigma, whether it is mental health or physical health. I don’t make a distinction between different types of struggles. Everybody had layers of struggle and different levels. I don’t want people to compare themselves to others.”
The signature work of the exhibition, Message in a Bottle, “amplifies the voices of people living with chronic illnesses and disabilities, visible or invisible, physical or mental, as well as the voices of those who experienced life-changing consequences as a result of temporary or acute illness.”
This work is an evolving and ever-growing piece that incorporates the physical contributions of members of the public. It focuses on “collecting authentic narratives”, where people are invited to write a message about their experience with their illness or medication and put it inside their actual prescription bottles, and submit these together for the project. Katrissa then takes an artistic photo of the message combined with the bottles, which is then displayed on the walls of the gallery in a two-dimensional image. These photos are visually stunning and provocative. I loved them!
According to the artist, the use of the bottle “alludes to the isolation felt by those who are ill or disabled, as if trapped on a desert island.” As well, it represents the stigma in our society that forces people to feel as if they need to “bottle up” their feelings and symptoms.
Personally, it was fascinating to read about the experiences of others and their relationships with their medication. The submissions touched all of the various ideas and feelings that I’ve had about my own medications for bipolar disorder, ranging from shame, pride, uncertainty, impatience, despair and frustration. Lately, I’ve been feeling increasingly worried that I will never be able to find a medication that works for me. I’m also sick of taking medication and the side effects that come with it. I’m also worried about the long-term impact of the medication on my health and what will happen if I have to take medication for the rest of my life. I saw all of these thoughts reflected in Message in a Bottle. If you want to participate in the project, you can find more information here.
These ideas are carried over into another artwork in the exhibition, entitled This Medication May Cause… The candidness of this piece really struck me, because while a pharmacist might have given me warnings of side effects from my medication, they never really outline the true impact of taking medication on my life. I’ve gotten a lot of judgement from acquaintances who believe that medication for mental illness is unnecessary and that all I need is a “good cup of tea” or “yoga”. The cost of my medication has never really been a problem for me because so far, my benefits at work cover them. However, I think about the inaccessibility of medication all the time. My medication costs over $200 a month. Imagine that I had a different job or no job at all – how would I be able to afford them? My medications also impact me physically as well – I have gained weight and they make me super tired all the time. I can sleep up to 13-14 hours a night because they make me so tired. Needless to say, my medications do not make my life perfect, which is something that this piece hits home.
After perusing the gallery, I had a brief chance to chat with Katrissa that was pretty eye-opening and made me confront some of my own ideas and practices. After discussing her desire to smash the stigma around chronic illness, I thought it would be a good idea to probe her and ask her about her own personal experiences with chronic illness. I thought it would be an interesting way to put the exhibition in context. Instead of sharing her personal struggles, however, we entered into a discussion on how it can be really exhausting to have to share your diagnosis with people and explain them your personal story, especially if people are asking multiple times a day. That people don’t seem to have a lot of filter when asking questions and might ask things that are too personal or about issues that should remain private. It made me realize something quite obvious and that I should have known already. That not everyone wants to share their story all the time. That it’s okay if they want to keep quiet and just live their lives. It’s enough of a struggle to simply have an illness and deal with the symptoms, but to add on another task – another spoon if you will – can be too much at times. After our conversation, I started to reflect on my own nature as a mental health advocate. Do I talk about it too much? I don’t think so and if someone thinks I do, I don’t really mind if I annoy them. For me personally, I need to express myself. But sometimes, I think my advocacy affects my own health when I spend hours reading about mental health and trying to explain my own symptoms and I am not taking the time to engage in self-care.
I’m going to end off this review of the art show here and ask you a question about your thoughts on the effects of advocacy. Have you ever noticed an impact on your health? What do you think of this concept?
Spoonderland is running from January 29 to February 8 at the Joan & Martin Goldfarb Centre for Fine Arts at York University in Toronto.