I’ve been pondering the concept of toxic positivity for some time now. You know, people who insist that a person with an uncurable, progressive disease (ahem… systemic sclerosis) can get “better” if they just get some sunshine and exercise. People who suggest that the symptoms of a failing heart and lungs are “just old age”, or that debilitating brain fog is something that everyone deals with. People who keep suggesting possible cures of the herbal or holistic medicine variety, or that if I just try hard enough, I will magically go into remission and get well. People who insist that no one knows what will happen when you disclose serious new complications, or people who over-celebrate a small gain. I know that they mean well, but it is isolating and hurtful: it is a denial of my reality.
I lost my temper and snapped off at one particularly obnoxious person at a holiday function who was arguing that I just needed to stay positive and try harder so I could get better… “there is no better, there is only this”, I told her. She was taken aback, and then doubled down and insisted that people do get better if they try. In my defense, I should mention that she had also just told me that her daughter’s diagnosis of a serious illness was awful because her daughter was young, but what was happening to me wasn’t such a big deal because I was old. Yeah. Toxic. My doctor told me that she was lucky that I didn’t hit her. I love my doctors!
So, why is toxic optimism a problem? Well… toxic, right? It’s a denial of what is actually happening while throwing up walls that distance and protect you from the painful thing that is happening. It’s ensuring that you won’t get involved. Some of those walls are an insistence that the person will get better, or they aren’t actually all that sick, or that this is “normal”, or even suggesting that somehow the person is actually at fault for their own illness/condition. Not helpful, people. I was already thinking about how to frame this in a post when an article from The Atlantic called Tragic Optimism is the Opposite of Toxic Positivity arrived in my news feed several days ago. Okay, this is close to what I’ve been thinking about, but tragic optimism isn’t exactly what I’m trying to achieve here. No tragic, okay? In my mind the process of flourishing in the face of adversity requires grace and courage: walk into the darkness, face down the monster, deal with it (severely), and then continue to thrive and shine (like a sunflower, goddammit!) from within the heart of the storm.
So, it was kind of amazing when I watched American Symphony last night on Netflix.
This is what I’m talking about. It was hard to fight back the tears as Jon Batiste and Suleika Jaouad put into words and action the things that I’ve been thinking about, but so much better. Jon Batiste says… “look into the darkness and despair, face it, but don’t let it consume you.” YES!!! This is what I’m talking about, people. “Accept the possibility that you might fail, but absolutely believe that you will succeed,” Jon says in the film. Without any doubt, Jon and Suleika are at turning points in their lives: they have just married, Jon writes and produces a symphony that is to be performed at Carnegie Hall, and Suleika undergoes a second stem cell transplant to treat her relapsed leukemia. I know people who have undergone stem cell transplants (it is used to treat extreme cases of systemic sclerosis too), and it is a lengthy, horrible process of dancing with death while hoping for life at the end of the tunnel. This is a raw and emotional documentary of extremes; for this young couple, they are navigating the highs and lows simultaneously. The stress is crushing, and the emotional toll is heartrending. In spite of this, they cope, they walk into the darkness and face down the monster, they shine from within the heart of their storm, and the documentary ends with the performance of American Symphony at Carnegie Hall with Suleika in attendance.
In my opinion, every significant battle begins with the thought… okay, this is happening. Recognizing your situation is not a sign of weakness, but of strength. The action plans, sense of purpose, and the ability to keep rolling with the punches comes later. There is no place for denial if you are going to battle! Also, as this couple shows in the film, you need some creative outlets if you’re doing battle. Suleika paints and Jon composes. I take yarn along.
Today I started listening to Suleika’s story of her first dance with leukemia and the recovery afterwards.
I’m not sure that these two would embrace tragic optimism, but they sure are shining examples of the opposite of toxic positivity. I think that I’m going to be learning things from Suleika while I listen to her reading her book, knitting away on my new sweater. With my newly blooming orchids. And my cats. Within my own little scleroderma storm, the monster locked safely away in the cupboard. Pipe down, monster. I’m knitting now.
Yarn, Books & Roses 