How to be sick

 

My dogs were recently hit by a car. They escaped from a dog sitter who stopped paying attention and they got badly hurt. One of them needed her leg amputated. In the days and weeks leading up to her surgery I agonized over the decision to amputate. Were we taking away her chance at a life full of tail wagging and fun? Were we diminishing her quality of life? I also spent days punishing myself for leaving her with someone who could have been so careless. My husband routinely reminded me that life just happens, this wasn’t my fault. I couldn’t shake the feeling, though, that I should have tried harder, been stronger, and that in the face of a tough diagnosis I should be braver.

As a student of disability studies and of a life full of calamities I have long disavowed the myth that illness forces bravery, yet I still put this social pressure on myself. I watched endless videos of happy three legged dogs trying to convince myself that this would be okay. All the while I was agonizing, my pup was adapting. Not only adapting but wagging her tail, barking at strangers, and chasing (more hobbling) after squirrels. After the amputation, when I went to get her at the hospital. She jumped on me as soon as she saw me. The weight of her injured leg no longer slowing her down, she joined me on the chair I was sitting on and wagged her tail mightily.

I realized then that I needed to be more like her. She is joyful and adaptable. She is not fixated on her suffering because she is fixated on the world. She is outward facing, un-phased and undaunted by the prying eyes of passersby. She is just her, three legs or four, she is just herself.

I recently wrote an article about how I cope with my health crisis and the various bouts of suffering my family and I have had to endure in this life. I was surprisingly met with criticism from a community that felt my desire to show myself compassion inhibited their desire to be understood by those around them. I was shocked that me sharing my life as a brain tumor patient was taken as prescriptive rather than informative. And to me, advocacy, compassion towards the self and other, and mindfulness are not mutually exclusive.

What I have found after years of living with an illness, and years of studying trauma as an academic is that when we are suffering we often want and expect people to know what to say, how to act, and what to do to make us feel better, or at least not make us feel worse. The long and the short of it is that no one, no matter where they are or what they’ve been through knows what to say, but they say something because staying silent can often feel like too much to bear. We also bristle when others dealing with much the same problems as us, do not cope in the same way. Some of us choose joy, some search for light, and some of us are sad, angry, or maybe something else. And some of us are in different stages of our illness, recovery, and life and so we can’t always see where each other is and where we may be going.

We tell one another how to be sick. We make the mistake of telling rather than asking, demanding rather than offering compassion. I write about my health not because I have any answers, I most certainly do not, but I do have experiences. I remember when I first found my tumor I rushed to the Internet because my doctor’s appointment was not until the next day. I had committed the cardinal sin of looking at my MRI, I had seen my mass, and I had been left with more questions than answers. I was terrified and I found a lot of voices out in the world. Some of them resonated with me, others did not. I clung tight to the voices that did make sense to me. I reached out to strangers and they became friends. We built one another up, and never ever tore one another down. I chose then to share my experiences because maybe the quirky ways I think of things could serve others. I hope it has been clear in the years I have written here that I do so without judgement or expectation, and without thinking I am the authority on how to be sick.

My husband just sent me an article about wisdom. It says that people who go through difficult times turn those experiences into meaning and that meaning into wisdom. What was most powerful to me in this study was that there is no one way to navigate difficult times. So for me, I choose to be like my dog. I will be un-phased by the prying eyes and grab joy. I will relinquish the judgement adulthood and society so often leaves at my feet. I will abandon the desire to be stronger, braver or better, and I will just look straight into the wind as she does with so much grace, and be unapologetically me.

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