Written by Brooklyn Ingram, a young person with ME/CFS, this blog post describes her refusal to be defined by a disease. Read more of her blog Future Dead Person here.
We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them in yours because I can assure you they are there. I spent time with runners and I complained about homework and I worked hard at these things and I made them me.
Then I got sick, and suddenly I wasn’t a runner or a student. I was physically incapable of being either of those things. I felt like I was failing because I was failing to perform in a way that represented the identities I had chosen.
Eventually, I moved past this, and my new identity was sick person. I didn’t have anything else anymore, as I wasn’t really doing anything other than being sick. And then, I had a few months where I was almost better. I was working out and I had a job and I functioned almost like a healthy person does.
This period of time was a blessing, but it also dismantled my identity of sick person. I felt like I was failing because I was failing to adhere to this identity that had been forced upon me. I have had many identities that have been created and then replaced. I’m sure you have too. Some of my greatest sorrows have come from watching the deconstruction of an identity.
But I do not have an identity that can be destroyed. I do not cease to be a runner just because I am not currently running. I do not cease to be sick just because I have a few good days. These are experiences that have irrevocably molded my physical, mental, and emotional self. They are part of my identity whether I am actively participating in them or not.
A key concept in Buddhist teaching is the non-self. They believe that nothing is permanent, and that your conception of self is incorrect because you are constantly in a state of becoming. You cannot know yourself because you cease to be yourself with every second that passes. In Buddhism, suffering is caused by our desire to cling to an identity that is not real. This is maybe extreme, but I think it is important to consider when evaluating your perception of yourself.
When you create an identity, you create guidelines that limit your ability to become who you are. You use these guidelines as a way of measuring your self-worth. You act under this identity and you use it to determine your success or your failure. But if you strip away these identities you will find that at your core you are simply a person. And “you can’t pass or fail at being a person, dear” (Neil Gaiman).
I am a runner (even though I haven’t run more than 4 miles in the past 2 years) and I am a student (even when I miss class) and I am a sick person (even on days where I am able to function at a reasonable level). I cannot pass or fail at these things because they are simply experiences that I have acquired during my journey through personhood.
Throughout my life I am going to continue to gather new abilities and mindsets. I am constantly in a state of becoming. I hope that as I become more, I don’t let these things determine who I am as an individual.
I have many talents and traits and thoughts and ideas and these in summation, not individually, determine who I am.