The Jerk and the Badass in My Head as Someone With Chronic Illness

I’ve come to realize that there are two versions of me. Not literally, but metaphorically. The angel and demon on the shoulder that we often see in movies and cartoons, kind of do “exist.” They run circles in my mind. At times it feels like they are boxing each other for control. The fight to have a good day starts with them. The things that I can say about myself are so destructive. It was for a long time impossible to not give in to the darkness. I have felt so little value in myself for most of my life, with accolades and awards being nice, but never enough. Never reaching far enough and never understanding why it felt that way. Never realized until now how much of that was a desperate search for belonging. Literally, nothing would pierce that darkness, leaving me feeling so very alone. In a sea of people talking, I felt unseen, unwanted, and still utterly alone.

It was a hard slap to realize just how much of my energy was wasted on dark thoughts in my own head. On the so-called “facts” that I told myself, based solely on a place of insecurities. It’s a terrible thing to not value yourself. People say it, but doing it and feeling it is not simply a thought once in a while. Parts of me were so very angry with myself for wasting life, wasting precious time. How horrifically destructive that terrible voice can be. Ruminating on falsehoods that are so painful, it’s as if that darkness, that Jerk is beating me to death from the inside.

I could use logic to assess the realities of both sides, working to set aside the emotional reactions to find a place of calmness, in which I could actually think my way out, even talk my way out of that awful place. Those moments I started to appreciate the Badass. It might sound odd, but really it’s one of the sanest things I have ever done. I know that I can live longer doing it.

The Jerk says, “Let’s throw on a nightshirt. Who needs to be dressed today?”

The Badass says, “No way! I’m a Roman Goddess who looks snazzy in that top.”

The Jerk says,  “OMG! I have more diagnoses than some books have chapters. How sad.”

The Badass says,  “Yup. You are an enigma of rare Zebra. Bring on the interns, and give them a shot at my medical chart.”

Oh, the sarcasm has saved me so many times from a terrible day. Those two sides fight constantly, but it is getting easier the more I allow myself to matter. To now enjoy my own company, and relish in the reinvention that has become who I am today.

My life is lived in a constant state of just trying to stay alive and moving. I hadn’t realized how much I was allowing my illness to steal life from me, to steal my joy and creative ways. Realizing I had pages to write and canvases to paint, to continue to exist and know that I do in fact matter.

So many of you reading these words know that feeling. Know that desire to not only exist but to be wanted by others. To find family, connection, and belonging is a basic human need we all need to live. Our minds, when shrouded in darkness, can do terrible things to our physical bodies.

The Jerk says, “You are such a failure. You have nothing to show for yourself.”

The Badass says, “Screw you, I don’t need a pile of things and bills to prove my value so long as in the very least I value me.”

The Jerk says, “Shit, where did that self-esteem come from?”

The Badass says, “Me.”

If I am not feeling so hot and am in need of treatment, I don’t have to beat myself down for what I cannot do, but rather relish the things that I can. I remind myself of how far I have come, how rebuilding a life is possible, and starting a new life can be amazing. I try to take comfort in reminding myself how remarkable I am to make it this far never mind, continuing to work for better patient care in the ways I can. Knowing I am adding value to the world. Be it in art, baking some fresh bread, or going to the public to use my platforms to advocate for those who need a voice. The very sick, the suffering who work every day to simply stay alive. Who battle rare diseases that no one, and even oftentimes most medical providers, have never heard of, or know very little about. To advocate is a privilege, I have done it for decades, but never given myself credit. The one accolade I never realized till this moment was the only one I ever truly needed, my own.

I never forget what others would give to have access to the treatments I am receiving. I’ve lost myself in terrible despair at the thought of it. It shouldn’t be that way; you shouldn’t have to buy your way into treatment, into living a little longer, but so very many of us do. A topic I continue to write extensively about is medical inequality. Health care is a basic human right. It’s kind of disgusting to know that for 20 years, I worked as a medical provider helping people get the care they needed, but now that it is me, I cannot always access the care I was a part of giving.

I’ve created a safe space for myself. There are sparrows that have been coming back to nest for years. I love watching them.  I’ve given myself permission to matter, to smile, to have internal peace not laden with regret. What is changing, is the conversations in my head. My view of self focuses more on joy and less on past sorrows. More on the living of life, and less on the parts of me that don’t work quite so well. Wow, look at me walking around. I’m a damn Goddess.

Two ways of seeing the world, my world. The choice is which side of my brain I listen to. Will I wallow in my sorrow over all I can’t do? For years I never understood just how powerful a few moments of controlling that small voice in my head could be. I do feel the pain of losing things I can’t do anymore. I do not pretend it doesn’t exist or try to delude myself. I choose to not allow it to rule my mind, my day, or how I affect others.

When it bubbles up, I don’t ignore it. I control the when and how I will deal with it. I notice it, and I choose to let it go until I’m ready. Until I am in the right place, at the right time, to deal with whatever that was I had popped into my brain like an intruder you just want to punch. When I see my diagnosis list, it can be like an arrow to the heart at times. I’ve even caught myself nearly having a panic attack. Felt the weight of every word. Knowing it took my career, I will remind myself of the person I have become in spite of my diagnosis.

Writing articles addressing the inequalities in medical care has become a passion. It’s a way to stay in the game. To try to shed light on the things that can be hard to talk about. I find comfort in using the platforms I have access to and using them to speak for those who can’t. To not stay small and silent. Choosing instead to spend my day with as much joy and goofiness as I can muster. It is so very much better than the despair of how sick I really am. It’s managing my worldview with respect to my own illness. It’s never giving up hope for a longer, less sick life. It’s holding on to the things that serve me, and letting go of that which does not.