Bird Scribble

The Juggle Struggle

“And when that doesn’t happen, you heal yourself. You find strength in things other than people. You find energy in your solitude, you find hope in your daydreams. You build yourself up, tell yourself that you don’t need anyone to save you, that you don’t need anyone to steady your foundation.

But you do.”

As I was driving to an event yesterday, wiping tears from my eyes after allowing a moment of anxiety to overflow, a dear mother who has a heart of gold sent me this article, and wrote, “Felt led to send this to you.” Her timing is always impeccable, that 6th sense radar nurturers have within themselves, and I could not have been more grateful in that moment.

The title of the article: Sometimes The Girl Who Is Always There For Everyone Else, Needs Someone There For Her.

I’m villainous when it comes to, “I’m fine.” I will whip together a smile even when I’m flailing inside; I’ll push through that bubbling terror in my throat in order to keep typing those emails and fighting for the underdog instead of taking a break; I’ll throw myself into a project or hobby to soothe the rumbling in my mind so that I can experience respite in the chaos; I’ll offer words of comfort when people come up to me and comment on my skin or my appearance. I have so much support around me, but out of fear of being a burden, I tend to armor up and play my best hand to mask the days where I feel inadequate or drained. I have found that leaders in any community, especially the chronically ill, are constantly treading water, our legs kicking, and kicking, and kicking to stay afloat while our arms are reaching out and trying to be of help in any way that they can. The battles are never over. There is always a need for more adrenaline surges, more intransigent backbones to forge when trudging on into the future we all dream of seeing, but must continue bleeding in order to build.

Brene Brown wrote, “to be the person who we long to be—we must again be vulnerable. We must take off the armor, put down the weapons, show up, and let ourselves be seen.”

Damn it, that sucks. It’s a fu*%#ng ruthless truth and it’s actually one of the main reasons I write and have made videos. You have to take off the heaviness sometimes and just show up — with candor, with tears, with authenticity that NOBODY can do it alone if they are going to make it out alive. No one is invincible, and boundaries are non-negotiable.

It’s one thing I miss about having a partner. There would be instances where I felt so unlovable just because of the disgust I held for the reflection in the mirror, the socially unacceptable body I carried around where, for some reason, was socially ACCEPTABLE to comment on in public, and with a partner, that bashing was never reciprocated, but alleviated. I was rarely vocal about how I felt being trapped inside a body that was decaying, but without having to share it out loud, I never stopped feeling the love that first year. I know my marriage didn’t last, but I’m not sure I would have become the advocate I am today if it wasn’t for that first year’s foundation of support. One of my favorite memories with my ex-husband is when I was typing up a screenplay in our guest bedroom, freshly bald after losing so much hair, cut up socks on my hands, just outright crazy looking, and I hear him from the living room —

“Bri, where are you? Where’d you go?”
“I’m in here, working.”
He enters the room with this puppy dog face.
“Where did you go? I miss you.”
I laughed. “I’m right here.”
He joked, “Oh, must be so difficult to have someone who loves you so much.”

He smiled and left the room. I will never forget that interaction. That is love. That is a partner. That is belonging and sacred connection that transcends whatever pain, outward or inward, you can be struggling with in life.  He accepted me in my mess and reminded me that I was still the same girl he fell in love with underneath it all, and that I was worthy of that love despite my illness. I long to be held like that again. I know I will again, one day.

I still, to this day, struggle with that person in the mirror. The redness, the dryness, the constant need to take care of this large organ throughout the day, which is always causing me some sort of discomfort or obstacle; a chronic pain that you can’t hide because it’s advertised for the world to see.

Oh, Bri, I thought you were getting better?” — words I often hear when I’m having a flare. Trust when I say it’s more disappointing to the sufferer to still be stuck on this proverbial rollercoaster than anyone can realize. I hate disappointing those around me with my health. And I bet none of them feel disappointed, but it’s the narrative that plays out in my head. It’s exhausting feeling like I am being examined every time someone sees me. I recently came out of flare and someone I hold close to my heart said:

“Bri, you’re looking so much better… not that you don’t always look great!”

I knew he realized right away that his first words, though dripping with lovely intention and care, could carry a connotation that I wasn’t beautiful in my most outwardly vulnerable moments. I don’t fault him, or anyone, for making these comments. I’m quickly reminded however, during these times, that my illness will never be hidden, that she is chained to a public platform no matter how badly I wish to hide her. That’s where we all wrestle with shame. It’s a double edged sword — like most with chronic illness, we have weak times and aren’t able to do what we used to, but also an outward hurdle that must be accounted for as well.

That is one thing that I ALWAYS combat — my productivity. I HATE BEING UNPRODUCTIVE. To feel unreliable is unbearable. It is an “unwanted identity” as Brene Brown calls it, and I literally took my ballpoint pen out and scribbled the shit around those lines in her book — just eviscerated any blank spots on that page.

Even though the documentary is finished, I know my advocacy isn’t. If I haven’t figured out some avenue to advocate each day, I get antsy and think that I am not doing enough. This is where I learned about boundaries. I answer messages, write emails, answer emails, collaborate, and nothing feels adequate enough. I must remind myself on the daily that I am one person. It keeps me up at night. We are already guaranteed an early grave because we have a chronic illness (its a legit thing, apparently) but I also need to make a concerned effort to not be of service in digging that grave so early on.

The other day, besides the usual influx of messages, I had someone call me over messenger. The first time I thought it was just an accident. But then, two days later, I get the same call, early in the morning. I wrote this person asking if this was an accident. To my surprise, they said no. They expressed they needed encouragement. It broke my heart knowing the desperation they must have felt in order to try and video chat a stranger at 8:15am, but then it dawned on me — I am not a stranger in their eyes. I was a place of refuge, an open book many have read via my videos, blogs, and documentary. And as much as I wish I can save everyone, it was in that message that I politely shared how, I too, struggle, but that I needed to create a safe boundary for myself, and having people trying to contact me in such a way was sadly too much for me.  They graciously understood, but I couldn’t shake how that made me feel. It felt wonderful to have finally created some facet of a line between myself and my advocacy, but I also felt a twinge of defeat, like I couldn’t juggle it all and fell short on someone who needed help. I know many other leaders in this community struggle with that juggle. #JuggleStruggle

Some days I feel like not enough.

Some days I feel like too much.

Some days I want to be cuddled and held to calm my restless spirit.

Some days I want to conquer the world, wielding my sword and shield.

“… remind yourself that you are not invincible. Your heart needs rest. You need rest. Remind yourself that you do not need to carry the weight of the world on your shoulders, that you may not be able to save everyone, that you may not be able to heal every hurt. Remind yourself that you deserve to take all of the energy you put out into the world and invest it back into yourself from time to time. That you are worthy of the love you keep giving to everyone else. Remind yourself, that you don’t always have to be strong, that you don’t always have to be the fixer. Remind yourself that you can be human, that you can ask for help; that you don’t always have to be the one to save yourself.”

The grace I show others I must learn to show myself, to work everyday to quiet my intrusive and abuse thoughts. I never enjoy hearing people talk negatively about themselves, and yet, I do it often, so I try and do things that deafen that cruel dialogue. And not just deafen, but demolish, because I am also weary and fall short on days where I deafen the dialogue with activities that do ONLY that — deafen. They aren’t things or activities that will help bring solace in the end, but just a numbing in order to make it to the next day.

We are all capable of self-destruction and self-perseveration. I just know, within my juggle struggle, I want to feed my soul with purposeful actions — to dance, to stretch, to write, to paint, to spend time with people who will breathe life into my spirit, not bury it. Be particular. Be tough and gentle at the same time. It is possible, if not imperative, in this life.


Love, B. R. Banos


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