4 years. 209 weeks. 1,462 days.

of loss.
of confusion.
of fear.
of battle scars.

of thunderous, terrifying purpose.

Looking back to Day 1, when hopes were high and knowledge was scarce, it is miraculous to see how far this journey has taken me. I am not the same person. Sometimes that makes me sad because it means I lost a life that I vigorously worked towards. And sometimes I am unfathomably grateful for all the beauty I gained from sitting at rock bottom.

I shed so much more than skin and tears these past four years. I never understood joy and how powerful it was before having so many things I loved ripped from my hands. I never understood the preciousness of time before having it tick away as I laid helpless on a couch day in and day out, praying for the day I could feel like myself again. TSW is not cancer, she is not a terminal diagnosis, but she slowly kills you from the outside in. She can sweep across your entire existence and terminate pieces of you that make you feel like you are truly battling for your life. And when you gain small steps in the right direction, all that pain you felt makes the good you get back that much more breathtaking.

My skin is still not back to normalcy, nor is my mind rebuilt from the gale force winds that battered her walls, but I’m starting to realize that maybe TSW gave me more than my former life could ever have given me. It took a sacrifice to learn more than any book, classroom, or person could have taught me.

I lost my career, but she’s creeping back into my life. My body has yet to grace a stage in full make-up, costume, lights blaring down as the song begins, but I have gotten to feel what it’s like to move again. I may not be as strong or as flexible, but my heart overflows with joy when she knows she’s getting to dance. It can be to a choreographed movement or a whimsical jump out of my seat when I hear a song that grabs me. It is heaven. Sometimes I think people find me to be overly quirky or perhaps even naive, but I feel sorry for those people. They’ll never understand the intense love I feel for rediscovering something that was once threatened to never come back.

I lost my hair, but it’s growing back in rainbows. You’d be surprised at how hard that hit when I knew I needed to shave my head. I couldn’t keep watching it fall out, clumps just forming in my brush with every swipe. I used my long hair as a shield for so long, an appendage that I refused to cut, and the universe showed me that I needed to let it go. I couldn’t keep hiding. That was the first real cry I had. It was four months into enduring the hell that is TSW, and that was my breaking point: thousands of strands of hair falling to the ground. But it was also completely liberating. I felt almost invincible, just staring into the mirror thinking, “fuck you, bring it on. Whatever else you’ve got, bring it on.” I shouldn’t have, because she definitely brought more, but I was proud in that moment that I did something that broke my heart, but was so necessary for my healing. “It’s just hair.” And that’s true. But I had let it become a part of my identity, and TSW showed me that I was so much more than that. And now, laughable while proclaiming my quarter life crisis, I have been sprinkling colors into my life. Pinks. Reds. Shades of orange and blue. I fucking love it. I never had the courage to do it before and it’s been a brilliant addition to who I am.

I lost my husband, but… maybe he is the one who lost out. This condition is no picnic. It is relentless and doesn’t just affect the person going through it. Your loved ones will be tested and tormented right alongside you. What I went through while losing him felt like torture because I sealed so much of my confidence in his hands. I felt worthless after he left. I was surrounded by our things, our love for one another in the form of hand-crafted gifts, pictures and written words, and it painfully tore me apart. Seeing him with another girl the very next day, on Christmas Eve, put me in such a state of discarded chaos. I had nightmares for months trying to cope. I’d wake up hyperventilating at the mere thought of being with someone else and having to start over while still being so ill. Yes, I was back out in the normal world, but I was floundering. It’s like being stuck in the deep end of the pool and your life jacket suddenly gets taken away from you. You know how to swim, but man, you also know you’re seconds away from drowning. However, someone unexpected has Spiderman-ed his way into my life. I was so scared to talk about my condition, just waiting for the second he was going to run away, and to my surprise, that second never came. I’m still navigating my way around, but it’s amazing how alive you can feel when someone sees you and reminds you that you are more than just skin. And I have no illusions that this time together is meant for more than a season, but I intend to learn and experience new things with people because I am not going to waste anymore time wondering if I’m good enough for someone based solely on what state my skin is in. I want to go out and create memories. I want to dance late into the night. I want to laugh so loudly it hurts my stomach. I want to feel the sea breeze on my face. I want to have arms wrapped around me and kisses on my lips. And I want to continue having incredible sex. I didn’t have it for so long, time spent hating my body and fearing that I wasn’t enough for someone.

I think of all these things, these things that comprise my life, and I am in awe. I am in awe of the community of people who are going through the same thing as me and how we are all waving a huge middle finger to a medical system that has forsaken us, leaving thousands, if not millions, of us alone in this fight. I did not spend two years of my life creating a documentary to allow us to continue to suffer in vain. I pray every day that it will make a difference. No one deserves to live in this type of pain. I don’t think I could ever give up on this dream.

So today, on my 4 year anniversary, I gave myself a gift. I flew myself out to St. Louis, Missouri, and gave myself life… literally. Melissa, another TSW goddess who has become one of my dearest friends, went with me to the Ozzy Smith IMAC Regeneration Center to have two stem cell infusions done. One went directly into my hip, and the other into my arm. They are hopefully going to repair not only the damage done to my hip from dancing, but to help kick what has been so stagnant in my healing — arms, neck, and face. There is no guarantee of this. It is an expensive gamble. But I’ve seen the transformation in another TSW angel, Kristen, and I’m going to document if it does the same for me.

I will be taking this weekend to reflect with my dear friend on our journeys, our undying capacity to prevail in the face of darkness, and to commend ourselves for being fierce ass women in a world that tirelessly has tried to bring us down. I may feel weak at times, troubled by my own thoughts, but my love and zest for life has only been strengthened, not destroyed, by this journey.

Cheers, TSW. Thank you for continuing to teach me valuable lessons about compassion and love, and never missing the silver lining in every tough situation that crosses my path. Because there is always a silver lining. Always.

Before TSW

Year 1

Year 2

Year 3

Year NOW

I had stem cells with exosomes I.V. pushed into my arm, and stem cells mixed with my own platelets pushed into my hip joint. The doctor said my platelets (taken out by drawing blood) are used to heal and help act as fertilizer, while the stem cells act as seeds of regeneration. I have a frayed labrum, something the stem cells should hopefully heal. Sometimes it takes a few rounds, but sometimes it can work with only one treatment. Because I am still relatively young and in good health, they are optimistic. The exosomes pushed into my arm are like messengers who help the stem cells target where the damage is done. They may help restart my immune system, kicking my damaged skin. Stay tuned…

“Life is unpredictable,
It changes with the seasons,
Even your coldest winter,
Happens for the best of reasons,
And though it feels eternal,
Like all you’ll ever do is freeze,
I promise spring is coming,
And with it, brand new leaves.”

-E.H.

Love, B. R. Banos