Listen Up · TSW

Inevitably

Today marks my 5 year anniversary of starting Topical Steroid Withdrawal. To think I’ve carried this around for half a decade is mind boggling, but as a friend once told me, “perhaps you were born for such a time as this (Esther 4:14).” I’ve always wanted to believe that. And if I am meant to carry this condition, that I would do so courageously, yoking others along if they could not find the courage in themselves.

These past 5 years have been quite a rollercoaster. Like many others, I’ve had to watch the life I thought I was going to live be shattered into a million pieces, all while sitting back and enjoying the show.

And even though that was, and is, still painful, it is my responsibility to do something about it, other than fall apart. You can’t just sit on the ground forever, waiting for someone else to save you. Hard truth: No one will save you. You can read a million inspiring quotes, and meet people who inspire you, but only you can be the one to get up, grab a ladder rung, and fight the hard climb. There are going to be rungs missing, bitter surprises, and more loss, but there will also be love, and growth, and most of all, a pride in oneself for not giving up.

There are 3 inevitabilities that I’ve learned while experiencing TSW: Heartbreak, Loss, and Mental Exhaustion.

I use heartbreak as the first since your heart is going to break, and for me, that has been the worst feeling. People are going to leave and disappoint you. But that’s inevitable in life, altogether, Bri. True. But, when you have someone you thought would never leave you, or take you for granted in your time of need, and possibly manipulate you, it’s soul destroying. You know you’re not the most attractive person anymore, and that you can barely do the simplest of things, and when I read these venomous comments about husbands, wives, fiancés, and partners belittling their significant other who is already suffering, it boils my blood. You don’t call a loved one ugly, or annoying, or a burden when they already know they can’t do a thing about it. You just feel your heart rip in two when you learn they are having an affair, or tell you they aren’t happy anymore simply because the circumstances changed. And when you are left alone, your world feels like it has crumbled into nothingness. However, not every spouse or partner will leave. Some do stay, and they should, because you are worth that. But I guarantee, even if it’s just with yourself, you will experience a type of heartbreak that no one else can describe if they have not lived with this condition, mostly from all the things you end up losing, not just love.

The loss is the most impacting. Loss after loss. Depending on your lifestyle, some losses are worse than others — Loss of self, of control, of love, of your career, of your friends or family… you name it, it’s on the table. You’re going to be at your worst physically, which is already debilitating, and then you’re going to have to endure these things, either one by one or altogether, fading from your life. I still have to face the reality that I will potentially never be able to perform for a company on a stage again. For 5 years I’ve had to battle with my skin keeping me back from being my most authentic self. I could get ready at the drop of a hat to go out; I loved surprises and adventures; I loved swimming in the ocean — all of that, swiped. Now, I have to assess skin damage, wondering what outfit I can wear that will make me most comforted. I have to assess whether I can go somewhere for a certain amount of time. I have to assess when to take a shower in order to be “skin ready” for an event. There is plotting and planning for every adventure. Surprises give me anxiety because who knows what my skin may be like that day. You lose so much control. People try and give you tips and tricks, as if our skin is the same as everyone else’s. No one means any harm, but the fact is, we are at a loss. I have tried so many different diets, regimens, creams, juices, even a stem cell injection, and it doesn’t matter. I can be fine eating junk food one week, and terrible eating healthy food the next. I can tear at my skin for no apparent reason and suffer for it on a normal day, and then be out in the sun one day and have no major issues arise.

And that’s where the inevitable mental exhaustion sets in. This condition is not linear. It goes up and down and up and down, over and over for some people. There is no set time frame for healing, leaving no light at the end of the tunnel. You are just in darkness until, one day, the darkness lifts. The physical pain in the beginning may be traumatic, but the true trauma starts when you begin hitting those flare stages, when BAM, you are knocked down out of nowhere and have to, once again, navigate how to handle yourself when you’ve been trying to lead a normal life. You become anxious and weary that anything you may do could cause you to regress. It’s tremendous fear. You start to associate your life with “surviving” not “thriving”. All of your energy is put into your health. Will this work, will that work? Do I have enough money for this treatment, or that one? Is this doctor visit going to be pointless because they are just going to roll their eyes at me and make fun of me? It is exhausting.

Now, these 3 chaoses and truths can keep anyone wishing to be left at rock bottom, afraid to start climbing back up the ladder. You feel lost and alone and filled with deafening grief. But, that’s not how I want to live my life. And neither should you.

When it came to heartbreak, it did a number. My marriage turned to shambles just when I started to venture into a new job, as well as kickstart my fundraising for my documentary, Preventable: Protecting Our Largest Organ. I felt mentally abused, let down, and sadly, a loss of all confidence. I would have nightmares about being with other people. There were nights I would wake up, heart racing, petrified of having to start over alone, knowing that I barely loved myself like this so how on earth was someone else going to accept all these physical flaws and ailments?

But they will. You just have to let them. And quite frankly, this condition helps weed out the men who aren’t worthy of my gracious love. I am a physical Rorschach painting some days, and lately I’ve been a bruised up mess, but if someone isn’t able to see a person who has so much to give besides a fantasy reflection, then I don’t want them. Looks fade. Things happen and aesthetics can be lost in a heartbeat. But, things like a beautiful soul, endless silliness, and loving loyalty and compassion — that stays. That’s what people fall in love with, and we have to let them. For a while, I thought perhaps not being in a real relationship would ease my heart and it wouldn’t be broken. But let me tell you — it breaks all the same. Don’t settle for less than you deserve simply because you are going through something you can’t control. You deserve all of someone because you should give them all of you. Don’t hide. You are enough. You are worthy of so much love. I know I am. Don’t allow heartbreak and people leaving you to callous your heart or keep you down. Use this pain and fuel to help others see how wonderful they are, and that living with a chronic condition should give you the capacity for more love, not less.

I lost my career as a performer, as well as the opportunity to be a personal trainer. I had just passed my certification. When I had to concede and start working as a substitute teacher back in my hometown, where I still do not want to end up, it was scary. It had been almost 2 years of seclusion away from the real world, living at my mother’s, to then be shoved into an atmosphere with raging teenage hormones and kids galore, and responsibility, which only provoked massive anxiety. I had no idea how people would take me. I was super blotchy, with short hair, frumpy clothes so that I was comfortable, and I sometimes had to wear gloves on my aching hands. I didn’t want to make friends or talk to people, scared of judgement. Plus, I had so much to get done everyday when it came to setting up and getting ready for the documentary. But then I realized, being vulnerable and open gave me power to overcome some of my dread. I still have trouble looking people in the eye or being out in certain public situations, but by allowing people to see all the ugly pieces of yourself and letting pride go, it’s amazing. It’s amazing because you will see what a difference it makes with your relationships and conversations and connections with people. Almost everyone carries a slight fear of what others think. But you can become your most authentic self by sharing the best and the worst of you, because we are all human. We all struggle with something and if we don’t stop hiding what we find to be unlovable or unforgivable, we will never grow and end up staying stuffed in these small pots and never reach a place of true freedom, of peace, and most of all, joy. Happiness will forever be a wavering state. There are some days I am pitted in sadness and my heart is heavy and my mind is devouring any sort of positivity, but by the time my head hits my pillow at night, I am always conscious of the joy I carry. She is a constant amongst any of the loss. You can’t lose that if you practice gratitude. Shit can be breaking down around you and you’ll still be able to find the grace in it all.

How you deal with the heartbreak, the mental exhaustion, and the loss is up to you. You can throw a constant pity party, or you can actively create a new and better ending. Find something worth getting up for in the morning. Explore books and new ways of thinking. Own up to your part in your story, because we may be going through something that is out of our control, but we can still fight and win. Everyday may not be a win, but we can make it the best it can be.

Start counting the blessing that have come out of this condition. It’s hard at first, but I promise they are there. I truly believe that suffering of this enormity breeds more joy and understanding that life is precious over those who have never suffered. It’s a massive wake up call to cherishing all the big moments, as well as the small. Revel in being able to do small things. Find happiness in moments that perhaps others would look over. We should breath all of life in, the good and the bad. Everything can be a lesson. I don’t know if I believe in the saying, “Everything has a purpose,” because I think we give it purpose, no matter what it is. It’s our responsibility to take each situation we face and find the gravity of it; to figure out a way for it to be useful in our lives.

That’s how I made Preventable. If I was going to be suffering this much, and losing this much, I might as well make my suffering count. At first, it was just short videos and blogs, gaining a small following, which was incredible since it will always feel good to connect with others. To know you can use your talents to help others is a tremendous gift back. But then, I felt like those things weren’t enough, that I needed to go bigger. So, I toiled for 2.5 years creating this documentary about TSW and all the facets of life it touches. I hope that everyone who watches it feels either informed or hopeful or a sense of peace that they are not alone in their pain. It’s my love note to my community. I still don’t know how I did it — plenty of mental breakdowns were had — but when you know people are counting on you, you stick to your word. You push, and survive, and don’t let them down.

This past year, in general, has had it’s peaks and potholes. I had lost a bit of peace, experienced flares, felt pounding amounts of anxiety, and a painful tear in my heart. So, on New Years, I stayed home for the first time ever, and created a vision board. I highly recommend it.

Peace is a big player. And I’ve already found some by renting my own place this January. I don’t feel like such a burden or at the mercy of others. I have my own home, where I can sit with my own thoughts, and be on my own. That’s important to me.

I want to write more. I have these stories that I’ve been sitting on that I can’t wait to dive into and explore. I love writing children’s stories as well as screenplays. Who knows if I am really any good, but it feels good. I hope one day to write something that matters and connects with people, kids or adults.

I still want to be an advocate. I want to be a lighthouse. I want to make an impact like Cheryl Strayed, Erin Brockovich, and other women who didn’t give a shit what people thought.

I want to travel and never stop growing in seeing new ways of life, experiences, and taking in a world worth exploring.

And I want to find love. Real love. Someone who will love all my cracks and edges, and I can do the same for them. We are meant to fill those holes with love and grace. I don’t want to be a side piece or give myself to people who don’t want to claim all of me. We lose ourselves by settling. I lost myself. You deserve the love that you give. I know someone will be lucky to have me, and I cannot keep thinking about it in the reverse. A friend had me recite that “I am the catch” a few times out loud because there are still days that I forget that, and I need to live that. Real love.

Five years. You have taught me so much —

That compassion is built in the hard times. That love is meant for me. That I will always hit my goals, no matter how big, because fortitude lives in these veins. That being vulnerable comes both with mar and magic. That being open is the only way I wish to live. That I still have a good climb left before I am out of this valley. But… that is life. It is my life. I am always going to make the most of it.

Stay tuned. My goals are pretty big at the moment. Let’s see how they manifest.

My year — the ups and downs

Love, B. R. Banos

5 thoughts on “Inevitably

  1. Beautifully written briana, sat here tearing up as it sums everything up that I find so hard to explain to others when they ask .. how are you feeling ? .. coming up 5 years tsw in March x much love and happy tsw anniversary

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  2. Yes! Happy 5 Year Anniversary Briana! Someday you will look back in awe at how much you have accomplished for the world and for every TSW warrior during such a deeply challenging time. You Are a lighthouse. You Are a writer. You Are an advocate. A change maker. A visionary. A Love. Before Preventable you helped me find a way to laugh as a caregiver when I could not even smile. Your resilience, wit, wisdom and spirit continues to shine outward and onward! Thank you!!

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  3. You are one talented writer Briana. So positive. Having had two kids go through severe eczema and now multiple food allergies I can definitely relate to heartbreak, loss, and mental exhaustion. It’s very hard letting go of the life we imagined for ourselves. I had to grieve that and start finding a new normal. Thank you for such an inspiring read.

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