Listen Up

Love, Inferno

I celebrated my birthday today. It’s usually a time of reflection, of celebration of self, or an acute realization of our mortality that has unfortunately progressed. But I didn’t find myself either relishing or despising this trip around the sun. What I did feel though — despondence.

Not the greatest feeling on your big day. Even though I literally had some of the best messages and was surrounded by a bubbly group of immeasurable talent and smiles, at the end of the day, it’s just me facing my own demons. It’s not easy admitting that you are unhappy. I smile, I savor the delightful moments as much as possible, but they are fleeting. And not unhappy in the sense of a negative outlook on life, but more of being in a constant muddle of refrain and limbo without being in control. I can close my eyes and conjure up that time in my life when I felt comfortable and at home with myself. I didn’t need anyone to make me feel whole and I didn’t feel out of place or filled with wanting.

I find I am now trying to convince myself of things instead of actually BEING — happy, cheerful, joyous, content. It’s a state of mind I must consistently remind myself to be. Remember how lucky you are. Remember how awesome a circle you have. Remember to be positive. Remember this isn’t forever.

That slump from being sick for almost 3 years now is sinking in. Like quicksand, my feet are glued, steadily disappearing beneath me. It’s such a hefty deja vu. I can look back at this same time last year and barely see any progress with my physical health. And when the physical health is minutely progressing forward, it’s a shared path with the mental healing. It’s a prison with a lock and no key.

Lately, I’ve been looking back, far back, to times before I was sick. I spend an exorbitant amount of time reflecting on those good memories, wishing to relive that happiness instead of facing each day with all it’s speed bumps. And they may not be speed bumps like they used to be in the beginning where I couldn’t even leave the house, but there is still pain, still anxiety, still an extensive amount of healing. If this was a linear effort, then I feel myself (and most of us) could cope much better. But the longer time passes, the easier it is to grow forlorn. I was more hopeful in the earlier days, honestly, because that is the beginning of the journey. Your tank is full. It is now flickering towards empty.

It is similar to Dante’s journey into hell. Two of the most famous, mythical men he sees are Tantalus and Sisyphus. Both, as punishment for their crimes, were sentenced to utter agony. Not torture in the sense that we fear torture — no eyes being gouged; no intestines being spun out like a music-box. No, it is almost worse. Tantalus, where we get the word ‘tantalizing’, was to spend all of his hollow eternity in waste deep water with ravenous hunger. Above him was a dangling fruit tree, but when he’d reach up for a morsel, it would lift out of his reach. And when he grew thirsty, he’d bend down to sip the water, but it would drain away. Much like going through TSW, everything seems just out of reach. We can see it, we can see everyone else enjoying it, but when we reach for it, we are denied the very nourishment our soul needs. A constant state of desperation. And then the undeniable strain Sisyphus must endure — rolling a monstrous boulder up a hill to only watch it roll all the way down. Imagine the frustration, to never see the success of your attempts. No matter what some of us TSW sufferers do, whether it’s diet, immunosuppressants, environmental change, clothing, etc., we can teeter from almost healed to slopping mess. We roll that ball up the hill and it just slips from our fingers. After awhile, we don’t even want to chase it anymore. Just, fuck it, let it stay down there on the ground.

So, while I am not in screaming, physical pain from my condition, it doesn’t mean that the pain that is still present doesn’t alter my world. I still have to bow out of activities. I still have to figure out showering schedules around whatever events I am going to or need to be at. I still have to worry about up keep throughout the day. I still have to make sure my clothes cover certain areas. I still have to pack up half my room whenever I go anywhere in case an emergency arises. Who needs a newborn when you’ve got this condition?

Along with the TSW, comes the stripping of self assuredness. I attempt, always, to lift people’s spirits. I want people to know how wonderful, beautiful, and worthy they are. But, I find it hard to feel in myself. Much like Roman (Hemlock Grove, anyone?), I wish I could grasp onto a mirror, blood running from my nostril, in an attempt to stare into my own eyes and convince myself of what I hope I help others feel. And then, while gazing at my own flesh in that mirror, I wish I could see the beauty and not just the flaws — my forehead is too large, deep wrinkles too noticeable, nose too pointy, eyes too brown, smile not large enough, teeth too slanted to one side from surgeries, ears too small, skin too blotchy with TSW spots — so quick to tear myself down. Sometimes I even shower with the light off just so I can calm my worries and not have to look down at my broken skin or into a foggy mirror, analyzing all the spots I’m going to have to attempt to fix or just let be before leaving the house.

This is my challenge. This is what I reflected on this week. Well, quite more than this, but after blowing out my candles, holding back to make my most ardent wish, I told myself I needed to keep trying, keeping pushing forward — that all those happy memories I’ve been floating back towards will be in my future some day, and that I need to absorb the happiness here, in the present, instead of just in the past. Perhaps that is my gift to myself, to embrace the present and it’s madness. My present is the present.

It’s so hard, it truly is. To feel stuck in limbo, the first circle of hell, and to feel out of control. No matter how persistent and hard working you are, you are at the mercy of TSW. So, the day I am free of its bondage, I will cry tears of joy, strip naked, and swim in them! And even though this is a rather lonely and rough time, I know I will be okay. Things can always be worse and life could be so much less bright without the people who have stuck around in this disastrous time. And though there are things I miss and people I certainly miss, I can not glue myself to those memories forever. Just need to keep truckin’.

Here is to 29. May she bring with her many forms of healing, golden laughter, and connection to self-worth for this next journey around the sun.

And — my first step this birthday week. Letting the name go.

Love, B. R. Banos

One thought on “Love, Inferno

  1. This is my whole emotional tidalwave summed up so much better than i could ever put it. 3 year tsw anniversary and biggest flare of my life rught now. I got out of the bath and screamed at my husbend and kids last week because i couldnt face any more of this. I was screaming in pain and screaming for help. I scared my kids so they cried. My husbend walked out and slammed the door to get some time away from me and my deteriorating mental health. I was going down and in that moment taking everyone with me.
    Your my tsw twin. Same age same timeline and im so glad you have a voice of which you make good use of. I cant find many people who are 3+ years in anymore. We are now the veterans.
    Much love from me in England. I follow everything you do.
    Soph xx

    Liked by 1 person

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