It’s almost compulsory for a writer to reflect on their past and contemplate who they are, how they’ve grown, and what they predict for the future/what troubles they can exonerate from entering the new year. We look to a non-existent compass because no one has all the answers. Life is not a straightforward path, nor is it a path at all. It is sometimes a deep cavern, a torrential rainforest, an oceanic adventure, and even a bleak desert all in one.
Mine has definitely been a muddy and pedagogical journey. I’ve consistently re-evaluated myself and my surroundings.
After I went through a productive yet lonely summer of finishing up the documentary, DAYS spent in solitude, I tried to put it out of my mind. I was exhausted having it be my center, the one thing my life revolved around. I hadn’t gaged how far I’d pushed my own needs aside to make sure the documentary was finished until I actually sat back and thought, “Well, what now?” It was finally time to start working and piecing myself together, and I wasn’t sure where to start.
What I did know was that I needed to work on being more open. I am not the same person I was before I became ill and I need to reestablish that connection with myself. However, things change. It hasn’t just been about reestablishing, but about planting new seeds, exploring new possibilities that I may not have been open to before or realized I enjoyed that could enhance my way of life. I’d always been such a creative and free-spirited soul, yet I had constrained myself with certain social limitations and what the masses around me deemed acceptable.
My mind is still very much entangled in my past and present woes, battling heavily with my skin, loss of self, PTSD triggers, and always having to determine if any exciting decisions I make will come with consequences to my health. I can be reveling in such an enjoyable moment but be plagued with anxiety knowing I will pay for it later, either with my skin or intense fatigue. It is an elegant but painful dance between not seeing myself as a damaged good but as someone who is healing.
January 25th will make 4 years of TSW. Typing those words is disappointing. It’s not where I thought I would be. Every high I have had is as boldly felt as every low. Friends and family, whenever an occasion arrives, will mention something to do with my skin — “You look great!” — and it’s such a kind thing to hear, but it doesn’t negate the fact that I am not healed and the amount of time and energy my skin still steals from me each and every day. I cringe waking up in the morning knowing very well I’ll have to walk up to a mirror and assess and deal with my dry and irritated skin. I abhor having to base my eventful decisions around when I’ll have to take my shower because my skin will need time to settle. It crushes me knowing my love of physical fitness is disturbed by my skin not cooperating with sweat. And I can not get over how many hours are spent alone at home because my body needs THAT much more extra love than most. Even after 4 years, going from super low maintenance, out the door for any adventure, to this nagging reality has not gotten easier.
But this past November, I attended the ITSAN conference in Atlanta and met an angel. She is a TSW sufferer and she brought one of the speakers who deals with stem cell therapy. It was absolutely intriguing and I was sucked in. It is something I haven’t tried and it didn’t seem to come with the same qualms that pharmaceutical drugs always carry. I am happy to announce (though my bank account is not) that I will definitely be testing out stem cell therapy this new year. I may only do 2 different infusions (because it’s all I can afford, and its not covered by insurance) but hey, they could make a significant difference. Or they may not. Hope dies last, but only because she dies slowly.
But, when it comes to 2019, I don’t want to be completely consumed in anxiety and health issues. I’ve lost a good 2 years of my life to this, unable to explore and be a part of society. I want to make up for those years.
Jedediah Jenkins, one of the most incredible human beings on the planet, finally had his memoir published, and I’ve been drinking it in this winter break. To Shake the Sleeping Self is such a magnificent way to look at your life. He describes what I find to be the quintessential reason why we all lose that newness and vitality about life when we are older, and why time seems to fly by once we reach a certain age. Monotony sets in and we become so used to the everyday schedule of our planned out lives. We have to free ourselves, shake things up, and devour new experiences in order to slow time and breathe in fresh life into our lungs. I love how he talks about writing and how speaking something doesn’t hold us accountable as much as writing it into reality. Once the words have touched a surface, they become sacred promises that push us to complete the task. I want to get back to embracing new experiences, new tastes, new people who waltz into my uncontrollably vagrant yet brilliant catabasis of a life.
This year will be about finding where I fit. What do I want to be when I grow up!? Because I never want to stop growing. I will Peter Pan my way through life. I want to find out where my voice is most cherished and utilized. I want to share stories about overcoming, about faith in oneself, about the underdog, and the phoenix that rises again. It’s not about money, it’s about moments and building a life I can look back on and not be disappointed in because I made the practical choice, not the choice that pulled at my heart. Practical doesn’t always mean right, and passion doesn’t always mean wrong.
Everyday I wake up with reminders of who I want to be and why I am here — I have my wonderful comrade Beth who made me a picture of Esther 4:14, “Perhaps you were born for such a time as this”, and gifted it to me after I interviewed her in Texas. It hangs on my wall as a token, much like my other reminders. I have a massive wall filled with pictures of my travels around the world from shooting the documentary, a colossal white board covered in scribbles of goals and dreams and necessary decisions, and a cork board brimming with faces I love. All of these help me make better decisions towards the person I want to be. Fortitude over failure. Never giving up when you desperately want to give in.
It doesn’t mean I don’t shed tears, that I don’t live with demanding anxiety perched inside my ribcage singing a requiem of fears. It just means I use these reminders and goals to conquer each day knowing I can either let my anxiety lull me into a crippling comatose state, never leaving a cocoon that would ultimately suffocate me, or I can quiet her as much as possible and find something in each day that makes me smile, laugh, and be thankful for another precious day of life. The human spirit needs fuel to flourish. It’s our responsibility to give her our best. Just like our physical bodies need nourishment to work properly, it’s no different for our hearts.
And I am so grateful to certain people who have come and gone, come and dwell, and have delightfully entered my life if only for a lesson. That is, I don’t just mean the ones who have made a positive impact. I am grateful to those who have pushed me, broke me, and have given me unknowing insight that darkness, too, is a gift.
Never stop loving. Never let the world callous your spirit. Never apologize for having a giving heart. I find it scares some people, but perhaps they are the ones who need that love the most. Being vulnerable is a strength, not a weakness. Love is the catalyst for every successful solution.
Except tennis. Love means nothing in tennis.
I see you, loves, especially my TSW brothers and sisters who are fighting through a constant uphill war. Stay diligent. Keep persevering. Find your Shangri-la.
Shake your sleeping self.
My goals and resolutions for 2019
I usually don’t share these. I keep them in the back of my journal for my eyes only. But why not #bevulnerable and set them free.
I always have 13.
- Find a new job doing something I love (writing, film, dance, journalism, fitness, charity).
- Get back into the gym to work on my leg strength that has severely atrophied.
- Have someone in the TSW community give a TED talk.
- Speak my mind even when fear tries to quiet me.
- Consistently find time to write in my journal, at least 3x a week.
- Lessen my social media usage.
- (One I will keep private)
- Work on not feeling guilty or ashamed of my condition (and feeling like a burden); instead remember this healing is not linear and I am more than an illness.
- Dance off, once a week (because that’s absolutely necessary).
- Relearn how to be happy alone, not leaning on anyone else to fill voids.
- Edit my children’s stories.
- If something is hurting me, don’t hold on to it in fear of losing it. Let it go.
- Perform in a dance or aerial show.
2019, be kind xx
Love, B. R. Banos