“ Hope locates itself in the premises that we don’t know what will happen and that in the spaciousness of uncertainty is room to act.” ― Rebecca Solnit
“Other eras and cultures often asked different questions from the ones we ask now: What is the most meaningful thing you can do with your life? What’s your contribution to the world or your community? Do you live according to your principles? What will your legacy be? What does your life mean? Maybe our obsession with happiness is a way not to ask those other questions, a way to ignore how spacious our lives can be, how effective our work can be, and how far-reaching our love can be.”― Rebecca Solnit,
In the tender cocoon of bedtime's embrace, a chapter unfolded—an unexpected tale that would reveal the enigmatic layers of existence. Wrapped in the soothing rhythm of familial connections, Joanna found herself in an unforeseen moment, gently tucking her boyfriend's little one into bed. An unassuming request lingered in the air, a plea for a simple hug—a fragile thread weaving hearts together in an embrace of affection. As her hand reached out, an unforeseen choreography unfolded, orchestrating an inadvertent meeting between the tender contours of their skulls.
At first, discomfort appeared as a fleeting visitor, a minor chord within life's symphony. Yet, as days evolved into weeks, the tendrils of unease spread, weaving a mosaic of discomfort that blanketed the sides and the back of Joanna’s head. Concern transformed into a determined pursuit of answers, leading her through the corridors of medical insight.
Within the embrace of medical sanctuaries, a harmony of revelations awaited, each note echoing with a blend of blessings and shadows. The triumphant refrain of "no concussion" reverberated, a chorus of relief in the larger composition of well-being. Yet, this jubilation was accompanied by a sobering truth—a hidden interloper, a brain tumor, had taken residence within the sacred chambers of Joanna’s being.
This revelation cast a pensive veil, a poignant reminder of life's delicate equilibrium. The awareness that her sight, hormones, and even mobility might waver on the precipice of uncertainty brushed her thoughts with hues of vulnerability. The present moment stood in stark contrast to a horizon clouded with questions.
Guided by the wisdom of her neurosurgeon, a revelation surfaced—the dance of life often entwines with silent partners, casting shadows upon the vibrancy of existence. A whispered confession of human fragility, an acknowledgment that beneath the veneer of functionality, unseen stories unravel.
In the aftermath of this newfound understanding, Joanna assumed the roles of both observer and guardian. Vigilant and watchful, she stood sentinel over the intricate rhythms of her own body, attuned to the slightest shifts. An invisible threshold beckoned, a juncture signaling the call for action. A delicate choreography of brain surgery followed by radiotherapy stood on the horizon, casting a tapestry of contemplation upon the canvas of her thoughts.
In life's poetic verses, gratitude blossomed like a fragrant bud, its petals tenderly brushed by the caress of the present. A whispered hymn of gratitude for the symphony of vitality, each heartbeat and gesture composing a precious note within the orchestration of life. Echoes of kindred spirits lingered, their stories woven into the fabric of shared experience, a testament to the subtle murmurs of the body that often bear profound truths.
From Joanna's shared narrative, a timeless lesson emerged—a universal tale that resonates deeply. Amidst life's clamor, the whispers of our bodies deserve attentive ears. The moral resounded clearly—to heed the beckoning call of well-being, to embrace the voyage of understanding, even when the path veers into the shadows of uncertainty.
In this blog post, we delve deeper into Joanna's journey, unraveling the threads of her story and stepping into the resonance of her experiences.
How are you feeling right now? Can you tell us about yourself and can you share with us your journey leading up to your diagnosis of a brain tumor? How has your diagnosis impacted your daily life, both physically and emotionally?
To be honest, I feel fine! I tell everyone that right now, it’s like the opposite of a cold. When you have a cold, you feel awful and like you’re at death’s door but you know you’ll be fine. I’m the opposite - I feel fine, but there’s something very serious inside that needs to be addressed.
I’ve chosen a free-spirited essence for most of my adult life. A life free from the confines of a conventional 9-to-5 existence allowed me to explore paths of artistic expression. My journey encompasses the realms of artist residencies, early childhood arts and drama, and the vibrant landscapes of Aerial and Pilates instruction— to bring movement, joy, and health to others.
Up until the unexpected diagnosis of a brain tumor, my existence was full. Days stretched from dawn to dusk, marked by the rhythm of my teachings, commencing at the break of dawn and occasionally culminating well past midnight. This pursuit bore the nuances of post-Covid resilience, where the quest for financial stability cohabited with a thirst for diverse experiences. An unyielding commitment to creativity, mirth, intimacy, artistic exploration, and travel stretched the expanses of my life. Amidst this whirlwind, I carved precious moments for self- discovery, deepening friendships, and after circuit breaker, the luxury of two whole consecutive days off - a cherished rarity for any freelance teacher.
The impact of being diagnosed with a brain tumour has brought life, and the beauty of inhabiting my body into clearer, sharper focus. I feel a little like I’m living on borrowed time, but it’s also been incredibly rewarding in some ways.
Everything seems more nostalgic in the moment - being able to use a laptop, to use my eyes to see the shades of green as light filters softly through leaves in the breeze, being able to run around and dance and teach - they’re all things I’m not taking for granted. Everything seems imbued with meaning — these acts are a poignant recognition of life's fragility and the beauty it imparts.
At the same time, I feel a bit like I’m living on borrowed time. I feel like there’s so much left I want to do, while I still have all of my body and facilities the way I have it, and a lingering feeling there may not be enough time to do it. There's a subtle, persistent desire to accomplish a lot in a short amount of time. Sometimes it feels as if I have a neverending “To-Do” list. Whenever I feel unproductive or guilty for not working on that list, the tumour acts as a reminder to slow down. To take a deep breath. To enjoy this moment with the person in front of me. To savor the present. To enjoy each moment for what it is. And it reminds me that it’s only possible to do the best I can, in a sustainable way, with the time that I have. Knowing about my brain condition has made me easier on myself.
This diagnosis brings into focus so many existential questions. Who am I without my body? What would I do if I couldn’t see again? If my ability to move and engage with the world changes, what would life be? What would I do for a living? What would socializing be like? These questions, heavy with significance, remain a work in progress. However, a profound understanding endures—I am not alone on this transformative journey. An intricate support network, woven with threads of care and solidarity, accompanies me through the labyrinthine passages of change.
I’ve realized I have a beautiful network of people, and not just one person, I can count on. I have the reassuring embrace of a resilient network woven into my consciousness —a tapestry of people whose unwavering support has illuminated the shadows of uncertainty. I have been so lucky that so many people have reached out to help in ways they can. In moments of vulnerability, it is an invaluable solace to know that a multitude stands ready to offer reassurance, support, and succor.
How are you balancing your mind and soul and managing your emotions while coping with a serious illness, and have you explored any techniques or practices, such as meditation or spiritual practices, to achieve this balance?
My journey within the realm of movement has proven profoundly grounding, my role as an instructor is an unexpected source of solace. The very act of guiding others to establish a connection with their bodies, to embrace relaxation, to accept where they are in terms of progress with movement, mirrors the ways I seek to be with myself.
Whenever I feel doubtful, or low, the act of teaching and engaging in physical activity holds transformative power. Immersed within movement, I can live without worrying for a while and just be. Movement is an antidote that elevates my spirits in a profound and holistic manner. Movement resets my nervous system, instills a sense of security, and unearths depths of strength residing within. It is a reminder that I still maintain a grip over my senses and my physical self.
In addition to movement, I’ve found three additional practices invaluable. They are:
Therapy
Deep conscious breathing
Qi Gong
No matter what you go through or have been through, I think finding a good therapist you vibe with is essential for navigating any kind of trauma, intergenerational turmoil or issues in life. My therapist uses the Internal Family Systems (Also known as Parts Therapy) which help me find a deep peace amidst turmoil. It helps to gently unpack any insecurities I have and empowers me through the process of healing.
I’ve also found the practice of just sitting with my breath enormously calming. Meditation, in the sense of a conscious connection of breath, has turned a deep inhalation into a portal to calmness. Whenever there’s too much anxiety, or uncertainty I’ve found deep breathing, closing my eyes, and going within myself - sensing where there is tension, releasing it or asking that part of my body what it needs - an incredible source of calm. This ritual, inexplicably transformative, gives me a newfound sense of calm.
I came to Qi Gong through a serendipitous practice in Berlin. There, I met a resilient community leader who has recently undergone brain surgery for a series of brain aneurysms. She recommended Xiang Gong, a form of Qi Gong which she said was enormously helpful for her pre and post surgery. Here, the movements are a moving meditation, with the act of taking time to consciously move the body in set, staid acts. I find this so different from my regular practice, where movements have been purposefully created to immediately address pain, and ease discomfort. It has been helpful whenever I feel overwhelmed, to do a series of contained movements to ground, reflect and re-center.
Sharing the joy of movement and the healing qualities of these methods with others has brought me solace during hard times. After I found out about my diagnosis I had a think about what I wanted to do with my life and what I would miss. Teaching was the biggest thing. I cherish the opportunity to guide others toward mindful, pain-free movement, to remind them to breathe and nurture themselves.
I love teaching others how to move well, to give themselves a little reminder to breathe, to take time and space for themselves whenever we need it, to go as far as it feels good, pain free - because I need these reminders, too. I truly believe in the healing modality of movement and I hope that I can reach as many people as possible with what I do. This conviction in the healing potential of movement spurred me to establish an Aerial and Pilates studio—a sanctuary for those who resonate with the concept of mindful movement.
Through this journey of coping with profound diagnosis, the path toward mindfulness and presence unveils itself. My dear friend Lily shared wisdom to help cope with the struggle of uncertainty and finality. She suggested replacing the concept of a "bucket list" with a "gratitude list." With this perspective, the ceaseless pursuit of aspirations yields to the embrace of gratitude for the present. There will be a never-ending list of things that we could all do, or have done better. I found it is indeed, a lot more fulfilling, to focus on what you have to be grateful for.
What values are most important to you, and how can you align your actions with these values in your daily life?
Kindness, appreciation, and wanting everyone to be able to advocate for themselves are deep values of mine and I hope to align and manifest these values in my studio space. At mindful movement, my aerial and pilates studio, I hope people feel safe and empowered to self-advocate within its four walls, and carry this feeling out into other areas of their life. I want this to be a place where people feel appreciated for their work in nurturing students to better health and courage. I hope to create a workplace where people will feel they’ll be emotionally and materially compensated for their hard work.
Through my work of teaching I feel very fulfilled in promoting a nurturing space in which people can also learn how to take care of themselves. And through my artistic explorations, I feel able to create spaces where people can be creative and open.
I’m also learning to value honoring the full range of my emotions, and not shy away from unpleasant or uncomfortable ones. Gone are the days of resolutely enduring uncomfortable emotions and pushing myself to be relentlessly happy or satisfied. Instead, a more intricate dance with my emotions has taken its place. The impulse to surmount negativity has gracefully yielded to a more nuanced approach—an inquiry-driven exploration of my emotional terrain in its entirety. Oftentimes, those unwelcome emotions that manifest bear the semblance of quiet needs, delicate murmurs seeking acknowledgment.
I have discovered that the more attentively I heed these whispers of yearning, the more profound my sense of fulfillment becomes in addressing them. Even seemingly minor aspects, such as feeling undervalued were just signaling areas of my life which could be brought to deeper satisfaction. Being aware of this noise helps to address it and keeps it from spiraling into larger issues.
With this new awareness, contending with burnout due to inadequacy in compensation, has been granted renewed significance. By aligning pricing to accurately reflect the value of my contributions, I have witnessed the emergence of a significant transformation—a transformation that resonates deeply, imbuing my professional journey with an enriched sense of reward.
How can you electively integrate self-care, inner peace, joy, and gratitude into your daily life amidst challenges?
Take deep breaths. Remind yourself it’s impossible to get everything done, and just do the best you can with what you have. I also find a healthy diet (hello greens!) and moving well (doing a mix of strength training, pilates, and gyrotonic) has been incredibly cathartic.
I gaze upon flowers and the expanse of the sky. The drifting leaves of trees captivate my attention. The tender embrace of sunlight and the touch of its rays, along with heartwarming smiles, conspire to bestow a profound sense of tranquility upon me. Knowing that certain elements of life will remain available to others even in my absence offers a small but potent solace. Additionally, I enjoy chocolate chip cookies, twirling through the air, cherished cuddles with loved ones, and the simple act of petting animals. All of these accessible pleasures contribute to my well-being.
In addition I try to practice gratitude for all that I have. I remind myself that we are in a haven of safety and warmth, that we possess not only these physical comforts but also have access to running water, nourishing sustenance, and for me, luckily, the comfort of a supportive community. This infuses each day with an abiding sense of abundance and security.
What steps can you take to be more mindful and present in your daily life, rather than getting caught up in worries about the future or regrets about the past?
Someone inquired about my decision to establish my own studio and my aspirations for it. The presence of the tumor significantly influenced this choice. I simply wanted to start my own venture because of my profound love for it. It's been my life's cornerstone for an extended period, a source of boundless joy. However, I'm also engulfed by an intense fear of the potential day (which I fervently hope never arrives) when I won't be able to continue this pursuit. This dread drove me to invest my all in this endeavor, with the intention of sharing my passions, knowledge, and the insights that have aided me, with as many individuals as possible, in my own unique manner. To me, establishing my own studio appeared to be the only viable means to achieve this objective and to feel genuinely enriched by the experience.
Moreover, beyond sharing my joy and enthusiasm for movement, particularly for disciplines like Pilates, Aerial Arts, and Gyrotonic, my aim was to create an empowering space for others. Frequently, especially within our industry, finding a place to truly flourish – where your efforts are fairly compensated or where people are willing to impart their wisdom and guide you – proves to be challenging.
I aspired to forge such an environment not only for myself but also for those seeking it. This encompasses matters as minor as understanding your contractual rights, to a setting that engages in profit-sharing or offers bonuses based on achievements. It includes consent workshops, fostering the ability to discern internal boundaries between "yes" and "no."
Furthermore, this has been a dream of mine for years, and the present seemed opportune to take action. Regret would likely loom large if I didn't at least attempt it. While the fear of failure once wielded significant influence over me, I now believe that not attempting would be a greater disservice.
Lastly, is there anything you would like to share with us about your experience or your journey thus far? Perhaps, you are approaching this experience with a sense of curiosity and openness, rather than fear or resistance. Is there anything that you feel has been particularly helpful or meaningful for you, or anything you would like to share with others who may be going through a similar experience?
I find myself gazing at the delicate silver linings that grace my life. The discovery of this condition arrived at an opportune juncture, granting me the blessing of unimpeded functionality. Contemplating the preciousness of time within my own skin, I wonder out loud —how would you spend your moments if the tapestry of your physicality were to shift? Would distant horizons beckon you for a final embrace? Would you redefine your very existence? Gratitude embraces me, for I realize that much of my life's canvas already brims with fulfillment.
On this journey, I've been cocooned by the tender embrace of community. I’ve been lucky to meet people who cherish my aspirations and dreams. Their unwavering support and encouragement are a testament to the power of human connection, an ensemble of voices urging me to chase my passions with unwavering resolve.
As I continue down this past I want to remind people that they are not alone. I sought to learn more about my condition and met fellow survivors of brain tumours, and in their shared stories, I found a symphony of reassurance—a chorus echoing both personal narratives and tales of physical recovery. The diversity of these stories, the kaleidoscope of experiences, underscores the complexity of the brain's intricate dance—so unlike a mere fractured bone with a standard prescription for mending. Yet, within this intricate mosaic, a tapestry of support unfurls. I have been so lucky to have many people from my life, past, present, and from far-away countries and conenctions reach out to reassure me and just let me know I’m important to them. Old friends and distant acquaintances have rallied and woven a safety net of comfort beneath me.
In the realm of contemplation, a thought blooms, nurtured by the wisdom of Gabor mate. A connection unfurls between autoimmune disorders and the persona of the people pleaser—an inquiry that delves into the heart of self-sacrifice. How do we, who find solace in giving, carve out spaces of self-care without casting shadows of guilt or neglect upon others?
The journey to answer these questions, to find equilibrium between nurturing others and oneself, resonates as an intriguing expedition upon my current path.
In these reflections, I uncover fragments of vulnerability, hope, and shared humanity. My journey, marked by tender silver linings, continues to unfold—a testament to the intricate dance of life and the art of living with an open heart.
—- Editors Note:
Joanna's narrative is nothing short of awe-inspiring. Her profound journey beckons us to a sacred pause, an opportunity to tune in to the symphony of our own existence. Her words gently guide us to revere the intricate interplay between our bodies and the profound wisdom they harbor. As we tread the path ahead, let us cradle Joanna's luminous insights within the depths of our souls, intertwining her wisdom into the fabric of our own stories. With hearts aglow, let us craft narratives painted with hues of gratitude, stitched with threads of resilience, and woven with the delicate artistry of living with an open and embracing heart. -----
About:
Joanna (@ashblackraven), the radiant soul behind Mindful Movement (@mindful.mvmnt), an extraordinary journey deeply rooted in personal transformation. Guided by an unwavering commitment to purposeful motion, Joanna's own path has given rise to this exceptional endeavor. Mindful Movement transcends the ordinary fitness routine; it's a holistic odyssey that intricately weaves together the realms.
Step into a realm where movement transcends mere physical exertion – it becomes an art form meticulously crafted by Joanna's passion. Mindful Movement stands as a testament to the belief that our bodies are sacred temples, deserving of impeccable care and conscious connection. Yet, it delves even deeper, inviting you to synchronize with the hidden cadences of your body while simultaneously refining your outward expression of motion.
Whether in group sessions or intimate one-on-one settings, Joanna cultivates an environment of self- discovery, empowering clients to unravel the intricacies of their bodies. Their expertise spans from guiding clients toward pain-free strides to unlocking unparalleled excellence in endeavors like circus performances or sports.
But Joanna's impact extends beyond the studio walls. They emphasize the profound significance of mindfulness in our daily surroundings, recognizing the transformative influence of our movements on both our bodies and the world around us. Grounded in the principle that enhanced motion leads to enhanced well-being, Mindful Movement offers tailor-made studio pilates reformer classes, captivating aerial hammock sessions, and holistic wellness workshops.
A notable aspect of Joanna's dedication is their commitment to helping individuals understand and navigate scoliosis curvature through purposeful movement, solidifying Mindful Movement as a sanctuary for holistic growth and bodily harmony of body and soul.
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