Erica Stross

                    Erica Stross

Diversity, Equity & Inclusion Consultant

Fifty-four years ago, I was born in Welwyn Garden City, a town on the outskirts of London. I was born ten weeks premature and I was starved of oxygen either before or at birth, causing Cerebral Palsy. The starvation of oxygen left me with right sided hemiplegic, a non-progressive but fluctuating condition that affects my body movement and muscle coordination. In my case I have limited feeling and movement down my right side of my body, and an imbalance of muscle development between the two sides of my body too. I have slight curvature of the spine which causes pain when my back is out of alignment. The trauma and injury I sustained when I was born, and additional illnesses Pneumonia and Empyema, 23 years later, have I believe made me into a more considerate person. I was an athletic, active young child supported by my family – ballet, tap, modern on Saturday’s and swimming and riding on Sunday’s. As a child I got on with life, not believing that my disability would affect the quality of my life. This changed when as a young woman aged 23 years old, I was hospitalized for six weeks with Empyema and Pneumonia. I faced questions about humanity, perceptions, pre-conceptions, sickness, ageing and suffering.

Over the years I have been exploring the distinction between the unavoidable suffering that all humans experience of having a body that will get ill and age, and the suffering of reacting to this circumstance. Is this secondary suffering – either pushing away unpleasant perceptions or building and grasping after pleasant ones – at the root of the restless, unhappiness and discontent we often feel? How do we transform this knee-jerk reactive momentum in the moment and create instead a sense of space and the possibility of choice in each moment, no matter what our circumstances? Is this the key to freedom for all, those with and without mental health issues, disabilities and long–term health conditions?

In my circumstances the options are stark and frequently in the moment. Do I have physical pain, immobility and mental trauma, which is truly horrible, or do I have physical pain and immobility and a sense of space and choice in my mental and emotional responses? I do not have the choice to make my disability and related long-term conditions go away, but I can change how I respond to my situation. The drive for finding a creative, positive response is constant. The need for creativity in our responses applies to all of us. It is particularly apparent and clear to me in the body I inhabit and the self-perceptions that arise due to my circumstances.

These are fundamental questions, but ones I feel grateful to have had to face despite the inner conflict and turmoil this has provoked for me. I would not have had the strength to choose such intensity if there had been a choice. Yet, ironically, the physical disability and the conditions that go along with it, including fluctuating pain, mental and physical pain and immobility, which is so hard to live with is the very thing that drives me nearer to the truth of the human condition. I am constantly experiencing, growing, and living, keeping these searching questions present. Sometimes I feel impaled on the questions about the nature of life and suffering, but the more I wrestle with them, questioning them, taking them deeper – the closer I am to coming to terms with life, just as it is with imperfections, wort’s and all, finding peace and understanding.

Although I have a physical disability and associated long-term health conditions that arise from it – fluctuating physical pain, lack of sensation down my right side, dyspraxia – these reflections or responses to my condition didn’t emerge in any conscious or urgent state for 23 years until I was hospitalized with a temperature of 104.9 oF or 40.5 0C. Prior to this I had never faced my disability and health conditions head on. I grew up in a sheltered, protective bubble with my parents and siblings. When I was 18 years old, I left home, attended university and surrounded myself with supportive friends. Much of the time I ignored my disability or pretended my disability, pain, tiredness, dyspraxia wasn’t there, blocking it out. I was able to keep this illusion up for more than two decades but then inevitably there came a time of reckoning, the illusion came tumbling down around me.

I had recently moved from The Pennsylvania State University, Pennsylvania to Washington, D.C. USA after graduating with a Bachelor’s Degree to find a job. Within a week of moving to a new house share I was being taken to a medical walk-in- centre because I nearly collapsed walking home from work. I was rushed to the emergency room, my right lung damaged, full of fluid. I was 23 years old and in a ward for patients with chronic pulmonary conditions. I was plunged into a strange and frightening world. The trauma of what was happening, shattered my defences. I am not sure – but I had intensive, vivid experiences that changed the course of my life, self-perceptions, the way I perceived my reality and the world around me. I see my life, in a conscious sense, beginning at this time. The trauma and experiences were so intense, vivid and immediate that I could not but be changed by them – and these experiences have driven and informed the direction of my life ever since. Of course, I did not sustain the intensity of perception that arose in that life-and-death experience, but the memory of these perceptions has driven much of my life’s work and focus. Since then I have been on a quest for truth, working towards living in the present moment in harmony with the human condition and humanity in this world.

Over the years I have had several stays in hospital due to my disability and inherited condition – fibral fits, which I grew out of aged 9. However, the time I was admitted into hospital with Pneumonia and Empyema was when I understood for the first time the necessity of taking personal responsibility for my life, my health and wellbeing. I spent six weeks with a lung cleaning machine attached between me and the wall. I lost weight and muscle mass. I was confronted with the medical reality that there are no successful cures for my fluctuating disability and that it was time to come to terms with it – ‘managing, understanding, and taking personal responsibility’. It was the first time in my life when I knew I had to take full responsibility for myself, no one else could try and do it for me. Until then I lived with the illusion, the fantasy that my difficulties would evaporate. I spent years bargaining with myself and others, in deluded denial of what I was experiencing. It was shocking and difficult to realise ‘This is it’ – that my disability did affect my ability to carry out normal day-to-day activities, physical pain, dyspraxia and associated limitations. When I was 23 years old it was really hard to let this fact in, but even then, I knew in my gut that there was something liberating in starting to acknowledge this idea, and I felt galvanised to make the most of my life. Looking back at my life prior to this episode I could see that in avoiding taking responsibility for my life, being open and honest about my limitations I had precluded the opportunity of improving my circumstances and heeling. I was passive in my denial. It was vital this trauma occurred, to wake me up, to realize this. The result of the experience was that I made an active decision to lead a purposeful, proactive life.

When I woke up in hospital with Empyema and Pneumonia I was going in and out of consciousness. The first major experience in my hospital stay was to have a chest tube or pleural vac inserted into my right lung. The next major experience occurred during the ensuing long, long morning and evening. This is when I realized for the first time, with a shattering impact, the absolute necessity for living in the present, moment by moment. I had a temperature of 40.5oC. I knew my temperature was too high, and if I wasn’t careful, I could end up with further permanent brain damage. In that moment, I spent one second at a time looking at the temperature monitor, willing my temperature down from 40.5 0C. I knew right then that I needed to take responsibility for my life whether to live or die. I knew that if my temperature went up a further few degrees I would die. I knew this was a medical fact, but it was metaphorically true too. I spent some hours on what felt like the edge of madness, willing, begging with myself that I could get through the next hour and then the next few hours – one internal voice kept saying, “I can’t do this – It is impossible. I can’t last, it’s too late, I’m going mad” while another voice in my head was competing saying “you have to you are going to” over and over again, for what felt like eternity. It was one of the most intense and demanding experiences of my life. Then suddenly, out of the chaos there irrupted a sense of lucidity and calm that contained another message again as an inner voice that said “You don’t have to get through this hour, you only have to live in the present moment.” In that moment my experience completely changed. It was like a set of dominos collapsing, and all that was left was calm, spirituality, space and self-surrender. Suddenly the moment had changed from an agonised, desperate feeling to one that was soft, full, relaxed and rich – despite my physical state. In that moment I knew I had experienced something real, reliable, and true. I also believed that this trauma would profoundly alter my life and my life’s course would be shaped by it. It contained such questions as “What is reality, perception? What is the future? What are your priorities? In the experience itself there was just a knowledge that much of my pain, stress and anxiety were caused by my reactions and fears, along with a knowledge that I could free myself from these too. For the first time I realized that I could live in the present moment, and this idea continues to support me many years later. The third experience that occurred while I was in hospital occurred a few days later. It was the first time that I clearly understood that it is possible to be mentally agile and work consciously with the mind to transform one’s experiences and perceptions – even in the vice of physical pain. It occurred to me when a young hospital ward assistant and helper came to visit me at my bedside. She was a devout Christian. I was not a Christian, but nonetheless she gave me wisdom. She sat with me and I experienced peace, calm and tranquillity, even while lying there in a lot of distress and physical pain. At this critically important crossroads I made a decision to live, and my life felt qualitatively different ever since. It is as if prior to that point I was alive because I had not died yet, but since that day I have been working towards living consciously.  

The second major trauma in my life around my disability was in 1996, when I was 27 years old. I chose to move back from the USA to England to complete a condensed one year’s master’s degree course in Occupational Psychology. I thought I had finally overcome my dyspraxia tendencies that go hand-in-hand with my physical disability, before I started my studies. I thought I had, but I hadn’t. I was struggling with getting the required sample to complete my thesis and organisation of my thesis as well, when my tutor said she thought I was dyspraxic. I felt as if I had been thrown back in time once again, back to when I was 23 riddled with anxiety, stress and shame. I was in shock and bewildered. In the midst of suffering there I was again, in a ‘foreign’ country (although born in England I had lived in the USA from the age of 13-27), sitting up in bed, wide awake wondering how I could possibly cope, experiencing panic attacks. How was I going to survive, cope with my situation? A housemate in my shared accommodation on the course knew what distress I was in and talked to me about coping strategies. He gave me a priceless gift. He recommended I take-up meditation. I looked around for a meditation class I could attend locally and found one with the FWBO, Manchester or The Triratna Buddhist Centre, Manchester, England. My curiosity was aroused when I attended my first drop-in meditation session at the Centre. I sensed with meditation I had a door that I could go through that would help me make sense of what was happening to me while I was on my master’s course. I left my course at UMIST then part of University of Manchester Business School graduating with a Postgraduate Diploma in Industrial and Organisational Psychology and continued attending meditation classes at the Centre, applying what I had learned at home, exploring my mind and my reactions and responses, while rehabilitating and healing.

As the years have passed, I am clearer about what I am continuing to work on with my practices. It comes down to aversion and reactivity. I experience something I dislike in the form of pain and I react with aversion, avoidance or reactivity – sometimes in exaggerated form, sometimes more subtly. It is as simple and destructive as that, and my moment-by-moment meditation and 7 mindfulness practices consists of trying again and again to re-train this habitual negative attitude and instil a more positive intent and compassionate response. I happen to have a physical disability and conditions, pain, dyspraxia that makes what I am up against very obvious, but we all have aspects of our lives we find unsatisfactory, from the death of a loved one to the milder dissatisfaction of being in a job or relationship we don’t find rewarding. We all have the tendency to push away what we dislike and increase the experience of tightness and restriction – pulling tighter the strings of unhappiness.

I feel I was given gifts when I was in hospital and when I was a master’s student in Manchester all those years ago. A main aim ever since then has been to transform my moment-by-moment reactions so that I gradually I can cultivate positive optimism when my environment or perceptions are causing me trouble. We all have situations every day in which we can’t make pain disappear, and we will have them as long as we live in this changing unstable world. But in this instability, we can find freedom in our responses. We can change our experience of pain – be it mental, physical or emotional – from a thing we recoil from into a fluid experience of the rising and falling moments of sensations, within a broad and kind awareness.

Lasting change comes slowly, imperceptibly, it is not easy. Sometimes I am shocked at how insistent and seemingly intractable knee jerk reactions are, how loud the inner voice can shout, scream, that says “I don’t want this, I’m done with this” but one thing that keeps me going is the confidence and strength that arises when I am able to meet what is happening with honesty and truthfulness – even if it is painful and difficult, not cutting off from the experience nor indulging in it. Just letting it be. There is a moment of experience which has its own energy and choice within it. Looked at positively, I see my meditation practices as repeatedly learning to rest in the present moment finding peace and tranquillity. 8

If I think of my experience of disability and pain in the context of the past and the future it is overwhelming and limiting. My present experience and energy gets lost in fears for the future and regrets for the past, and the quality is one of restriction and hardness. If I remember that the experience of pain only resides in the moment, then it has a different quality. The present moment is infinite and multi-dimensional when one starts to experience it fully.

Say I am chatting to a friend outside. Yes, there can be physical discomfort, but there is also the pleasure of being with a friend, the sensation of the sun, an awareness of nature, feelings of kindness. I think we can become stressed because we have an aversion to life as it happens in the moment and experience the freedom and abundance regardless of our circumstances. I am sure the possibility of there being a spacious, bountiful quality to life is present for anybody in all circumstances.

Another way of ‘harnessing personal suffering positively is to see it as a moment of empathy with others, to be able to walk with strangers. For me this is the most compassionate aspect of living with a disability and fluctuating condition, and it goes to the heart of our shared humanity. When I am able to stay with my suffering in the moment with compassion and kindness, I have felt that I stop clinging to a condition into an empathy which is universal and unified. I feel in touch with all beings that suffer and I care deeply about them. We are no longer separate, In the depth and vulnerability of that experience lies knowledge and wisdom about the human condition. This expansive experience and an antidote of pride that I should be the exception to human suffering instead of asking “Why me?” I ask “Why not me?” My suffering is stripped of personal layers, drama and becomes instead a matter, expression of being human in this changing, unstable world. 9

I have noticed over the years that it is common for people to feel that they have failed when they experience suffering, resistance or unhappiness. I find this interesting. I have certainly felt this myself, and it has a particular effect on people, like me who are living in a non-disabled world. Disabled but not ‘disabled enough’ to be considered disabled by some including some living with disabilities too . Although it is often the very, ‘problem’ of suffering to follow a practice and course of life in the first place. We think we should have reached and attained the learning before we have walked a path. We all to easily make a mistake of wanting and expecting our practices to eradicate life’s challenges. We can start to regard our practices as a hedge fund against suffering and ignorance. But this attitude will frequently reinforce destructive habits and alienate us from our shared experience.

If, however, we can learn to meet our experiences with courage, respect, trustworthiness, and honesty, then our practices can become a real, gritty training ground that can help us engage with the human condition, from the traumatic to the beautiful, with an open and embracing heart.

I am sharing my experience of disability and the associated long-term conditions that go along with it. I understand many people have not heard voices like mine before. People with disabilities often feel that they cannot express themselves clearly and have their voices heard. I want to work in unity, as a ‘Tribe’ with non-disabled and disabled people, to dispel the myths that have arisen about the capabilities and strengths we have to give to society, and the quality of our life. Yes, society and cultures can label us as vulnerable but you can choose whether we are victims. I want people to work with and alongside us. We are not going to be hunted down and killed as we might have been thousands of years ago If we do not fit into a particular tribe. Let us “LiveBe – Live Well With Challenges”.