In the Blink of an Eye, I Traverse Worlds between Ability and Disability

By: Loolwa Khazzoom, Founder, Dancing with Pain

May 10th, 2016 • Mind-Body MedicinePrint Print

People like black and white. Rules. Guidelines. External demarcations of what is and what is not. Take by way of example the tax attorney who lives on the east side of my house. Because I was playing in a rock band and listening to loud music – in particular, while dancing – he decided that I forfeited any and all claims to hearing sensitivity.

Never mind the fact that during phone calls with clients, I routinely have had to stop talking for a minute, to plug my ears and stave off pain, when there have been planes, garbage trucks, motorcycles, or ambulances driving by – even when I have been in the house, with the dual pane windows shut. And never mind the fact that I routinely have avoided social situations – to the detriment of my sense of community, friendship, and belonging – because the volume or vibration of some people’s voices sets off pain that can last hours or days, and because it’s both socially awkward and likely offensive to plug my ears shut with my fingers or wear earplugs at a dinner table.

It’s not just a matter of visible or invisible disability. It’s a matter of perceived consistency. It’s also a matter of a culture where we expect people to lie and mislead us, to attempt to get away with things, and to need to be stopped and/or punished.

And so when I am dancing to loud trance music and ululating in joy at home, but grabbing my ears in agony when a clerk pushes a group of shopping carts past me at the store; or when I am biking up ten blocks of nonstop hills without breaking a sweat, but asking someone to move even farther over to the side, so that I can walk by, when that person already scooted over with what seems like enough room for me to pass, it doesn’t make sense to people. For this reason, they easily may conclude that my sensitivities or disabilities are all in my mind and/or that I am manipulative and controlling.

This never-ending potential for misunderstanding and resulting conflict makes it incredibly difficult to self-advocate for my health and safety. I feel worn down by the ongoing struggle – not only repeatedly attempting to address matters for which people have no point of reference, but also doing so within the span of seconds.

There is no communication shortcut. People do not see a wheelchair, brace, cane, or crutches, which visually indicate a need in a nanosecond. (For the record, even in those situations, people can be obtuse. I recall the incident when I was in fact in a wheelchair, and a woman at the airport literally climbed over me, because she could not be bothered to wait the extra minute for me to make room for her to pass.) I have a strong inclination to self-isolate as a result. It’s easier to just not deal with people, except by phone or internet, where I have some semblance of control over my external stimuli, and I don’t have to cope with people’s reactions to and judgments of my wellness needs.

Our society perceives “disability” not only as something that looks a certain way, but also as something that functions a certain way – namely, in a way that is fixed, constant. And so, when someone like me traverses the worlds of ability and disability in what seems like the blink of an eye, people may feel suspicious: Exactly what kind of game am I playing?

I neither like nor relate to the word “disability,” which is intricately related to why I am able to transcend and transform it, time and again. Darkness turns into light in the blink of an eye. We are the manifestation of constantly moving energy. When we tap into that stream of energy and possibility, we can alter not only our emotional but also our physical realities. Sometimes it may take minutes, other times it may take years. But it is possible to rise above and shape shift, repeatedly. Our state of existence, and therefore our reality of ability or disability, is fluid. And one reason many people do not understand this fluidity is that they have no concept of and have never experienced our extraordinary power of self-healing, above and beyond that which is visible or even understandable.

And so, my neighbor to the east was outraged, albeit in a passive-aggressive way, when I requested that he give me a heads-up about any scheduled jack hammering, during the extended four month period that he had a plumbing company tearing up the street right in front of my house, with all manner of heavy machinery. So that he would understand the nature and urgency of my request, I shared with him up front (despite my discomfort in doing so – he’s not the warm and fuzzy type) that my life was unraveled five years earlier, from a debilitating auditory injury, when I was not given a heads-up before an explosive bang that was part of construction work in the apartment below mine.

It did not compute. Despite several of my attempts to communicate with him the reality and urgency of my situation, he never grasped, validated, or honored my very real need. And so, while my communication and negotiation with him resulted in his providing me general, typically vague, information about when work might happen, he primarily only notified me 3-5 days after my text or email, when that information was no longer helpful (and for the most part only responded when I cc’d my landlady in the correspondence).

With one exception during this extended period, he never took an extra five minutes out of his day to ask the plumbing company when jack hammering would happen, so that he could text me a heads-up; and he most certainly never used his power as the authorizing party for all this work, to schedule the jack hammering on a certain day or otherwise put parameters around when it would happen, to protect me from injury.

His response, of course, was complicated by his personality. Local regulations indicate that as long as jack hammering begins after 7:00 am and ends by sometime in the evening, there is no legal obligation to inform or request the permission of neighbors, despite the known fact that jack hammering produces deafening levels of noise. Someone compassionate and heart-centered nonetheless would not have limited his response to what was compulsory by law, but would have gone above and beyond that law, out of concern for his fellow.

In addition, if my neighbor were the compassionate and heart-centered type, he may have checked in with me about what appeared to be my contradictory relationship to noise. He might have asked me, with an attitude of curiosity, discovery, and care, about the distinctions between what does and does not cause auditory pain and why. I am an open person and, if approached in such a way, would have been happy to share some of what I have learned about the healing and destructive potential of different vibrations, both in my experience and through scientific research in the field.

But that was not his approach. It was one of incredulity, suspicion, and contempt. And so I spent four months more or less living out of my car – waking up at 6:30 or 7 am, despite being a night owl, leaving my house by 8:00 am, and staying away from my home and office all day, lest I be subjected to debilitating and potentially life-altering levels of noise.

Here’s the thing: My life is a delicate eco-system. Over the past two decades, I have self-healed from multiple chronic health issues – including cancer and chronic pain, the latter of which had me alternately bedridden, housebound, and wheelchair bound for shy of a decade. I was able to self-heal, transcending conventional medicine’s parameters of what is possible, through living a highly-disciplined life (among other things, following a strict diet and preparing all my own meals, as well as taking as many as 15-20 supplements, as often as three times a day) and through creating a deeply nourishing environment.

In the latter case, I run my own company from the comfort of my home. I determine what energies come into my life (ie, the people with whom I work); I work in my pajamas or dance clothes; and I follow my biorhythms. In this customized environment, I flourish and accomplish things that even the fully able-bodied are lucky to accomplish. Take me out of that environment, and I can fall apart in the span of hours.

Given how highly functional I am in my own habitat, someone on the outside cannot possibly predict – and if s/he has never experienced disability or chronic illness, most likely cannot possibly understand – the devastating impact of removing me from my environment and daily rhythms.

My energy was thrown off entirely and became completely unpredictable. As an upshot, I dragged through my days, sleep-deprived; I drank way too much coffee, in one case getting sick as a result; I had no energy to pursue regular physical activity or a social life; and I was in a constant state of anxiety. Living turned into surviving. I did my best to stay positive – for example, seeing the extended situation as an opportunity to become a morning person and explore organic cafes and restaurants throughout my new hometown of Seattle. Despite my best efforts, however, the saga took a heavy toll.

Since being diagnosed with cancer in 2010, I took extreme measures to change my life and heal myself on every level – with all matter of implications on the physical, financial, and social levels. For five years, the nodules remained stable. After I moved to Seattle and started my rock band, the nodules began shrinking. Yes I had overcome cancer.

But after the four month ordeal with the neighbor, the nodules grew by 15%. Not only that, but everything in my body flew out of whack. My cholesterol levels, which are supposed to be under 200, spiked to just under 400, and my blood sugar levels spiked out of the normal range, despite the fact that I had a low-glycemic diet, with zero sugar, honey, agave, or any other kinds of sweeteners for five years. The intense and immediate changes were all stress-related – not only from the stress of my life being unraveled, but from the stress of having a neighbor who was so unbelieving of and antagonistic toward me – I believe in large part because he could not or did not want to understand my ability to fluidly or even simultaneously traverse the worlds of able-bodied and disabled.

When we step outside the confines of rules and regulations, we enter the sphere of the heart and intelligence. Here we find what people are made of. They act not out of obligation or fear of retribution, but out of care and creativity, or lack thereof. Those behind the Americans with Disabilities Act made heroic efforts to legislate people’s obligation to behave in ways that are inclusive of those with different levels of ability. And yet, we still have a long way to go in understanding and educating people on definitions and manifestations of able-bodied/disabled, and recognizing the fluidity thereof.

I long for the day when we do not need external demarcations to recognize and validate someone’s health reality and health needs. Above and beyond teaching people the particulars of how energy can shape shift our reality, and how that shape-shifting can lead us to be all over the map of ability and disability, I would like us to move toward a general embrace of trust and compassion – offering people the benefit of the doubt that they are who they say they are and that they truly need what they say they need. I pray that we have the collective vision to really see people, wherever they are, and the care to find ways to work their needs into our needs – striving to hit that sweet spot where things work for us all.




Joss May 10th, 2016

We have wandered so far from community and too are nothing but strangers or even antagonists living side by side.  It is one of the reasons I no longer live in N.A. – this loss of community, of caring, of. as my Ecuadorian neighbor recently said “we just share”.

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