In My Chronic Illness, I Found a Deeper Meaning

In My Chronic Illness, I Found a Deeper Meaning – The New York Times – Jan 18 – by Elliot Kukla

I’m not usually a fan of “I accepted my pain, so it got better” stories because they so often reach an overly optimistic and, to me, unrealistic, outcome. But this essay paints a far more realistic picture of what acceptance might look like and how it could be nurtured.

…I had discovered that I was no longer trusted by my doctors about my own body or experiences.

I reported odd, terrifying and sudden physical changes; they recommended cognitive behavioral therapy and Weight Watchers. I felt exiled from the world of the well, isolated by thick walls of suspicion.  nothing prepared me for the outsider status of being chronically ill.

our society fears and rejects the core human experience of being ill, of having a body that gets sick, that ages, that is not controllable

I went from doctor to doctor looking for answers, but overnight I had gone from being a trusted rabbi and chaplain (who works with seriously ill and dying people on hospital medical teams) to a “hysterical” chronically ill person.

Though I had seen it happen to my clients, I now understood firsthand that being disbelieved is nearly universal for people with chronic illnesses, especially those that are largely invisible or hard to diagnose or both.

I had believed that as a health care professional, equipped with skills and advocates to navigate the system, I would be treated differently. I soon learned how hubristic that was.

Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines

My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to.

The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.

Like most of us, I had been raised to see illness as something temporary: a stopover on the way to recovery or to death, not a place to live.

But weeks, months and then years passed, and I did not get better. My doctors, and even some friends and family members, suggested that I could get better if only I tried harder, relaxed more deeply, thought more positively. I became a lightning rod for others’ fears of disability, dependence and fragility.

For those of us with invisible illnesses, this is important to understand: people will shun us not because of who we are or even how we are, but because we are a scary reminder of what disasters could happen to them too.  They tell themselves that we must have done something “bad” to deserve our fate (something they would never do).

Humans still have a primal instinct to shun the sick, which promoted survival in primitive societies by stemming contagious outbreaks. But part of being “civilized” means rising above such base instincts and aiding survival by helping the sick recover.

…sometimes, sick people just stay sick.

And that fundamental undeniable truth is hard for any of us to accept. For both the sick and the well, illness is conceptualized as something that comes and goes.

With all our modern medical technologies, it seems impossible that a known medical symptom, especially one as common as pain, sometimes *cannot* be cured or fixed,

And there’s no meditation, medication, positive outlook, exercise or smoothie that can fix it.

Most pain patients have run the gauntlet of non-opioid pain treatments, always hoping for the best, sometimes enjoying a brief period of placebo effect before returning to the same pain, over and over, until we are left with opioids as our only option for effective pain relief.

Eventually, I stopped hoping to be well, or even pretending that I lived in that future-heavy land of hope anymore. I stopped trying to “overcome” my body and started living a present-tense life in chronic illness. As the pace of my life slowed, I could appreciate sensual pleasures in a new and heightened way.

With great difficulty, I learned how to accept care.

I had been fiercely independent for most of my life; now, as fatigue gripped my body, I needed help preparing food, showering, doing laundry, managing my medications. This demanded a difficult, profoundly spiritual vulnerability. I realized that if I were truly to see myself as equal to my seriously ill clients, and not performing a kind of “charity” in my work, I had to come to terms with the necessity of interdependence.

With the typical hubris of the healthy and an excellent income from my career in high tech, I always assumed I would be the one doing the helping.

I would make sure all my friends had whatever material and medical care they needed and I would nurse them back to health when they were sick. And then…

I experienced a role reversal: the helper now needs help.

Over the last decade of my disability, I’ve learned that far from being a societal burden, the “needy” play an important role in society as well: they allow others to be generous and provide opportunities for others to experience that good feeling of being helpful.

If none of us ever needed help, none of us could practice generosity.

We are born needing care and die needing care, and I am no exception. At brief moments in the middle of life, we hold the illusion of independence, but we are always driving on roads we did not build, eating foods we did not pick or raise. Allowing the illusion of my own independence to drop away unmasked a fundamental truth of being human.

Greatly overvalued and practically worshipped in our culture, this individual “independence” is a chimera, an impossible concept uncoupled from reality, a sleight of hand/word that blames us for needing help.

Like many people, I had once measured my worth by my capacity to produce things and experiences: to be productive at work, share responsibilities at home, “show up” equally in my friendships and rack up achievements. Being sick has been a long, slow detox from capitalist culture and its mandate that we never rest.

Slowly, I found a deeper value in relationship beyond reciprocity: an unconditional love and care based in justice, and a belief that all humans deserve relationship, regardless of whether we can offer anything measurable back.

Eventually, my body did change. I am now able to stay awake longer, and my pain has receded to a dull throb. I can leave the house more; I can visit my clients and mentor my hospice volunteers, for which I am grateful. But I don’t see myself as cured, nor do I imagine a cure will come.

As I age, my body and mind will surely become more disabled. I will lose cognitive and sensory capacities. My skin and muscles will sag and disintegrate. I will depend more and more on other people. I will not be able to control my bowels or my surroundings as tightly. I will lose teeth, hair and precious memories.

This is not a tragedy. This is what it means to be human.

Worth reading in its entirety: In My Chronic Illness, I Found a Deeper Meaning

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