Disability Acts
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Disability Acts

A Chronically Ambiguous Hope

I want to find hope in this morass.

A yard with trees with a sign that says “Don’t Give Up.” Photo by Rosie Kerr on Unsplash

I found my son’s dead body on the evening of April 26, 2020. Quentin had turned 18 earlier in the month; it would be his last birthday.

Beyond saying he did not succumb to COVID-19, I am still not emotionally ready to discuss the details outside of therapy. I am unable to do much of anything anymore. Most of my days involve listening to the bland noise of sports television while doomscrolling through social media. Grief consumes me, and I struggle with eating, reading, and sleeping.

Whenever I close my eyes, I experience 3-D flashbacks of finding him and random scenes from his all-too-brief life.

Like the red View-Master I had as a child, the images of my son’s life and death flicker in my mind. The tools I have acquired from years of managing chronic illness and disability — prayer, meditation, breathing exercises, listening to music — are powerless to assuage the grief. The torrent of images eventually passes, but it always returns. Maybe, it always will.

Grief consumes me, and I struggle with eating, reading, and sleeping.

Even before he passed away, focusing for more than a short time was hard because of chronic pain from erythromelalgia: a rare disease that causes burning neurological sensations in my legs, feet, hands, and ears. Now, my fleeting attention span has shrunk even more.

My therapist and psychiatric nurse practitioner have diagnosed me with PTSD. I already take medications for anxiety in addition to the multiple meds that I take to manage the chronic pain, which accompanies me each hour of each day.

The pandemic compounds my mental and physical suffering. Because of my illness and compromised immune system, my fear of acquiring the coronavirus rises every time I or one of my family members leaves the house. Do I have my mask? Where is the hand sanitizer? Am I socially distanced enough? Did I wash my hands since I got back home? Did my family?

The pandemic compounds my mental and physical suffering.

My two older children returned to their universities in August, and I worry about them because of their brother’s death and the pandemic. College campuses seem like a coronavirus breeding ground, and my oldest is 2,000 miles away. What if my kids get sick? How will the pandemic affect their education and future job prospects? How will their brother’s death affect their mental health during the academic year? My therapist reminds me that some of this concern is natural, but part of it relates to PTSD.

While mourning the death of one child, I dread the possibility of losing another one.

The constant political upheaval exacerbates my mental and physical wellbeing too. The news plays videos of Black men being murdered by the police, and they fail to first give a warning of the disturbing pictures. Images of lynchings show up in my Twitter timeline. As armed forces shoot tear gas toward peaceful demonstrators, my anxiety increases. My ability to pay attention to anything else decreases.

How can I do anything with unrest in the streets?

Plus, the ineptitude and rampant corruption among political leaders impairs my ability to concentrate. Lack of adequate federal, state, and local guidelines related to the pandemic have led to the deaths of hundreds of thousands. These same authorities drag their feet when it comes to acting against police officers who we have watched execute people. Can I trust policymakers who refuse to listen to public health experts while they politicize safety and consolidate power at the expense of other people’s wellbeing?

At this significant moment, thinking about my own situation feels selfish. Can I get past my own situation and pay attention to someone else? The pandemic compounds my mental and physical suffering. The pandemic and politics are also creating a new social setting in which I and all of the rest of us live.

Focusing, of course, is a struggle because rumination comes effortlessly. I reflect on my son’s life, my disability, mental health, how medications might affect me long-term, weight gain, political uncertainties, my daughters’ futures, the growing number of COVID-19 cases, becoming an empty-nester, combatting racism, and my feelings of inadequacy to meet the demands of this societally transformative moment.

Signs of hope emerge in my encounters with other people.

I want to find hope in this morass. Wallowing in despair feels futile and self-defeating. So, I try to think my way into hoping that things will improve.

When rational, I can detect a few hopeful signs. Sometimes they are faint, yet signs of hope emerge in my encounters with other people.

After Quentin’s passing, friends (some of whom I haven’t talked to in years) called, texted, and sent cards. People expressed their condolences tangibly; they brought food, loaded up a Door Dash account, and contributed to a Go Fund Me. I had no idea how expensive dying is, but the generosity of friends and strangers reminded me that we can and do empathize with one another’s distress.

Both my therapist and psychiatric nurse practitioner assure me that my mental health is as sound as can be expected after such a short period. I trust their word, and they sound hopeful. Large tears trickle now whereas they poured a month ago. With time and work, they assure me, I will be alright.

Finding hope during a pandemic is not easy. However, medical professionals and researchers give me hope. Their courage, creativity, and selflessness help me think that we can face daunting challenges together and maybe find a cure, eventually.

The demonstrations shine bright for me, and concrete change has already begun. City councils have passed police reforms. Cities are painting Black Lives Matter on the streets and removing racist monuments. Corporate sponsors continue pressuring sports teams with racist names to change their designation, and NBA players put messages about social justice on their jerseys. Mostly, though, young people have taken the lead to bring about a just and equitable society.

Finding hope during a pandemic is not easy.

Yet, I have a gift for being cynical. Just as I can think my way into hope, I can look at the evidence and logically conclude that everything is futile.

My mental health may be as strong as it possibly could be, but I continue to feel an empty space in my chest. Flashbacks arise out of nowhere, sleep eludes me, and apathy has replaced my joy.

Neither grief nor PTSD are going to magically vanish, and neither is the incurable erythromelalgia that burns without ceasing.

Heroic nurses and physicians strive to help patients with COVID-19, but many are coming down with the virus. Over 1,200 have died, and all are facing long-term mental health issues. As the virus continues to flourish around the globe, reckless political leadership exacerbates the contagion. The U.S. is another surge of the pandemic with over a hundred thousand cases becoming a daily reality, and pharmaceutical corporations are suggesting exorbitant prices for possible COVID medications. There’s good news about a potential vaccine, though.

But, my anxiety flares and my ability to pay attention decreases. Again. How can I do anything while people are dying from a contagion?

Corruption and ineptitude drench the powers-that-be. Billions of dollars end up in the hands of the ultra-rich who reportedly pay very little in taxes while I wonder if I will continue to receive my monthly disability check. A rush to reopen businesses has led to coronavirus infecting record numbers of people, yet governors ordered schools to reopen in person. As a disabled teacher, I fear my former colleagues and students may end up sick or dead due to the virus.

How can I do anything while people are dying from a contagion?

Meanwhile, racism has not ended. Power remains in the hands of a few wealthy, mostly white men. Voting restrictions hinder millions of Black people from exercising their franchise. Police reforms may have begun, but dismantling oppressive systems barely register in the national consciousness.

As a chronically ill disabled person, I live with the hopelessness of a for-profit healthcare system that links my medical insurance to my wife’s job. What will happen if she loses her job?

I want hope. I long to hope. I grasp for hope. But my will to hope is not strong enough to sustain me when the preponderance of the evidence screams doubt.

Instead of thinking my way into hope or despair, I put my faith in hope. I believe in hope’s power to animate during uncertain times. No one needs hope when they are healthy or when life is easy. Hope exists for apocalyptic times of unbearable grief, global plague, and political disorder. So, I believe in hope now more than ever even when I find any number of reasons to quit hoping.

Hope exists for apocalyptic times of unbearable grief, global plague, and political disorder.

Hope is always ambiguous because it casts a vision of how things can be, not how things will be. There are no predetermined outcomes, and I am not inclined to imagine Sisyphus happy. Unless miraculous breakthroughs happen, I will remain disabled and continue to suffer flashbacks. The pandemic will rage until scientists find a vaccine, and that is not guaranteed.

Nevertheless, achieving a just future requires hoping for it now. Faith in that future despite obstacles enables me to look through the uncertainty with steadfast clarity. Treatments help alleviate my chronic pain and anxiety. Social change is happening. Slowly. If NASCAR can eradicate the Confederate flag from its properties, anyone can change. Maybe.

A profound moment of hope washed over me recently. I watched an interview with 93-year old Opal Lee; she marched in support of Juneteenth becoming a federal holiday. How can I turn away from a woman who has lived through Jim Crow, the Civil Rights Era, and our own times? Even if I cannot march, I can hope. Ms. Opal made me a believer.

Even if I cannot march, I can hope.

Tasting the bitter fruit of mourning, chronic disability, PTSD, global pandemic, and social unrest compels me to believe in hope — especially when I find myself powerless to hope. I cannot promise that the arc of history bends toward justice, but I hope it does. If Ms. Opal can believe in hope, so can I.



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