My Experience With A Devastating Illness Was Not Like Melania’s

It’s been eight years since my daughter’s cancer diagnosis and we still haven’t recovered.

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or the last few days, I’ve been monitoring the Amy Coney Barrett Supreme Court confirmation hearings with a feeling of dread.

I can’t bring myself to watch the live proceedings, but the headlines are enough to make it clear that Barrett’s confirmation puts many of the things I value as a liberal Democrat in jeopardy — civil rights, women’s rights, LGBTQ rights, voting rights, and, at the top of my personal list, healthcare.

The fate of the Affordable Care Act (ACA), otherwise known as Obamacare, is balancing on a precipice. It doesn’t look good.

Republicans hate the ACA and want to get rid of it. They apparently have no plan to replace it, in spite of Trump’s insistence that he has a better plan.

It’s a matter of fiscal priorities, I suppose. Allowing the entrenched healthcare system to become something that actually takes care of people is the antithesis of conservatism.

The ACA was supposed to give people like me — the chronically underinsured — more access to care without draining my finances completely dry. I suppose it did help. I’m not bankrupt (yet). When the ACA went into effect in 2014, two years after my daughter was diagnosed with cancer, it gave my family more protection from major health catastrophes. But it wasn’t enough. Now, in the midst of a global pandemic that can lead to extremely high healthcare costs for those who get sick, it’s still not enough.

But at least it’s something.

I’ve been monitoring the news about Trump’s COVID-19 diagnosis too — how he got the best care possible, how he’s now recovering, and how he supposedly understands what the rest of us are going through. “Don’t be afraid of Covid,” he tweeted on October 5th, the day he was discharged from Walter Reed Medical Center. “Don’t let it dominate your lives.”

It would be funny, if it weren’t so existentially ironic. Trump has no idea what a devastating illness can do to a family who isn’t lucky enough to have the kind of resources he has.

My daughter, Ana, was diagnosed with cancer eight years ago. Ana died on March 22, 2017, four and a half years after her diagnosis.

My husband and I are still struggling to recover from the financial tsunami caused by Ana’s illness.

We don’t have residual medical bills, thanks to much fundraising and the generosity of my friends, family, and community, but we’re far from okay.

Ana’s illness set us back years. Loss of work, loss of income, increased expenses associated with traveling to and from the hospital, and the absolute inability to save money for an emergency has left us broker now than we were in our twenties.

I’m not unique here, not by a long shot. A 2018 survey by the National Children’s Cancer Society found that 1 in 4 families lose more than 40% of their annual household income because they can’t work during their child’s treatment. As many as a third of families continue to face financial hardship even after treatment, because of other work disruptions including the need to switch jobs.

There are also financial implications for parents who lose a child. Losing a child can lead to a loss of economic well being because of a variety of reasons like poor mental health (even hospitalization), an inability to work, divorce, and increased stress leading to all kinds of physical ailments.

I couldn’t work for at least six months after my daughter died. I could barely get out of bed. When I started pulling myself together, forcing myself to begin work again, I found that my mind didn’t seem to function the way it once did. I couldn’t focus as well or as long as I had before I lost Ana. I needed more breaks. I was unable to sit in front of my computer for 7 or 8 hours a day.

I couldn’t stand the kind of work I’d been doing for nearly two decades and I often found myself weeping at my desk, or staring out the window of my home office, or crawling back into bed.

About a year after she died, I realized that I had to change the focus of my work entirely. I’m now a professional writer, a job I love, but one that pays a third of what my former job paid. I made the switch to writing about four months before COVID-19 hit. When it did hit, I lost half of my new writing clients in one day. But I guess I should stay strong and not let illness dominate my life, right?

I am so tired.

In case you hadn’t heard, Melania Trump also got COVID-19. In a letter posted yesterday to Whitehouse.gov, she announced that she’s doing well. She opted to treat her illness with “vitamins and healthy food” — whatever that means. She also expressed gratitude for the medical care she received without bothering to acknowledge that this was a privilege and that most of us peasants don’t have access to that kind of care (or to an abundance of healthy food and vitamins, for that matter).

Her letter seemed to imply that she’s just like the rest of us. She and her family got sick. They suffered. They overcame their illness and now they can relate to those of us facing the terrible threat of this virus. I suppose she feels this puts her in a position to share some advice.

She writes:

“I encourage everyone to continue to live the healthiest life they can. A balanced diet, fresh air, and vitamins really are vital to keep our bodies healthy. For your complete well-being, compassion and humility are just as important in keeping our minds strong.”

Thanks, Melania, but you can take your compassion and humility and store it in the same place you put your Christmas spirit.

Here’s what my reality is like compared to the Trump family’s.

I’m terrified of getting sick not because I’m afraid of dying, but because another catastrophic illness will ruin me financially.

I’m terrified of getting sick because if I die, my surviving daughter will have lost two members of her family before she turns 20.

I’m terrified of getting sick because I don’t know where I’m going to find the thousands of dollars I need to pay my health insurance deductible or how I’ll pay my bills if I can’t work, or if I’ll be able to afford medicine.

I have thought to myself, on more than one occasion, that it would be much easier for everyone involved if I just died.

I have some life insurance — enough to protect my family. I’m worth more to them dead than alive. This is not me being melodramatic. This is just a fact.

But thanks for the advice, Melania. I’ll keep it in mind when the hospital sends me away because there aren’t any beds left, or when I lose my house, or when I’m permanently disabled because I didn’t have access to the same level of treatment as you and your family.

Today was the last day of confirmation hearings for Amy Coney Barrett. All appears to be going smoothly for Ms. Barrett, despite objections from Democrats. She will likely be confirmed before the month’s end. Then, I suppose, the bloodlust begins.

Our healthcare system is deeply broken, even with ACA protections in place. Without them, most of us are incredibly vulnerable to the financial implications of catching this virus, even if we’re lucky enough to survive it.

Unless you’re rich and powerful, the system doesn’t work in your favor, even if you have health insurance. My own personal experience with a life-changing illness is a bit different from Ms. Trump’s.

Healthy food and vitamins didn’t save my daughter.

The best medical care in the world didn’t save my daughter.

I didn’t have the luxury of time to reflect on how much the experience of watching my daughter die somehow made me a more grateful, resilient person. Because it didn’t. It made me poorer. It made me sadder. It made me realize how expendable my family is.

Illness leaves us vulnerable to falling behind. It’s why I ended up with so much debt. It’s why even in the months where I manage to pay most of my bills on time, there is never enough money to go around.

I have no reserves left. Getting COVID-19 will ruin me. Getting anything more serious than a stubbed toe will ruin me. There is simply no room for emergencies, but I guess I’ll eat healthy, take vitamins, and strive for compassion. It’s what Melania would want.

Occasional poet. Writer of sad essays. Novelist. Birder and amateur photographer. I enjoy trees.

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