Two years ago, in these very pages, I shared something deeply personal that before that was only really known by family members and people close to me.
I’m in remission from a medical condition known as trigeminal neuralgia. It’s a condition that affects the trigeminal nerve, a facial nerve that connects the brain with the top, middle and bottom part of our face.
When it flares up and I suffer an “attack,” it’s one of the most intense pains I could imagine anyone ever feeling, and it can last for hours. The best way to describe it is someone stabbing me in the face with a knife, pulling it out, and then doing it again. And again. And again.
It’s a condition so painful and potentially debilitating, it’s one of a handful of conditions that have earned the moniker of “the suicide disease.”
I’m one of the lucky ones, however. My TN is atypical. Whereas many who suffer from this condition go through long periods fearing a painful attack at any minute with short bouts of remission, I’m the exact opposite. I go through years of remission, and then suffer a relapse that typically lasts three months or so.
My last relapse was in 2016, while I still lived in Grenada. And the medical care I got at the campus medical facility at St. George’s University was fantastic. The staff knew exactly who I was, and when I suddenly arrived in the middle of the night crying out in pain, they knew exactly what to do.
They would immediately take me into a treatment room, and put me in a bed. They would connect me to oxygen, and then they would give me as much morphine as I could humanly tolerate.
The bill for such service? Always less than $100. And that’s from start to finish, including a very generous intravenous dose of a powerful opioid.
It’s been three years since my last relapse, and if the past is any indicator, I probably have another few years before I have to really worry about TN again. Except I am worried. Not only about how I will be able to convince emergency rooms during an attack that I need medication that makes a world of difference in the middle of an opioid crisis, but even more — how am I going to pay for it?
Sure, there’s insurance. But even insurance has its limits. There are high co-pays, massive deductibles to meet. I’ll have to find thousands of dollars to pay to hospitals before insurance even kicks in.
And New York City is a number of amazing things, but it’s not Grenada. And the health costs certainly are no match. In fact, I’m more likely going to find myself suffering through an attack rather than seek treatment. When I say it’s “pure hell,” I’m actually understating the anguish I would have to endure.
I shouldn’t have to deal with that. No one should have to deal with that. We shouldn’t have to suffer, or avoid treatment that could make us better, because we have to choose between medical care and something to eat. Or a place to live. Or a way to get to work and back.
My personal situation isn’t that dire, but there are many — including those we all live and work with — who are in that position.
Around the same time I first shared my condition with you, Mayor Bill de Blasio touted a report boasting a significant drop in the number of uninsured residents here in New York City from 1.3 million in 2014 to 704,000 in 2017. Yet, not all insurance is good insurance. In fact, most of it isn’t, failing to cover even the most basic services, like blood work for example.
Let’s face it. Insurance isn’t working. Doctors and hospitals spend a considerable amount of time fighting to treat patients, while shareholders invested in the largest companies reap billions in profits.
Our health is a fundamental right. “Life, liberty and the pursuit of happiness” were the very tenets that birthed our great nation, and treatment for the maladies that affect us through life shouldn’t be limited to those with money, or who were lucky enough to get a pristine health insurance plan.
I am nervous about such a massive change when it comes to health care in this country. Could efforts like the New York Health Act make a difference? Or could it make things worse?
I don’t know the answers to those questions. But if we don’t at least try to do something when it comes to addressing the health needs of you, me and those around us, we’ll never know.
The author is editor of The Riverdale Press.