I Died When I Didn’t Have Health Insurance

And I will die again without the ACA. Now you know someone.
03/24/2017 03:44 am ET Updated Mar 24, 2017
House Speaker Paul Ryan at a news conference following a GOP party conference at the Capitol on Wednesday in Washington.
ANDREW HARNIK / AP
House Speaker Paul Ryan at a news conference following a GOP party conference at the Capitol on Wednesday in Washington.

I’m on the mattress on the floor, except I don’t remember lying down. I’m fully clothed. How did I get here? Did I fall asleep? I feel hot and sick and tired; my entire body shakes. A sharp pain goes through the length of my left side. I try to move my arm and can’t. I try to move the other, but it doesn’t move the way I want it to. My whole body feels as though it fell asleep, but the tingling sensations are sharp and angry.

Phone. Must get phone. I concentrate my aim. I grab for it wildly. I can’t breathe, but I am breathing. No, I can’t breathe. I grab again – success! I’m drained now, and foggy.

I wonder if I should call 911, but decide against it. I only go to the emergency room if I know I am dying. And now, I’m not quite sure. As soon as I seem to form a thought, it evaporates. There is an open conversation on my phone: Chase. I text him.

ME: feeel strage, somthgn is heppeninf.

Chase: Are you okay?

ME: No, cant breath.

Chase: Do you need to go to the hospital?

I feel overcome by needles tearing at my flesh, and crash into oblivion.

***

Before the Affordable Healthcare Act (ACA) several Americans were denied health coverage due to preexisting conditions or charged much more than other people their age. One common misconception is what constitutes as a preexisting condition when it comes to insurance companies denying people coverage. Many people think it is only for life-threatening illnesses like Cancer or HIV. However, before the ACA, millions were denied insurance because they had asthma or diabetes.

The truth is, if you weren’t in perfect health, insurance was either financially impossible or not an option at all. As in, you could offer up millions a month and insurance companies would still reply, “Um, that’s a hard pass.”

***

When I wake up, my head feels heavy and hurts, as though I’ve been whacked by several mallets. I try to get up and fall off my mattress. My stomach rolls away from the rest of my body. I can hear my own dizziness. I’m going to be sick.

It takes me almost a half an hour to get to the stairwell. I crawl my way up. By the time I reach the landing, I am confident I can stand. I hold onto furniture and make my way to the table where my grandmother is sitting, doing a word puzzle. When she sees me, the color drains from her face.

Are you feeling all right?” She asks, trying not to hover.

“Not really,” I admit, but leave it at that.

She wants me to call the doctor.

I don’t have a doctor here, because I don’t have insurance. I don’t have insurance because I’m uninsurable. I need insurance so I can afford to have a doctor. I need doctors because of my heart, brittle bones, and the shunt in my brain. But that’s why I’m uninsurable.

I’m dizzy again.

My grandmother finally convinces me to take my temperature: 104.9. I know that can’t be right so I ignore it and take a shower. Once I’m out I take it again: 105.6. The thermometer must be broken.

***

Many new college students realize when they apply for financial aid that their parents make too much for most financial aid programs, but don’t make enough to pay for college. There is a similar problem with the ACA and certain middle-class demographics.

For low-income households however, many were able to afford insurance for the first time in their lives. Conservative estimates state that more than 20 million people obtained insurance because of the ACA while higher estimates put that number at 30 million.

The ACA is far from perfect, but doesn’t it make more sense to try to amend and fix parts of something that has provided millions of people affordable healthcare coverage than to start over, causing millions of people to lose their healthcare coverage?

***

I think I technically died in the ambulance first. When the ambulance arrived at the trauma center, doctors and nurses were waiting for me. My body wouldn’t stop seizing. They packed me with ice to bring the fever down: 109.6 and counting. I wasn’t responsive upon arriving and sometime shortly after I died.

I’m not sure how long I was gone. Not like I kept a stopwatch. And once you come back everyone is so focused on the “miracle” and then trying to keep you from dying again, I don’t have solid numbers. I know it was longer than six minutes and I think it was longer than ten. I know it was less than fifteen. I always like the number twelve, though I’m not sure why. So let’s just go with it: I was dead for twelve minutes. No heartbeat. Not breathing. No blood flow. No physiological response. Dead.

There wasn’t any tunnel, and I didn’t float over myself though I distinctly remember a frantic conversation about getting a spinal tap and meningitis. In theory, this conversation took place while I was dead or near death. So, who’s to say?

I died on my twenty-fifth birthday, nearly to the minute I was born. How is that for symbolically coming full circle?

Well, it’s not like I’ve ever been subtle.

***

On September 17, 2009, the American Journal of Public Health published a study, which found that nearly 45,000 annual deaths are associated with lack of health insurance.

It was published 51 days after I died.

What is the number of my life’s worth? What is the dollar amount?

What is the dollar amount for the other 44,999 lives that will be lost in the first year that the ACA is repealed?

***

I’m sitting in my dialysis chair, trying to tell myself to breathe. I hate dialysis and I swear I get all the bad news when I’m sitting in this damn chair:

Your new fistula failed.

We need to up your chemo.

You keep clotting off the machine.

We need to put in a feeding tube.

Your organs are failing.

You have a clock ticking away the minutes of your remaining life. There is no way you’ll beat that clock. Just sit and the chair and listen: Tick. Tick. Tick.

In that chair, I was told that the county aid I used to pay for dialysis was dropping me. Medicare would pick me up, but it wouldn’t be retroactive. Medicaid would be, but there was no guarantee I’d be approved, even for someone who lives in a hospital, having dialysis three times a week for five hours and plasma exchanges and blood transfusions for four to six hours on alternating days. Someone confined to a wheelchair because they did not know how to move with forty pounds of fluid they couldn’t shed. Low blood counts. Bone marrow problems. Was anything in my body working?

And what did it matter now? No health insurance while I waited to be approved for Medicare meant no more dialysis. No more immunosuppressant treatments. No more plasma exchanges or blood transfusions. It was likely I would die, but now it was certain.

“I’m sorry, but you should be eligible for Medicare soon,” the woman told me.

She told me I could appeal, but the appeal went to her so what good would that do? I could fight it legally, but I had no legal standing. I know she didn’t have it out for me, but she had to reconcile a bottom line: I was too expensive to be given a chance.

***

My husband and I are sitting in the dining room. I’m fuming because I don’t understand how an intelligent, compassionate person can be so fucking obtuse.

“Now is the time you can’t afford to be silent. This affects me. The person you love. It’s my life, and it is literally life and death!”

He always thinks I overreact because he has faith in… neither of us are sure, but it’s there and obnoxious and attached to nothing.

“I just can’t believe that someone like you would be turned away because you don’t have insurance,” he says in that sweet, slight condescending tone that makes me want to scream.

“Believe it!” I cry. “It happens! It happens to people like me! It’s happened to me!”

He looks at me startled, before his face sets into a look of disbelief.

“Remember when I told you about that writer?”

“Yes,” he says slowly.

“I only received that because I was already denied continued medical care.”

Mostly. The dialysis center was fine billing me even though I couldn’t pay, but the drugs and other treatments – nope. It was only through a few private contributions that I was able to continue treatment.

The truth is, people are turned away for lifesaving medical care because they do not have insurance and are unable to pay out-of-pocket. It happens. It happened to me in March 2010. Medicare didn’t approve me until May. Medicaid was June and then went back and was retroactive. For fifty-eight days however, it was unknown if I would have healthcare coverage and without being able to pay, was denied medications and services I needed in order to have a chance.

That’s the system at work. How much is my life worth? Less than $5,000 according to the program that dropped me.

***

Any one of my 12+ preexisting conditions makes me uninsurable. Without health insurance, I will die. It’s not an exaggeration. I will need another open-heart surgery soon. My kidneys are stable now, but need serious maintenance checks; I have a shunt in my brain that drains my spinal fluid. It needs to be replaced (brain surgery) an average of every fifteen months.

The next time you hear one of those “loud liberals” yelling about how people that will die when the ACA is repealed don’t shrug it off. Don’t dismiss it. Don’t think it’s posturing or sensationalism. Because now you know me. Whether it is my heart or shunt or kidneys or that pesky bone marrow disorder, I will die without the ACA. Now you know someone.

How do I know I will die? Besides understanding logic and probability, I’ve been there and done that.

If you’re against the ACA because you feel it is too expensive, I want you to think of a number. Stop. Do the math. What number makes this too expensive? Not in terms of the national budget, but to you. What number would make it justifiable, something that could be salvaged? What’s that magic number? Do you have it, have you figured it out?

Now repeat after me, and say whatever that number is when you get to X:

“Michael Whelan’s life is worth X to me.”

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