Jamison Hill is an amazing young man. By following links on Jamison’s blog I have learned how there are many people in our country living with severe chronic illnesses that there are no cures for. They live below the radar. Yet they have this amazing courage that is hard for us to even imagine in ourselves. They are often bedridden and wheelchair bound for all their lives.
Our government is cynically whittling away funding for health-related research that might help them. At the same time, they are putting the country into monumental debt to pay for tax cuts for the richest 1% and by spending frivolously on toys for the military. Meanwhile, these courageous citizens have to live out their lives knowing that only a miracle of politics will give them hope that our country will recognize their situation.
You may question why TCP chose to run Jamison’s story. Is it contrary? In our opinion it is definitely contrary to the accepted meme that American citizens live in an “exceptional” country that cares for all. “Making America Great Again” is making all citizens, including those with severe chronic disabilities feel much less “exceptional”. We can learn something from people like Jamison. This is his story. – Ed.
I’ve had lots of bad doctors. But there are some truly wonderful doctors who shouldn’t be grouped into the category of medical professionals I wish to avoid. I read Dr. Morrow’s posts and he seems to be one of the good doctors.
The issues I’ve faced as a patient dealing with mysterious illnesses, however, stretches far beyond doctors. It’s a broader problem with the medical establishment as a whole. It’s the insurance companies who charge egregious premiums, but cover paltry amounts. It’s the prescription drug manufacturers who can basically charge any price they want. But, before I get too deep, let me give you some background.
About two and a half years ago I became violently sick with the flu which, compounded with MECFS, left me unable to speak, eat, or elevate my head for 18 months. Unable to coordinate my medical care, or communicate much in general, I had to rely on my family and trust they would make the right decisions.
I distinctly remember my mom frantically trying to find a doctor to treat me who didn’t require me to travel or even leave my bed. I needed a doctor who could make a house call in rural California.
At one point my mom called an MECFS specialist, whose name I’ll omit except to say that his office is located in a very affluent community where lots of people vacation. My mom pleaded with his staff to let her talk to the doctor about how my condition had worsened since he last saw me a couple years earlier and deemed me recovered from MECFS. I had not recovered, however, and was now near death.
The woman on the phone said she remembered me fondly even though I’m almost certain I never met her. The woman asked my mom to write a summary of my condition. So she took the time to revisit the traumatic events of my regression. She wrote about how I couldn’t get out of bed and had to keep a washcloth over my eyes at all times, and how I had to be taken to the ER after I developed an enlarged prostate because I couldn’t move from a supine position, and that subsequently caused bladder retention.
My mom wrote down everything I had been through and faxed it to Dr. Quack’s (not his real name) office. A couple weeks later, after no response, I heard my mom screaming at the woman who asked her to fax the summary of my condition. The woman said that the doctor was unable to help or even spare five minutes to talk to my mom on the phone. Before hanging up she told my mom that I should make an appointment to see the doctor when I was better and able to travel to his office.
It was then that I realized I wasn’t going to see a doctor anytime soon, and I resolved to let my fate play out.
Finally, about nine months after becoming bedridden my mom was able to find a doctor to do a phone appointment with her. The 30-minute phone call, of which I was too sick to even listen to, cost me $500. That’s an iPhone. That’s a TV. There’s a lot of things that cost $500, but I never expected a 30-minute doctor’s appointment over the phone to be one of them.
To be honest, it was worth it, though. That appointment led to treatment, which led to where I am today – eating solid food, speaking short sentences, getting around the house in a wheelchair.
Now I’m sure there are some competent MECFS specialists who don’t charge a semester worth of college tuition for a phone consultation, and if there are, please give me their information (seriously, message me), but the vast majority charge outrageous rates.
These doctors make it seem like they’re performing an immense service to a severely neglected group of very sick people. And perhaps they are — great, good for them! But don’t bankrupt us just because we’re desperate. And not to mention, I’ve yet to see any doctor cure someone with MECFS (or at least an example I believe to be true). To me it feels like these doctors are essentially just giving us Band-Aids for our symptoms, or perhaps just peace of mind, until our money runs out. Then they dump us.
The first doctor to charge me $500 essentially broke up me as soon as I could no longer afford to pay for his services upfront.
Don’t get me wrong, I believe most, if not all, MECFS specialists are sincere; I believe they care about their patients and want to solve the MECFS riddle, but to reiterate what the woman in the MECFS Facebook group wrote, I too would be sincere if I was getting paid $1,000 an hour.
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3 thoughts on “When An Illness Doesn’t Count in Making America Great”
Two quick observations: 1.) Naturally, I sympathize with those suffering such maladies. (“There but for fortune go your or I…”) But I think we need to recognize medical science will likely never be able to find an actual cure for some conditions, and those afflicted will need compassionate palliative care for the rest of their lives; 2.) that being said, if you look at this nation’s conduct in the world in recent decades, including within its own borders, what hope is there for an official policy of compassion toward all beings? An approach to healthcare that doesn’t shunt those with a “minority” condition into the corner and practically ignore them because their treatment doesn’t yield a nice Return On Investment?? Nothing but a profound revolution can possibly change things. Are we ready?
Thank you, Ed, for spreading awareness and also your candor. This disease is wretched. I’m nearly four years in and I can’t believe the way we are treated. It’s simply unconscionable. I’m not being dramatic, in any way. It’s shocking, story after story of mistreatment that borders malpractice. I know we will all see better days because I have to believe a treatment is on the horizon. And I’m going to close by saying we all know there’s no cure, we just would like to be treated with an iota of respect and compassion along the way. It’s ugly, Ed, very ugly. Thank you again.
Greg.. Less than three centuries ago man’s knowledge told him that the world was flat. In our lifetime we learned through science that the earths surface was not immovable but consisted of “tectonic plates” that were in constant motion. The discovery of DNA and stem cells are just beginning to open new vistas of curing what were once thought to be irreversible physical illnesses and conditions. There is hope unless these primates now running our country are not thrown out of power.