Not to despair, though! Dr. F tells me I have a couple of really super options:
1. Pay for the MRI and subsequent services out of pocket — upwards of $20,000 in Raleigh, Duke, or UNC hospitals (my adjusted gross income for 2016 was $9,764, btw); or
2. Go to France, where Dr. F has privileges at a Center of Excellence that specializes in this particular type of brain tumor and where care is available to any human being at no cost, because France is one of those wacky first-world countries that provides universal health care for everyone, regardless of income or nationality or the stupidity of their government of residence.
Although I would really LOVE to go to France, it seems a little extreme when any number of accredited hospitals and centers here in the Research Triangle Park area have the state-of-the-art MRI equipment and facilities to take the 700+ photos of my brain so that Dr. F can eventually rid me of this meddlesome tumor.
Do I really have to DESERVE an MRI in the United States? Well — believe me — I have paid my dues. I've been working for a tax- and FICA-deducted paycheck since I was an 11-year-old farmworker in Minnesota. For more than 40 years, I didn't stop working — as many as three jobs at a time — until this tumor and its sundry accessories put a stop to things (in fact, even though I was desperately ill, I kept working though I was frequently hospitalized or on FMLA, and even kept a second weekend job AND worked three hours a night as an outsourced outsourcer rewriting Indian-style English into American-style English for a housing development company in Bangalore, India, that marketed to ex-pat Indians). Boy, oh boy, did I work to deserve me some health care!
In addition, my family has a long history of military service. Four of my maternal uncles were career U.S. Navy, and my father and his brother served in the Korean War. Both my grandfathers served in WWII. My ex-husband served in the navy, too, although it was the Turkey Navy (his uncle was a submarine commander and his grandfather was a WWII ship captain in the Black Sea; his great-grandfather was a ship captain in WWI and was captured and interned in a Siberian gulag until he and some of his fellow prisoners WALKED — yes WALKED — to Poland and then on back to Turkey). My ex-husband became a U.S. citizen and went on to work in the U.S. defense industry, helping transition GPS from military technology to civilian technology; designing guidance systems for TLAM and SLAM missiles; and he currently oversees satellite technology that keeps U.S. military vessels' locations secret from commercial vessels while preventing collisions at sea.
My nephew Marcos was sworn into the U.S. Marines three weeks ago and is soon headed to Camp Pendleton.
Our family doesn’t just sit on our military laurels; we planted them long ago and tend to them proudly.
My own daughter Yasemin proudly joined the U.S. Navy in 1999. Her boyfriend Tim had also joined the navy. Tim was deployed to Afghanistan a few months before their daughter Leyla was born. Leyla was born in San Diego Naval Hospital by C-section in February 2003, and my daughter Yasemin had severe complications requiring an additional surgery. When they were well enough to travel, I brought Yasemin and baby Leyla home to North Carolina to tend to them before sending Leyla back to the navy. But four weeks after Leyla was born, the U.S. determined to invade Iraq. My daughter Yasemin was one of 400 naval personnel with knowledge and experience on a particular type of sonar/radar and was called up for deployment. She was still not healed from her surgeries, but it was her duty to go, and she went.
She never really came home.
For several years, I cared for her child, Leyla. In April 2005, Yasemin (who had been deployed to Liberia, Haiti, and the Persian Gulf three times) was injured. She sustained a traumatic brain injury and many physical injuries. She was unable to receive immediate care in the Gulf because of heavy combat operations in the area and she was left on a hospital ship for some weeks until she could be sent back to the United States.
Because of her injuries and her instability due to TBI, Yasemin was unable to care for her daughter, so Leyla continued living with me. Yasemin attempted suicide 11 times in her first months back in the United States and was institutionalized several weeks in a state psychiatric hospital to help stabilize her. In all, I took care of Leyla for more than 9 years and my daughter Yasemin still requires a good bit of oversight. Leyla's father remained in the Navy, deployed five times to Afghanistan, Iraq, and other areas in the Pacific. Ultimately, he did not reenlist again and realize his dream of career service, because he needed to come back to the U.S. and care for his daughter. Since 2015, Leyla has lived full-time with Tim and his new wife in Illinois. (I visit as often as possible, but I miss her so much.)
A few weeks after Tim was transitioned well enough to civilian life that he could parent Leyla, I was diagnosed with a 6cm pituitary adenoma with empty sella syndrome and impairment to my optic nerve due to cerebral spinal fluid pressure. I also have autoimmune deficiency, fibromyalgia, a chronic leukemoid disorder and other health conditions. After my insurance-based COBRA ran out, I was without health insurance for more than a year -- with 17 doctors on my list, none of whom I could pay. Free clinics could not take me on because my health needs outstripped their ability to offer care based on my high needs. My endocrine clinic denied me care without insurance or the ability to accommodate the $132 credit remaining on my credit cards; my neurologist would not see me.
When my primary-care doctor’s office of 20 years refused to see me for pneumonia because I had only $30 of the $45 required for an office visit, I went home and immediately attempted suicide, taking every single pill in my entire house along with a few bottles of sleeping pills I bought at a pharmacy on the way home. It seemed like my only option, unless I chose to take my chances on opportunistic diseases I could not afford to fight. (Only through an absolutely extraordinary intervention by a friend in the Netherlands — yes, in the Netherlands! — was I rescued by EMTs and an ER staff.)
Yes, without health insurance, suicide becomes a treatment option.
More miracles! Just a few weeks later, President Obama, unable to get Congressional approval to fill judicial positions to address the backlog of disability claims, appointed an administrative judge to rule on particular brain tumors, including mine. The Social Security Administration finally gave up years of denying my disability status. A few months later, I received Medicare and employer-provided Medicare Advantage (my former employer determined I was retired based on the SSDI ruling). I finally began to receive those regular standards of great medical care.
And because of the Affordable Care Act, my younger daughter Sibel, a university student, was able to finally have health care until she turned 27, thanks to her father's excellent plan (he's in the defense industry and has been working for the defense of the United States since 1988, with presidential honors to prove it).
But that was then.
This spring, when I attempted to schedule the appointment for my annual MRI to check on Anastasia’s growth and development ..... Well, it's France or nothing.
Pardon my French (which apparently Congress is going to make my new second language), Sen. Klobuchar, but WTF?
My daughter Yasemin sacrificed her health and her quality of life for this nation. My son-in-law Tim gave years of his life fighting overseas in deployment after deployment after deployment. My granddaughter Leyla, bless her heart, wandered from one household to another for 12 years of her life, living with me, her mother, and her father in turn. She's been through the hell of seeing her mother in distress and danger, in hospital beds and straitjackets. She's one of millions of American children who are the unsung heroes of our nation through their sacrifices and deprivations. Leyla is an amazing and resilient young woman who deserves better than to lose her Nana (her second mother) because the United States of America -- the very country generations of her family have served in the military -- will not treat her Nana's very-treatable health troubles.
And need I say that I earned health care, too? I raised Leyla so her parents could serve in the U.S. military for a total of 15 years between them. I nursed Yasemin through a difficult C-section while she was a navy radar operator and through her multiple post-military-injury suicide attempts and medical treatments for injuries to her legs. When she came home, I took Yasemin to her VA appointments and fought alongside Sen. Ted Kennedy (before he himself became ill) to reallocate existing VA funding streams to county agencies and medical clinics and hospitals that served U.S. military veterans when they couldn't get into under-resourced and understaffed VA hospitals and clinics and failed to receive mental health care for PTSD and other issues related to their military/war service. I helped get a VA hospital/clinic annex established in Raleigh so that vets don’t have to travel 60-90 miles to VA hospitals in Durham and Fayetteville. I fought for VA-funded temporary housing for homeless military-service vets and then for VA-subsidized permanent housing for those vets and their families. I fought for coordinated care services that ensure veterans here in Wake County, North Carolina, received medical care, transportation, access to medication, and support services that ameliorated need for county- and state-based Child Protective Services and law-enforcement responses to domestic abuse situations in Wake County, North Carolina.
(Those efforts, by the way, became the model for county- and municipal-based military/veteran assistance programs throughout California and really should be the model for every county in every state in our country.)
As our nation debates whether Americans are human beings worthy enough for quality and affordable health care that's accessible to all of us, please keep in mind that my family and countless other families have sacrificed over and over. And over again. Thousands and thousands of our military-service members never came home at all -- but their families should be cared for. We deserve better than to be told, "Meh. Go to France, you fat, tumor-riddled loser," for health care after we served the United States of America through our work and our sacrifice and our citizenship/residency and our tax payments.
I know we deserve better. I know we can do better.
I beg you, Sen. Klobuchar, to continue the fight for those of us who have earned and certainly deserve basic human rights of affordable, accessible, and quality health care. Without going to France, India, the Czech Republic, Poland, or many other countries around the world that have established lucrative "medical tourism industries" based on the moral bankruptcy of a supposedly first-world country that refuses to take care of its own.
I live in the United States of America, growing up on the Great Plains of Minnesota and South Dakota. I played tag with my siblings, cousins, and friends in the soybean fields; I detassled corn to provide the seeds that are planted in cornfields to this day. I hauled rocks out of the rich prairie ground and loaded them on flatbed trailers so that we could till the fertile Midwestern soil and plant the crops that feed our country and provide exports that bring wealth to our nation. I raised my children here, just as my American-born and immigrant ancestors did, and I helped my immigrant husband and immigrant in-laws become proud citizens of the United States of America.
I want to die in the United States of America, my home and the home of so many people who taught me to work hard, be kind, and wear glasses when I need 'em.
Please do all you can — and all you can convince your Congressional colleagues to do — to keep me from having to pack up Anastasia the Adenoma and leave my country and my family. To let me live many more years and die where my family has toiled the land, worked the Midwestern meatpacking factories, built the post-war housing and the skyscrapers of the Twin Cities, and buried its flag-draped coffins in cemeteries like those in Lismore and Cottage Grove and Moose Lakes. I want to be here for my U.S. Navy child Leyla and my U.S. Marine nephew Marcos, and for their children and the children who come after them.
I deserve that. All of us deserve that.
Thank you for the work you’re doing, Sen. Klobuchar. Please continue to fight for what’s right and decent — to “promote the general welfare” that the preamble to our U.S. Constitution promises us as We the People of the United States.
For a more perfect union,
MsSpentyouth