With the Medicaid cuts as they stand in the “Big Beautiful Bill”, it is well past time I tell my story. The work requirement *seems* common-sense, but I want you to read this with an open mind to the complexity of each individual situation.
I enlisted in the Navy in 2004, shipping to basic training in March 2005. I turned 21 a week after training began. I was hand picked for a 900 division (triple-threat performance-based division), based mainly on my ASVAB score of 94, and placed in the position of Yeoman when my administrative skills and leadership qualities became apparent.
I ran in front of my co-ed division, as they marched in formation, to each place we went. Our meals were in a galley far from our barracks (ships), and our classes were held on the other side of the 1,600 acre recruit training command. I carried a 45 pound messenger-style bag that held information on all 80 recruits in my division, as well as a variety of paperwork I needed for my job. With the exception of severe weather, I was required to run with this everywhere I went, while my division marched slowly behind. I preceded them to each destination to prepare administratively for their arrival.
I slept an average of 4 hours a night. Sometimes less. Rarely more. I worked in the office inside the female barracks well into the night. In the middle of the night, we each were woken up when it was our turn to iron our uniforms and shine our boots. I did not have time to study classroom materials to prepare for tests, like the rest in my division. At 6am, "Reveille, reveille, all hands on deck" blasted through the speakers, starting the timer of how long we had to dress and make our bed before inspection.
With less sleep, and higher energy requirements, than the rest of my division, I ate as much as I could at each meal. I piled up my tray. At each table there were peanut butter and jelly packets. I asked for extra whole wheat bread, and when my meal was finished from my tray, I made PB&J sandwiches and scarfed them down. I was 130lb, mostly muscle, and felt like there was never enough time to eat as much as I needed. Three meals, no snacks.
I was happy. I smiled even through disciplinary actions (such as helping someone instead of delegating). I felt fulfilled, worth something and thrived under the forced discipline and rigid structure. My (now diagnosed, unknown then) autism and ADHD were in heaven. I had ‘felt safety’ for the first time in my life, but that’s a story for another day.
I was nominated for the Military Excellence Award, the highest achievement in basic training. I was one of 4, out of 600, from our graduating class. As someone who barely graduated high school, and felt worthless and stupid in my life up until that point, I finally felt ‘good enough’. For the first time in my life, I felt like I was where I belonged.
We all went through 2 rounds of vaccinations. It was an assembly line with arms, legs, butts, (I can’t remember all the places), being poked, but it felt like overkill. I couldn’t even tell you what the shots were for, as I still have no record of them, and neither does the VA. The day of the 2nd round of vaccinations, many of us were showing signs of being sick. Normally, vaccines are not given to sick individuals for a reason, but this is the military where you don’t have a choice, and we were recruits scared to show weakness or vulnerability, and thus would not go to medical so we would not appear to be ‘malingering’. Within days, half of my division ended up getting pneumonia, and ironically, half of those were viral and half bacterial. Some ended up unable to walk, severely sick, confined to their rack, until they recovered.
Within a week of the 2nd round of vaccinations, I began experiencing concerning symptoms. Severe abdominal pain, vomiting, and then bloody diarrhea. In my young mind, I saw significant blood, and thought it meant cancer. I went to medical, where they ran fecal and blood tests. Over the course of two weeks, I was back and forth to medical, while still continuing my job as Yoeman, attending classes, PT, and everything else required to continue. My abdomen started to swell, the pain increased, the blood increased, and I began spiking high fevers. At our last PT test before Battle Stations, I pushed through, scored first in sit-ups, and second in running out of the women, immediately running into the bathroom to vomit. I requested to go to Medical, making the trek, and collapsing as soon as I walked through the doors. I have no memory of the ambulance ride to the hospital at the Naval base.
I was in the hospital for a week, undergoing intense medical testing, and formally diagnosed with Crohn’s Disease. It was a very sudden, acute development, that they linked in timing and onset to vaccines. It is considered a vaccine injury. With no internet access or ability to research, I did not realize this meant a lifelong autoimmune disease. When I found out I was to be discharged, I thought I would go home, get cured, get a waiver, and go back in. That was the delusional, naive, plan that was in my mind.
I was not the only one who developed a sudden autoimmune disease during basic training, nor the only vaccine injury.
I was not formally medically discharged. I did not even request it. It would have taken months to go through the process. I understood the decision to separate, as an illness like this would be a burden to the military and impact the mission. I supported the decision. I was logical, rational, and full of a sense of duty. I was sent to the separation barracks to await the processes necessary before I could leave.
I was not medically stable. I did not have any copies of my medical records. I was wasting away, and worsening by the day.
During a private briefing as I prepared to go to the airport, I was told by an officer never to go to the VA. He told me it was my fault that I became sick. That I must have been predisposed to developing an autoimmune disease (I did not even know what that word meant), so I must have defrauded the Navy. I felt confusion, combined with deep shame. I could not wrap my head around where I went wrong. I spent a long time trying to figure out how I could have known this would happen?
I moved back in with my mom, still medically unstable, with no health insurance, no car, and unable to work. I was very sick, and continuing to drop weight (not long after, in 2007, I reached my low of 85 pounds).
In the hospital, I filled out the forms to have my medical records sent to me. That never happened. I went to a GI doctor, asking for help, but they refused to treat me because they did not believe I had Crohn’s Disease without medical records or doing tests. I asked how much the tests would cost out of pocket. I don’t remember the amount, but it was in the thousands. I broke down crying. I was ready to give up.
My family are upper middle class, well educated, with legal knowledge, and well-connected. They are privileged. I was privileged. That led to my congressmen stepping in to force the Navy to finally send my medical records. They came in a box, incomplete, 5 months after I came home. At least it was something. I went back to the doctor, tests in hand, diagnosis in hand, willing to pay out of pocket if I could for help - but with very limited ability, and no health insurance coverage. He wrote me a prescription. I dropped it off at the Pharmacy.
When the pharmacy called that it was ready, I was expecting to pay maybe $30. Instead, I was told the 30-day supply was $1,200. I’m not making this up. I broke down. I couldn’t pay that.
I was able to get a very part-time job at UPS doing International Data Entry. I was dating Nic at the time, with our intention to get married. On top of a Crohn’s flare, I had mono, the flu, and severe food poisoning, all between Oct-Nov of 2005. I was a mess. I had tried going back to school for pre-nursing, and though I was passing my classes (I’m a sponge and can pass tests), I finally had to withdraw when it became too hard to make it out of bed.
Nic and I planned to elope. I left the marriage license requirements in the printer at home by accident, and my Mom found them. With family pressure for a formal wedding (which I regret giving in to, and still 20 years later would have preferred to elope), we scheduled a Christmas Eve wedding with the pastor of my Dad’s church. I did not want people there, and I did not want a reception. My family, to this day, still does not understand these parts of me. Nic & I planned to marry before the new year so I would have medical coverage during his deployment in Afghanistan. Instead, more family involvement, and a conversation Nic had with my Dad, pressured him to wait. He bought me an engagement ring I never wanted, believing maybe my family knew me better than he did (they didn’t and don’t), and pushed the date back.
$60,000 in medical bill debt racked up in the 6 months before we were married, during his mid tour in June 2006. That debt, combined with other debt and expenses Nic had due to his divorce, and some unfortunate timing on duty station changes, led to a very difficult first 2 years of marriage. Even with the blessing of steady income from the Army, and Tricare medical insurance (I still had copays and deductibles), we struggled to survive. We slept on the floor for months, only had 1 working vehicle, and I was too sick to work outside the home. I had little side-hustles (with 2 short-term exceptions). We had very little to eat. We collected bottles and cans on the ground blocks from our apartment so we could turn them in for the bottle deposit, just so Nic could put gas in the truck to get to work.
It was not until Nic was transitioning out of the Army in Oct 2007, and was required to see a VA rep, that he told them my story. He had always been angry about what happened to me. They told him to bring me in urgently. He dragged me, kicking, screaming, sobbing, to see them. Just talking about my experience at that time was deeply traumatic, with a strong sense of shame. This isn’t up for discussion on whether or not I should have carried those feelings - I did. While the VA was determining my case, I was hospitalized with Acute Pancreatitis on Christmas Eve in 2007. Even with Insurance coverage through Nic’s civilian job (contractor on base) that hospital visit cost us nearly $20,000. More debt.
Eight months later I received a letter in the mail that my Crohn’s Disease was service-connected, found to be a direct result of my service, and I was rated at 30%. While I still could barely work, $300/month was a big help at that time, and having my medical now covered was a relief I can’t even describe. I cried. A lot. I still felt shame, and guilt, and all these other feelings, like I shouldn’t have this, because this one officer told me it was my fault. I did not feel like a real veteran. I still don’t; I did not serve long enough. But I was thankful, because I was a burden to my family, and I hated how much it impacted them (Nic, Channah, and Jesse).
In all of what I went through, I was privileged. I was fortunate. I had resources more readily available. I was educated with a connected family, and was not treated like trash, or like I was lazy. I had an already-diagnosed disability, but did not qualify for social security disability (not that I ever wanted it). I did not have a way to access private health insurance prior to my marriage to Nic.
I could not work or volunteer 20 hours a week. Although I did not have Medicaid, I struggled through finding other ways (that are not accessible to many people). My experience should still highlight a very blaring issue with the proposed Medicaid cuts. Yes, there are exceptions in some cases, but you have to prove the disability or medical conditions, and those require medical diagnosis, which often take years and thousands of dollars in testing to figure out. You can’t get the answers and help, because you don’t have healthcare, but you can’t have healthcare, because you don’t have a diagnosis. Wait - what?
If I did not have a family to move back in with, to provide a roof over my head and food on my plate, I would have been on the streets. That’s the case for many who go through what I did, that do not have family. If I did not marry Nic, and have Tricare benefits, I would not have been able to stabilize.
The Crohn’s Disease (and Celiac Disease, which also developed in the Navy, but I did not find out at that time) was killing me. Literally. Without treatment, it was a death sentence. This is not up for debate. I’ve been close to death several times the past 20 years.
I was able to become productive again in society BECAUSE I was able to get the healthcare I needed. Without it, I would not have the ability to work, volunteer, or lead any productive life.
Today, you cannot see most doctors, especially specialists, without Insurance. You cannot just pay out of pocket. The ER is not for treatment, but for stabilizing acute life & death issues. There would have been no option for me. Without Medicaid, there’s no option for millions of our neighbors in this country.
This is, literally, life and death.