I decided to include a chapter from my memoir today. It seems fitting for this moment. I need to tell you what happened, and where I will soon be. None of what you read is an exaggeration. There’s no need to exaggerate a reality that is my horrible life. I don’t think people get it, and it’s quite comical how my previous University knows more about this than most people I know.
Here it’s is. Chapter: Powerless
Presently, we have the protests regarding the death of the poor George Floyd, who died as many men have died at the hands of law enforcement. This caused many to rise up against the injustice of his death, but I don’t think that’s the entire story. This is something that has gone on for too long, and the American people are ready for it to end. Yes, they are fighting for the man who couldn’t breathe, but I see they’re also fighting for our rights. He wasn’t heard as that police officer kept his knee on his neck doing nothing when Floyd said he couldn’t breathe. People around him were recording the incident, and shouted this at the police officers. Was it necessary to have so many on his back as well? Of course the man couldn’t breathe, and several minutes later he was dead. All over a counterfeit $20 bill. Was he the one making the counterfeits, or was it by mere chance he ended up with one? Believe it or not, people do unknowingly end up with counterfeit $20 bills, so I think the arrest in general was uncalled for.
Now, I know African-Americans claim they are victims of police brutality, and death more than most of all the races; however, statistics show this isn’t the whole truth. White men are killed more often than any race, so why are there no riots for their lives? Could it be they are not innocent, and a threat? This I could believe, and the statistics would make more sense. People of color are targeted by the racial biases that exist within the system, but there are a lot of biases that exist to divide us all within the larger divisions of our country and world.
His death sparked nationwide peaceful protests that brought together people of all races. Everyone marched for the lack of justice, but why? Never before have we come together as one to protest an atrocious act such as this. I believed his death caused a butterfly effect, but that is only one theory. I have yet to see if it becomes a truth. Forced into a quarantine lockdown, we were told we had to wear masks everywhere we go, be socially distant, never leave our homes unless absolutely necessary, and it was a horrible threat. This gave us plenty of time to dwell on the injustices happening not only in our country but all over the world. We watched censored videos be removed from YouTube after 30 minutes with 6 million views. Information was hidden from us, but the internet is a big place. There are many platforms, and one’s like Alex Jones’s Infowars allowed us to see some of these videos. I watched one where police barged into a couples home, and told them to go with them for no reason. They were forced to leave their home for no reason! We weren’t allowed to visit the elderly, and they were silently being hurt by those we trust or put in the presence of people who would commit horrible acts like, the man who was temporarily at a facility for the elderly, and used his hands from boxing to beat up Alzheimer’s patients.
Alzheimer’s patients are aware of what’s happening. With Alzheimer’s their mind slowly unravels, so, as I watched a video with one elderly man’s skin being ripped on his face, I cried. His mind had unraveled preventing him from calling out. He didn’t forget to call out. He felt pain. He was aware it was happening, but his mind had forgotten the reaction he was supposed to have. His mind didn’t understand why one is supposed to speak, or cry out in intense pain. I had to stop the video, and I was in a despondent mood for the remainder of the day. Every once in a while I would shed a year, as I tried to forget I ever saw it, but that would be an injustice to the patient so I remember it for him.
Little did I know, that was only the beginning. People all around our nation started going a little to a lot crazy, and then George Floyd died. Normally, I don’t think people would have had this kind of response, but the quarantine negatively affected the mental state of so many. I’m not saying that people marching in peaceful protests are doing so out of a wavering sort of mental state. I’m saying the people starting riots, and using it as an excuse to bring more violence to this nation were the ones in a negative state of mental health. Or maybe they were bought off by Soros like so many others that ruined peaceful protests across the world for the many other nations rising up against their governments and justices. That is a conspiracy I believe in, because the people who didn’t receive the money after making a peaceful protest a riot in which needed to be broken up by military forces, bullets, and tear gas ended up marching for their own justice asking Soros directly to pay them what he had promised. Well, was this something that happened in Minneapolis too? I don’t doubt it for one second, but I do have to acknowledge the negative effects on a person’s mental state when they are forced into solitude for long periods of time.
I have been in solitude for one year and seven months at this point in my memoir, and I too felt my mind unravel in the beginning. Of course, not like that of one with Alzheimer’s, but in a way where I wasn’t thinking clearly. I guess the silver lining is I couldn’t act on anything if I had wanted to, due to my physical state. It was after all the thing that had forced me into solitude in the first place. I cried in frustration at my situation. I received no help, was constantly told everything would be fine, was constantly told every MRI or CT scan looked perfectly fine, was told treatments I received would help, was made to believe I would be healthy soon, was treated with disrespect, and medical biases were put in place regarding me as a person. I am a woman, and my sex is often not taken seriously in the medical community, because women apparently tend to be more emotional than men. I have seen grown men cry in pain or distress. Seems unfair. What other biases? I have bipolar disorder, and every time I was writhing in pain with tears running down my face it was thought to be me feeling emotions too strongly even though I have been properly medicated for as long as I can remember. I also have anxiety disorder, and even though I can count on one hand how many moments I felt more anxiety than the average person on one hand in the last five years it was assumed I was being a hypochondriac.
Every time I sought out medical help, I received none. Riddle me this: how is it that I could feel something was very wrong in my body, and that significant pain with rare symptoms along with every MRI and CT scan have no cause for my own justice?
The first time I was heard, it had already been a year and a half of expressing the beginning of a horror story to whatever present moment it was in that timeline to doctors. I thought it was almost over, and this man was the first doctor who sat down to listen to what I had to say. He didn’t tell me everything would be fine, but said he would find me the right help to make sure everything would be fine in my future. Dr Enrique Tobias was the first medical professional to listen to me. He was the first to hear me out, and take action. Well, I have to admit there was a neurosurgeon at the hospital of the original surgery, who tried getting me referred to Mayo in Rochester twice before this, but the neurologist there told me he could fix me after Medicaid repeatedly denied me. Did the neurologist claiming he could fix me even believe his own Words? Did those at the ER at both hospitals believe their own Words? Did they Know something was wrong, and did Nothing until it had been too late for me to press charges for medical practice? This is a truth by the way. It was too late. Did they Not take me seriously, because I am a woman, bipolar, and have an anxiety disorder? Did they Not want to deal with someone so poor they are forced to be on government funded insurance? Did they Want me to continue visiting them, so they could continue receiving more money? Why is it the surgeon that performed the surgery would move a year and six months after my surgery, when I had my final MRI at the facility? He had also told me what I was feeling was normal, and everything was fine. Which is it? Or is it a little of each or a lot of each? How far does the corruption go? Where is my justice? Even Dr Tobias’s referral was denied by my insurance company, after they had been funding taxpayers dollars for me to receive expensive treatments, frequent ER visits, and nonstop care that always failed. It was then that I sought out help from the neurologist, who had claimed he could help me, because it was clear his treatment wasn’t working.
I could feel that the source of my pain was coming from my the prosthetic in one of the prosthetics in my jaw joint, and knew from basic human anatomy when someone’s body isn’t aligned the source of the misalignment will cause all associated nearby joints to be put in a state quite similar to the dystonic one of my neck. He put in referrals for Mayo in Rochester again, and insurance was once again fighting it, but I had Dr Tobias and his wonderful nurses to explain why it was necessary for me to go and gave my insurance company that last push.
Then I was distraught at the waiting period, but all that took was one phone call to the hospital that would be my salvation, explaining the severity of this situation before they would approve me for an appointment two weeks later. At that appointment, I saw the original scan, and even I could see the prosthetic was not aligned properly due to a simple overlook of the angle the screws were in. Now, that was in my original CT scan the day after my original surgery. My condition had much changed since then, and my jaw had changed with it. Imagine what my scans looked like in all those ER visits that followed. Were they ignorant, liars, or just downright retarded? Imagine the injustice I felt. The only people who had listened to me were my professors, Enrique Tobias, Matthew Franco at Moorhead Massage and Wellness Center, Kim Haarstick in medical anthropology, who was the first to massage me, and my chiropractor Samantha at The Clinic Chiropractic. That is up until my first appointment at Mayo in oral maxillofacial surgery where Kevin Reid and Jonathan Fillmore would listen to my story for what must have been more than 2 hours, got details as to what I had already tried to help myself with, and offered their own solution to the first half of my problem. Even the first surgical resident I met listened, while trying to keep her face emotionless, as I told her all the scans that had been done over the years looked fine. They all listened to me, and it was so beautiful to have those kind souls offering me the proper solution. I cannot express how wonderful it felt to finally be there on October 31st of 2019.
Unfortunately, they were only half of my care. The second half was neurology, because the cervical dystonia needed to be dealt with as well. There was little doubt in everyone’s mind that the condition was a mere coincidence, and just happened to develop a month after my operation in December of 2017. Mayo neurology in Rochester, much like the oral maxillofacial surgery, is considered one of the best in the world, and people with neurological symptoms are neither sparse, nor lacking in severity. As a result, I had to wait my turn until the end of January in 2020 to meet with the wonderful Dr Taurun Singh. Side note, I feel it’s imperative for me to mention when I had my CT scan that would provide the measurements for the 3D model of my skull so Dr Fillmore could build a customized prosthetic, the radiologist ended the scan asking me how long I had been dealing with my issue. Does this mean it was as obvious as I saw it to be? As we all did???
Anyway, Dr Singh listened to a story I had repeated so many times I could recite it like the words to my favorite song only it wasn’t my favorite song, and I hated every second of that story for the recollection of the horrors that are my life. He understood this, and listened intently to all I had to say as I tried to rush through it after seeing the full waiting room of people in states much worse than me waiting to see a neurologist. Sitting in that waiting room made tears run from my eyes, and you can’t blame that on me being a woman. The man sitting next to me, who had brought me, also had tears running down his cheeks. Even though I rushed through my story, I was still given the proper attention I deserved. Once again, it was refreshing to have someone listen instead of telling me everything was “just fine”.
He decided to have me try Botox injections again, because the neurology unit there couldn’t trust in what may have been incompetence from my previous neurologist. I was then sent to the movement disorders unit of the neurology floor, where a nurse and two specialists finished a procedure in 5 minutes that had taken 30 minutes each time in my previous experiences. Although I have to admit I still have trust in the competence of my original neurologist, a part of me thinks he knew what was going on the entire time, but the hospital and professionals within the hospital most likely would have acted quite negatively towards him in that moment and all future moments if he had been 100% honest with me. Is omitting information a lie? Technically not, but it is betrayal. What was the lie? All those times I had been told everything looked fine on my scans.
The Botox didn’t help, and I had assumed it wouldn’t. There is no way I would have argued with Dr Singh’s logic on the matter. What kind of a neurologist would he be if he hadn’t tried the first and less evasive treatment of the few science has offered those with cervical dystonia? One can’t just jump into brain surgery! He explained how he wanted to see how much my condition would improve after my oral surgery, which was in March. That felt like a year away for me. Every day I woke up was a day where I felt the most pain I had ever felt in my life, and I have given birth before. Dr Singh was patient with me. He responded to every message I sent him via the online patient portal. The only time he didn’t respond within 24 hours was when he was out of town. He contacted me the night he got back at about 8:30 at night to go over my concerns with great patience. Who gets off of a flight, and decides they will give their patient a call just to discuss their concerns, which honestly turned out to be nothing other than the inevitable progression of my physical state falling apart before my surgery? What a great man.
There was no need for me to have two surgeries, when there was a chance the best possible outcome after my surgery would be one in which my symptoms dissipate without any sort of further treatment with neurology. I couldn’t argue with that. Like I said, it was very logical. My symptoms did improve a little by the way. I mean, they presently still suck, but my pain is no longer a 20 on that 1 to 10 scale we are supposed to use to descibe the intensity of our discomfort. I would call it a 5 that can jump up to an 8. I do know it is no longer the 20 a.k.a the 10. How could I? The condyle is exactly where it’s supposed to be. Now Dr. Singh needs to see me to get a new baseline being as my physical condition is slightly better. He had forewarned me the damage to my nerves could not be assessed until after my surgery, because the length of time the damage had incurred from the original surgery was too long to believe everything would go back to normal, though we both hoped it would.
So where does that all leave me? To this sunny Sunday where I am in my own negative mental state, due to a lack of justice for my situation, and how the system seems to continue to take everything from me. Did you know Medicaid can stop approving your appointments when they think it’s time? My treatment is halfway done. The source has been fixed, and I’m about to meet with neurology to assess the new baseline and end this horrible state of existence. On the same day, wonderful Mayo was able to schedule my post-op appointment with Dr Fillmore. This is 10 days away, and 3 days ago I found out insurance would no longer approve my follow-up care. Why? Apparently, I was only allowed a certain number of visits in a certain amount of time, and not one person in Medicaid chose to send me a letter, give me a phone call, or even warned those at Mayo that this would happen. They didn’t even tell us until Mayo tried filing 3 days ago! Now Dr Tobias needs to perform a miracle that will push Medicaid to let me receive the rest of the care I deserve within 13 days. What took 2 months before must be done in only a few, but I am confident in Dr Tobias’s competence and strong drive to help me at every dark turn.
Wouldn’t Medicaid be saving themselves a lot of money if they just allowed me to continue receiving care? When you think about it, what kind of damage can be done to a new, customized prosthetic when my nerves are continuing to move of their own accord? What will happen in the few months it takes them to approve me, and the following few months before I can once again see the medical professionals I am supposed to see on the 8th? Will I be hospitalized before then? Yes. I already know that, because a person can only be broken down so many times by the system before they are mentally broken. If they don’t help me once again, I will need to be hospitalized, and heavily sedated. Is it because I’m a woman? From being bipolar? I honestly don’t think so.
How would anyone feel in this situation? Quick version: I was first denied proper care, which led to an operation that would make my life worse. I was ignored by the medical community, and Medicaid denied every referral sent their way for years. Medical Malpractice laws aren’t there for the victims! Yeah, imagine my surprise at that. My issues with insurance and referrals goes along before my original operation. I had been actively seeking help for quite some time. There simply was no one in the region that could help me, and the Medicaid in my state will not cover out of state care. This is why it took them so long to finally approve it. They could have saved themselves a lot of money.
That’s not all. I tried filing for unemployment, but, being as I was unable to work, filing for unemployment didn’t work out. I was told everything was going to be fine, so I waited 6 months before filing the first forms for disability. Those were denied. I sought out help from The benefits I already receive, but there was nothing they could offer me. They had phone numbers, all of which proved to be useless. I didn’t expect my treatment to take so long, but I agree with all of them when I say I have what is a unique, complicated case. Obviously, having to see two departments for situational reasons inflicted on my body is a lot to coordinate, and there is no way of knowing how I will turn out in the end.
I got off topic. Oh yes! The system screwing me over. Well, after finding out the length of time I would be laid up, I filed for disability again. It took 90 days to receive a response in which a woman told me I would receive my disability funds in 80 days. 10 days later I received a phone call from a new woman saying the previous was no longer on my case. She was now, and she is not easy to work with in any way, shape, or form. She sent me at least 25 pages of paperwork every 30 days with a notice printed on them saying they were the final notice/attempt, and my case would be dropped if I didn’t send them in 7 days. Final notice? I hadn’t received any notices. I didn’t expect that they would send another 25 pages of paperwork claiming to once again be my final notice, and, as you can expect, I received a written letter 10 days later… Wow! When refusal is the action to be taken, they can move a lot faster… I was denied benefits.
I didn’t know what to do. File an appeal? How much paperwork was I going to have to fill out this time? Were they going to deny me again? I was fed up, so I called a lawyer. They will end up taking 20% of what they say will be back pay from the date I was unable to work to the day I am supposed to receive funds. She told me they would deny my appeal, because of my age. Huh, there’s a bias. She said we would have to have a hearing, and after that I would have anywhere from 2 to 4 months before I received my monthly checks AND another possible year longer before I receive my back pay. Seriously? Well, they forced me into a situation where I had to hire a lawyer just to receive proper help in the situation they put me in from denying my referrals from the very beginning.
From the situation I have been forced into by the state of our health care system and the institutions within it, I am about to be without a home. I already told you about the systematic abuse brought on by medical biases and divisions that exist for not just me but many. That is not all. Of course, I have already dealt with a lot of abuse from the system being low income, but I didn’t expect this: when I changed my major, I wasn’t told federal student aid would stop after 6 years. Well, I had already been going to school for 3, and would have been done in one year if they hadn’t taken that away. I would have been done last year, if my physical state hadn’t gotten so severe I would be forced to withdraw from already paid for classes. My aid is gone. I cannot finish my education, so I cannot receive a higher paying job with health care and dental that will allow me to pay my bills and give my daughter the life she deserves.
Growing up in poverty is no way to live. It’s not even living. It’s existing in the place the system put you in. Apparently, the powers that be don’t want me to leave. They want me to stay here forever, and took away the only aid I could receive to help me pay for my University education. I am where I began, only worse off this time. My credit score of 701 is now in the 300s, so there is no way any bank would loan me money. Why? I had to use credit cards to pay for my living expenses as I dealt with the first months of this horror story. Credit cards I thought I would have been able to pay back, because the healthcare system told me everything would be fine. I was naive. I would have been able to pay them all back, but I was never able to work again. As a result, all of that money I owe is now sitting in the hands of law firms waiting for that moment when I finally have enough money to survive on my own. That is when the financial state of existence the system put me in will once again beat me down into submission as all the money I need is taken away from me.
When will I have enough money to survive? Never now that I can no longer receive an education. Now that legal system that wouldn’t give me the opportunity to file a malpractice suit will be taking that money directly from my bank account without accommodating my living expenses. I will have my student loans taken out, and all that I incurred during this horrible ordeal.
Honestly, what hope do I have? The only way the system will offer me help is if I am homeless. I looked up information that would help prevent this, but all that came up was aid provided to those for already homeless. Trust me. I tried everything else. Now, seriously!? The system wants me to be homeless with nothing including my own daughter just to start this vicious cycle all over again? Are you kidding me?! Do you now understand that I have reached my breaking point? Wouldn’t most break at this point? There is nothing I can do. I am 100% powerless and at the mercy of a system that wants me to fail.
Will I get justice? Where is it? Where is there hope? I understand George Floyd died, but he is one person. There are many all over the world dealing with some sort of flaw in a system meant to protect them. A flaw doesn’t protect, but in most cases does irreparable damage.
When you think about it, if the system hadn’t created a division between the races, would there be as many issues? Would we always be fighting against the people that are supposed to protect us? Would we always be fighting with each other? The division wasn’t created by us. I can speak from personal experience and the words of others that the division was created by the system. Why? What purpose is there to do such a thing? Well, think about it. When we are divided as they want us to be, we are weak. When we are together, like we are in the protests against the injustices around the death of George Floyd, we are strong, and united. When we are one, we cannot be controlled. When we are one, we get results. When we are one, we are helped. There is no division between the people right now. The division exists against the free people and the government who owns them.
Since this quarantine began, I have witnessed almost every constitutional right ripped away from someone. Even before today the Constitution seemed to be something that had been forgotten by the government. Is this the intended result? For the Constitution created for the people that is meant for the people to be free in what is supposed to be the land of the free to be disregarded and DISGRACED, so every amendment can be broken without consequence? No. This is not okay. This is why I think the reaction from the death of George Floyd is nationwide, and, instead of one color of people marching in protests, I see the human rainbow. His death sparked the beginning of our necessary revolution. At least I hope so. Just like many countries across the world, we are attempting to rectify the flaws in our system instead of relying on corrupt politicians or those who do not have the time. What of the Supreme Court? It exists to bring justice to broken laws such as these. Will they take my case? I doubt it. They toss away so many necessary cases it’s like they spread out every file on a table, and one person is supposed to “pick a card any card”.
Will my voice be heard? I don’t know. Like I said, I’m powerless, so what can I do other than speak to you right now.