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Healthcare...can't live with it....can't live without it
Beyond the Book: my current hell of health shit
When I had to take my mom to the emergency room when she experienced a sudden and catastrophic medical emergency, I was plunged into a world of healthcare bullshit that I had never experienced before.
As I sat in the early morning waiting for news from doctors, trying to figure out how my mom had gone from driving herself around town in the morning to laying in a hospital bed on a ventilator later that night, I got a call from a cousin.
My cousin is about six months older than me. We used to sneak out of the house and get drunk together in high school. She’s my favorite of all my cousins. These days, she’s a highly qualified and talented ER nurse living with her beautiful family halfway across the country. I thought she was going to call me to give me encouragement. I thought she was going to say that my mom was in good hands and everything would be okay.
She asked me what communications I’d had with the doctors. I’d told them what little I had been told in the 5 or so minutes that I’d been able to get someone on the phone. Due to covid restrictions, I was not allowed in the hospital to talk with anyone face-to-face or even see for myself how my mom was doing.
“I’m going to send you a list of questions that you need to ask your doctor,” she said calmly and firmly, “Then I need you to send the answers to me. If you want me on the phone when you ask, I’m happy to join. But you need these answers as quickly as you can get them.”
She sent me a text full of questions that I did not understand. A lot of numbers. A lot of acronyms. I called the hospital and entered the long loop of holds, dropped calls, and callbacks. I got a nurse. I explained that my cousin was an ER nurse and had sent me a list of questions. The nurse was happy to help a fellow nurse out and rattled off answers that I understood even less than the questions.
I called my cousin back and read her the answers. I was hoping that here was where I was going to get the, “Everything is going to be okay,” that I so desperately wanted, but when she audibly gasped at a few of my answers that hope was dashed. When I was done reading off my hastily jotted down answers that the nurse gave, my cousin took a deep breath.
“Ijeoma, your mom is very, very sick,” she said with more seriousness than I’ve ever heard from her.
“I need you to take what I’m telling you right now very seriously. Your mom’s life depends on it. Your mom is an elderly woman with preexisting health conditions who is gravely ill in the middle of a pandemic. Hospitals are overwhelmed and they are making quality of life decisions right now. They are deciding who is worth the extra effort of saving and who isn’t. They will look at your mom and decide that she is not worth the effort. From what you’ve told me, the treatment they have started isn’t nearly as aggressive enough for how sick she is. You are going to have to be the reason why they give your mom the treatment she deserves. They need to know that she has a family to return to. A family who knows what questions to ask. A family who will recognize when corners are being cut. I know that you try to be kind. I know that we are all told to just trust the professionals. But if you don’t question every thing that they do, they will do the bare minimum. I can do this with you. Call me any time you feel like they aren’t listening to you and put me on the phone with them.”
And she was right. Every effort I made to get more aggressive care for my mom was resisted, even though her health was failing to improve. Nurses were always pleasant even when they seemed very overwhelmed with work and gave me updated numbers with little fuss whenever I could get them on the phone. When I got the doctor on the phone and asked for an update on the numbers he snapped, “I don’t like to give the family numbers because they don’t know what to do with them.” I insisted, and he reluctantly gave them to me, adding, “I know the numbers seem bad - and they are - but you don’t understand the full context.”
It wasn’t until I started demanding a transfer to a better equipped hospital that the strength of her care started to increase and she started showing improvement.
I continued the daily ritual of calling and waiting and calling back to get more information on my mom and then decoding that information with my cousin and then disseminating that information to the rest of the family. I continued to push for tests to try to figure out what had caused my mom’s rapid kidney failure, and whether or not there had been any permanent damage to her brain or heart in the time she had been deprived of oxygen.
They didn’t feel like they needed to run those tests, doctors explained. They weren’t interested in finding the source of the infection that they guessed contributed (along with her diabetes medication) to the kidney failure. I was constantly asking myself, “Am I being assertive enough? Am I effectively communicating that my mom is loved? That her life is worth saving?”
When my mom was finally off the ventilator and able to speak, she complained of pretty constant diarrhea. She said that when she had an accident in her hospital bed, a nurse tossed her some rags and told her to clean herself up, even though she still couldn’t even walk without assistance.
When my mom was released from the hospital, she was still experiencing uncontrollable diarrhea. She was taken off of her diabetes medications and no instructions for controlling her blood sugar without them were given with her release. By the time we were home from the 15 minute drive from the hospital, my mom’s blood sugar was over 400.
I spent the afternoon talking to doctors offices, trying to get my mom’s doctor on the phone so I could figure out how to manage my mom’s diabetes.
The doctor called me. She had not been informed of my mom’s hospital stay, even though I had begged the hospital to reach out to her so that we could make sure that her other health conditions were being adequately addressed while she was in intensive care. I told the doctor all that I could. She asked about tests on my mom’s brain and heart. I told them that the hospital had refused to run them. She was stunned. She asked me what medications my mom had been sent home with. When I explained that it was the same medications she had been on before the hospital stay, minus the one diabetes med, she was further dismayed. The other meds my mom was on were just as taxing on the kidneys as the one they took her off of. It was all going to have to go.
We scheduled all of the tests that the hospital should have run to ensure that my mom’s other organs weren’t damaged by the kidney failure. My mom was placed on insulin for the first time in over 25 years. My sister and I had to figure out via google how to measure and administer it for her as her brain was still recovering from the toxicity of the kidney failure and her time on the ventilator, so she was unable to manage her diabetes on her own. My sister and I now know more about diabetes management and kidney health than we ever imagined we’d need to.
As my mom continued to improve and my sister flew back to her home in Maryland, my tooth started to hurt. A lot.
I’ve been avoiding the dentist. I say that I’ve been avoiding the dentist because of the pandemic, but in reality I’ve been avoiding the dentist because of the deep dental trauma that I carry.
Yes, I know that everybody hates going to the dentist. Yes, I know that everybody tries to avoid it to some extent. I get that. But if you grew up poor, in America, with bad teeth, you will know that this is different.
I grew up on welfare and medicaid. As a small child, dentist visits were covered by government insurance. I remember my mom taking me to the dentist when I was little for cleanings and checkups. When I was around the age of 11, she stopped taking me. I later asked her why and she said that the dentist always made her feel like shit. They always talked down to her and complained about how much less money they got for treating welfare patients than other patients. She said that even though our teeth were always healthy, she was always made to feel like a bad mother whenever she took us in for checkups. So she stopped taking us.
By the time I was a senior in high school, my teeth were no longer healthy. But by the time I saw a dentist again for dental pain that kept me up all night in tears, I had turned 18. Once you turn 18, the government pretty much decides that you don’t need teeth anymore. The tooth that was hurting was a back tooth, so they figured it was expendable. They pulled it. I got to see now, as an adult, the distain for poor people that my mom had described first hand in the dentist’s office.
When I moved out of my mom’s home and got a job I was no longer eligible for what little dental coverage the government provided. I was on my own and now couldn’t even afford basic cleanings. I would go to the emergency dentist when the pain would get too bad.
“You should have come in sooner,” they’d admonish, “You need a root canal.”
I’d look at the $2,000 estimate for a new tooth and start to cry. “We’ll pull it for $200,” they’d offer.
When I was pregnant with my son, my teeth started to rapidly decline. Parts of my teeth would crumble away in my mouth as I tried to eat. I was in pain constantly. I was back on medicaid at this time. Every time I’d go to the only dentist in town that took medicaid, they’d say the same thing. I was a back tooth, so they’d have to pull it. One day, when I was about seven months pregnant, they pulled three molars on the same day. I was sent home, pregnant and in pain, to try to figure out how to eat.
I’m 41 years old and have only been able to eat on one side of my mouth for over twenty years. I have not been able to eat crunchy or very chewy foods in almost as long. I am missing at least ten of my back teeth. I don’t remember what it feels like to eat without discomfort. My lisp is exaggerated by the air that escapes around the sides of my tongue where teeth are missing. The shape of my jaw has changed and become lopsided due to bone erosion from the tooth loss and muscle atrophy from only chewing on one side of my mouth for decades.
I am embarrassed when I yawn and don’t cover my mouth quickly enough. My partner and kids are the only people who get to see me throw back my head in laughter. When I’m in public, I try to not lose myself in a joyous moment lest I smile too widely.
As my financial situation has improved over recent years, I have tried to be more proactive with my dental care. I now have four or five crowns, which I cherish as the teeth I could keep.
Every time I go to the dentist I try not to cry as I open my mouth.
”How did your teeth get like this?” They ask.
They want answers. They feel like they deserve them. Why am I sitting before them, nicely dressed. Looking to all who see me a responsible and resourceful woman and yet when I open my mouth I have the teeth of someone else. I have the teeth of the patients who can’t usually afford to visit their offices. Patients who showed up at their dental schools for discounted care from students. I have the teeth of people that they imagined made only bad decisions in life and none of that matches my outfit. They immediately start recalibrating what they thought they knew about me.
I never really knew how to answer that question. Do I explain how tooth decay works to them? Do I tell the story of each tooth? Do I promise that I have indeed brushed daily for my entire adult life? Do I assure them that I floss? Do I make up a story about a horrible accident that robbed me of random back teeth? Do I reveal a secret history of illness? Do I just apologize for subjecting them to this awful surprise that is my poor-people’s mouth? What answer will satisfy?
Last week, when the pain in my tooth started keeping me up all night and the infection started to give me a fever, I made an emergency appointment with the dentist. The problem tooth was one that had already had a root canal. I would need to see a specialist. I was sent home for the weekend with five vicodin, antibiotics, and a referral.
In the endodontic office the next week, the doctor’s assistant had me open my mouth to place a plate between my teeth for x-rays.
“You better hope that tooth can be saved,” he commented casually, “You don’t have many more to lose.”
The doctor looked at the x-ray and said that the tooth couldn’t be saved. It was broken and would always give me pain if I left it in. “It has to go,” she said matter of factly.
I started crying.
“How will I eat?” I asked through tears.
She looked at my x-rays again and shook her head. It had to come out, she repeated. The dentist would be able to make me a type of denture that I could wear so nobody could see the void that would now be further encroaching on my already limited smile. I couldn’t chew on it, she added, but it would look better.
“How will I eat?” I asked again. This was the one molar I had left on that side, the only side that I had been able to eat on without pain.
The specialist looked at my mouth again, seeing the entire picture instead of this one problem tooth.
“You can get implants,” she offered, “Yes, the process is expensive and it takes a long time. But if you start now, then one day you will look back on this and be glad that you started this journey.”
I didn’t know how to reply to this. I didn’t know how to stop crying after being told that I was going to lose one of the few usable teeth I had left but after about a year or so of painful procedures, I would look back on this moment with anything other than heartbreak.
“Okay,” she said, ready to move on to other patients, “You call your regular dentist. He’ll take care of you. He’s a good dentist.”
I muttered thanks.
“How did your teeth get like this anyway?” She asked.
I shrugged my shoulders and said, “I grew up poor.”
She sat quietly for a moment and then nodded, “Yes. If you are poor they will only pull, pull, pull. It’s criminal.”
Then she said goodbye and left.
These past weeks have been dominated by medical crisis. Much of my brain power has been dedicated to trying to keep my mom alive and trying to function through the pain that is currently radiating up my jaw, through my cheek, and into my right eye. The immediate necessities of trying to advocate for care, trying to get my mom to and from medical appointments, trying to find foods I can eat that won’t cause blinding pain while trying to remember the last time I took pain meds are constantly wearing on me.
But behind that, waiting for me in quiet moments, is the horror of knowing that if I hadn’t gotten a call from my cousin, the doctors tasked with saving my mom’s life may have let her die. The horror of knowing that so many others don’t have a cousin to call them and tell them that for some reason they have to convince the doctors that their loved one is worth saving; so many others didn’t know that if they didn’t ask the right questions, that the doctors would know that they didn’t have to answer to anybody.
Waiting for me, once the pain meds kick in and I can manage a clear and calm thought, is the reminder that I have spent the majority of my life unable to eat properly and without pain because our society decided that the ability to freely smile or eat or speak was only a necessity for rich people.
Now that I am privileged enough to be able to afford teeth, I can begin the long, painful, and expensive process of trying to rebuild the teeth that have been violently yanked out of my jaw time and time again in an act of governmental economic expediency that I have been expected to feel both grateful and guilty for at the same time.
And with every appointment when I open my mouth for a dentist to do their work they will ask, “How did your mouth get like this?” and I will pay them tens of thousands of dollars so that they will one day hopefully never ask me that again.
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