Beyond the Book: my current hell of health shit
Your testimony should be read into the faces of every single health provider as a cautionary tale. Also at all medical training facilities. I hope that you and your mom regain health and achieve freedom from pain.
Ijeoma, I am deeply grateful for you sharing your story with medical gaslighting and sheer abuse on multiple levels. I don’t know if this gives you some comfort, but you are not alone.
I’ve had so many traumatizing experiences with conventional medicine, and especially because they’re supposed to be an institution we can trust. It makes you wonder, where are the truly SAFE spaces for Black people, for Black women, for socioeconomically poor Black women?
I’m grieving with and for you, in solidarity and support. And I’m sending warm thoughts and healing energy to your mom, and all her loved ones. I love to read your descriptions about her, and I can’t wait to hear that you’ve safely turned a corner.
My prayers are with you. 🙏🏽💖
I need to go to the dentist soon, after a long absence, and I am terrified. I am on Medicaid. I expect to be treated with condescension and disdain, as has been my experience so many times. To be asked “why don’t you just…”, as if it is that simple. As if we live in a country where people’s health and well being, especially poor people, are treated as truly valuable. As if I am a bad person for not bootstrapping myself through every single challenge that has stood between myself and better health. Your words give me strength and courage enough that I feel like I might be able to get myself through the experience. I am going to print this article and hold it like armor in my front pocket, knowing that, if the moment comes where I am once again basically told that I am a bad person for having unhealthy teeth, I can be reminded that my only crime is being human in a world where humanity is not valued. If it comes to it, I can quietly hand over my folded up, printed out sheet of paper and say “here. You can read this after I leave; it will answer your questions better than I could.” Thank you for once again helping me through this thing called life. It means a lot.
I am heartbroken to read this. Your mother deserves better care. You deserve better care.
(Go with the implants. I have two, and if I needed to pay for them myself today, given the steep expense but what I know about the results, it would be done without a second thought. And if you were in any economic strain over it, I bet a GoFundMe would raise enough money to buy the Seahawks a new stadium. Your work has transformed so many minds & it’s the least any of us readers can do to right a wrong)
Sometimes I pause and send a little prayer to The Universe and say "Thank you for the Internet." We're the same age, and the first half of my life was spent alone in places where people weren't looking out for me while making me feel like it was my fault. When I got on the internet and I saw that there are people who have seen the things I've seen? The spell started breaking.
I don't have to tell you that Black women are never just ourselves. We're a credit to our people or some other fundamental attribution error. But the flip side of the same coin is that we all can uncross each other with only the words we speak.
I'm so sorry that your mother has been ill and I'm grateful your cousin could help you. And I'm so sorry about your health struggles, too. I am also so grateful that you can find the words to write. If you don't already know, you're not alone.
I am so grateful that you have a cousin. I have been that person for others and it is an honor to be of service in that way. You are of service to your community and to those of us who wish to build a system that eradicate what you experienced. Thank you for your service.
I watched my mother struggle with dental innatention and neglect… and it is so painful, so demoralizing, so stigmatizing… listening to you on Instagram the other day brought back watching my mom, not yet 40, ill in bed, because they pulled out all but four teeth so she could have dentures. That was in the mid 60s in Seattle. I know… absolutely… that the system… all of the systems let you down.
I continue to hold you, your Mom, and your family in my heart every day.
Thank you for letting us witness this situation with you. Thank you for using your platform to shine a light.
Our healthcare system is barbaric. This story made me cry for both little and grown Ijeoma. And shudder imagining the possible alternate timeline that could have happened to your mom. (And it's making me re-think everything that went on last year when my stepdad was ill and ultimately died. In a big "oh fuck!" kind of way.) I hope you and your mom both continue to find recovery and respite.
We had to deal with some of this with my mother-in-law; she passed. We were lucky they let us bend the rules and see her. I’m glad your mom is doing better. The feeling of helplessness that comes from being in the dark and not knowing what to do or how to do it or who to ask or how to push - it’s a special kind of hell.
It’s such a bitter pill to swallow, to deeply know how horribly, fundamentally unnecessary all this suffering is. All the resources people are denied. Lives lost. Quality of life lost. Grief. Loss. For no good fucking reason at all. At *all*. We could prioritize people, their well-being, their social support, everything. We could pretty much all have satisfying, supported, healthy, connected lives. And the systems in place don’t allow for it, and they just keep on don’t-ing, as intended.
I have personally been chewed up and spit out by the mental health system - to the point of becoming psychiatrically disabled. With better care, I’m sure I’d be doing better than I am now. I’ve learned a lot of valuable skills and developed a wide base of knowledge and experience in the 15 years I’ve had to deal with mental health professionals, other medical professionals, social services, etc, which means that I can help other people navigate the overall healthcare system more safely and effectively… but at the cost of all the ways the system has fundamentally failed me. And I can’t help as much as I’d like, because my capacity is limited now in ways it didn’t used to be - because of those failures.
I sincerely hope that one day, people will look back on the way things are now and go, wow, how barbaric, glad it’s not like that anymore. But it’s not now. And it is a bitter, bitter pill to swallow, to know that it could be so much better, and that it just isn’t.
Thank you for sharing. I’m glad your mom is on the road to recovery. I’m glad that you had family who could help you fight for her. And it is criminal that we treat healthcare and dental care like they’re only for rich white folks. It’s infuriating. We can’t ever take living without pain for granted. I hope you’re able to find some relief after so many years of silently suffering. You deserve it.
Thank you for sharing your dental story, I thought I was alone in this avoidance and deeply rooted fear and shame. I watched my mother have to get all her top teeth pulled for top dentures at 27, Medicaid poorly fitted and adjusted dentures that made it hard to eat. After being spared cavities until 30, I skipped care for two years and ended up with a mouth full of fillings and crowns (that took nearly a year of weekly payment, even with private insurance. I’ve had two teeth pulled that couldn’t be saved and when they explain how much even a fixed bridge would cost, I’m shocked.
I’m so sorry your teeth are hurting you, and I hope both you and your mom continue to recover quickly. I know this pain intimately and how encompassing it is and damn infuriating that healthcare system needs separate insurance for our teeth and eyes.
Thank you for making me feel like it wasn’t just me. And it wasn’t me or my fault, it was a system that didn’t serve anyone, it was just enough to get by. I hope you get a chance to never have them ask again, but I’m sorry they didn’t save them in the first place. We all deserve that.
Oh my, this story breaks my heart. How is your mom today? I get so angry and sad reading this story. What can we do to make change? I think we all need to start by changing to the independent party to send a message and stop donating to politcal bull crap! I have 4 implants and come fm a seemingly privileged background! Teeth issues can happen to all of us but I'm disgusted hearing what you've gone through and how it made you feel. This story moved me and made me cry thinking about the night my mom died and what all I don't know about what happened and my guilt that I'll never get over until she comes to me in my dreams ( hoping this happens). ❤
Keep on keeping on Ijeoma!
Thank you for writing so candidly about these experiences. I wish more people in economically-resourced situations knew what it was like to try to get care on Medicaid. I wish they knew more fully the impossible decisions that poor people make around their health and wellbeing in our society. It might help us to address our healthcare and economic crises with urgency and compassion. I hope your mom continues to regain her health day by day, and I hope you are able to heal more fully from your dental trauma. You should have never had to endure this.
From the situation with your mother's hospital care to the tooth trauma, I can identify. I am so sorry you had to deal with this, but I am grateful your Mom's life was spared. I had to advocate for my mother in the same fashion having family doctors and friends on the phone to speak with the hospital staff. Otherwise they would never have listened to me. Mom's first stay happened just prior to Covid so I was able to stay in the hospital and nursing home with her. Everything about how they treated you and your mom is exactly how they treated my mom despite me being there advocating 24/7. Our healthcare system is jacked up for poor people. And the teeth. I have the same exact remaining teeth, inability to chew food properly on either side now and I just don't have the money for implants. I'm swallowing food pieces whole, which I'm sure you know upsets our digestive system. I'm so sorry for all of us struggling with healthcare in this country. It is criminal, it is cruel, it is so unnecessary.
Your mother’s story is so similar to what happened to my dad… he had diabetes and C.diff that had gone undiagnosed for months (and his primary dr was his friend!!) and went into DKA twice. I found myself suddenly overnight talking to doctors and nurses and trying to understand as much about his condition and the possible future ahead if he pulled through, and this went on for 4-5 months. My friend who is a physical therapist was the one who pushed me to ask for him to be put into step-down care, a facility like an ICU but actually covered by his insurance. The hospital social worker was shocked at my request because “most people don’t know about that”. Initially they wanted to send him back to a rehab facility (like CareOne) which was where a lot of health issues had stemmed from. And hate to say, but most employees at places like that are home health aides… it’s not adequate for someone with serious issues. It is unreal and shameful how the healthcare system has failed so many. I am so sorry for the trauma you’ve experienced firsthand and with your mother. Thank you for sharing this and be easy with yourself. Easier said than done, I know.
FWIW - my dad had to get dentures due to many teeth issues (diabetes and also smoking and years of untreated gum disease) - and he went to a local dental school (U of Penn) and got an amazing deal. It was seriously like 1/3 the price for a full set. He was finally able to chew again. Might be worth looking into.
Ugh. I really feel for you.
I have two co-workers who are traveling to Costa Rica next month to get implants. Their mouths are wrecks, they want mouths that work, and the only place they can afford is south of the US border.
The US healthcare “system” (ha!) is a horrible embarrassment.
Hoping things look up for you and your Mom.
Thank you for sharing your story. I am glad your mother is out of the hospital. Thank goodness for your cousin! And I hope that you are all well. The portion of your essay about dental care really resonated. I had a similar experience growing up and it is so painful to be someone who loves to smile but who was unable to smile without covering my mouth well into my third decade of life. Force of habit means I still cover my mouth - even though I have finally - managed to "fix my teeth." Again, thank you for sharing.