PROVIDENCE – If I were able to make a movie or a TikTok of the last week, the title would be: “Dances with Refrigerators.”

INTERIOR SHOT, CLOSE UP: On Tuesday morning, Jan. 28, about 7 a.m., while sitting in a chair in my kitchen, trying to stand up and feeling a bit unsteady in my legs, I took hold of the handle to my freezer part of a taller-than-six-foot refrigerator unit.

But, instead of pulling myself upright, I pulled the refrigerator down upon me, banging hard on the kitchen floor. My left leg was pinned underneath the refrigerator, but I was then able to pry it loose, get myself into a sitting position, and call 911. [I also called the apartment complex manager to arrange for them to let the Fire Department’s emergency response team enter my apartment.]

The Fire Department’s emergency response team then transported me to the ER at Miriam Hospital, where I arrived at about about 8 a.m.

The ER medical team then conducted a battery of tests – including a CT scan, X-Rays, and blood tests – to determine the extent of my injuries.

No bones were found broken or fractured. But the blood tests revealed that my readings for my kidney function were poor, and the doctors decided to admit me. My eventual diagnosis, as written down when I was discharged on Thursday evening, Jan. 30, was that I had suffered “acute kidney injury.”

And, so began my adventure, what I have labeled, “Dances with Refrigerators,” borrowed from the early 1990s Kevin Costner film, “Dances with Wolves,” which captured the collision between Native American culture and Western expansionists. In my adventure, it explores the collision between patients and the health care delivery system – and the difficulties in being heard and being believed.

For the most part, all of the nurses and doctors at the Miriam Hospital provided good care within the constraints and demands of the health care delivery system.

How could I pull a refrigerator down on me.  
No one – the doctors and the nurses in the ER, and the doctors and nurses once I was admitted to the hospital – believed me when I told them that I had pulled the refrigerator down upon me.

As a result, it created a basic, underlying lack of trust between me, the patient, and my health care team. [Although all they needed to do to verify my story was to talk to the first responders to confirm my story, because they had righted the refrigerator.]

It was a case of what appeared to be a severe cultural clash – the care team thought I was lying, that I couldn’t possibly have the strength to pull the full-sized refrigerator down. [I have been using trekking poles for the last four years to get around, because my leg strength has been deteriorating as a result of having been diagnosed in 2020 with chronic autoimmune encephalitis, caused by a rogue antibody, GAD 65, that has been attacking the myelin in my thoracic region. As a result, I am being  treated with infusions every six months to control any further damage from occurring. The rogue antibody has attracted more attention of late because it is the apparent cause of the chronic “stiffening” disease that is afflicting singer Celine Dion.

In the final discharge report, which was read out loud to me by the outpatient nurse who would be coordinating my future care at home, the care team had gone out of their way to describe the refrigerator incorrectly as a small unit.

“Really?” to quote WPRO news reporter Steve Klamkin.

Why didn’t the care team believe me?    
The “disbelief” about the refrigerator, howver, then colored all of my future interactions with my care team over the next two days.

Even though I had been “officially” admitted, there was no place to put me, because there were no rooms available at The Miriam. At about 3:30 p.m., I was wheeled on a stretcher into an impromptu holding area in the emergency room area, where I was held until 10:30 p.m., some seven hours later.

I was having difficulty urinating following having pulled the refrigerator down upon me. My kidneys were producing urine, but I was unable to void it from my bladder. This was confirmed when a sonogram scan of my bladder was conducted around 8:30 p.m. The urine was then removed by catheter.

My phone battery was running low, but I was told that there was no battery charger available. [It turned out that there was a way to recharge my phone, once I was in my “room.”]

As a result, I arranged through my son [who lives in Virginia} to have a phone charger dropped off for me – by my ex-wife’s current husband. He arrived while I was being catheterized.

I had no access to any of my medications – including my painkillers, which I had last taken at 6:30 a.m. that morning. When members of the care team asked about my pain levels, I could only try to explain about the lack of access to my prescribed meds.

Over the next two days, until I was discharged on Thursday evening, there was a continual dialogue informed by mistrust. My doctor who ordered the discharge also ordered the installation of a more “permanent” catheter – but I was discharged without any training for its proper use.

On Friday, the home health care nurse visited me at my apartment at noon, and when she took my blood pressure, it was extremely low. After drinking two cups of water, it was still very low; she advised that I should call 911 again, which I did, and it was off to the ER at The Miriam again.

But, after some nine hours of testing and some improvement in my blood pressure, I was released, having to take an Uber home in the pouring rain.

However, during my second stay in the ER, I had a chance to review all of the test results on my phone, using the app.

And the CT scan revealed a major finding regarding my underlying condition: “Cervical Spine: No acute fracture identified. Spinal fusion hardware as before. Abandoned ACDF screws at C7 [Emphasis added].

Just to place that new information in context: I had surgery on Feb. 7, 2024, to repair C7; but after the immediate improvement following that surgery, many of the symptoms had returned – increased pain, increased numbness, restricted range of motion in my neck and shoulders, loss of strength in my hands, arms and legs and feet.

The “abandoned screws” had not been identified by: one neurosurgeon, two neurologists, and one spine pain management specialist. It had not been identified by an MRI and numerous X-Rays. No one on the ER team was capable of understanding what the finding meant, because no one talked with me about the findings.

Translated, despite my continual complaints about what my body was telling me, no one was listening to what I was saying.

All the tests in the world don’t mean a thing if there is no communication with the patient. I knew immediately what the CT Scan meant regarding the “abandoned screws" at C7. But no one talked with me. The findings confirmed what my body was telling me.

Call last week’s adventure: “Dances with Refrigerators.” Dr. Doug Eby once talked at a lecture he gave at Brown Medical School about the need for medical staff to learn to listen to the patients in 10 different ways. It’s so true.