Rebecca’s Mom

October 25, 2018

I remember thinking when this year began that things were finally coming together for the Scheinert girls, who have had no shortage of ups and downs. My mom, two sisters, and I have been through it all together. I was diagnosed with Juvenile Rheumatoid Arthritis before I could walk, and a variety of other autoimmune diagnoses followed. The one constant throughout the years of tests, treatments, misdiagnoses, and side effects was my mom, who is a force of nature. The best phrase to describe Maureen Hunter is highly competent, but it does not give her nearly enough credit. For over a quarter century, she single-handedly navigated the obstacle course that is U.S. healthcare, while working full-time, as a single parent. In all this time, I cannot remember seeing her flustered once. So, at the start of 2018, when she finally treated herself to a second house in Mount Pleasant, South Carolina (both for the beaches and to be closer to my youngest sister), and when both my older sister and I began planning our weddings, it seemed like the living might start being easy. Famous last words.

She was hard to reach in the spring. We could go weeks, maybe even months, without speaking. She showed only perfunctory interest in some major life events, like getting engaged, quitting my job, and moving cities. She was never an effusive communicator, but she also was never unavailable. I felt lost without my mom, who was my sounding board, moral compass, and best friend. Even the smallest of decisions felt impossible to make without her advice and the big questions just kept coming. I was hurt and offended, but never even considered that she might not be okay.

After Mother’s Day brunch, my sister asked me if I noticed that Mom was off. I had no idea what she was talking about, and so we set up a bit of a test. My mom was going to be working from her company’s Manhattan office later that week so Jessica arranged to have coffee with her during the work day and I arranged to have dinner with her after. She showed up to coffee without her wallet, and got lost trying to find the Midtown restaurant for dinner. This is a woman famous for her intuitive sense of directions. Maybe something is off, I considered. That “maybe” disappeared quickly.

Over the course of the next three months, I could not estimate the number of (I) sidebar conversations my sister and I had about depression, Alzheimer’s, mold toxicity, even West Nile, (ii) google searches for assorted symptoms made, and (iii) family friends with medical degrees I bothered for “just a quick call.” We began keeping a list of any strange experiences we had with her, from the understandable (forgetting an airport pickup), to the bizarre (finding her watching the TV’s guide screen for hours at a time), to the dangerous (turning the wrong way onto one-way streets). By July, it was clear that she needed to see a doctor, but we had no idea what kind. Were we observing something psychosomatic, neurological, infectious? Would she even agree to go?

Then the pace quickened. She herself began noticing some of the ways her thinking was impaired as we began visiting doctors. The neurologist ordered an MRI. Clean. The primary care physician ordered blood work. Clean. They suggested she was depressed. We tried to accept that conclusion but it just didn’t feel right. The doctors hadn’t seen her before this. They don’t know how capable she is. This felt bigger, stranger, so we pressed on.

We spent a month waiting for a neuropsychological assessment, but the earliest date we could get was just too far away. We reached out to anyone and everyone in our network before our dad’s uncle called in a favor for an immediate appointment. As we were exiting that three-hour appointment, our mom visibly flustered, my big sister hung back to speak with doctor. “I am so sorry” he said, and hugged her. It wasn’t depression, but it wasn’t Alzheimer’s.  We at least knew what it wasn’t, but we had no idea what it was.  My sister and I wondered which was scarier, but before we had time to answer that question, things got even worse.

By her next round of diagnostic tests, she was completely unable to take care of herself. She seemed happy enough, but confused, aloof, and entirely uncommunicative. The doctors gave us their three best guesses: Creutzfeldt-Jakob Disease (CJD), autoimmune encephalitis, or a paraneoplastic tumor. A friend of mine had battled autoimmune encephalitis a few years prior, but her symptoms presented like meningitis, so I dismissed that possibility right away. The results of her blood work were negative for AE, but the results of her spinal tap were suggestive of CJD. CJD, the worst-case scenario option, the death sentence.

Knowing that we couldn’t give up, I pulled the last trick I had left out of my hat. Earlier in the summer, I remembered that a sorority sister of mine was a resident at the renowned neurology clinic at Columbia-New York Presbyterian, but decided not to bother her. But faced with the reality that my mom would die within the year, I felt I had nothing to lose. I had to get her phone number from another friend and send a “hey, long time no see” text, before launching into the saga describing what we’d been through.

My mom was admitted to Milstein Hospital that night, where the highly competent doctors promised that if something else, something treatable, was causing this, they would find it. In the meantime, she started a course of steroids. That night, while my aunt and  big sisters waited for her bed to be ready for hours from the emergency room, my mom sent me a text message. It simply said hi and that she loved me (and then some nonsensical word), but it will forever be the best text I’ve ever received. For weeks she had been unable to read, let alone text. I tried to temper my elation, but even if this was the only moment of awareness we would ever get from her, it was worth it.

I should have let myself finish my jumping-on-the-bed, happy dance, because by the end of the week she was back. The doctors ran a more comprehensive panel of blood work and diagnosed her with Hashimoto’s Encephalopathy, a type of AE, that is treated with a course of steroids. Her recovery was even quicker than her decline, if you can believe that, making the term “miracle” feel like an understatement. She will not only walk my sister down the aisle and dance at her wedding this month, but she has asked to give a toast, thanking all of the friends and family who rallied around her when she needed a hand. For brevity’s sake, I did not make mention of many of the people that were there day-in-day-out, opening their homes and sacrificing their time to make she was always taken care of, safe, and unafraid, but I will forever be humbled and inspired by display of support that assembled around my mom. It is the small things I will remember; the kind words people shared about her character, the weekly (even daily) check-ins on our well-being, the completely unrelated tasks to maintain her house, the friends who opened up to me about what they are going through, the list goes on and on. It is far too easy to see her improvement and forget, but I hope that I can keep this feeling of gratitude and appreciation with me; appreciation for who my mom is, how generous people can be, and how precious every moment together is,  because I now know all too well that everything can change in an instant.