Can we turn a New Mexican mother’s horror story into one of hope? That depends on you.

I am in a restaurant writing as fast as I can, trying to capture every detail of a mother’s story in this liminal state of emerging from the pandemic. I live in a world of quantitative data, meaning that countywide surveys of parents reveal to our organization how families struggle to access vital services for survival. I don’t often sit and hear the stories of people living their lives facing adversity, learning about hardships from what we call qualitative data. To tell the full story of New Mexico’s residents, one requires a mix of solid numbers for those official government reports and time spent in a cafe hearing about life’s challenges from parents and youth.

This story is not easy, but important, for me to write because I know the mother and son sitting across from me at Flying Star in downtown Albuquerque. Diana and son Eric (their names are changed to respect their privacy) have been in my life for six years, starting when I became a Big Brother mentor to a fourteen-year-old Eric.

When you hear, “Let’s get back to normal,” it is my hope you will remember this story because sending Diana and Eric, and all the families they represent, back to the life they had pre-pandemic would be a living nightmare. I pray these words can serve as a catalyst for community dialogue about how to ensure we build a post-pandemic New Mexico where 100% never have to endure what Diana and Eric did…and do.

The story starts in a time when global pandemics were only the stuff of sci-fi movies, or so we thought. Eric was in high school in Santa Fe in 2018 and his eyesight was failing. His glasses didn’t help in class and this could not have gone unnoticed by teachers. Eric literally couldn’t see well nor read, but that did not mean a trip to the school nurse leading to referrals to an eye specialist. Instead, Eric just fell behind, dismissed as a problem student who didn’t care.

Mom Diana, who worked part time outside the home and part time inside raising four children, eventually got Eric to a diligent eye doctor who found, through a series of tests, a brain tumor.

This led to Diana taking Eric to the Cancer Center in Albuquerque for radiation five days a week for six week. This meant Diana had to leave her paid job to serve as Eric’s health advocate and caregiver. Diana’s husband, Eric’s stepfather, had a low paying job with the state government so at least there was enough money to get by with one breadwinner…just barely. Eric started getting better and the entire family was relieved. It’s here Eric’s mom moved him to home schooling, unsatisfied with the way her son’s health and education challenges were handled, or more accurately ignored, at school.

Soon Eric started to become lethargic, hallucinating, anxious and then his body started with twitches. Diana knew that had to be serious and took Eric to two different Emergency Rooms in Santa Fe, with staff that said Eric was fine physically, but might have emotional problems. Diana, truly a force of nature, took her son for a third opinion, driving 90 minutes north to her home town of Taos where hospital ER staff told her, “Eric needs to be in a mental institution.” What Diana heard was “Eric is crazy” and she knew in her heart that was not the case.

Luckily, Diana managed to get Eric seen by a psychiatrist who determined that his case was not a psychological issue, and he needed to be immediately admitted to UNM’s speciality clinic in Albuquerque.

Eric had what is called a lumbar puncture and he was diagnosed with NMDA-R antibody encephalitis, described in the book Brain On Fire: My Month of Madness by Susannah Cahalan. (The book is a chilling and vital read about all of our vulnerabilities.) Luckily for author Cahalan, her one million dollar medical bill was covered by insurance. Eric’s were covered by Medicaid. Diana’s travel expenses, shuttling between Santa Fe and Albuquerque, nor her 24/7 care and tireless advocacy were not.

At this point, my writing in the cafe is put on pause as Diana pulls out movies on her mobile for me to see. Eric is in a hospital bed, hooked up to what appears to be a myriad of machines. I am shocked to see his condition, rail thin and convulsing. “You didn’t see this but you need to know how horrifying and traumatizing this was for Eric, me and our entire family.”

Eric, who has been listening attentively to his mother’s story, comments on one of the videos where he is convulsing, “I don’t remember any of that.”

I am shaken by what I see. Diana had sent only a few email updates to me during this time and I had no idea the magnitude of the crisis.

Eventually, through a combination of medical care and one heroic mother who would not accept anything less than the best care for her son, Eric recovers. Diana states matter of factly, “I was sitting by Eric’s side as much as humanly possible and demanding that my son be cared for week after week. If I had not been his advocate, I doubt he would be here now.”

Somewhere during Eric’s hospitalization, Diana moves her entire family to Albuquerque to be close to the hospital and the assortment of health care professionals required for her son’s survival and recovery.

As Eric is allowed to move home, his recovery will be a slow one. Eric had been seeing a counselor in Santa Fe prior to the medical nightmare and Diana sought to get him mental health care services in Albuquerque. It is at this point we start to see the challenges our families endure as they seek services for survival.

While I know, from data, that large segments of the population struggle to access services, it is quite different to be staring across a table at a mother and son, two people I deeply care about, and hearing that life is a constant struggle. Eric, diagnosed with PTSD and ADHD in second grade, has benefited greatly from caring counselors. He has not benefited from having his care taken away (when the former governor shut down mental health care providers serving the most vulnerable New Mexicans). He has not benefited from providers who don’t accept Medicaid nor by providers who now are not quite comfortable with Eric’s tumultuous medical history. “Trying to transfer services for Eric from Santa Fe to Albuquerque has been near impossible,” shares Diana.

Add to all this that Diana’ husband, who benefited from mental health care to address substance use disorders, also struggled to find an affordable provider in Albuquerque.

And then the pandemic hits.

Husband is furloughed. And access to what our organization calls the ten vital services for surviving and thriving become problematic if not life threatening. One vital service, food security, provides a good example of the barriers we place in front of our most vulnerable families, before, during and after a pandemic.

Diana explains that even with food stamps, the family runs out of food and money before the month ends. There may be a week or two where Diana stretches rice and what she gets in commodities. She waits two hours at one food bank twice a month, an hour at another every 3rd Saturday and has to be at another at 7:30am in order to keep her family from hunger. Sometimes the pantries run out of food because, as Diana notes, “In Albuquerque there are just so many more families than Santa Fe standing in line.”

As for housing, Diana talks about waiting lists or needing to be homeless to qualify for help. She looks every week in the paper to find lower rent. Her current landlord is described by Diana as, “a kind man who tries to work with her when money gets tight.”

It’s been two hours of hearing what I can only call a mother’s horror story. I intend to do research into Bernalillo County’s resources in post-pandemic New Mexico to see if I can help Diana and Eric. Part of me felt helpless and unsure what to offer these two wonderful people. They are not data points indicating “challenges,” they are caring people who deserve support to weather this unstable economy, joblessness and Eric’s long road back to what we hope will be full recovery. They know of my work and I was humbled when Diana thanked me for what I do.

As she left she mentioned she would need to get a charge for her battery, as their car “dying” is a common occurrence. I asked what I could do, as I was getting ready to hop in an uber to another appointment and Diana offered cheerfully, “No worries. This happens all the time and we always get a nice person with jumper cables to help us.”

As we went our separate ways after hugs and selfies, I found myself with colliding emotions of anger, exasperation, sadness and bewilderment. The Diana’s and Eric’s of Bernalillo County, and all counties, are depending on those of us with stable jobs and resources to focus our altruistic action on building a new normal — where 100% are given the service and tools to be healthy, safe and become self-sufficient.

Ironically, Bernalillo County is our organization’s newest locality to start our book club, reading 100% Community: Ensuring 10 vital services for surviving and thriving. Could the timing be any better, with local stakeholders learning how to build the capacity of city and county government to ensure families like Diana’s and Eric’s are helped so that they can move from surviving to thriving? This particular book club, with participants that include a state senator and state representative, has their work cut out for them.

Turning a mother’s horror story into one of hope will require that we stop the rush to return to a normal that disrupted and diminished so many of our families. We have the resources, framework and a blueprint for each county to do groundbreaking capacity-building work and end service barriers. Some counties have started, following the blueprint of 100% Community to initiate a local 100% New Mexico initiative.

Our choice is stark in New Mexico and across the nation. Backward or forward. Apathy or altruism. Isolation or community. I’ve made my decision and now you can make yours.

Visualize! Mobilize! Thrive!

Please excuse any typos as I construct an article at 3am. These stories are mine and mine alone. I do not represent any organization here. Questions? Push to front of reading list: 100% Community: Ensuring 10 vital services for surviving and thriving

A NY Times bestselling author, social justice activist, Oprah guest, co-author of Attack of the Three-Headed Hydras, 100% Community and Anna, Age Eight.