My mother, who famously holds very little nostalgia for events, times, or places that have passed from her immediate concern, will often say, when prompted to recall a memory, that she just let that go a long time ago. It’s over. Move on. I understand that point of view more as increasing years of experience add layers upon layers of memories. And, in light of the privileged perspective of hindsight, my mother’s practicality in such matters also puts a bright spotlight on the events and people and places that she chooses to keep present in her thoughts.

So recently, 20 years later, I wondered what made the horrific events of September 11 so personal in the minds of the overwhelming majority of Americans that it has become more like a touchstone, a watchword? To what other event besides The Alamo do we attach “Remember” or “Never Forget?”  Perhaps even more fundamentally, I wondered what is it that makes something important, so important to people that they change in some way as a result?

* 9-11 took us all by surprise. It was something that could not be prepared for. People who went to work as normal that morning never returned home. People who said goodbye to loved ones in the morning never said hello to them again. The shock of it seared the moment in all our memories so that we can recall where we were when we first heard about it, not unlike when JFK was assassinated, or MLK or RFK. It was unexpected, unplanned for, and for the vast majority, completely out of the realm of our experience.

* It was televised and broadcast all day long and all night long for over a week. The events unfolded in front of our eyes in real time. There didn’t seem to be a news channel or outlet anywhere that didn’t run continuous, wall-to-wall coverage. It was hard to break away from this constant barrage of information, and people willingly sat in front of their TVs for hours at a time watching the same horrifying images repeated over and over again to the extent that psychological experts were advising us to set time limits on our consumption of that news.

* Although most people did not suffer the loss of a loved one, the heartbreaking stories of those who did were meaningful. The spouses who lost their husband or wife; the parents who lost a child; the children who lost a parent. The photographs of their faces, lists of their names, stories of their extraordinary valor or their everyday humility. We took these people into our hearts and held them in our thoughts. We shared their stories. We prayed for them. We did not have to be there in person or to lose a loved one in the tragedy to totally understand and enter into the sorrow with hearts full of compassion.

* And, of course, the sheer number of lives lost and injured, the massive destruction of property, the meltdown of community life in New York City. When the events began to emerge as facts and figures, translating all that had happened into dollars and cents, percentages, and statistics, our growing understanding of the scale of loss supported a growing sense of that loss.

* To many, this was an act of aggression by a foreign power on our home soil that had not happened for hundreds of years. It inspired retaliatory and hateful rhetoric, quick rushes to judgment, finger-pointing and jingoistic actions against innocent people. It was responsible for instituting a sweeping loss of personal freedoms under the Patriot Act, to which the majority of Americans gladly submitted for the good of the safety of our country. 

* The response was quick, self-sacrificing, and proportionate to the scale of loss. Men and women rushed to the site to offer the expertise of their specialized training in emergency first-response and some died in their efforts. Those of us who did not go answered appeals for financial assistance with immediate donations from around the country and around the world. Ground-Zero was memorialized and billions of dollars were spent on that and the reconstruction of the commercial landscape. To this day, charitable foundations are ongoing, collecting money to support the survivors and their families and the memorials.

The people who died in the tragic events of 9-11 are gone, leaving behind grieving family members and loved ones. Depending on your religious point of view, they either simply ceased to exist or they left those last few anguished moments of fear and pain and entered into eternal peace. So, what is it about the event that makes it one of such solemn remembrance and still brings forth the same emotions and responses as the day it happened? Which one or combination of many or all of these elements is responsible for the enduring collective memory that still unites people across political, economic, and social spectrums in our country?

The reason I am curious about this is because my daughter slept in a cemetery last night. She is in severe chronic pain and suffers an array of disabling physical reactions to toxins in the air, clothing, food, on other people, in buildings and vehicles, in forests and farms, cities and countryside. After driving about 18 hours yesterday, she finally gave up and parked inside a remote cemetery to try and get a few hours of sleep. For over 2 years, she has been just one of hundreds of thousands of American men, women and children – including infants – who suffer from the serious and chronic effects of toxic mold contamination. In fact, just this morning, waiting for the oil change on my car, I struck up a conversation with another customer waiting for her car. Within 2 minutes, she looked at me and said, “Wow! You know about toxic mold illness?!” She and three of her four children have been suffering from this condition for several years and it was hard for her to believe that I knew about it. They are all around us.

* There was no way these people could have planned for this to happen to them. Very often, they live in the same moldy homes and towns as others, most of whom do not seem to be affected by mold. Many are unable to address the problem until they are living with disabling and chronic symptoms. Almost all have amassed enormous debt for medical tests and treatments. Rarely does an MD pick up on the root cause and tell them to get out of mold while they still have time, before it’s too late. The shock of realizing my daughter has this illness is as painful and traumatic today as the day we first talked about it. I remember her telling me about her discoveries and her intention to leave everything behind – home, career, possessions – in pursuit of health. It is seared into my memory.

* There actually is wall-to-wall coverage of this ongoing tragedy but it’s a private, closed loop of communication. Because family and friends tend to not believe that their loved ones are actually suffering from something “real” (not made-up in their heads), these sufferers go underground with their illness. There are numerous private social network sites where thousands of toxic mold sufferers safely communicate with each other, seeking support and answers to the hard questions like, “Is it worth living to be tortured this way”, and “My baby is so sick and we used up all our money trying to find a non-contaminated place to sleep,” and “My husband doesn’t believe that I am so sick and he is taking my kids away and I may never see them again,” and “I slept in my car by the side of the road for the first time last night and I was so afraid and felt so disgraced,” and “I was reacting so badly to the smoke from the fires that I was convulsing while trying to drive away.”  If the general population of America was bombarded with wall-to-wall coverage of these innocent people and what torture they are enduring and what lengths they have to go to in order to just stay alive, I wonder what kind of outpouring of merciful, compassionate help they would receive. How could anyone possibly still disbelieve?

* Before my daughter realized over 2 years ago that she was suffering from chronic toxic mold illness, I’d never heard of it. I was in my early 60s and I had never heard of it. That’s what most of my friends and family tell me – they never heard of it. The woman I talked with today said none of her friends or family had ever heard of it before. However, as I began to research the illness, I found countless stories of other people that were exactly like my daughter’s. Heartbreaking! Within just a few days, I was on the phone with a dad I’d never met, weeping with me, describing how devastating it was and how it had changed his family. And yet, it is next to impossible to elicit that same compassionate response from most people without firsthand experience. The general response is, “I never heard of this so it doesn’t exist.” Or, “it’s a mental illness” or “they are just pretending.” I’m stunned. Where is the compassion? The most comforting words I could think of today when I said goodbye to the other car shop customer was, “You are not alone!”

* Since the CFS outbreak at Incline Village in Lake Tahoe in the 1980s, there has been surprisingly little research into the problem of toxic mold reactivity, which is odd since the incidence is growing exponentially every year, and toxic mold patients are begging for help from the scientific community. They hold a vast catalogue of shared information on what they react to, how quickly they react, how their bodies react, long-term and short-term symptoms, what weather conditions and manmade chemicals exacerbate their situation to the point of total disability, and more. Conversely, what works to help alleviate the distress and symptomology. They live with this torture 24 hours every day so they know it very well. As I listened to my sister car customer this morning, without asking her for a description of her symptoms, she listed off everything that I’ve heard my daughter say, everything I’ve read from other sufferers. Disappointingly, the response from family and friends and the medical community and society in general does not equal or come close to the mushrooming pervasiveness of the problem.

* Not 3,000 Americans, but hundreds of thousands – by some estimates, over a million new cases every year – are suffering right now from toxic mold illness. The effect is catastrophic, not only individually but societally. In terms of dollars and cents, these people lose homes, vehicles, clothing, jobs, friends and families – everything due to toxic mold contamination. Everything is lost and there is no insurance coverage for this. There is no national foundation set up to help them stay alive and work to heal their bodies. There is no community help organization. No bake sales. No t-shirts. They are on their own and sometimes literally alone. You can figure the financial toll of living without any income, then double that by cutting out the stability of a home (i.e., live in a rented vehicle while you drive in a constant search for clear air) that removes your access to indoor plumbing, kitchen appliances, and storage space. They cut corners and deprive themselves and sometimes make their situations worse just trying to save money. These are your neighbors, your friends, your loved ones.

* There are some brilliant people in this subculture of environmental refugees who write books, publish podcasts, admin chat groups, interview experts, and lobby the government and medical community to throw some money at this growing problem. Typically, they are ignored or suffer the personality trashing that our society has become so adept at employing as a means to discredit and shut up an unwelcome voice. The woman I talked to this morning said she was grateful for her high intelligence because she is constantly required to think about things ‘normal’ people never consider. She has to manage so many life-threatening situations. For example: don’t try to kill yourself right now, this is a symptom of mold; get out of this place right now.

Just in terms of scale of the problem, toxic mold illness is responsible for an incalculable financial cost, loss of work productivity, and loss of contributing members of society, loss, loss, loss. These innocent people spend their time staying alive, trying to heal, and problem-solving and providing emotional support to the growing ranks of their fellow sufferers. For so many, there is no other ‘safety net’. Many of them have healed and others have learned how to manage their symptoms. And, as a wise friend of mine pointed out, they are the canaries in the mine shaft. They are here to tell us that we are irresponsibly destroying our environment and we are not taking care of our own. They have been forgotten. I mentioned the “canary in the mine shaft” to my new friend this morning and she replied with a tired, forlorn voice, “I don’t like being the canary.”

It is a long, long road to recovery and healing that could be shortened if the rest of us – who are not actively living with toxic mold illness – demonstrated compassion and concern. This is something we know how to do.

You can learn more about toxic mold illness and also help my daughter by visiting our GoFundMe page: https://www.gofundme.com/f/Help-Angela-Heal-From-Toxic-Mold-Illness?qid=6fd5e9581c0093a979af3d89d1b1caa2