Updated: Jan 6, 2021
by Catherine J Rippee-Hanson
Acceptable losses are usually defined as - destruction or casualties that are considered reasonable because they happen in the context of war or military attack... but there is something happening in the United States that I would never have imagined. This last year it seems that empathy and concern for each other have been harder and harder to find and there is nothing reasonable about it. At what point - exactly, did the death of 355,000 people with 355,000 families not be of concern to anyone? How did we get to the point that those deaths are just acceptable losses... a truly incalculable loss - but acceptable, nonetheless?
There has been no military attack or the kind of terrorism that gripped the nation with fear and the loss of 2,977 lives in the 9/11 attacks in New York when everyone in the nation grieved together. Everyone had empathy and held tightly to each other as the truly United States.
Now, with 2020 behind us, the year that Covid-19 caused more loss than anyone in modern history could ever imagine... perception of incalculable loss leads so many to brush it off with an apathetic "collective shrug" of the shoulders as 355,000 deaths are somehow "just a small percentage," and considered acceptable. How this became reality in the world around me has confused me and really made me wonder about how selfish, cold, mean, and unfair people in American society have become. You might say that I was at a loss to understand.
I would argue that any lost lives should not be considered acceptable losses.
Having a loved one with a serious brain disorder has made me acutely aware of just how our society can set aside the humane treatment of those who we somehow view as being deservedly afflicted. So, why should I be surprised that in less than a year people seem okay with the suffering of hundreds of thousands of others? This is what has been happening with people who have serious brain disorders for many, many decades - more than half a century. 1 in 25 Americans lives with a serious mental illness, such as schizophrenia, bipolar disorder, schizoaffective disorder, or major depression. I am not witnessing something new and shocking with so many thinking so little of the pain of 355,000 families. This is familiar.
Without delving into the chaos and politics of 2020 and the separation of facts from reality along with the divisiveness in a "them against us" society - as the number of deaths grew...this acceptance of loss had me perplexed; puzzled. What had happened to kindness, sensibility, empathy? Where did the concern about the most vulnerable in our society go? But then I realized that I had already seen this before Covid-19 arrived, I had been witnessing a similar apathy for the last 33 years, as someone with a loved one with serious brain disease through no fault of his own. In knowing other families like mine that cannot get the help they need. Cannot find the answers they so desperately need. Family members who have no rights.
We have the freedom to choose how to think about and respond to what happens in the world around us, including limitations, challenges, losses, and uncertainty. Even the ability to choose our attitude toward suffering is something we always have control over, right? Even in the worst of circumstances...individually and collectively. After thinking about it, I came to the realization that this is nothing new to us. Haven't we, collectively. been marginalizing or apathetically ignoring the need for change for the most vulnerable for an exceedingly long time? The seriously mentally ill... the homeless... the developmentally disabled?
“Without crisis there is no merit. It is in the crisis that the best of everyone
emerges because without crisis all winds are only slight breezes. To talk about
crisis is to increase it, and to remain silent in the crisis is to glorify conformism.
Instead, we work hard.”
One in 5 people will suffer from a serious brain disorder at any given time all over the United States. And they will not all be getting treatment, medication, counseling, supervision, or professional care to help with the daily functioning that most people take for granted. It often seems like no matter how much the families try to do - we are always just left dealing with the crisis as those in "power" or with some authority, turn their back to struggling families. We are to "fix" what is seen all too often as "our fault" for the situation even occurring. Answers we find are still lacking. Solutions we seek and that should be in place are elusive. We know all too well that no promise is a fully complete one... or committed one. We cannot guarantee that the professionals have enough compassion. And we are expected to be grateful for what little is done to truly help our loved ones.
In my family, it is basically my Mom, my twin sister, and I, who worry about and try to take care of our brother's needs for the last 33 years. We feel isolated and separated from even other people in our family as do so many others who struggle alone for years and years without the benefit of outside help... expected to "be" the very professionals that we seek. I do not believe that until the unimaginable happens to people that they cannot understand or have compassion. I do not believe that it is too much of a burden for our society to care enough to fix the absence of solutions for the most seriously mentally ill who suffer from brain disorders. We are expected to find a way to manage our brother's illness, develop strategies for dealing with his symptoms, calm him during psychotic episodes... and apologize to others for what they see as our deficits in handling the situation.
We continue to rise again and again, even in situations that seemed impossible, simply with our own spirit, courage, perseverance, fortitude, and grit. We do what others might never comprehend. We do not give up on ourselves or on others.
There are those of us who are just naturally empathetic, and it is present in how we deal with all others in our family or out of it... We all know who we are, and we know each other. And we know especially in our own families or communities - who are not. Some people can ignore the circumstances of suffering they see and have nothing of themselves to give. There is nothing lonelier than trying to do what you believe to be right to care for your loved one when it seems like the entire world does not understand. Some family members might not even ask how a loved one is doing. They do not want to know because they know the answer will never be what they want to hear. Too often the symptoms of those with Schizophrenia, Bipolar, or Schizoaffective Disorder are just seen as having behavior problems. Even when their disease and the symptoms cause them to be extremely volatile, and at times, floridly psychotic - families, parents, caregivers are afraid their loved one will die.
My brother, James Mark Rippee sleeps along a wall at a strip mall in Vallejo. As nights become colder, he prefers to sleep during the day. (PHOTO BY ANNE WERNIKOFF FOR CALMATTERS)
Virtually all mental health advocates have a loved one that they either struggle to care for, strive to find help for, or seek to educate others to change their paradigm and become more empathetic towards those who have serious mental/brain disorders. And too many that I personally know have already lost their loved ones for the last time. Suicide and early death are common denominators to many while others fear those outcomes every single day. Yet they continue, through resilience, tenacity, and creativity to find a way out of this crisis or at least a way to cope for themselves and for others. We do what we have done because we "must." There is no apathy in the mental illness advocacy community. Selfishness and minimizing someone else's pain or torment just does not occur, but we know that it exists just outside our circle. Everywhere... like a pandemic.
Education can make a difference in some cases. However, there remain many people even within an immediate family unit - who have no desire to learn. They have made up their minds and judgment on both the afflicted loved one and those who try to help them. Compassion is a sympathetic feeling towards another person without attempting to know their feelings or even understanding the intensity of their sufferings. But, you know what is right. On the other hand, empathy is trying to imagine another’s problem coupled with a strong feeling for that person, understand his/her problem, and share the feeling or imagine yourself in their circumstances. Some people, even family... have neither.
It is hard to protect them or even shield them from the public, and near impossible when they are also homeless. Most people cannot reconcile their feelings between the human being and their illness - and many just keep their distance. For my brother, like so many others, the reality in his mind is a horror show repeating over and over and over. He will at times be sweet and lucid only to decompensate with more trauma of homelessness, beatings on the streets, hunger, freezing in desolate areas of his hometown - isolated with his delusions and fears.
Living with serious brain disorders, they have their “civil rights” to refuse treatment preserved by laws in desperate need of reform - all the while it is perfectly clear that their circumstances are far from civil, or what is right and far from humane. But they are given no thoughts of hope or chance of recovery or even empathy. Apathy prevails... acceptable losses.
Preserving people’s “rights” and leaving these people to suffer since their brains are ill in a way that they are simply not able to recognize their own illnesses, (anosognosia) we need to find ways to help people with their “right to treatment” instead. It is time. It is far past time...when they are safe and have a real chance to stabilize and maybe even heal some... that is civil and right. We are justifying a humanitarian crisis that has nothing to do with protecting civil rights. It is more to do with being forced to just exist with an unmanageable illness.
Just as people are now trying to find the answers to the COVID-19 crisis - families like ours have been fighting for significant and meaningful changes to the laws and changes in people’s perceptions while trying to keep our loved ones safe and alive. There is nothing civil, right, or humane about the intentional disregard for human beings who are clearly "gravely disabled," and that is exactly how current perceptions and apathy thrive without vision… to what things “should be” like.
Will 2021 be the year that change comes for those poor souls who are afflicted with serious mental illness/brain disorders? Just as we hope that Covid-19 will be controlled and eradicated because far too many people have lost their lives already and more will be coming... we also hope that the mental healthcare system and society's perceptions do not continue to harm our loved ones through lack of empathy and perhaps the pervasiveness of apathy will change. I no longer wonder why people have become so apathetic as I have concluded and rightly so, that this is how our society has always behaved and coped with misfortune and crises that are hard to understand. Marginalize and minimize the needs of others. Families like ours have been striving for improvement by educating and pulling everyone toward empathy through pure grit - including lawmakers and medical professionals, as we seek resolution for our loved ones with fragile souls. Creativity will come out of these crisis'...
Not acceptable losses from a pandemic nor from serious brain diseases...
Because "In the midst of difficulties, opportunities arise."
"We can't expect things to change if we keep doing the same things.
The crisis is the greatest blessing for people and nations because the crisis brings progress. Creativity comes from anguish as the day comes from the dark night. It is in the crisis that inventiveness, discoveries, and great strategies arise.
Those who overcome the crisis overcome themselves without being 'overcome'.
Those who attribute their failures and difficulties to the crisis rape their own talent and give more value to problems than to solutions. The real crisis is the crisis of incompetence. The disadvantage of people and nations is laziness in seeking solutions and ways out.
Let us put an end once and for all to the only dangerous crisis, which is the tragedy of not wanting to fight to overcome it."
~ Albert Einstein