We have struggled for years to understand our son's mental illnesses. And maybe the term 'mental illness' is part of the problem. Neuroscientist and psychiatrist Thomas Insel was the director of the National Institute of Mental Health when he gave a famous 2013 TED talk about changing the way we think about and approach disorders of this nature by changing the terminology to more accurately reflect what is going on.
In the talk, Dr. Insel decries both of the common terms used to describe these conditions: mental illness and behavioral problems. Mental illness means a disease of the mind. This suggests that the issue is mainly a moral failing and that the problem can be fixed simply by changing one's mind. While changing one's mind might help, it cannot fully address issues based in the biological structure and function of the most complex organ in the body.
Behavioral health approaches the matter from a third party viewpoint rather than describing what is going on with the patient. It essentially says, "The way you act is a problem for others." Another problem with this view is that behavior is a lagging indicator. It is the last thing to show up in the progression of the disease. So we end up treating the disease the wrong way and we don't even recognize the need for treatment until very late in the game.
Insel contends that disorders such as depression, anxiety, bipolar, ADD, ADHD, schizophrenia, OCD, and Autism are brain disorders. Unlike Huntingtons, Parkinsons, or Alzheimers, "where you have a bombed out part of your cortex," these illnesses involve "traffic jams, or sometimes detours, or sometimes problems with just the way things are connected." He likens these diseases to heart "arrhythmia, where the organ simply isn't functioning because of the communication problems within it" and where you will find no major lesion.
Despite being tired and disappointed at seeing my son's wounds, I had complete clarity on what needed to happen next. I lean blue with a strong dose of red on the Hartman Personality Profile. I crave closure and decisiveness. So knowing what to do next helped take the edge off the horror of the situation.
If we can change the terminology to more accurately reflect disorders of the brain, it will not only affect the way we think culturally about these issues, it will affect the way research and treatment are approached. It will help us find ways to discover the disorders earlier so that early treatment can be undertaken. Insel notes that this same course has been followed with many diseases, so that rates of death and disability have plummeted for the likes heart disease, stroke, AIDS, and Leukemia.
I could readily see that the wounds were too superficial to require stitches. Yet I also knew that my son needed to get to an emergency room as soon as possible. While the physical wounds could have been treated at home, the psychological crisis needed more than just a home remedy because my son was still in danger.
As I thought about spending hours in a busy ER department at the other end of town, I suddenly remembered that a nearby emergency center (not physically attached to a hospital) had opened recently. We hardly spoke a word on the short ride there. The staff quickly showed us to a room. There were other patients in the facility, but it was quiet and free from noticeable drama.
My feeling of disappointment mainly surrounded my son's relapse. I had hoped that increased maturity and stabilized treatments had gotten him past feelings of self-harm or suicide. Maybe I should have known that this view was overly optimistic. Not long ago he quit a job that proved to be too demanding for him. I underestimated the resultant feeling of failure he felt.
A smaller portion of my disappointment involved the expense of emergency and in-patient treatment. We've ridden this train before, so we have a fair idea of the thousands of dollars it will cost us out of pocket, despite decent insurance. It will pinch our budget big time. Especially in this medical-bills-R-us year. (See 4/2/19 and 8/7/19 posts regarding my wife's rare condition.)
I'm not complaining. We will make it all work, even if it involves quite a bit of discomfort. This life comes with zero guarantees of smooth sailing unencumbered by physical and financial challenges. Marriage carries the risk that your partner could develop significant medical issues, as my wife discovered when I was diagnosed with Multiple Sclerosis two years into our marriage.
One neighbor quipped that when you choose to become pregnant, you are inviting a new person to join your family, and you have no idea who is coming. It makes no sense to whine that the child that comes differs from what you expected. Among the chief requirements for the job of parent is the task of learning to love the children that come to your family, whatever challenges they might bring. We applied for that job, and now we're trying to do it as best we can.
I believe that Dr. Insel's suggestion to change terminology surrounding brain disorders is sorely needed, because at present we simply don't know enough about the underlying causes of these disorders to comprehend how to properly treat them. We need better understanding. How well do those who have never struggled with major depression understand how it affects its victims?
Writer Andrew Solomon discusses his own struggle with depression and anxiety in this heavily viewed 2013 TED talk. He exclaims how grateful he is that he didn't live 50 years earlier when the available treatment was barbaric by our standards. But he also hopes that 50 years from now, those with brain disorders will be happy that they didn't live in our day because our treatments will seem barbaric by their standards.
I believe that Dr. Insel's suggestion to change terminology surrounding brain disorders is sorely needed, because at present we simply don't know enough about the underlying causes of these disorders to comprehend how to properly treat them. We need better understanding. How well do those who have never struggled with major depression understand how it affects its victims?
Writer Andrew Solomon discusses his own struggle with depression and anxiety in this heavily viewed 2013 TED talk. He exclaims how grateful he is that he didn't live 50 years earlier when the available treatment was barbaric by our standards. But he also hopes that 50 years from now, those with brain disorders will be happy that they didn't live in our day because our treatments will seem barbaric by their standards.
While suffering from depression, Solomon says that you know that your response "is ridiculous while you are experiencing it." You know that others readily deal every day with the factors that discombobulate you, and that it's no big deal to them. "And yet," he exclaims, "you are nonetheless in its grip and you are unable to figure out any way around it." He says that the opposite of depression is not happiness, but vitality. Those grappling with major depression feel their vitality drain away. It hurts to think that my son has grappled with this kind of thing for years.
During the four hours we spent at the ER, there was a lot of waiting. They dressed my son's wounds and gave him a tetanus shot. He spoke privately with a physician. They took a lot of blood for a whole battery of tests, mainly to ensure that any outstanding medical issues were addressed before sending my son to an in-patient psychiatric care unit. It takes time to process all of that stuff.
Finally, my son spoke via a teleconferencing device with a mental health social worker, who ended up making all of the patient transfer arrangements. The closest psychiatric unit with availability was 45 minutes away by ambulance. Pretty much everyone involved in the system knows that mental healthcare needs are dramatically under-served in our area.
We chatted during the periods of waiting. I read to my son from a book I had on my Kindle. Another son dropped by with some fast food. He shared some videos on his phone. My son calmed down and felt that the crisis might be past. But the healthcare professionals felt that it would be best for his safety and their legal responsibility for him to get in-patient care for a few days. I completely agreed.
As he rode away in an ambulance, I reflected on the anxiety from which my son suffers, which was actually the proximate cause of this self-injury episode. In his TED talk, Andrew Solomon says that the difficulty of clinical depression did not prepare him for the onset of acute anxiety. "If you told me that I'd have to be depressed for the next month," says Solomon, "I would say, 'As long as I know it'll be over in November, I can do it.' But if you said to me, 'You have to have acute anxiety for the next month,' I would rather slit my wrist than go through it."
As he rode away in an ambulance, I reflected on the anxiety from which my son suffers, which was actually the proximate cause of this self-injury episode. In his TED talk, Andrew Solomon says that the difficulty of clinical depression did not prepare him for the onset of acute anxiety. "If you told me that I'd have to be depressed for the next month," says Solomon, "I would say, 'As long as I know it'll be over in November, I can do it.' But if you said to me, 'You have to have acute anxiety for the next month,' I would rather slit my wrist than go through it."
Solomon describes acute anxiety as being "like that feeling you have if you're walking and slip or trip, and the ground is rushing up at you, but instead of lasting half a second the way that does, it lasted for six months. It's a sensation of being afraid all the time but not even knowing what it is that you're afraid of."
His struggle with acute anxiety caused Solomon "to think that it was just too painful to be alive, and that the only reason not to kill oneself was so as not to hurt other people." It has long been known that those who attempt suicide do so mainly because they feel that they are out of options and have no hope of things ever getting better. It's not that they actually want to die. Researchers also know that many sufferers endure the pain partially due to thoughts of how their death would affect their loved ones.
His struggle with acute anxiety caused Solomon "to think that it was just too painful to be alive, and that the only reason not to kill oneself was so as not to hurt other people." It has long been known that those who attempt suicide do so mainly because they feel that they are out of options and have no hope of things ever getting better. It's not that they actually want to die. Researchers also know that many sufferers endure the pain partially due to thoughts of how their death would affect their loved ones.
Perhaps these grim descriptions can help those who don't personally grapple with depression and/or anxiety to understand a little better those who do. Perhaps understanding these issues as malfunctioning brain tissue can help drive a little compassion, and maybe even better research and treatment.
My son didn't ask to have Autism, or the kind of depression and anxiety described by Andrew Solomon. His suicide attempt is not a moral failing. It's an unhealthy attempt to address overwhelming psychological pain caused by communication malfunctions in his brain.
And yet, we need him to be safe. Tolerance of self-harm would be a twisted form of empathy. So I am glad my son went to the hospital, even if our daily visits during the strictly limited one-hour visiting time require a nearly three-hour round trip. Still, I can't help but wonder if there isn't a better way.
Solomon has traveled the world interviewing people who have or who treat these brain disorders. In doing so, he has seen a very broad variety of treatment approaches that have been successful for various people. In one humorous exchange, Solomon tells of a Rwandan who describes Western mental health practitioners who came to the country after the genocide.
"They would do this bizarre thing," said the Rwandan, "where they didn't take people out in the sunshine where you begin to feel better. They didn't include drumming or music to get the people's blood going. They didn't involve the whole community. They didn't externalize the depression as an invasive spirit. Instead what they did was they took people one at a time into dingy little rooms and had them talk for an hour about bad things that had happened to them. We had to ask them to leave the country."
Too often I have defined my son's condition in terms of how it affects me. Sometimes I audibly tell myself, "He's not giving you a hard time. He's having a hard time." That doesn't mean that it's not incredibly challenging to deal with the occasions where he lashes out at others, or when he tries to manipulate others in a desperate attempt to control his environment when he's feeling out of control.
Researchers say that most people who have these types of brain disorders get little or no treatment for them. Undertreatment is especially pronounced among the poor, who tend to accept their condition as endemic to their miserable life situation. Our son is one of the lucky ones who has received psychiatric and psychological treatment for years. But he is also among the massive number of those discussed by Thomas Insel and Andrew Solomon for whom treatment has so far been inadequate.
It's difficult to meet with any psychiatrist in our area. We love our son's therapist, but like pretty much all therapists in our area, his schedule is overloaded. And frankly, I'm not sure if even daily visits with professionals of this nature would fully address our son's conditions. That's why Dr. Insel's discussion about changing terminology so that we can improve the culture, the research, and the treatment surrounding these diseases appeals so strongly to me.
Since this isn't our first rodeo with in-patient psychiatric treatment, we won't walk around on eggshells when our son returns from the hospital, as much as we did the previous times. We will work to integrate him into normal life as much as possible. We will continue to work to get him the best treatment we can. And we will deal with whatever comes. After all, we love him.
