I was sitting in a doctor’s office the other day waiting for my appointment. It was one of those large practices whose offices often mimic in décor something more suited for LA or Miami Beach; and more often than not include assistant staff that have no idea how to handle the kind of patients they are seeing. The doctor’s office was a practice full of therapists, MSWs, and the occasional alternative medicine expert. It was another of the millions of doctors offices I have been to in my desire to control this disease.
Sitting in the large waiting room was a mother and her child. I could tell without even listening that the mother was struggling; but unfortunately for the mother her child was loud enough for everyone to hear. Her child wasn’t being disrespectful or mean; they were simply being mentally ill. The child was rocking back and forth, talking first about some story his mother had read and then talking about obscure references I assume only his mother understood. The child desperately wanted to walk around to speak to the rest of us sitting in that room but his mother was just as desperately trying to prevent him from disturbing us. Seeing as we were sitting in a mental health reception area it was probably a smart move.
What I remember from the experience was not the child; he didn’t bother me and he wouldn’t have bothered me if he decided to talk to me. It was the mother I remember. I can remember the lines of stress that seemed deeply marked by experience, the frustration of trying to control a child whose brain was not like others, and her posture that made me think that she was simply exhausted. I can’t imagine her life but no loving mother – and she was one – deserves to be that exhausted.
That memory is one that I have seen too often. Mothers almost beaten from the constant work their child requires. They seem to love their children but there is still something almost defeated about them all the same. It makes me sad, and if I could get away with it I would have walked over to that mother, given her a hard hug, and let her know that she was doing a wonderful job. But that wasn’t my place and she didn’t need me to recognize her.
But it illustrates a point that I don’t think most people can recognize. The point? If you are not mentally ill you can not understand the disease. You can’t empathize, sympathize, pity or in any way come up with ideas to make it better. It doesn’t work this way; it never has and it never will. One could posit that the single reason most of us with mental illness are treated so poorly is because it is impossible for anyone else – without these diseases – to understand the stage we are required to perform on each and every moment of the day.
Doctors who sit in their sterile offices with prints of ridiculous objects eight hours a day, listening to their patients seven days a week, three hundred sixty five days a year don’t understand. Listening to stories from patients does not make you an expert on mental illness – it doesn’t even make you a student of the diseases. The chemist sitting in a lab concocting complex medications for those of us with mental illness can not understand the disease. They can’t even understand why there are times when their wonder drug works and why it sometimes doesn’t. The brain surgeon won’t ever get it. Even the mother who is forced to love a difficult child with these diseases can not claim to be an expert. They have never felt a mental illness. They have never seen a mental illness in its true form. And there is no possibility to allow them to feel if even for a moment what the fight really costs.
I would argue that many diseases are this way; but I would also argue that for those of us with mental illness there are times when this chasm is wider than any history has ever seen. There is no in between; you either have the disease or you have no idea. And until people recognize this, until people come to terms with diseases and emotions that they have no comprehension of, those of us with mental illness will continue to be the ones to suffer the most.
How do you really explain that first time you heard a voice in your head? When despite the fact you instinctively knew that the voice was part of you, you still looked around hoping someone was whispering close to you. How do you explain the darkness and the comfort knowing that because of that darkness you aren’t required to perform? How do you explain that sometimes the darkness is a ready excuse to not have to live that day? How do you explain those insidious voices that sound just like you that consistently and constantly whisper how worthless you are? How do you explain the times you don’t want to kill yourself but your own brain is betraying you and driving you to it? How do you explain the highs when you can literally believe that you can change the world and the times when the rain closes in so that dancing in that rain becomes your only option? How do you explain the irrational to those who only know rational? How do you explain the complete normalcy and even the complete cognizant decision to be for even a second someone you have never been before?
I have been writing on this blog for three years and have even written a book about mental illness and still even those closest to me don’t understand. They don’t understand why I hate food. They don’t understand why there are nights when I have to fall asleep early because there is no other choice. They don’t understand why there are times I take my children out and do something spontaneous and even a little strange. They don’t understand my desperate need to find the answers to who and what I am not in a quest to be better but in a quest to figure out the story of my own mind. They don’t understand what my darkness feels like, what the sun does on a bad day, what the highs feel like, the happiness so out of control that the only thing to do is try and keep up. They can’t understand; they will never understand. They don’t have my disease.
Even those of us with mental illness can’t predict or understand most of what the person next to us with the same disease is going to do. We can’t understand because it isn’t our disease. We have different backgrounds, triggers, desires, needs, and a host of other differences that make it impossible to understand why my cocktail of medications don’t work on anyone else, for example.
These misunderstandings lead to discrimination from those who don’t understand. These misunderstandings lead to parents giving up on their children and husbands walking away from their wives. These misunderstandings cause gentle people to fear, and for ideas such as the extermination of all those with these diseases to be classified as if not normal, at least not as horrible as it could be (see Nazi Germany for this one). It allows for ideas of isolation, for straps tying a person to beds, and for the drilling of someone’s brain to seem like a viable option.
There is an old saying about history – if we don’t learn from it we are destined to repeat it. But while many believe it is important to learn about mental illness, I often wonder if it is possible. While many believe that there is a cure for a disease residing in the brains of millions of people, I don’t honestly think it is possible – certainly not when we can’t even understand the underlining causes of the disease.
Those with mental illness are people; there is no doubt about that. And we absolutely should be treated as people – functioning, productive members of this society. But it doesn’t work that way often; not because of scars on our face, missing limbs, or even our purple hair. But because no matter how much someone cares, if they don’t have a mental illness their ability to understand and eventually comes to terms with the different realities is simply impossible. And where there is impossible, there is amazing amounts of shear and unadulterated fear.