Crazy by Whose Standard?

by Chantal Sicile-Kira

When my son was a baby, I knew there was something wrong with him, that he was not developing properly. I could place him in a sitting position and he wouldn't move or attempt to get a toy further out of his reach. I was concerned that I could get a whole afternoon's worth of pre-production done with Jeremy sitting in the same spot. Voicing these concerns to various friends and family members, including my husband, I would be told 'Be happy he is so calm and you can get your work done. Maybe he takes after Daniel's side of the family. Not everyone has to be as hyper as you!'

Now, I didn't really buy into that. I felt like the little boy in the fairy tale about the Emperor and his invisible clothes, where he is the only one to verbalize that the Emperor was actually wearing no clothes. However, I began to wonder if there was something wrong with me as well. Having spent some years working with severely autistic adolescents at a state hospital, and then six months with abused children in a holding facility while it was being decided their fate, who was I to know what normal child development was? I began to feel like the medical students who catch the different aliments they are studying about.

I decided to see a therapist. I had never been in therapy before, or visited a therapist for myself, although I had sat in many meetings with a myriad of psychiatrists, psychologists and social workers who were my colleagues in the helping profession in California. My intent was to figure out if I was really crazy or not, thinking my son was not developing properly when everyone else seemed to think he was. It was not my intent to start a 10 year psychoanalysis a la Woody Allen. This being France, however, psychoanalysis still reigned as the favored therapy of the day, and so I ended up with a therapist with a psychoanalytical bent.

Although my concerns with finding the right therapist had more to do with finding the therapist with the right psychological training and philosophy, I hadn't given the cultural difference a thought. I mean, I was bilingual and bi-cultural, right? Usually when I spoke French I acted French, and when I spoke American, I acted American. However, I hadn't counted on the subconscious workings of the brain and the differences in reaction to situations as being considered normal in one country and not in another.

I looked forward to my weekly therapy sessions as I liked the therapist and felt comfortable with her. In the first few sessions I explained what brought me to her and managed to use up a fair amount of Kleenex. She kept asking why I thought my son was different and why I thought no one else seemed to notice it. I spent much time explaining that if he was really developing slowly and differently, I was OK with that, I just wanted it acknowledged so we could move forward with what to do about it. Because if no one acknowledged his delay, there could be no plan of action.

If you don't acknowledge a problem, then you don't have to deal with it. This comes in handy particularly when dealing with a condition such as autism in a very young child. If you don't name it you don't have to deal with it, you can just tell the parents to come back in six months because perhaps he'll grow out of it.

Before having my son, I had little experience with the medical systems as a consumer. Everyone in my family had been healthy and I remember being treated a few times in emergency rooms for a sprained ankle or the like. After moving to France, I became familiar with some of the cultural differences in the medical delivery systems. However, it was not till a year after starting therapy with the French psychoanalyst, that I understood the cultural differences in regards to the doctor patient relationship and the patient's rights.

During the 9 month period that I saw my therapist, I was finally able to convince my son's pediatrician to order a battery of tests to see why my son was not developing normally. I had convinced him tests were in order by inviting him to my son's first birthday party where it was obvious that my son was not on the same wave length nor developmental level as the other one year olds there.

My son's pediatrician sent us to a very reputable hospital for tests. We spent most of the day there where he underwent many different assessments and tests. Blood was drawn, urine was taken. We were told the written results would be ready in about a month. Five weeks came and went, then six weeks. I finally called Jeremy's pediatrician who said he had not received the results and promised to follow up. Another two weeks went by, excruciating when you are hoping to get information that you hope will help you with developing a treatment plan for your loved one. Still nothing. Finally I contacted the hospital directly and after more days I was told that my son's urine and blood results had been lost, thus the reason for the lack of a written report.

During this period, I was seeing my therapist weekly. I told her about my waiting and my impatience and disappointment about not yet having received the results of the assessment. "Do you think they are hiding something from you and that is why you don't have a report?" she asked the first few times I brought up my concerns. "No, I may be neurotic but I'm not paranoid," I would reply.

The week I went to my therapy session and told her the lab results had been lost, she asked me "How does that make you feel?" "Frustrated at the lost time, pissed off about the incompetence, but basically sometimes these things happen in labs and unfortunately this time it is happening to us," I replied. "Don't you think they may just not want to give you bad news, they are just putting off telling you that there is something wrong?," she asked. At this point of living in Paris, I still had my American sensibility and and logic working and I said, "but why wouldn't they want to tell me? It is just confirming what I already know, and if I know we can discuss how to move forward. Even bad news is good news at this point."

Little did I know that my reply which would have made perfect sense in America and would have convinced any therapist that I was a neurotypical person with no delusions, had, by French cultural standards, just proven that I was crazy. It would be a year before I finally understood the difference. A normal French reply would have been "Of course there is something wrong! That's why they won't tell me and it must be really bad if they 'lost' the blood tests! And they probably won't tell me because there is nothing they can do about what he has, c'est la vie!"

Eventually I managed to talk to the head of the department at the hospital to insist on more tests pronto and the rest of the assessment on my son. "Madame," he haughtily replied, "I have nothing to say to you, you must speak to your doctor as he is the only one who will get information from me and he can decided what you need to know." When I confronted Jeremy's pediatrician, he hemmed and hawed and explained about Jeremy being developmentally delayed with 'troubles de comportment' – 'behavior problems', the French euphemism for autism, the 'A' word no one like to use. And of course, there was nothing I could do about it.

It was a year later when I was working as a line producer on a French-American production of a soap opera that I realized the difference between the American and French attitude towards patient's rights. I was responsible for supervising the hair, make-up and wardrobe departments. The head of hair and make-up, Julie, was having a difficult time because her mother had been ill for some time was in hospital. From time to time I would ask her about her mother 'What's the prognosis for your mother, Julie?" "I don't know." "Well, what do the doctor's say?" "Nothing, they haven't told us." "What does she have, Julie?" "I don't know, but I think it's cancer." "Why do you think that," I would inquire. "What do you mean you don't know, haven't the doctors told you?" "No, they don't have to tell us unless they want to." This is where I learned that it was up to the doctor's discretion whether or not to share with the patient the extent of his medical problems. The doctor could decided whether or not the patient was able to handle the information and decide how much to tell them, and they were under no obligation to tell the family. Again, it was up the doctor's discretion. That's when it dawned on me that my French aunt's behavior and thinking was perfectly normal.

Living in Paris gave me the opportunity to get to know my French relatives. My aunt, my father's sister, spent her time between her small apartment in Paris and her house in a little town in Sancerre. I really liked her, but she had one quirk that didn't seem to go along with the rest of her tough as nails mentality – when she was feeling ill or had a little medical concern, she would say "ça y est, j'ai un cancer" "That's it, I know I have cancer." She was always convinced that she had cancer, but that the doctors wouldn't tell her. I thought she was being a hypochondriac and a bit paranoid, but I put it down to having lost her first husband to cancer. One fall day she called me saying she was very worried and heading out to her doctor out in the country because she had seen reflected in the mirror what looked like a brown spot on her back that hadn't been there before, so she was going off to be tested for skin cancer. She called me back that evening, very embarrassed, the brown spot turned out to be a dried leaf that got into her clothes and stuck to her when she had been out raking up the fallen leaves in her yard.

My aunt would go to see the doctor with concerns that she had and when she was told to go home, that it was nothing serious, she would never believe them. "Je sais que j'ai un cancer mais il ne veux pas me le dire." "I know I have cancer they just don't want to tell me." I just put it down to old age although this was the only sign of dementia shoe showed. It bothered me because this aunt seemed really tough as nails and 'with it' in all the other areas of her life. But when it came to her health she was getting to be like her mother, my grandmother who lived in the 11eme arrondisement in Paris, in the same apartment my father grew up in. My grandmother was 95 and was old, but she was as sharp as nails. The only peculiar feature she had besides her acidic tongue, was that she hoarded sugar and toilet paper, and hid 20 franc bills in various places in her apartment because she feared the Germans were going to come back and invade Paris at any given moment. She even has plans for how the tenants in the building was once again going to hide her neighbors, Russian Jews, from the Nazi as they did the first time round that the Nazis invaded Paris.

But in reality, my aunt's belief that she had cancer but the doctors weren't going to tell her was a well-founded and culturally –entrenched fear shared by most French people for good reason. And a normal one at that.

In the end the therapist must have thought I needed years more of therapy to be cured and that I stopped therapy way too soon. I remember going back to her, a year later, to tell her what was going with my son and that finally I understood the French medical system. "Madame, I have discovered the cultural difference between my American way of thinking and the French system," I told her. "You thought if I was well and mentally healthy, my normal reaction would be to be paranoid and suspect the worst since results were lost and no-one wanted to share information with me, the mother of the patient. However, in America we wouldn't not be paranoid because as patients we have a right to our medical records and doctors have an obligation to share information with us, and so there is no reason to hide anything. And since we know what the medical problem is, we can do something about it." "Ah bon," she replied, "so all Americans are delusional and therefore mentally ill, then?" "Yes," I replied, "But it's the norm, so we don't need therapy."