I spent the first 30 years of my life thinking there was something very wrong with me, that I was either very stupid or slightly crazy. I was very good at taking tests. Exceptionally good at all kinds of logic, analysis, and synthesis. But I couldn't remember the name of the street I lived on, the name of the product I was working on, formulas (for example, my major was math, but I could never remember the quadratic formula. I derived it anew myself every time I needed it during a test or task! Same with all the geometry theorems.) and sometimes words just disappeared. I'd open my mouth, and nothing came out. Then I found out that I had a type of learning disability. I wasn't stupid or crazy at all. It had boundaries. I could take the "bent" parts and put them in a box. Once I defined the boundaries of that box, I could compensate.
I had told Jay about my discovery of how my mind worked, and how much it meant to me to know that the hiccups were not all-encompassing, that the rest worked better than fine. That got Jay thinking. He said that he thought maybe he had a problem, too.
He described it as a concentration/distraction thing. That when he was working on something that interested him, he tended to get into it so deeply that he'd forget time, food, everything. He'd get so deep that he'd forget the objective, and start going in circles. Like if you asked him to paint a stool, four hours later he'd be devising tests to determine the chemical composition of the paint, and the stool still wouldn't be painted. However, at the same time, he would be easily distracted by almost any little thing. That's why he had the TV on all the time. It blocked out all the minor distractions, but at the same time provided a constant low-level distraction that kept him from going too deeply "under". He said that when he was a child, he was always in trouble at school because he kept forgetting that he had to sit still, and he'd keep getting up to look at things in the room or out the window.
He and his ex had gone through like six or seven counselors, psychiatrists, and psychologists in the two years before they separated, so Jay was not averse to "head doctors". A few months after we were married, he was diagnosed as having Adult ADD, and he took Ritalin for a year. I saw a definite difference, but he didn't, so he quit. (Later, I discovered that if you don't have ADD and take Ritalin, it acts as a stimulant - what I had noticed as an improvement was increased energy.) So he still had no answers.
After we'd been married about 2 1/2 years, he said that he had another problem - he couldn't judge people's reactions. Logically, he could figure out what might make someone angry, but in practice, he never saw it coming. He'd ask me, how did you know that person was getting angry (before the actual outburst), and I'd say that I could see her eyebrows going down and her lips tightening. That mystified him. He couldn't pick up verbal clues, either. If you didn't actually laugh, or cry, or shout, he didn't know that you were amused, or sad, or angry. He'd come home from work all upset because someone had gotten angry at him, over time it had apparently built up to a confrontation, and he never saw it coming.
That may be one reason we got along so well. I have an unusually expressive face (gets me into trouble sometimes), but more, I don't hesitate to tell someone that something is bothering me. I give plenty of explicit warning.
I tried to find someone in the area who could give him a battery of tests to determine what was going on, but there wasn't anything. I guess I misjudged the state of the art. All the educational psychologists seemed to rely on anecdotes - that's how we ended up with the ADD diagnosis. (Also, I suspect that the doctor we saw had Ritalin for a hammer, so he saw everything as an ADD nail.)
Then when the tumor was discovered, that's when he finally got tested. Before and after his surgeries and during rehab, he was given cognitive and physical tests, so they could determine what had or had not been affected. In all of the many doctor's notes, he is described as presenting a "flat affect" - in other words, no animation. One of the doctors told me that they were shocked to find that, shown faces displaying various emotions, Jay could identify only the most blatant. He asked me if I was aware that my husband was high-functioning autistic. Possibly Asperger's Syndrome.
Neither the doctor nor I said anything to Jay about it, but somehow, somewhere, Jay found a description of Asperger's himself. He came running into the kitchen about six months after the first surgery, and said "I have Asperger's Syndrome!"
Early in the second year of fighting the tumor, he said that he had probably been depressed all his life. That he had never really felt a part of what was going on around him, probably because so much of it either went over his head or overwhelmed him to where he shut it out. (He was starting to build his own box, to put the bent pieces in.) So we went searching to find someone to whom he could talk about autism and depression, and who might perhaps treat it or teach him to cope with it. Jay had finally realized that he was a good whole person, with a small disability which was now in a box, and he wanted to experience life without the defenses he'd built up over the years. He was in a hurry to be opened.
It was a frustrating search. Every doctor simply assumed "of course you are depressed, you have a death sentence", and that's all they wanted to talk about - how he felt about his diagnosis, how he felt about dying. That isn't where he/we wanted to go at all! Jay was very positive about his treatments. He was convinced that he would beat it, right up until the end. He didn't want to talk about his death - he wanted to talk about his life! These doctors weren't helping at all. In the end, he was just put on an antidepressant, and that was that. It didn't do much. What he wanted to do was to learn how to experience life, to drop his armor. A pill wasn't going to change habits built up over a lifetime. He needed cognitive/behavioral therapy.
The diagnosis of autism explains a lot about him. He had a closet full of gorgeous birthday and Christmas gift sweaters that he never wore, because he "can't stand the feeling" on his arms. He flinched when anyone touched him lightly or without warning. He claimed he could see the flicker of fluourescent lights. Music confused him, especially vocal and instrumental mixed. He was oblivious to women flirting with him. The excessive concentration/distraction problem mentioned above. Obsessions. The way he would joke at inappropriate moments. He always tucked his shirts in, even T-shirts, because he couldn't handle them moving across his body. His excessive shyness. The way he would quickly form habits, and then get nervous when a habit was disrupted. Lots of stuff. A lot of it sounds like typical male behavior, but in Jay it went to extremes. I used to tell him he just had an excess of testosterone.
I hadn't realized until after he was gone how much I had adapted to his needs without even thinking about it. I quickly learned to touch him firmly, and warn before touching. I didn't play music when he was home. I'd check on him frequently when he was doing something at home, to keep him on track. We'd go over what he did at work each day, and talk about what was contributing to the objectives, and what was a side track he should not follow the next day. I ran interference for him in social situations. I clued him in when others were not likely to be receptive to puns. I was very specific about my own feelings, so he wouldn't be caught off guard.
With a few more years, Jay could have learned to compensate, we could have worked out a pattern, and he could have lived more fully. I wish we had gotten together sooner. It pleases me to think that I made him feel safe enough to look beyond the bars, to feel that he deserved more.
