After Ben was diagnosed with Schwartz-Jampel syndrome, my world began falling apart. I don’t think it was just because of the diagnosis, I think part of it was the uncertainty of what he and all of us would be facing. Up until May 2003, I had become as expert as possible on Marfan, Ehlers-Danlos, and Stickler syndromes, the three major diagnoses doctors had considered for Ben. SJS came out of the blue–and what was worse, very little was known about it. How was I going to become an expert?<\/p>\n
In July 2003, as I was spiralling downward, I self-administered the Beck Depression Inventory<\/a>, and was shocked that I scored in the severe range. I’ll never be able to fully describe the cloud, the fog, the fear, the anger, the despair that comprises depression<\/a>. But I thought, “I have a PhD in psychology, I know what to do”. Of course I didn’t. I went to my primary care provider, who prescribed Lexapro–which had recently come on the market–but she knew of NO psychologists or clinical social workers to refer me to. My countless calls to unknown therapists resulted in zilch. I finally found a psychoanalyst through a friend, but after 6 months of seeing her, I realized I didn’t have 5 years to figure out a solution to my problem. The psychoanalyst had sent me to a psychiatrist to get my medication right, and it was this doctor, being one of the few psychiatrists who actually engage in cognitive-behavioral therapy <\/a>,who finally helped me reach recovery. And he helped wean me off Lexapro, which had stopped my rage, despair and anger, but had left me in a near-zombie like state.<\/p>\n