Writing Away the Stigma: ‘I refuse to accept that I’ve lost my intimate life partner’
Nine people shared stories of their mental illness in Pittsburgh in May as part of a Creative Nonfiction Magazine project to fight the shame and embarrassment that often accompany the illness, which is estimated to affect one in five Americans each year. The Tribune-Review printed excerpts from some of the essays May 31 and has published full versions of six of them online.
We arrive at the hospital in January 2006. My husband Alan is scheduled for a neurosurgical procedure. The moment is finally here. I’m hopeful but tired from caring for my husband. The first step will be to attach a metal skeletal frame which encloses his head and mounts to his skull with screws; this prevents movement during the daylong operation. Then, an MRI determines the target in the brain for the radiation therapy called “gamma knife capsulotomy.” This novel treatment has only fifty published cases — all at Brown University — and intends to interrupt my husband’s obsessive compulsive disorder symptoms.
The procedure is non-invasive. Instead of opening the skull, focused beams of radiation are delivered to a target on each side of the brain, creating a speed bump disrupting the intrusive OCD thoughts. Alan’s OCD is skin picking. He forgoes eating and sleeping to tend wounds he has picked or seeking to smooth rough places on his body. I refuse to accept that I’ve lost my intimate life partner to OCD.
I wait in the waiting room with his psychiatrist. The wait seems very long. The surgeon comes out and assures us that although the first target took longer than expected, the second one wouldn’t. I’m allowed to visit him in between treatments.
Alan reports, “Chuck was here borrowing money and I have to pay him for the snake.” I wonder what they’ve done to his brain; nothing makes any sense. The neurosurgeon says it’s from the sedative.
He’s kept overnight for observation. When we’re reunited, he’s hungry and asking for sandwiches, inquiring, “When will I have the procedure?” I’m amazed and optimistic. He’s discharged the next morning. Now we wait to see if the therapy will work, which may take eight months for the brain to begin to re-wire itself.
Capsulotomies are novel therapies, and it was difficult to find a surgeon willing to perform one due to psychosurgery’s history. Until the 1970s, lobotomies were commonplace if you lived in an institution; now, ethics communities almost invariably won’t allow it in any circumstance. Back then they were performed without anesthesia by psychiatrists. This entailed crudely swishing an ice pick-like instrument inserted through the eye socket back and forth through the brain’s lobes, usually destroying the very person they sought to cure.
Today there are no asylums to speak of; seriously ill persons are usually left to their own defenses, or in our situation, with a wife to try to figure out what’s going on.
After Alan’s diagnosis in 2001, we found out there were no treatments. Skin-picking was not in the DSM — the Diagnostic Statistical Manual — which defines all mental disorders. If it’s not in the DSM it cannot be treated and hasn’t been studied.
For 12 years, Alan searched for flaws in his skin that may have needed correcting, using tools such as scissors or tweezers. I was overwhelmed watching his destructive behaviors, so I began reading medical journals and attending conferences. In 2004 I discovered the procedure being done at Brown.
Alan wasn’t leaving the house at that time and refused to travel for the surgery consult. He desperately told me, “You don’t understand — I will die if I leave the house.”
“Don’t worry, if you die I’ll be with you,” I responded.
We arrived at Butler, Brown University’s psychiatric hospital. It looked like an old asylum. No, it was an old asylum. We passed through a large gate, drove up to one of the Gothic Revival buildings and found our way to Dr. Rasmussen’s office; Dr. Grant was also present. They said that this procedure was for extremely ill persons. The doctors asked, “What would you do if we handcuffed you?” Alan became frantic. They were just testing him, but he thought they would do it. They explained possible prerequisite medications trials, and suggested habit reversal therapy. Alan’s treaters back home had already exhausted these suggestions. We left thinking we’d soon receive their decision.
Starting the drive back to Pittsburgh, I went to McDonald’s for coffee. The girl at the drive-thru window whispered, alarmed, “There’s a man behind your car!”
I responded, “Not to worry, that’s my husband.” He had gotten out to smoke, and was walking behind the car. At this stage of his illness he was indistinguishable from a street person — emaciated, no haircuts due to open wounds, his gait shuffling due to the psychiatric medications.
But I was still elated from our appointment; I had found help for us, hope for him.
Mim Schwartz, 61, lives in Regent Square. Her husband was diagnosed with obsessive-compulsive disorder.