"My name is Todd Johnson. I'm a 28-year old resident of Kansas. The past 7 years of my life have been pure enjoyment. I have just completed my first year of medical school."
Todd is a straight-A pre-med student. When he is not studying, he volunteers at a local hospital. He is an accomplished musician, a friend to his brother, a joy to his parents—in love with life.
"Every day for the past several years there has not been a day that I have not experienced joy for almost every minute."
His parents could not be happier. "I think Todd has taught us how to live life by seeing the joyful side of things, and just thoroughly enjoying life," says his mother, Roberta Johnson.
But just a few short years ago the Johnson family was in the depths of despair. Todd was mentally ill, depressed, virtually immobilized, and unable to attend to even the simplest of tasks. Todd and his family did not know it at the time, but they would eventually find out that he was suffering from one of the worst cases of Obsessive Compulsive Disorder (OCD) that doctors had ever seen.
"He couldn't talk. He did not perform any of the daily functions that most of us see as routine. It would take him an hour to get from one place to another – something that would take most of us ten seconds," explains his father, Keith Johnson.
Keith and Roberta have home videos that show a teenage Todd spending forty-five minutes just tying his shoes; or walking ever so slowly with tiny, unsure steps; or taking several minutes just to get one forkful of food up to his mouth at dinner.
"Years ago, I was suffering from a severe form of OCD," explains Todd. "Life was not nearly as enjoyable as it is now. Every day of my life was filled with so many rituals and compulsions that it was impossible to count all of them."
"He would be going through his closet, putting on one shirt in the morning, trying on another one, and numerous other rituals too, that really brought things to a standstill," recall his parents.
OCD ravaged Todd's life—and plunged his puzzled, desperate parents into despair--just as he was entering junior high school. Todd had been a happy, fun-loving boy, a good student, and a young musician full of promise—until the OCD struck.
With tears in their eyes, his parents recall the utter hopelessness that they felt. "It was heartbreaking, it was devastating, to see this child who was so capable and so loving and joyful change so completely," they remember. "Just to see him become so frustrated that he couldn't do the things he could do before -- and for us, when the music stopped at home, that was really difficult."
There was no music. Paralyzed by the disease and profoundly depressed--slitting his wrist in a call for help –Todd's weight dropped to just 95 pounds.
Rich Marsland, RN, is a Cognitive Behavioral Therapist at Butler Hospital in Providence, Rhode Island. "I don't think he had eaten solid food for two years, and his parents were basically keeping him alive by pouring seven cans of Ensure down his throat every day."
Says Todd, "At the lowest point, I didn't have any energy left to do anything for myself. I would be in bed the majority of the day…it was like a process of sort of wasting away."
Todd's distraught and desperate parents fruitlessly sought help from doctors and therapists in Kansas and across the country. The darkest days came when doctors finally urged them to institutionalize Todd for the rest of his life.
"They told us we might as well just make him a ward of the state, and put him in an institution because they didn't think he would ever get well," says Roberta. "That of course was naturally devastating to us, but we weren't ready to give up on Todd. We kept searching for the right kind of help."
That desperate, exhaustive search finally led the Johnsons over 1200 miles from home to Butler Hospital, a Brown Medical School teaching hospital specializing in psychiatric and substance abuse disorders in Providence, Rhode Island--and to Dr. Steven Rasmussen, the hospital's medical director, and Rich Marsland—both experts on Obsessive Compulsive Disorder. Todd spent many days in therapy at Rich's farm.
"At first he couldn't do anything for himself," recalls Rich, "and then slowly, by pushing himself and challenging himself, you could see a little improvement." The improvement was achieved slowly through medication, behavioral therapy and counseling, coupled with two gamma-knife surgeries.
"For most of these patients, we see that their anxiety and the urge to do the compulsions drops away about 3-6 months after the surgery, and then they gradually begin to recover a variety of different functions that have been impaired prior to the surgery," explains Dr. Rasmussen.
Todd remembers that when they arrived at the OCD clinic at Butler Hospital they knew they had finally come across experts who could help them. His parents felt like they had finally "found a home" after being lost for so long. They knew they had finally found the "place they needed to be."
"Butler was the first place where we sought treatment that they had the knowledge and the expertise and the compassion to live and work with Todd and to help him gain strength and control over his OCD," say Roberta and Keith. "It wasn't just the staff and the nursing unit—it was the entire hospital—everybody encouraged and supported him. It was an amazing place."
The Obsessive-Compulsive Disorders Clinic at Butler is affiliated with Brown Medical School and is recognized worldwide for its research into, and treatment of, OCD like Todd's, that has failed to respond to traditional forms of treatment. He was the first patient in the United States to combine talking therapy with Gamma Capsulotomy. This high-tech procedure allows doctors to target and remove very tiny structures deep in the brain. Todd's second gamma knife surgery and continuing course of behavioral treatment produced positive results—but, just as important, the young patient found a special kind of caring at Butler.
Todd recalls that the time he spent at Butler Hospital was "a godsend." He had never met a group of people who seemed so genuinely interested in helping him get well. Everyone seemed to have his best interests at heart, from the doctors and nurses, to the chef, to the buildings and grounds people. They were all interested in helping him overcome his problems.
The help he and his family found at Butler launched Todd on the road to a new and exciting life. Todd, who'd been forced to leave school when he was ill, soon earned his G.E.D., and then enrolled at Omaha's Creighton University, where he won superior grades and new friends. He enjoys a newfound relationship with his brother and parents, and he's re-discovered his beloved music. The same fingers that were once bound by repetitive rituals now seem to float effortlessly over the keys of his piano.
"With the help of Dr. Steve Rasmussen and Rich Marsland, he was able to that. He is now the young man we always hoped he would be if he could overcome his OCD," his parents proclaim. "About 10 years ago, we didn't have a life, and we didn't think we would ever have a normal life. But with all the brilliant people at Butler, and all the help we received at Butler, it's given Todd a life, and it's also given our life back to us."
Dr. Rasmussen, in thinking about Todd, says, "The person who achieved climbing Everest while he was blind -- Todd's recovery to me is almost in that same kind of league—of someone who faced incredible odds and turned it into incredible success. He and his family are pioneers. Fifty-five percent of severely ill patients who have not responded to any other form of treatment are now significantly improved with regard to symptoms and quality of life."
Todd and his family worked tirelessly to achieve his remarkable recovery. But they say much of the credit goes to Butler Hospital.
"I could never possibly forget everyone at Butler—every time that I go back there it seems to exude this atmosphere of healing," explains Todd.
With Todd's future secure, the Johnsons now have a new and important goal, to reach out and help other people and families affected by OCD to get their lives back.