Vol 16: The Enemy Within
Every parent has a dream for their child. Some have intricate plans of what schools they should attend and what career they should choose. Others are less rigid, focusing more on the type of person they will develop into and the hope that they can find happiness along the way. The patient highlighted in today’s report is the mother of three children and her dreams for her second child, her only son, were shattered when he was diagnosed with paranoid schizophrenia at the age of 20.
As a child he loved to read and play with marbles, toy cars, trucks and trains. He was also an incredibly gifted basketball player, went to basketball camp and was being watched by local and international coaches for his high potential to make it to the NBA. After successful junior and senior seasons on the court, however, his behavior slowly started to change and in grade 12 he began exhibiting small behavioral problems. His grades slipped, he was less attentive in class, paid less attention to grooming, he wasn’t playing ball as well as he used to and he had a lot of difficulty focusing. Because of that he never did receive a scholarship for college and instead went to work in the shipping industry.
By that time his symptoms progressed and his parents noticed that he started talking to himself, he preferred to be alone and became easily agitated. Then one day while relaxing at home, his parents were startled by the sound of large rocks being hurled through every window in the house. By the time they got him to stop, every glass was broken. He was taken to Sandilands for an evaluation, diagnosed and immediately placed on a cocktail of anti-psychotic medications.
He is now 40 years old and over the past 20 years he’s been in and out of Sandilands more times than anyone can remember. My patient says that sadly, many family members and loved ones abandoned them because of the stigma associated with mental illness. It left them stranded and suffering alone in silence behind closed doors for many years.
When retelling her story, she began to cry because the pain is ever-present. She mourns for what could have been. The ordeal has taken a mammoth emotional and physical toll on the entire family. During a particularly bad schizophrenic state, my patient’s son broke down his parents’ bedroom door and attacked them with a knife and a conch beater. His father sustained a deep laceration to his face during the fight, which required a visit to the emergency room and multiple stitches. During the one-hour long nightmare, no amount of yelling or screaming helped. He didn’t recognize them or even recalled who he was at the time.
It was then that she realized that the son she loved so desperately, though physically in front of her, was gone and she mourns his loss to this day. Even when he’s on his meds and is able to work and function, he is not a grown-up version of the child she once knew. He is someone else, an enemy, locked within a body that she once thought was her son. Deep down she recognizes that lost somewhere inside is the person that she gave birth to, but she no longer knows who that person is and loses hope with each passing day that she’ll ever see him again.
She wishes that he had any other sickness than this and the heart-break that she feels is almost all-consuming. From that day forward she’s lived in a constant state of protection, always alert, watching and listening and ready to call the police if needed. The police have advised her and her husband to put bars on their bedroom door but they’ve so far refused to do so because they already feel like they live in a prison and doing so would simply confirm their fears and amplify their anxiety. Others have pressured them to put their son out of the home but they fear that under no supervision his episodes will worsen and he could end up killing someone.
Dr. E. Fuller Torrey, one of the world’s leading research psychiatrists specializing in schizophrenia and bipolar disorder, recounts the desperate measures that many families years ago took to cure their loved ones of this condition. He believes that Rosemary Kennedy, sister of former US president John F. Kennedy, suffered with schizophrenia and was lobotomized in 1941 in hope that it may cure her. The procedure did just the opposite, however, and unfortunately left her mentally incapacitated, barely able to speak or walk, incontinent and functioning below a grade three level for the remainder of her life. Her situation is widely believed to be one of the main factors that inspired her sister, Eunice Kennedy Shriver, to start the Special Olympics in 1962.
Living with a child with mental illness is a roller coaster that you never disengage. Nor with schizophrenia can you predict or prepare when it will begin to show in a child’s life, though most research findings show the average age of onset is about the same as my patient’s son, late teens to 20. One thing they have learned is their son’s episodes are more frequent when he starts smoking either cigarettes or marijuana.
When he was first diagnosed, his parents had more stamina to cope with each crisis but with their advancing age, his psychiatric impairment has taken a tremendous toll on their health. They now suffer with high blood pressure, high cholesterol and are both borderline Diabetic.
The process to have him evaluated is also a tortuous experience. They have to physically restrain him for over an hour until the police arrive and then the police escort them to the Princess Margaret Hospital where they wait in a private room with him until he’s examined by a physician. Then and only then is he allowed to be transferred to Sandilands. The process is painstakingly long and exhausting. They worry about how much longer they can cope. If there is the tiniest sliver of sunshine, it is that they have started eating healthier and exercising, but even that is being driven by the fear that if they die soon, the burden will pass onto their two daughters.
Other than a distant grand-uncle, who’s in a mental hospital in the US, there are no other family members who have a mental illness and my patient’s son does not have any other medical issues. He himself has an 18-year-old son who started displaying behavioral problems after he and his mother lost everything during Hurricane Dorian in Abaco.
The message my patient is most keen to share from her story is that families with a loved one suffering from mental illness are not alone. She encourages them to seek help because you become a part of a community of shared suffering, which in turn breeds a sense of fortified resilience.
The patient and her husband have joined a family-friend circle at Sandilands and the family group at the Discovery Clinic and she describes both as their saving grace. Being among others who suffer the same or similar circumstances is helping them to open up about the secret pain that they’ve endured for so long. They are now able to talk to church members and neighbors, releasing and easing their stress. They’ve also learned coping mechanisms like not to engage with him during one of his episodes.
While that means in some ways distancing themselves from his struggles, it is allowing them, after 20 years of battling an enemy that they cannot see, to finally resume their lives and find what happiness lies ahead.
This is The KDK Report.
