Deborah's son, James, and her grandson, Sean Michael.
My son suffers from bio-neurological brain disorders. Without the right treatment and support, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders control his thoughts and his actions. His untreated symptoms also control our lives.
My son has schizophrenia, anosognosia (in laymen’s terms, "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD.
So what does all this translate into? A preventable tragedy that was almost impossible preventing.
What are our numbers? 1:6. That’s our family’s conservative ratio.
Now what does this ratio mean? It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him.
Our lives have been significantly affected by his untreated or treatment resistant medical illness. We live with constant emotional stress from the daily trauma and drama of his severe symptoms — including psychosis and crisis evaluation teams. We experience situational mental illness, like depression or PTSD, due to the hopelessness and isolation of caring for someone with a severe brain disorder when they're not being properly treated and their symptoms are not under control.
We've lost wages from jobs we've had to give up to care for our loved one and from having to move from one place to another due to stigma. We've missed chances of advancement at work and taken lower paying positions in order to be available to meet the needs of our son. We've faced family stress that could lead to divorce and further financial and mental decline of the entire family.
It means that my son’s illness has affected more than just him. It's also impacted his school system, our local sheriff’s department, the juvenile courts, and our relatives who helped provide financial aid to get him on the ‘fast track’ to treatment.
His illness dictated his and our lives — how we spent our time, our money, and our emotional resources. There was nothing left over for our needs. We were all consumed trying to save him, but we're among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment.
What was the cost for his intervention and treatment? Here is a start at some of our other numbers:
Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son.
Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him, and the stress of not being able to find timely treatment for him. I paid not only with money, but with my mental and physical health.
Probate Conservatorship: $6,000.
One month in a dual-diagnosis facility before his SSI started up: $6,000.
Qualified therapist who didn’t take insurance: $160.00 per hour once a week.
Equine therapy which worked the best from all the therapies we tried: $160.00 per session per week.
‘Fast Track' — by-passing the waiting list for medical recipients and getting into an outpatient treatment facility that held the most promising form of treatment but didn’t accept our insurance: $250.00 per appointment for two years until, finally, they accepted our son's Medi-Cal.
Blood monitor company: $150.00 per month. We’re going on our seventh year now.
Licensed nutritionalist: $120.00 per visit.
Independent blood test for mercury and other toxins: $180.00.
The list goes on and on. Our son's been in therapy since second grade to work with the behavior we were trying to deal with daily.
We spent and lost thousands of dollars. We have little retirement saved and my husband and I are 57. It was worth every penny and every sacrifice. When we look at and enjoy our son today, there's no price we can put on his life or on how close we all are now.
The problem is, why should we have to pay such a high price for medical treatment for our son? What about the families who don't have the resources we did to secure early intervention and compliance to treatment? What happens to them? What are their numbers? How much worth can you give to a life?
What if my son decides to be noncompliant in the future? What would our fate be then? All this affects and still concerns my whole family. My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted us.
What are your numbers?
There are no statistics that include family numbers in their studies. We're the ones they don’t know about or talk about. We're more invisible than the ones we advocate for. It’s up to us to unify and speak out in one voice for what we need — for our rights to get appropriate treatment for our loved one's medical condition.
It’s their illness but It affects us all.