Right To Be Well

Why do many advocates across Pennsylvania work so hard to see a change to the Mental Health Procedures Act of 1976 through common-sense, compassionate, timely assisted outpatient treatment (AOT) legislation such as HB 2186 and SB 251?

Part of the reason is that by looking at the outcomes and statistics found on the recent study of New York's Kendra's Law, which our AOT legislation is modeled after, we see that it reduces hospitalizations, homelessness, and incarceration.

But I think the most important reason is the impact that untreated mental illness has on the individual with the illness who may lack insight of their illness (a.k.a. anosognosia) and who must wait until they reach a level of "clear and present danger" as required under Pennsylvania's current law and the families who must wait, feeling frustrated and hopeless since they are not able to help until a very dangerous level is reached and treatment is finally provided.

I plan to periodically post real life stories from people who have a diagnosis of mental illness and from the families and friends who love them. The first is a story that was presented at the public hearing on HB 2186 on April 8, 2010, by a mother, Peggy M., whose son was denied timely treatment simply because he was unaware of the need to seek treatment on his own.

When my son Louie was little he was probably like most of your children---he was so cute and really comical and I may be partial but I think he grew up to be very handsome and STILL very comical. Louie’s friends even nicknamed him “Silly Louie”. In high school Louie loved the girls (which there was never a shortage of), he loved sports (which he excelled in), he loved playing guitar and singing (he was good at the guitar but the singing not so great), and he was also EXTREMELY intelligent.

I used to wonder, like a lot of parents, what he would grow up to be. To me he was the full package…he had the looks, the brains and a wonderful personality to go with it. I thought he could grow up to be just about anything he wanted to be. Maybe he would be a doctor, or a lawyer, who knew because the possibilities were endless. Louie went to college and then met his soon to be wife Jennifer and they had two beautiful children, Zane and Zoe. He joined the army and became part of the 82nd airborne division. Louie wanted to make a career out of the army like his uncle in the Delta Force who he respected and looked up to. He was promoted quickly because of his intelligence and he held a position with a high security clearance. But after a knee injury and then surgery he re-injured his knee again in a parachute jump and his military dreams were ended.

They say that if you have an underlying mental illness that has not shown up yet that “stress” can bring it to the surface. I believe that is what happened to Louie. Within a short period of time Louie lost his dream of a military career, his grandfather who he was VERY close to died, and his marriage was on shaky grounds. He started acting bizarre and became very paranoid. The family was very concerned and we asked for help. You see Louie didn’t feel that he was acting any differently and thought “we” were the ones being paranoid.

We knew nothing about mental illness, only because we had no reason to, but we thought we would just tell the doctors what was happening and they would take him to the hospital and make him better. Well we were shocked when they told us he would have to become “dangerous” first before they could help him (if he did not think he needed help). I once even begged and pleaded for help from a particular psychiatrist and he looked me right in the eye and told me, “Your son has a RIGHT to be CRAZY”.

Well today I am here fighting for my sons “RIGHT to be WELL”. I had to watch my son lose everything he had going for him. He lost his wife, his two children that used to adore him before they became frightened of him, he lost his home, his car, his friends, many jobs and he eventually became homeless. His ex-wife and I rode all over the place looking for him and “I”, his own mother, drove right past him… I didn’t even recognize him. You see, he had lost so much weight, he was filthy, and his hair was real long and straggily. Luckily his wife recognized his shirt and that is how we were finally able to find him. While we waited for him to become dangerous I watched him go through periods of delusions. Once he believed he was in the CIA and he would speak in some sort of code and then there was another time when he believed he was an army general from the 1800’s.

So often during these times he would be taken advantage of by people he claimed were his friends. He would become a public nuisance sometimes and I was always worried he would end up in jail for it. Then there was the time I tried to get the whole family together at a restaurant for a special dinner and one of the family members suggested to Louie that he needed help at which time Louie proceeded to storm out of the restaurant yelling at the top of his voice that everyone in the restaurant should listen to him that he was Jesus Christ. The whole family was in tears – not because they were embarrassed but because they saw how out of touch with reality he was. He still thought nothing was wrong with him.

But finally the time did come when Louie was considered dangerous. You see, still thinking he was Jesus, he called my daughter and told her that his wife was running a prostitution ring (another delusion) and that she would have to be “crucified” and he might have to be the one to do it. My daughter called me and my husband and we drove as fast as we could, speeding, to get to our daughter in-law and the kids. We were SO terrified that it might be too late because we kept calling her and calling her to warn her to get out of there, but we couldn’t reach her. We were SO scared—but as it turned out her phone was not working and that is why we couldn’t reach her and she WAS okay….BUT this story could have ended VERY differently. We had to wait for Louie to finally become dangerous enough to get him the help he needed and that could have come at GREAT COST. His wife could have been dead, Louie could have ended up in prison or killed by police, and his kids could have ended up without both their parents. All because of an out-dated law that DOES NOT WORK. Why should someone have to become dangerous before we can step in to help them?

I “DO BELIEVE” people have a right to choose! If someone with a heart disease chooses not to get treatment or someone with diabetes chooses to go without insulin then they have that right----they are making that decision with a sound mind. BUT when you are asking someone who clearly does not realize they are ill, because it is the BRAIN itself that is ill and not working properly, then that is a very different story. My son suffered and still suffers from anosognosia, lack of insight into his own illness. I watched him being tortured by his own awful beliefs about things that “he thought” were happening to him and to people he loved and I still could not convince him he was ill and that these things were not truly happening. As much as I knew they were not true he believed completely that they were true.

I told you earlier how I used to wonder when Louie was young what he would grow up to be----but you know now, all I want for him is to be SAFE and as HAPPY as he can possibly be. They say that early treatment can make such a difference in the final outcome of these illnesses—well Louie didn’t get that early treatment, he was denied that chance. So now Louie lives with us and receives social security benefits. He gets to see his children every now and then when I take him to South Carolina where they live, that is where his ex-wife is from originally. I just feel that ” this law” has ruined the life my son “could have had”. Not his illness, but this law…..it took away his “Right to be Well”.