A damn cruel disease

"It must be remembered that for the person with severe mental illness who has no treatment, the most dreaded of confinements can be the imprisonment inflicted by his own mind, which shuts reality out and subjects him to the torment of voices and images beyond our powers to describe."

-Anthony M. Kennedy
U.S. supreme Court Justice


Here we are 11 months into treatment. Joseph has shifted from uncontrolled random outbursts and violence to controlled random outbursts and violence. I would rather the first of the two. At least I could forgive the actions. I know in my head he is still sick but I still have a hard time because on some level he is making calculated choices to do bad things.

I feel I may be slowly loosing my sanity in this whole process. The stress is killing me. I can't sleep and when I do I am plagued by nightmares that are difficult to differentiate from reality. What if Joey's disease make me insane? Not in the contagious disease type way but the there is only so much one person can take kind of way.

We are filing an extension for Joseph to stay in the facility for another 6 months. They are starting to say that there goal for discharge is June of next year. There is a part of me that is relieved and another part that is terrified. I am mostly terrified for my ability to get everything together by than. I just got the joyous news that the child support would be increased to nearly 600 a month to pay arrears owed. Than the cascade of  things that effects. Paying off Joey's medical bills, saving money for a house so we joey is discharged he has somewhere to call home, saving money so when he comes home we can afford what it costs to have a mentally ill child. And here comes the tears and panic attacks. I know everyone keeps telling me to take it one day at a time but when you have a chronically ill child you have to think forward. I'm 31 years old and this was not supposed to be my life. I worked hard to get through school and provide for my family and now I am working days on end and still not getting anywhere. Day in and out I think, this is it, this is my life.

In the midst of all of this Joey going forward and backward never really making progress for long. Will anything ever at least be ok? And will it be ok before I loose my grip?

What if this is as good as it gets?

So a few weeks ago Joseph had an overnight visit. I was anxious I'm not going to lie. The last time I had Joseph with us unsupervised max and I were locked in a bathroom with him beating the door as I called the police. However I set out trying to be as positive as I could. It's not as though there was any "big" incident that caused my disrepair it's just as though nothing had changed. The tension was palpable. It's hard for those who haven't lived with Joseph can understand but I will try to explain.

In a typical household there is inevitably push back from children when asked to do tasks. With Joseph when you ask something as simple as please pick up the blanket from the floor the response is "no" and his body tenses as he glares at you almost daring you to push the subject. Its difficult because the parent in me wants to have him do what he is told to do but the other part of me knows the danger that everyone can be in if he is pushed. This situation is nothing different than how he was prior to going into treatment. Do you parent your child and pray he doesn't go ballistic or do you let him call the shots and in turn not parent him?

How? How could we be three years into all of this and almost a year at this facility and have made no progress?! What if this is as good as it will get? What if this is life until he is 18 and an adult? This can't be my life or his. I prayed that the following visits would go better but this left me deeply discouraged.