I am the parent of an adult child who is living in a state mental institution, although he really suffers from an acquired brain injury, severe epilepsy, and now a learned pattern of behavior that is identified as institutional syndrome. Once the patient has lived for a period of time that is no longer helpful, or conducive to the original diagnosis, or reason for commitment, the person develops and learns behavior from the other patients, from the staff and from the complete and total isolation that institutions generate by their very being. For example, have you ever been hospitalized? Maybe had a baby? Lights are on 24/7, noise is constant, and intercoms speak loudly of “Code Blue” or “All available help to unit….” Just think for one minute what it would be like to live like that for years, because no one will listen to the family’s concerns, their constant advocacy that can ratchet up even to a national level. What is it really like for that patient? What is it really like for that family?

I have a background solidly in education; I have worked with many kinds of students with many kinds of needs. But I have also lost a young husband to a rare cancer, sinus cancer. From the time I was 39, he 45, and diagnosed, then I 43 and he 48, he was gone, but between that time we raised three boys during radiation, chemo, surgery after surgery, hospitalization after hospitalization, and then we lost this most brave husband, father, son, brother, son in law, brother in law, friend and all around great guy. That’s my background, mother, wife, teacher, advocate and now single parent of three young men, one of whom has been totally disabled by Epilepsy, brain surgery and now the mental health system that is seriously wanting in the compassion department.

Not bitter, not vindictive, just a mother who needs someone to pay attention. Pay attention because this shouldn’t have happened in the first place, and it cannot continue.

Traumatic Brain Injury, Epilepsy, Mental Illness, a family torn apart, and a state that will not listen. A state that lies to your face after you have researched and worked and dedicated yourself to this cause, this son, this family member who is suffering.