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.

Most people work at their jobs going in and out every day.  Some bring lunch, some buy. Some use their cell phones, inappropriately, some for child support, emergencies, but most people go to work everyday.  Some people have a loved one living in a mental institution.  A psychiatric facility with many, many folks who go there to work, because it is their job.  Some bring their lunch, some buy, some use their cell phones inappropriately, and if they work in an mental institution, it is always inappropriatly, because they have office phones for emergencies, but they do their to work and they get paid.

The families who have a loved one living in that institution depend daily and nightly that the folks who work there are doing their due diligence, every day, every night.  All rights have been taken away from the residents, except maybe voting.  But no one ever looks at the truth:  All rights have been taken away from the family of the patient.

The family is limited to tiny visiting hours, with a plethora of regulations.  No coats, jackets, cell phones, purses, food, drink,  pictures, gifts of personal soaps, shampoos, or any other luxury items, as all of that is provided.  Of course the quality of what is provided is less than what you took camping when you were a girl scout at camp.

Parking is a hideous mess on a weekday, but on the weekends, all of a sudden the parking lot is an empty black hole on the mountain with spots everywhere as family members have given up visiting because the reality is just so harsh.

Park, enter building, if it is warm enough don’t bother with your sweater, jacket or coat, otherwise you will need to put it all in a locker.  Leave your cell phone in your car, and your money and just go in with your ID.  If it’s raining, dammit, bring it all, because your umbrella will have to go into the locker.

Got a nice play you’d like to see? a Film? a trip to visit the rest of your family? Well you are missing it, and them, because the visiting hours are limited to the most invasive times of the day for you.  Try to work out an early morning visit?  Don’t be late, because at 12 noon you will be whisked out with non smiling faces.  But at least you can get to your niece’s birthday party that starts at 2:00, and you leave your loved one, the patient patient, wondering how everyone is, and why don’t they ever come and visit anymore.

The first few years, it’s all novel.  Every time something happens, or changes; like you are walking to the unit that is the home of your loved one and a patient exposes himself to you with a few LOUD lewd words, or you are kicked, literally kicked, and it hurts, or followed, in a manner that makes you feel tiny, scared and in despair, and so you are surprised, shocked, scared and down deep: angry, you breathe, you repress and eventually you seethe with anger, resentment and a feeling of hopelessness and despair that doesn’t even come close to what your loved one, your family member, feels every day, so now add to all that, add GUILT.