Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Tuesday, January 11, 2011

A Breakdown, A Snowstorm, But Still Fighting

This post originally appeared as a Facebook Note. But it rightfully belongs here as the most recent events in the Unique Family. This begins a new chapter in our lives; dealing with mental health issues as they relate to chronic illness and stress. This is part of many families, and I want to be part of enabling discussion and encouragement. This is only one part of how mental health plays a role in our family. In the future, I will also discuss my sister and my husband. It is important to advocate for our loved ones. Thank you for reading.

Perhaps I shouldn't write when I am tired, but the house is finally quiet at 1am, and this used to be the time that I could punch out a 2500 word paper, so I figured it is as good a time as any.

The last two days in the Unique Family house have been a roller-coaster. For some reason, I hesitate to put this down, but will push ahead. Not because I like sharing the details of my home, but I have found out that by sharing, I help and encourage others. So here goes.

My youngest son had a nervous attack. A nervous breakdown. I hesitate to call it a full breakdown, because he is recovering quickly, but I don't know if that is because it lacked severity or if his memory issues are kicking in and he is forgetting the whole incident. Here are the details.

Sometime Sunday night, my son began to yell, cry and scream, saying the same fragment of a phrase over and over again. "I'm sorry!" Writhing on his bed, he alarmed my oldest son enough to come and wake me up. In his usual autistic non-emotional fashion, my oldest son said, "Mom, wake up. Russell is having a breakdown."

Thinking it was a dysautonomic event, I rushed to his room, but heard the noise before I even got to the closed door. Upon opening the door, there was a picture I will not soon forget. It was a person in torment. Over and over again, he cried, "Make them stop. I don't want to hear them anymore. Make them stop. I'm sorry!" Thus began an incident that ended with us sitting in a Mental Health Emergency Room in the middle of a snowstorm.

It is so hard to talk about this. No one wants to talk about mental health issues. In light of the recent shooting, I am becoming more adamant that parents, friends, acquaintances, school officials, etc. have the resources they need to help an individual dealing with any mental aberration. Don't think I am saying this to capitalize on the recent events. I am saying this because how many people know where to go if their child is having an event? How many people know what to do if their friend begins to worry and scare them? How many people feel as helpless as I did Sunday night?

That night, I fell asleep in a chair, listening until I could hear him deeply sleeping. That was around 1am and after rocking with him for 3 hours. I was up again by 4:30am to listen for the school closings. And, by 10am, we were sitting in a Behavioral Health ER. The voices were quieter, but still there. Already his memory was slipping away and he was confused over the events of the night before.

Hours and hours later, the good news was that this was not considered a psychotic event. Because he could specify what he believes led to the crisis (the pressure he was feeling about school, church volunteer service and home life), because he maintained the ability to be lucid and based in reality, it was attributed to the stress in his life, and we were advised to seek therapeutic counseling to help him learn more coping and behavior modification skills, especially in light of his memory issues. The line that I distinctly remember is that my son could be compared to a brain injured person, and therefore, would need constant repetition and therapy to help him deal with the world, his condition and the stress.

Once again, I was told that I would have to be a strong advocate for him. I just chuckled. Please believe me when I say I am not being flippant.

Can I tell you the truth? I am tired. I have searched for doctors, therapists, specialists that could tell me what happened to my child. How did I lose my honor student, my athlete? Why has he been compared to an early Alzheimer's patient and a person with traumatic brain injury, and yet, I have no diagnosis, no treatment plan, no options for care?

And, now, to have to watch my son have a mental episode due to the stress of dealing with his life, a life that does not even include full-time school is almost too hard to bear. This is his second mental episode where he briefly wandered away from his senses, and asked me pitifully, "Mom, what is to become of me?" I sit here with the broken heart of a mother who longs to fix things for her son. Longs to kiss it and make it better. Longs to sleep.

But, that is not the road I was given to walk.

Today, I will be on the phone, calling his primary doctor, looking for a therapist, and trying, again, to put together a treatment plan to help him cope with his loss. He is 14, and has experienced more loss than I can imagine. Once again, I will fall on my knees and ask God for strength to sleep only a couple of hours and work all day and search the Internet at night for answers. Once again, I will search everywhere, asks friends and other advocates for suggestions, and reach down deep for the determination to keep fighting for my son.

I am tired. Driving Monday afternoon on the roads of Charlotte, I pushed to get home before the darkness robbed me of the ability to see the roads. I jumped out once to scrape away the ice and drove more by memory and GPS than clear vision. We almost had an accident when the brakes locked up and I slid out into an intersection, narrowly missing a car as I honked the horn to warn the driver, and maneuvered my minivan into a wide arc of a left turn. I now thank God profusely for that year of living near the Catskill Mountains and driving during 13 snowstorms. With the neighbors pushing, I parked the faithful car in the driveway, and began to thaw out my stinging fingers, too weary to even cook dinner.

But, the fight has to continue. Our children and our fellow adults need our help. Mental health conditions, traumatic and acquired brain injury and its aftermath continue to rob us of our present and our future. They continue to create human beings who cry out for help and need all the available resources that we can find.

If you take away anything from my note, please take this. Many families are dealing with mental health conditions in one form or another. Please don't hide if this is happening in your family. Don't consider it a shameful thing to be discussed in hushed tones and innuendo. We have to begin to find real solutions to help our children and fellow adults. And, that cannot happen without people who are brave enough to ask for help, push for more research and funding, and demand that something be done.

In my mind, I see another mother who has come to the end of her rope with her child. She doesn't know how to help him as he worsens. She doesn't know if she has a facility like the one I went to near her. This note is for you. You know who you are. I am still fighting. I'm tired, but still fighting for your son and mine.