Monday, November 29, 2010

Mental illness: We have met the affected, and it is us. Part I

When I was a child, I didn't understand why some illnesses were discussed in normal tones and others in whispers. I remember my mother asking disgustedly once, "How can someone still think cancer is contagious?" but I knew there were things my family didn't talk about. I had my first episode of depression in college and found I wasn't the only family member to have it. With gentle asking, I found many friends who were battling it or had in the past, as well as other families that had multiple members affected. Almost none of those families talked about it. The stigma was in the whispers and the silence. Depression was not a nice disease.

Depression is a huge problem. The World Health Organization concludes depression is either the second or third leading cause of disease burden in the world and is number one in high-income countries. Furthermore, depression, bipolar disorders, schizophrenia, and obsessive-compulsive disorder account for four of the world's top ten causes of disability.

It is time for embarrassment over mental illnesses to be eliminated forever. Mental illness, disease that affects mood, thought, or behavior because of chemical imbalances in the brain, is illness. It is not weakness, it is not evil, it is not poor parenting. It is disease.

I should have known this from my time in medicine, that patients are people first, but I didn't really understand either the impact of mental illness or society's typical response until my son was a toddler. Joseph's most apparent problem is autism. However, he also has an atypical form of bipolar disorder, anxiety, and obsessive-compulsive disorder. He set a dubious record by being one of the youngest children seen at one of the most respected child psychiatry clinics in the world.

I learned lessons in the waiting room, looking at anxious children, tired parents. I remember one child begging his mother to ask the doctor to call his school so he wouldn't be expelled, saying it was so much better than the last one he had been thrown out of and he would try harder to sit still in class and not to blurt out his thoughts. I watched him a little more and realized he had Tourette's syndrome, a neuropsychiatric condition typically marked by repetitive behaviors and repeated vocalizations, often socially inappropriate ones. But mostly, I saw a little boy in pain over things he could not control. I watched my four-year-old running around the waiting room with my husband tailing him, responding to his anxiety by turning his hands into elevator doors, opening and closing them and saying "ding" like a bell. When he panicked, he would bolt toward a real elevator (his obsession) and we would chase him, running past people who stared at us as if we were all contagious with something.

Joseph is now a teenager, and with medication and behavioral management, he handles his anxiety better and bolts less often. But I sometimes see signs of the elevator obsession. I still see stares and disgust, if not fear, in some peoples' eyes when he runs into a fast food restaurant, bumps people on his way to the counter, and delightedly asks "What is the toy today?" Usually, people then notice that he walks awkwardly, that he speaks with a slur, that he is smiling broadly, and they relax a little. But not always.

There is no neat division of WE, the normal, and THEY, the affected. We are the affected, and we need to learn more about mental illnesses (diseases of brain function) and how to respond positively to people who live with them. In my next blog entry, I'll talk about educational and research organizations, support groups, and other ways to either live better with mental illness or help a loved one live safely and fully.

Friday, November 26, 2010

Essay: Meetings and Partings

Thanksgiving has come, which means in our home that Christmas is coming. My husband has already brought down the box of holiday books and videos, and my son will shortly be throwing things all over the family room floor rediscovering the joys of Christmases past.

One of his favorite movies is the Muppets’ Christmas Carol.  It is also dear to me.  In one scene, Bob Cratchit (Kermit the frog) sits at his kitchen table and looks around the table slowly, at the faces of his wife (Miss Piggy) and each of his children. Then, and only then, does he look at a crutch propped in a corner of the room. His family sits silently, waiting to see what he will say.

He says that life is made up of a series of meetings and partings and that his family has experienced their first parting with the death of Tiny Tim. He says that it is Christmas, and they are gathered together, and he is thankful for all of them. In his quiet voice, he reminds them that they are precious, each unique, and that --- perhaps--- the best time to appreciate them is in the wake of a parting, a loss.

I watch the movie every year, but I haven’t watched that scene in years, since my father died. Its memory is fixed for me (and perhaps inaccurate), but its significance is unchanged.

We gather for holidays as family, whether established by blood or love or both. Over time, the faces at the table change: There are no meetings that will not eventually result in partings. This is the way of things.

Yet my memories remain, of my father, of everyone else I have loved and lost and will hold forever in my heart. Rejoice in the faces at your table. Remember those who are gone. Love moves inexorably from one year to another, one beloved to another, but it survives. Love is the glue of time. It holds us together.

Elizabeth Coolidge-Stolz

Tuesday, November 23, 2010

Beginning: Learning how to use a medium

I've been a writer since I was a child, but it takes time to master different forms, essays, short stories, science articles, news pieces on healthcare advice and patient advocacy. Now I need to learn how to blog effectively so I can bring news stories to peoples' attention and let folks know about the growth of Healing Woman, the website.

This is my first blog entry here, a test for expressing myself in a new way. I hope to use this blog to comment on living as a woman with chronic illness and parenting a child with special needs, but mostly on the challenge we all face: living life fully.

Truly, I believe we can all look at our education, our experiences, and our hopes, and live as healing women and healing men.We are stronger when we connect with each other.