I learned this past weekend that the adult son of a friend had died. This young man had been diagnosed with schizo -affective disorder and had been ill since childhood.
It is always difficult to know what to say to parents who have lost a son or daughter. My own parents lost my sister in a car accident when I was fourteen. That accident happened more than fifty years ago. Still, not a day goes by when they don’t think of her.
It might be an old custom but I went to my friend’s house as soon as I heard about his son’s death. I’d met this friend at our local National Alliance on Mental Illness meetings and when I saw him, I asked if he would show me photographs of his son since I’d never met him.
The childhood snapshots spread out on their dining room table showed a smiling, carefree boy poising with his sister and their loving parents. More recent pictures showed a more somber, handsome man, who’d gained weight because of his medications. His mother said the first indication that their son had a mental problem surfaced in elementary school when he was initially diagnosed as having ADHD. But as he grew older, the symptoms worsened and by his teenage years, he had been twice hospitalized. The situation became even more desperate when this young man entered high school. It was there that he’d had to deal with the growing mental storm in his mind and also stigma from administrators, teachers and classmates who neither understood nor cared about his illness.
That battle eventually had become too much for him. He’d retreated home. But his parents had refused to give up. With treatment, their son was able to move into an apartment. But like so many of our loved ones, life soon seemed to pass him by. There was no college, no career, no marriage.
His parents told me how much they had loved their son, what a wonderful blessing he had been in their lives, and how badly their hearts were breaking now because he was gone.
What his mother hated the most about his mental illness was how it had ‘stolen’ her son from her. There had been times when the young man standing in front of her had been completely unrecognizable – a stranger who’d taken over her son’s body and mind. As he’d grown sicker, there were fewer and fewer times when her “real” son would emerge.
“We would have him,” she said, “maybe an hour or even longer. He would be his old self.”
Their last conversation had been a good one. He’d told his parents how much he loved them and that they had been wonderful parents. It was her old son who had said those words. Spontaneously.
And now that young man is gone. I left my friend’s house, as I always do in these situations, feeling sad, frustrated and angry.
Sad because of his death and his parent’s loss and suffering. The death of a child is especially difficult.
Frustrated because of regardless what you say, your words sound hollow. I’ve found that only time can ease such painful losses.
And angry for so, so many reasons.
*Angry because we now realize that persons with severe mental illness die about twenty five years earlier than the rest of us. The average life span is 51 years old versus 76 for most Americans. The primary cause is cardiovascular disease, but obesity caused by medications, plus self medication (smoking, alcoholism and drug use) also cut years off our loved ones’ lives. Why are we not doing more to change this?
*Angry that stigma in schools and workplaces is still common place even though it destroys the spirit. We need to do a better job educating our children and adults who still think Burger King commercials that feature little men in white suits chasing after a crazed King are hilarious.
*Angry that there are those in our society who continue to deny that mental illnesses are real — when those of us with loved ones who are sick see evidence of these brain disorders every day.
*Angry because what we need is a cure – not more costly medications that simply “manage” an illness with less side effects while bankrupting families.
Being angry doesn’t solve problems. But sometimes it’s a useful emotion if it makes you more determined to advocate for change.
What did I say to my friend? I told him that I was sorry for his loss. I was glad that he had his son for as long as he did. And that I was grateful for the work that he was doing in NAMI where he routinely took leadership roles and participated in Crisis Intervention Training classes as a NAMI parent. Without knowing it, his advocacy in NAMI might have helped a family from going through what he now was experiencing.
I told him that he was a good father. He didn’t have to take my word for it. His son had told him so.
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I’m so sorry for their loss. I feel better knowing that families helping loved ones through the horror of mental illness have you leading the way, advocating for them.
I have a lump in my throat after reading this and I”m trying to hold back tears. This is so heartbreaking, on so many levels….Heartbreaking because the son’s life was already truncated by his illness….Heartbreaking because so many families go through this, and there is still such a lack of understanding out there. Even among families, there can be so much stigma and judgment that gets in the way of treatment. Thank you for continuing to post and educate. And also for reminding me that when there is loss, the best thing we can do is show up and be there for people who are grieving.
Very sad. What a tragic loss.
Truly sorry to hear of the loss of this young man. I do understand, as the daughter, sister and the mother of family with severe mental illness. Here is how I get by, I believe that it, mental illness, is really a physical illness. Just like diabetes or cancer, it requires medical care. Period. We as humans must come to this understanding, just like a brain tumor, or diabetic shock or an epileptic seizure could cause an episode, so does the physical illness of the mind. It’s real. It’s treatable. Just like diabetes.
I am so sorry for their loss. ~ And I am sending prayers for the family. Thanks for sharing this Pete, you expressed the feelings and emotions of this tragedy beautifully. Your amazing efforts to educate the public on mental health, as well as why we need to improve the systems and help these dear folks, is much appreciated. I have had the pleasure of hearing both you and your wonderful son speak ~ and those experiences so moved me. Your book, Crazy, is incredible … and I continue to recommend it to those struggling, as well as health care providers. Having lost a beloved older brother to mental illness 38 years ago, when he was only 21 … makes this a subject that stays very close to my heart. Best wishes to you, your son, and all the people who work so hard to help the folks who need it most.
Your friend’s story could happen to anyone of us (parents) with children diagnosed or undiagnosed with a mental illness. It hits home and reveals how fragile our children’s lives are. I am glad you were able to share this in your blog.
Terri Wasilenko
NAMI Cayuga County
Very touching….. And very true…..may god bless all those individuals/families suffering through this now….keep hope alive. It is hope that keeps us going in the face of any challenge. Best wishes to all!
I am reminded by stories like this that life is meant to be lived one day at a time and that we need to live lit to the fullest. As the father of a son with severe, chronic mental illness, I remind myself that I only have today to reinforce the love that I have for him and that he needs to know that I will support him and protect him with my own life if necessary. I already mourn the loss of the child that mental illness stole from me, and struggle to know and love the son who is forever mentally impaired. Sometimes I get so angry and feel so cheated as a dad that my son will always struggle against his own mind and the stigma that others feel for those who suffer from mental illness!
The fathers statement that he was angry that mental illness stole his son from him really touched home for me. Our son too was stolen from us but not by his choice nor ours. When mentally ill persons male or female in the state of Montana find themselves involved in our criminal justice system, judges and prosecutors can’t wait to send them to prison and often set them up for failure in order to lay down the gavel and send them there. In Montana, incarcerated young mentally ill persons are labeled with anti social personality disorder so the state does not have to treat them. In all reality the Medical Directors including the state hospital forensic unit are nothing short of political hacks serving only at their own interests. In our son’s case, he plead guilty to a crime that he was innocent of and was sentenced to a 6 year deferred adjudication. Part of his agreement was that he was to attend a DOC program,(Boot Camp) and complete and of course sentencing also stipulated that he take all medications as prescribed. Upon arrival at Boot Camp his medications were confiscated and within 12 days he was discharged from the camp for predictable behavioral problems. At an eventual court hearing, the Boot Camp claimed in this court of law, that our son did not come to camp with his meds which is an outrages lie. A few months later he was sent to prison for five years. He has been in prison now for three years without medications, spending his time on the high side, witnessing suicides, rapes and other abominations which has caused him to withdraw from our family among other things that you can imagine. Unfortunately there is not a court in Montana, that will uphold a persons right to receive necessary medications while they are in custody of the state. Many of us watch in unimaginable horror, Montana steel our children through their mental death.