Those of you who are regular readers know that I believe one person who speaks out and advocates can make a difference in a community. This blog post, published in February 2010, is a reminder of how our words can prompt change — sometimes without us even knowing it.
A mother wrote to me four years ago about her adult son who had been diagnosed with bipolar disorder, but had refused to take his medication. His apartment was in shambles and he was in horrific shape. Despite everything that she did, her son refused help. Instead, he sunk deeper and deeper into a mental abyss. Because he was not considered dangerous, there was nothing she could do.
Many of us have walked in this woman’s shoes.
I receive emails and phone calls weekly from frantic parents who have heard about my book and want advice about their adult children.
I remember writing this particular mother an encouraging note and occasionally wondering what had happened to her and her son. This week I heard back from her.
I asked if I could put part of her note on my blog and she agreed.
I just want to tell you how, I believe, that you helped to get my son into treatment that he has steadfastly resisted for these many years. I think I told you of the difficult time I have had to get him to cooperate and to take his medicine correctly for his bi-polar. After he became diabetic too, he was just as much in denial and un-cooperative. I was paying for his apartment and knew he was not taking care of himself. However, he would refuse all of my offers to help him wash his clothes, clean his apartment or any other assistance. His siblings were, also, turned down. He withdrew from all of us.
Finally, I came to the conclusion that it would only be when he hit “rock bottom” that he MIGHT want help. The day before I was to leave on a trip, he called me and asked for help. On my return, I got him into an assisted living home. He is now 100% better. His diabetes is under control and he is very stable with the bi-polar. I don’t know where we go from here but I am happy, for now, that he is clean and well cared for.In cleaning his extremely dirty apartment, I came across a little cache of newspaper clippings and papers that he had been carrying in his pockets for some time. All these years he had avoided reading anything that I have suggested to learn more about his illness. He didn’t even want to hear the words mental illness and would get mad at me any time I mentioned it. He had been carrying an article that you had written concerning a doughnut business somewhere that was stigmatizing to the mentally ill. The article was so greasy and worn that I could barely read it but I could see you had written it and you told of your son’s illness and your struggle to get help for him. The main thing I think that caught his attention was that mental illnesses should be accepted as any other illness of the body without the shame and stigma surrounding it.I don’t know what brought him to his senses but I really think your article helped to get him to where he is now.
It is flattering to think that something I wrote encouraged her son. But the reason why I am sharing this mother’s email is not because I want to brag. Rather it is to make a point. The article that her son was carrying appeared in USA TODAY and can be read here.
I complained in it about a California business named Psycho Donuts which made fun of persons with mental illnesses. I wrote the editorial because I wanted to speak out against stigma. The thought that a man in his 60s with a mental illness might read the article and it might help him seek treatment never entered my mind.
And that’s the point.
We often don’t know the impact of our actions when we speak out on behalf of persons with mental illnesses, fight stigma, or call for mental health reforms. We don’t know how our words may affect someone else — even years after we have spoken them.
This is why we need to continue to talk and write about these issues even when it seems that no one may be listening. Remember, you may never know who you are helping when you speak out — and you will never help anyone if you assume no one is listening and miss an opportunity by remaining silent.
About the author:
Pete, everyday I am thankful for advocates like you, who have blazed the
trail of uncertainties. There are many challenges and potential
consequences for families to share our painful stories in hopes we might
help the public understand the need to not only repair policies of the
dysfunctional mental health system, but ‘change minds’ of the general
public! It should be
illegal to allow a young person who is acutely psychotic, to go untreated
— sometimes for years, and to pile up horrific, irreversible consequences — when
treatment could resort there sanity and they could therefore return to society as
a functioning citizens. Keep on sharing your words — they are making a difference.
Thank you for reminding me that words do make a difference – and we never know exactly how someone will find help.
a straight jacket for teddy bears? ( see Pete’s article).
I hope not to have nightmares tonite –
first I’m hearing of this deplorable ‘toy’.
If the inventors of this sick design could only know –
but I would never wish on anyone –
the excruciating pain, the stiff tightness of canvas that I can still
smell after decades have passed since the leather straps and buckles
were undone from around my waist, my torso, my legs, my feet, my shoulders,
my arms my hands,my neck. The pure horror that was mine for hours as no one checked on me, suspended on a stretcher, bright lights constantly in my eyes – the only part of my anatomy I could move. To move my mouth to talk would be to choke.
Praise God if I never meet those crazy cruel-struck inventors.
I suppose they are the same type of people who would sport a Nazi tatoo just for,fun.
Perhaps more of us need to start speaking up about the REAL HELL we’ve endured back in the day – when the mentally ill were locked up and pulverized.
It is ugly. Many were murdered by careless doctors and over-zealous staff.
That is, carried out dead covered by a white sheet for all to see, after some
negligence from mental hospital staff. Not to mention the perfunctory rapes by doctors and staff. I’m sure theres a teddy bear for that or maybe a croissant.
The idiots of these companies that Pete mentioned need to have their assets seized and donated to mental health reform.
I’ll just sit back and reflect, like Eli Wiesel and other Holocaust survivors, and watch the madness. The madness of insult, injury and unjustifiable stigma against
people with mental illnesses, generally a peaceful set of people.
My apologies for the graphics ~
and yes, words can have healing power to change…
Hi. The teddy bears in straight jackets were suppose to be a valentine item for gift giving. I was very annoyed by such an insensitive joke. I believe NAMI NYS spoke up saying the teddy bear in a straight jacket was stigmatizing and extremely inconsiderate to individuals with a mental illness and their families.
Your words are strong but they demonstrate the hurt you carry with you from past experiences. I hope you can find some peace from this.
Terri
Pete,
I have been dealng with my son’s mental illness for the past six years. it has been a tough journey. I took the family-to-family classes by NAMI four years ago, read your book and heard your ‘talk’ three years ago. Thank you for this blog which is not only informative, but also insightful. It’s great to have a sense of community here.
Next week, I will be joining many NAMI members to meet with our state delegates and advocate for better service for our brothers & sisters who live with mental illness.
Hi. NAMI NYS advocates will be doing this on Feb. 5 in Albany, NY.
Are you a NAMI NYS member? I find both comfort and courage (to speak up) when reading Pete’s articles and blogging with others like me.
Terri
I am a NAMI MD member. Meeting with our state deligates was a positive experience. It took me over two years to build some courage to speak up. Like most people, my son’s recovery has not been smooth & easy. Until he became somewhat stabilized, I had no energy to do any advocacy work. Now, while my son still has a long journey ahead of him, I feel ready to speak up to our politicians. it’s the least I can do. Good luck in Albany next week.
Helen
Thank you Terri for your kind words. What hurts is knowing that the treatment now outlawed for psychiatric hospitals, is still carried out in prisons, and that as I blog this, I know there’s a mentally ill prisoner somewhere who is suffering the same kind of tortuous treatment that I endured long ago. Until its over for them, its not over for me.
Some words that helped me when I was very sick : This too shall pass.
You will beat this.I’m proud of you.
Please get better. We miss you.
You’ve been through worse. I’m right here for you. I love you no matter what.
It is amazing what quick and lasting healing can occur when the right words are spoken in kindness and empathy by friends, family, and mental health workers. Even a doctor who says ‘I believe in you’, and “Together we will find a treatment that works for you.” can make all the difference to a seriously mentally ill person.To the advocates promoting change – Know that your words as they seek to unravel stigma, mean the world to the mentally ill. It is through your voice that our tears are heard.Not one of us can improve mental health care for ourselves without you.