Matt would be 35 years old today. I heard someone say, “grief feels like a part of my soul has been amputated”, that’s exactly right. We miss Matt so much.
When Matt died, I knew I wanted to do something to honor him. My first thought was to do something to help people suffering from mental illness and their loved ones who struggle with how to help. I never want anyone to go through what we’ve gone through. I think about Matt and how scared he was, unsure of what was happening to him, and struggling so hard to fix himself. I think about how fiercely we loved him and how scared we were, unsure of what to do and where to turn for help. We found ourselves in unknown waters and very alone. There was no road map.
What could I do to help others dealing with this? It felt overwhelming, if our mental health system doesn’t have the answers, how could I possibly help? So, I thought about Matt and wondered what other way could I honor him, and of course, it was by having his kindness ripple on through this website.
However, I’ve continued to stay informed about mental health issues and continue to wonder what I could do to help other families. A number of people have approached me with concerns about their loved ones and asked me if I had any advice to give. The truth is Matt was diagnosed in February 2017 and died in May 2017. In those three months, I was a researching fiend. I was determined to find a way to help our son, but to my everlasting sorrow, we ran out of time.
I have a lot of information, research, ideas for how to help someone with serious mental health issues that I was never able to try with Matt. Today, on Matt’s birthday, I’m posting it with the hope that it might help someone else. Note that some of it is traditional and some of it goes into very woo-woo theories. Its information gathered in one place for you to evaluate and decide for yourself if it can help you in some way.
If you or your family member is struggling with a serious mental health issue, I am so sorry. I wish, with all my heart, that something in my research resonates and helps you find a way to recover or at least a way to live and thrive with this illness.
And yes, I used the word recover. In spite of what the mental health professionals told us, people can and do recover from serious mental health illnesses and others find ways to live with their illness while living fully productive lives.
If this is something of interest to you, please read on. If this does not affect you, first, thank your lucky stars, then share it with others who may not be so fortunate.
I think the most important thing you can do is to work with people who believe in recovery. Hope is very important for everyone involved, while hopelessness will suck the life out of you. There is a “recovery movement”, “peer mentors” and “peer respites” all run by people who have recovered from psychosis or other severe mental illnesses, many of whom went through years of struggle, in and out of hospitals and crisis. These people, with lived experience, are reaching out and trying to help others to recover and offering hope and strategies that the medical community has not offered.
There is no one solution for any serious mental health illness. Every person has different symptoms and reactions and each responds differently to the medications and treatment strategies. For that reason, you will need to evaluate all of the information and decide what works best for you. Note: This is in no way a comprehensive list, just the start of information I’ve gathered.
Homes for Recovery: A directory of places for people in crisis to go to for 1-7 days. It’s run completely by people with lived experience from psychosis and everyone affiliated (including board members) must be in recovery.
Open Dialog Therapy – a program in Finland that seems to have amazing results. There are now places in the US that are trying the open dialogue program.
Therapist, Will Hall (lived experience) – one of the original members of the recovery movement, now does therapy, including via skype sessions.
Therapist, Dr. Jed Bopp, Boulder, CO, believes in recovery. He is a psychologist who specializes in thought disorders and practices Cognitive Behavioral Therapy. I’ve included him because he’s the first therapist who gave me hope. He said, people can recover from severe mental illness – and after so many told me they won’t even bother with patients like this it was a rare moment of hope. I don’t know if he does skype therapy but throwing it out there.
Therapist, Paul Levy, Portland, OR, believes in recovery. Works with spiritual emergence.
Depression, Bipolar Support Alliance – this is a site that offers support to the person suffering but also their family. It has support groups both in-person and online and many (if not all) of the group leaders have lived experience.
Families Healing Together – an online course with other struggling families.
The Hearing Voices Network – It’s believed that 5% of the population hears voices and continue to lead productive lives after they learn how to control and work with their voices.
MIA Online Parent Support Group – A space where parents can exchange information and share experiences to foster a dialogue that goes beyond the predominant mainstream medical treatment model.
Anatomy of an Epidemic – book by Robert Whitaker (see also Mad In America website below)
How to Change Your Mind – book by Michael Pollan. (note this is not for people who suffer from any psychosis but is for people suffering from severe depression and anxiety. It’s thought-provoking about the use of hallucinogenic drugs and the government-supported clinical trials going on today at Johns Hopkins among other places.
Dr. Xavier Amador – I am Not Sick, I Don’t Need Help, a two-part series. I’m Not Sick, Part 1 and I’m Not Sick, Part 2, YouTube videos well worth watching. Dr. Amador does a good job of helping us understand that people experiencing psychosis are not in denial, that part of their illness is “anosognosia” – which is the inability for rational thinking. What they see/hear/believe is 100% real to them. When Dr. Amador was in college, his older brother was diagnosed with schizophrenia.
Below are a couple of movies that really hit home for us. Note that they scared the hell out of us and are heartbreaking but they also gave us hope.
- Crazywise movie compares the way people are treated in third world countries vs developed countries. A spokesperson for the UN said if you suffer psychosis you have a much greater chance of recovery if you live in a third world country. This movie promotes the idea of “spiritual emergence”.
- Be Vocal movie, follows 3 survivors who are peer support mentors.
- Dr. Rufus May – the doctor who hears voices documentary
- Take These Broken Wings interview with the man on the street and two women with severe SZ who have recovered and live productive lives
- Eleanor Langden ted talk where she talks about her experience of hearing voices.
- Beyond Possible: How the Hearing Voices Approach Transforms Lives – This short film offers a few first-hand accounts of the life-changing power of this profoundly human approach to the often frightening experience of hearing voices, seeing visions and other unusual experiences.
Many of these offer “alternative thinking”
Mad In America – founded by Robert Whitaker, author of Anatomy of an Epidemic
Spiritual Emergence Website – gives referrals to therapists who work with spiritual emergence
Chris Hancock, Therapist. Support for Extraordinary Experiences – I’ve got him down here because I really don’t have enough information about him but from what I’ve read so far, he looks promising. I’d recommend doing more research, getting recommendations, etc.
INTAR – the international network toward alternatives and recovery, director Dr. Peter Stastny.
The Icarus Project – support and education, by and for people who experience the world differently.
Mind Freedom International / Iaacm- International Association for the advancement of creative maladjustment – David Oaks (survivor) Oregon, fight for human rights for people labeled mentally ill, challenge psychiatric drug industry, promote effective options in mental health.
Freedom Center – Massachusetts, a peer-run organization run totally by volunteers, was the first in MA and many holistic options, against psychiatric abuse and med abuse, etc. because of them, MA now offers a peer-run organization, The Western Mass Recovery Learning Center.
Western Mass Recovery Learning Center – supports healing and growth for individuals and the community as a whole through learning opportunities, advocacy, peer-to-peer support and the development of regional and national networks.
I Got Better – aims to challenge the dominant narrative of hopelessness in mental health care by making stories of hope and mental wellness widely available through a variety of media.
NAMI – National Alliance on Mental Illness
I hope with all my heart that something here gives you hope and can truly help you. Good luck. Kindness always. Jackie
Please, please, if you have anything to add to this list, put it in the comments below. I want to hear from people who can share from their own experiences what has helped them or their loved ones. This list will continue to grow as suggestions come in.
RESOURCES RECOMMENDED BY READERS OF THIS POST
Nolan Robinson Foundation – they raise funds for mental health treatment for young people (under 21) who have been diagnosed with depression, anxiety or attention deficit disorder regardless of their ability to pay.
To Write Love on Her Arms is a nonprofit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide. TWLOHA exists to encourage, inform, inspire, and invest directly into treatment and recovery.
Find Your Anchor – the goal of the Find Your Anchor movement is suicide prevention, awareness, and education. They will send a small blue box packed with various materials designed to inspire, soothe and offer support to those suffering and to people who want to help by placing the boxes in public places (the library, the Vegas strip, etc.) to be found by those in need; specifically those close to suicide in one way or another. The boxes are intended to be organic in the sense that each person can add to the box their own inspiration and anchors before passing it along.
Warfighters ADVANCE – changes the trajectory of the warfighter’s post-deployment life, so that rather than an existence characterized by an endless cycle of mental illness diagnoses, medications, medical appointments, and disappointments, the warfighter has a life characterized by pride, productivity, healthy relationships, continued service, and advocacy for the same outcomes for their fellow service members.