Are you the father of a son who struggles with mental and behavioral problems? Do you find yourself overwhelmed by the emotional and mental health needs of your son? Are you are mother or wife in a household almost completely destroyed, on a daily basis, with family conflict and emotional chaos? If so, E Martyn Ramsey has written a book just for you. He the father of a son who, following an intense family conflict, decided to commit suicide by going into their basement and hanging himself. Life for Joe, Ramsey’s son, was characterized by internal pain that he could not sooth in this world. No drug, no friend, no occupation, no event, no thought, or success could heal the internalized pain that Joe carried with him until the day of his suicide. Lets welcome E Martyn Ramsey as he shares his story with us today.
- Most families experience great stress, confusion, and uncertainty when a family member experiences a mental illness. Could you please explain the beginning of your journey and how you accepted (or did not accept) the diagnosis? Tell us about your journey.
My “journey” has a history over 20 years old and counting, as my eldest son was originally diagnosed when he was 14 with paranoid schizophrenia, and he’s 36 today with a diagnosis of bipolar disorder. My second eldest son took his own life over 15 years ago. I’ve written a book called, “Fifteen Years After …my son took his own life”, and my two sons and their circumstances are intertwined.
For me, personally, I cannot “divorce” mental illness from suicide. My book devotes a great deal to the earlier years when we were dealing with only son #1’s mental illness in great detail as well as the circumstances surrounding son #2’s death.
- What was the most difficult part of this life change for you and your family?
For me (and I think I can safely include my wife), the most difficult life change is that, before it all started I never expected that this could happen to me. I know that sounds a little self-righteous but it wasn’t on my radar at all. The most difficult life change for me is that it’s a life sentence. I thought that I’d get my life back after raising my kids.
My son’s bipolar is very debilitating and he continues to get regular services to this day. I am also his financial rep- payee because he has no financial acumen whatsoever. There’s hardly a day that goes by without seeing or hearing from him. He still disturbs my wife and me whenever he decompensates, and that’s often. We have experienced as many as 15 phone calls from him in one 24-hour period, sometime at odd hours of the night.
- What makes a mental illness difficult to accept? Is it stigma? Is it denial? Is it lack of knowledge about what causes mental illness?
Well, stigma is, or perhaps I should say, was a problem. It’s very much still alive, even among educated people. We came under suspicion from individuals when son #1 was in high school and later close scrutiny from the state when son #2 passed away.
In son #1’s case, behavior preceded diagnosis and treatment while he was still in public high school. I was frequently called from work to his school whenever an episode occurred. I was always outnumbered, people were overly glib, and it was a hurtful experience for me.
In the case of son #2’s death, my wife and I had to endure some whispers of accusations but it was hardest for my 2 other children, son #3 and daughter #1. I know with certainty that they endured much pain from insensitive comments made by “friends” at school. If I were able to change just one decision (and there’s more than one) it would be that I should have moved to a different town where son #3 and daughter #1 would’ve gotten a clean slate, but I liked where I lived and I liked my neighbors, who have always been supportive, so I stayed put in the home where it all happened.
The other thing that makes our circumstances difficult to accept is, as parents, my wife and I looked inward for reasons why. Parents are supposed to protect their children, but how do you protect someone from something that you’ve never even thought about before? Nevertheless we blamed ourselves and it took us awhile to cut ourselves some slack.
- We all have been shocked by the multiple stories in the media, in our communities, and on the news about acts of violence at the hands of someone with a severe and untreated mental illness. What are your thoughts about this? What needs to change?
I think that the correlation between mental illness, guns, and suicide is strong for most cases I’ve heard about in the media. Coupled with the fact that these mutually mitigating factors are underserved in our laws, education and healthcare systems I believe that this problem will never be checked until a comprehensive plan is put in place to address those factors. That plan would have to start with public education, not just in schools for the young but also to a wider audience including adults who are ignorant of the problems. We hear more about the dangers of catching something like EEE from a mosquito in the media. Only when a story gains national exposure, or at election time, does the lip service increase, but nothing really happens to change the public perception. True, not all stories end with the death of the gunman, but I’m convinced that the ones that do are determined not only to take innocent lives, but that they are also determined at the end to take their own lives at the hands of the police.
Also, the healthcare system and insurance companies need to treat mental illness the same way they treat physical illness. Many hospitals do not accept patients with mental illness and of those that do there is a wide disparity in the level of care. I know because we’ve personally dealt with many, many hospitals. There is also a wide disparity among insurance companies and how they provide benefits for people having mental illness. Any insurance company benefits summary segregates benefits for physical versus mental illness. In 1996 the Federal Mental Health Parity Act stated that, “annual or lifetime dollar limits on mental health benefits be no lower than any such dollar limits for medical and surgical benefits offered by a group health plan or health insurance issuer offering coverage in connection with a group health plan”. I’m not familiar with all the wording of the law, but my experience does not reflect that, so I think there is either a loophole in the law or the law is not being enforced.
- How did you approach finding services within the system and was it easy or difficult?
Extremely difficult. Even if a person with mental illness seeks help, the first point of contact is a hospital ER. My son has told me that he’s always first asked if you’re suicidal or homicidal. If you answer yes, you’ll potentially be admitted or referred to another hospital for admission. As I said before, not all hospitals have a psych wing.
The next step is to “find a bed”. If a bed is found, it could be nearby or 50 miles away… it’s wherever they find the bed. As a parent, I have never been informed of any choice. It’s usually “one and done”.
The next step is to transport the person to the hospital, and as I said before there is wide disparity in the quality of the hospital and the level of care you’ll get there. My son has been admitted to hospitals ranging from ancient facilities with cage-like rooms that were straight out of Ken Kesey’s book, One Flew Over The Cuckoo’s Nest, to bucolic settings with rolling grounds and open space taken from former private estates.
Treatment will differ, too. Some, in my opinion, are less than humane; others are more enlightened in the way they treat their patients. By the way, my son soon learned that if you just wanted to be treated at the ER but avoid hospital admission, you simply have to say “No” when they asked you that first question about suicide and homicide.
Finally, services don’t end upon hospital release. Afterwards, one often has to arrange for outpatient care. Again, depending on where you find that care and whether your insurance (if you have it) is accepted is an issue.
I myself spent four years in analysis during this time in my life and I was very fortunate to find a good therapist. Financial help and support services from the state or federal government are difficult and time and effort factors are challenging as well.
6. What was the hardest part about working with the system?
As a parent of a son with mental illness, I encountered a lot of ignorance from providers in the system that caused a lot of psychological pain for me personally. In the beginning I tended to get angry from it, which didn’t get my son any more help nor did it endear me to the providers. Eventually I learned this, but I couldn’t believe some of the things that came out of the mouths of providers.
The state mandated that my wife and I had to submit to a series of interviews by a doctor, a so-called expert from a very prestigious hospital, first separately then together. I never dealt with such a rude, unprofessional, full-of-himself person before. He had my wife in tears. Decorum forces me to forego details. Afterwards I was compelled to write a letter of complaint to the state agency but little ever came of it until the end when the state caseworker and her boss were suddenly removed from our case without explanation.
- Did you feel supported by the system or did you feel services were all about “business only?”
Not a lot of support, especially in the beginning. It wasn’t so much that it was “business as usual”; it was more the indifference by some, and the self-righteousness of some people in positions of authority. It took a lot of persistence and forbearance to cope and deal with the system for the first few years. Today, 20 years into the journey, support from the system is better, but it took a lot to get to this point.
- Were resources offered to you or did you have to ask questions and do your own research?
Everything in the beginning was forced upon us with little or no choice. If it’s your first experience, coupled with all the swirling emotions you’re experiencing, you feel like you just have to do what they say, especially up to the point of hospitalization and diagnosis. Once released, you may get some documentation about available services to contact, but you soon learn that you have to do a lot of investigation yourself and not just accept what you’re told.
- How about your overall outlook on life, how has that changed?
I used to be person with a happy, optimistic, healthy, outlook on life. I had a good career. I had a good marriage and I was prepared to provide all the opportunities for my children to give them the best chances life. That all changed. Initially I was devastated and angry. The pressures that I endured were a heavy psychological burden. Setbacks were numerous and continuous. My work suffered and I eventually lost my job. Four months later I had a heart attack. Two strokes followed, thankfully relatively mild but still requiring hospitalization. The experience ruined us financially. My wife and I are still married but our marriage suffered as well… it’s not what it once was.
Only when I found a good therapist did I gain some semblance of normalcy. I have a self-help component in my book but I had to develop this on my own in order to truly survive. In his song “Against the Wind”, Bob Seger sings about “deadlines and commitments… what to leave in… what to leave out” and “I’m older now but still runnin’ against the wind”. That’s me. My book goes into much more detail, but I’d say that while I’ve pulled myself back from the worst, and I mean the worst, I’m not the man I once was. I’m clearly no longer optimistic about my life or my family’s. This is a life’s sentence.
However I’ve devised numerous coping mechanisms. I’ve developed a tougher skin. I try to live more in the moment and not think of the future or things negative. I can find good in people again and I can find personal shreds of happiness and I’ve learned to savor them. One that’s for sure: if one can learn to deal with such terrible circumstances, most other difficulties in life pale by comparison.
- The mental health system slights families in a lot of ways by not allowing the most important family members access to healthcare records or treatment information. For many families in the U.S., the parents or guardians are not permitted to access information about treatment without the patient’s permission. As a family member, do you feel you are a valued piece of the puzzle or do you feel you are treated with a long handle spoon?
In my home state, services are best before the patient turns 18 years old, the age at which point the state considers a person to be a legal adult. Up until then, access to records and participation is not only relatively good and transparent, but parents are encouraged to actively participate.
After the patient turns 18, the parent has less access to records and limited meaningful participation, especially in any decision-making process. Also, once the patient turns 18, the patient can terminate service and parents can’t do a thing about it. You have to potentially wait for the next disaster.
- Did you know that in some states in the U.S. a child who turns 14 or 16 can make treatment decisions and reject treatment? How do you feel about this?
Well, I think that’s outrageous. Even under the best circumstances and the simplest decisions, teenagers are notoriously poor decision makers. To expect someone at that age to know what’s best for them, especially in regard to medical treatment of any kind, is preposterous, let alone if they’re wrestling with mental illness. Parents need to be involved.
- Can you provide us with three things you think needs to change in the mental health system?
- Mental illness needs to be treated the same as physical illness by the medical establishment.
- Mental illness needs to be treated the same as physical illness by the insurance establishment.
- The young and the old need to be educated (perhaps “enlightened” is a better word) about mental illness. Education is not necessarily the same as enlightenment. I know many adults that are well-educated but still unenlightened… and parents pass their views onto their children.
- In a perfect world, mental healthcare, medication, treatment, and services would all be free. What is one essential thing you wish were free for your family?
Ah, a perfect world! Is this a trick question? [little joke] Of the list in your question, they’re all part of treatment and any one of them is ineffective without the rest. So a comprehensive treatment plan would, in a perfect world, include all those things. If the point of the question is specific to the financial burden (you use the word “free”), and I’m forced to pick one, hospitalization has been the most expensive financial cost and it can quickly ruin a family, so I’ll go with hospitalization.
I’d like to add that, if it were a perfect world, and I could wish for anything without a list, I’d ask for happiness and an end to all suffering that stems from the effects of mental illness on a family. However, it’s not a perfect world, and I’ve learned that my happiness is my own responsibility. Not easy, that takes introspection and work, but it can be done.
- What encouraged you to start a blog, begin tweeting, and sharing your story in social media?
As I said before I lost my job as a result of mental illness in my family, and shortly after that I developed serious physical problems that left me disabled and unable to return to my previous line of work. I tried several other things, even the most menial work, but no one would hire me because they said I was over-qualified. The only thing that I thought I could do, and felt I’d be good at it, and that I enjoyed doing it, was writing. I decided that I would write about subjects I was familiar with. To that end I’m on the cusp of publishing my book about my 20-year experience as a father that’s gone through a child with mental illness and another child that took his own life at the age of 14.
I’m well along with a second book, but it’s on a totally different subject unrelated to the first, but I’m still writing about something I’m familiar with, and I’m enjoying writing the second book very much.
- Tell us about your social media and some of the things you have done to bring awareness?
Twitter is my social medium of choice. With regard to mental illness I’ve used it on a number of occasions about my own experiences as well as about some of the high-profile cases in the media like the James Holmes case in Colorado and the Adam Lanza case in Newtown, Connecticut.
With regard to suicide (and mental illness because they often go hand-in-hand), my book, soon to be released, is about when my son took his own life and the definite influence from mental illness that contributed to his death.
I chafe particularly whenever I hear newscasters use the term suicide, as in “Xxx committed suicide”. There’s something about it when I hear it on radio or television that makes me feel like I’ve been punched in the gut again. I even tweeted several local and national network news people saying so, and that they should try to use the term “Xxx took his own life”. Only one reporter tweeted back and said he’d spread the word.
I also have my own blog on WordPress.
Ed, thank you so much for sharing your story with us today. Your story is such an inspiration as it details every challenge you faced, every barrier, and your hope for the future. When I work with clients, I often use what is called the S.E.L.F. model of Trauma Informed Care. S = safety (issues that could or did challenge your overall safety), E = emotions (how you deal with the situation and what you felt), L = loss (all of the losses you faced), and future (how you can make your situation better). You covered every component of this in your article. I’ve observed that it is very important for clients and their families to explore the SELF model or create a “trauma narrative.” Telling your own story not only strengthens you by reminding you of the steps you have taken, but it also reminds others that there is often a beginning, middle, and end to any painful situation.
I wish you well with your upcoming book!
For those of you interested in reading more about Ed’s book, check out my book review on anchoredinknowledge.com.
Stay tuned for tomorrow’s article on Personal Stories Week as I discuss a technique I use with client to help them cope with trauma and loss in their life.
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Photo by MLazarevski