Suicide. Sometimes that word alone is enough to provoke a sea of emotions in many of us. Either we’ve known someone with thoughts of suicide, lost a loved one to suicide, know a friend who lost someone to suicide, or hear about it daily in the news. Either way, the word itself holds so much meaning, so much emotion, so much hopelessness. The word itself is powerful enough to silence an entire room. The word has always held a haunting foundation for me. Even as a therapist I have trouble conceptualizing it, talking about it, and dealing with it. How about you?
Meet Penny Knapp. She is a mother from Canada, a kind Twitter friend of mine, who has shared her story with me during an interview about suicide. She was brave enough to discuss the loss of her 20-year-old son. Lets listen to her story.
Note: Ms. Knapp uses the word “suicided” as an alternative to saying “committed suicide.”
1. 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 the diagnosis?
- Our family experienced great traumatic stress & loss, unfortunately all too late as our son Nicholas was not diagnosed with any mental illness because we didn’t know there was a problem. Nicholas in my eyes, his mother, saw what I thought was normal for a 20 year old to experience in life. A career choice, relationships, jobs, finances. Nicholas showed his frustration in the human race as well as his relationships with friends, male or females. He shared those issues with his parents and 2 sisters. Our journey began May 19 2007 when 2 Police officers came to our door at 6:00am to inform us Nicholas had suicided. The most difficult part of this was that our lives were changed forever. The grief & loss, emotionally & physically were most traumatic. Our journey of grief began moments after we were informed our son had died, he suicided. What? How? Why? Speaking with some adults having an adult child with a mental illness and having some difficulties because of little influence by the parents on the adult child. The adult child will question the parent being honest & having their (child) best interest at heart over their (parent) own interest. This may not be the same experience with everyone, but it has been spoken of and most recent with my friend who has a 22yr old. A younger child dependant on the parent to provide care for them so there is greater influence by the parents on the child. When the child is younger, education and learning can take part. An adult child tends to choose what they want to learn from their parents.
2. What was the most difficult part of this life change for you and your family?
- Our son’s suicide changed our lives and our family’s relationship, within our family & friend’s relationships. That caused a great deal of stress and grief experienced as a loss again. Trust and authentic relationships were tested and a pass or fail resulted.
3. Did you see changes within and outside your family due to this diagnosis?
- We discovered a lack of services and support. Nothing was available and thus we experienced fear because of the risk we held. Survivors of suicide loss risk suiciding themselves due to the grief and pain of losing a loved one. I believe we were seen by outsiders as not being able to help and people feared of their own failure in supporting us. Friends and family moved on yet we were still grieving. Everyone else went on with life while our lives had changed. How does the old life integrate with the new life without tools and resources to support the new change?
5. How did you approach finding services within the system and was it easy or difficult? What was the hardest part about working with the system?
- The most difficult issue about working with the system was realizing the system was broken. How does a broken person get fixed using something that was broken itself but still existed in a working functioning world.
7. Did you feel supported by the system or did you feel services were all about “business only?”
- No, I did not feel supported at all until I suggested that I could start up or develop what wasn’t available. I soon found out no one believed we could do what we said we would do. We were then not supported by those that gave forth the recommendation. Everything was business and cold. Empathy was shown but that was the extent of it. I was often given reference to a name that was heard of and to go on line to find out more. I didn’t know at first what questions to ask, because I took any information home to research and soon found out there was always more to the information or the organization than what I was told of. I soon realized and was disappointed to find out there lacked support for survivors of suicide loss. I would only find general grief information.
8. Were resources offered to you or did you have to ask questions and do your own research?
- The first year after Nicholas died; I searched for and attend conferences and workshops put on by organizations 2-3hrs drive away. My daughter Melanie would attend as well because she had the same interest as I, to learn more about suicide and surviving the loss. We worked as a team, finding conferences, websites, books and speakers that spoke about suicide.
9. How about your overall outlook on life, how has that changed?
- My overall outlook on life sure had/has changed, drastically. I struggled with what I had believed in and had faith in because I guess I had never needed what I thought was available. I read about our mental health system and truly believed it was there. Well, it was there but I define it differently than they themselves and our government describe the organization. I and others feel more grief, more loss.
10. 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 parent, do you feel you are a valued piece of the puzzle or do you feel you are treated with a long handle spoon?
- I myself have not experienced the mental health systems policies, rules as others have expressed to me. In Canada parents are frustrated with the lack of communication between the health professionals, the youth and the parents. Parents have expressed their anger with not having any say in their youth’s process of handling, either in diagnosis, treatment or medications, which along with that is behavior of the youth. Parents have no rights is how they put it. Parents are trying to work with the mental health professionals to keep the lines of communication flowing to benefit the health & well being of their young adult. I am told there is disconnect and a breakdown in the system. This means everything when it comes to the outcome of treatment for the youth.
11. 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?
- I believe that parental involvement is mandatory for 14 to 16 yrs of age making a major decision regarding their health and well-being. I also think all resources and outcomes need to be shared with both youth and parents in order to make informed decisions by both youth and parents regarding treatment.
12. Provide us with three things you think needs to change about the mental health system?
- Up to date training should be mandatory.
- Access to mental health needs to be more readily available as well as a better defined meaning of our mental health system of what they actually provide and who has access to these services.Counseling should be free and available to all.
- The hours of 5am – 4pm need to change also. – Access to support during and after diagnosis, as well as if a death occurs; resources and support.
- Access to support during and after diagnosis, as well as if a death occurs; resources and support. The knowledge of the mental health system is lacking. I don’t believe the mental health people are current with the needs of the people. They live and base their work on past training. I see them living in their own little world of clients. No clear knowledge of who they are, what they provide, or who has access to that service. In the mental health world there are too many wasted dollars as there is no real accountability.
15. What are three things you think parents, family members, caregivers, and even grandparents need from the mental health system to cope with a diagnosis?
- Family, friends and coworkers all need more support; resources that fit and work well in each individual situation according to diagnosis and the environment to integrate the two. Availability and access to resources and support in rural communities. Equal access no matter the geographic area. More monitoring when keeping at home clients out of hospitals.
I am determined and passionate to provide survivors of suicide loss resources so no one grieves alone without some kind of personal sharing from other survivors of suicide loss. A person needs a sense of “its ok to feel this way” “its normal” “there is no real template to grieve a loss by suicide” here are resources from others and be gentle on yourself. Talk to others. Don’t silence anyone that shows pain loss hurt. Give a hug to show your there for them. Bell well. Its normal after a loss by suicide to have suicidal thoughts. Talk about it to someone who cares. You can get through this journey. I am here for you. I care about your well being.
Penny Knapp,Survivor of Suicide Loss, www.rememberingnicholas.ca
Biography: Penny Knapp
Penny is a survivor of suicide loss as well as loss of her eldest daughter, Laura, who died at age 4 of Tay-Sachs disease. Loss for Penny is very personal due to loss from long term illness & traumatic loss involving suicide. Penny has been a survivor by nature. Her journey in life has brought her to research, ask, contact, ask again and read everything possible. Penny says “the bank of knowledge must be filled with education and knowledge to be able to make informed decisions.” She has a passion to seek out, ask, search, connect to find out & provide those in need with resources. She has even produced resources after finding out there was a lack of survivors of suicide loss resources in her area. In August of 2011 the Ontario, Canada “Hope & Healing hand-booklet for those grieving the loss of a loved one to suicide” was published by CAMH. Penny approached them & asked if they would work with her to create “A Mother’s Story” which was written & now available free. July 2012 the 1st Canadian survivors of suicide loss resource DVD was produced & available free on the website or through you tube. Penny has started fundraising for a Children’s survivors of suicide loss resource DVD. She says ” it’s important for our children to know they are not alone in their grief, their pain journey.”Penny has had many stumbling blocks, brick walls, challenged persons & organizations & professionals that all have their beliefs, but through it all there is always light. Penny says there is always “sunlight that is a sign of HOPE to keep persevering forward to lesson the stigma & taboo of suicide, mental health & well being. “
Penny, thank you so much for sharing your story. It is always hard to relive our hurtful experiences and disappointments. But I’ve learned over time that those who can find meaning in their pain seem to come out the most loving, caring, and embracing people. Thank you.
You said 3 things that stuck out to me:
- Involvement of parents of adolescents 14yrs old should be mandatory. When kids are given the freedom to make decisions on their own without the involvement of their families, it can be very difficult for them to choose the right treatment or treatment itself. Most kids ignore treatment because they either don’t like it or don’t want to comply. This can lead to a host of difficulties leading to adulthood.
- Another thing you said was that resonated with me was that there is a lack of communication between health professionals, youths, and their parents. You are correct about this. This lack of communication is actually supported in some areas. Some areas strive to legally give young people as much control over their mental health care as possible, rarely considering the parents and the difficulties that can result from this “freedom.”
- You also said that professionals do not seem to be in tune with what “the people need.” Absolutely! This is another big problem. We have so many “professionals” fighting, competing, and arguing that there is no time or room (or even concern for) the people. This has to change. Ego must move over.
Again, thank you for sharing your story! Keep up the good work that you are doing educating others. I admire people like you.
Take care of yourselves, it’s important!