On June 17, 2011, 20-year-old Ontarian Sasha Menu Courey, no longer able to fight the daily torment of borderline personality disorder, ended her life. She was a student at the University of Missouri, competing on the swim team, until an injury and interpersonal conflict plunged her into a severe depression. Sasha's parents, Mike Menu and Lynn Courey, sent Sasha to the inpatient dialectical behavior therapy program at McLean Hospital in Belmont, Massachusetts, where she improved with treatment. However, when it came time to transition from inpatient treatment at McLean to outpatient treatment in Ontario, Sasha's mood plummeted, and she tragically completed suicide.
Determined to raise awareness about BPD and the dearth of available treatment, her parents started sashbear.org, a memorial website stating their mission to "make waves on BPD." They started the Sasha Menu Courey fund at Mount Sinai Hospital Foundation, with the money dedicated to expanding DBT services in Toronto.
I asked Mike Menu and Lynn Courey if I could interview them about Sasha's life and treatment, and they graciously obliged. Here are their answers.
1. First and foremost, what would you like for my readers to know about Sasha?
Sasha was vibrant, smart and talented. She was the life of the party in social settings whether with family and/or friends – her presence could not be ignored and will be forever missed. In one on one situations, she was always there to give advice. We were overwhelmed by how many of her friends had, at one time or another, received help from Sasha to get them through a rough time. In the end, it is bittersweet and poetic that only her heart survived, after all that was the essence of her being and it is therefore fitting that it lives on the body of another who is so grateful for the gift of life he received.
2. What can you tell us about the difference between BPD treatment in the US and Canada? How do you think Canada's single-payer health care system affects mental health care?
From what we have seen, availability and accessibility to affordable effective BPD treatment is an issue everywhere. In Canada, free state-run intensive BDP treatment programs exist in some locations (e.g. greater Toronto area), but they are still mostly inaccessible, plagued by long waiting lists. Access to private treatment is also available in Canada in some locations but the biggest issue remains the availability of qualified resources and their willingness to help those living with BPD.
3. What advice do you have for parents whose children are newly diagnosed with BPD?
Don’t give up. Learn as much about the disorder as you possibly can. There are good resources out there but start with a reputable ‘anchor’ site and go from there. For example, borderlinepersonalitydisorder.com has a resource centre that can be your starting point. Families can make a difference so consider yourself part of the team that can make a difference for your child. Even when times are tough always consider that you are in for the long haul and that the relationship between you and your child matters. Learn DBT and especially validation, get into programs like NEABPD’s Family Connections where you can learn these valuable skills, they will help you and your loved one.
4. How do you talk about Sasha's suicide with people? What have you learned about how to discuss suicide and BPD so that others can understand?
We don’t hold back. We believe we are not doing enough as a society to prevent suicides and that many are affected. We have been overwhelmend by how many people, after hearing our story, have come to us with stories of their own about a friend or a loved who also struggled with suicidal thoughts and/or died by suicide. At first we were hesitant to go into high schools and talk about Sasha’s sad story but we found that this story was powerful and got students (and staff) paying close attention to the rest of the presentation which is a message of hope about how BPD is more prevalent than most people think and how effective treatment DOES exist and how lessons learned from DBT can help everyone! What drives us is that we have seen how evidence-based treatments such as Dialectical Behavioral Therapy can truly make a difference, Sasha wrote in her journal while getting treatment at McLean Hospital that DBT was for her like ‘air to breathe’. We truly believe that teaching DBT-like skills in schools can help fill the coping-skills gap and save lives. This is why we are compelled to discuss suicide, so that others may not suffer through this tragic loss.
5. I've found that when people think of suicide, they tend to think of depression -- usually long-term, unremitting depression. However, the suicide attempt that almost took my life in 2001 was very much due to anger and impulsivity. How do you think these factors contributed to Sasha's suicide?
Sasha was definitely very depressed, especially after her failed suicide attempt in Columbia MO a few months earlier in April 2011. As my wife often said, after that attempt she was 6 feet under, her sense of failure and shame was excrutiatingly painful to her – her love life, social, academic, and athletic goals crushed. Sasha had unusually lofty goals for herself and her sense of failure and shame was deeper than we could ever understand. While she was getting better during treatment, she could not accept the realization that this would be a long process of recovery and the thought of needing to move her treatment with a new team in Toronto was more than she could take. From her journal it is clear that her suicide was planned well in advance but in the end impulsivity had a lot to do with it. While at the hospital Sasha told us she was ready to make the transition to treatment in Toronto and we believe her when she said it, but unfortunately it was too late.
6. I found that it took me about 18 months to really "get" DBT, to the point that I could incorporate it into my daily life. However, I had outpatient treatment, rather than inpatient, like Sasha. How much do you think she was able to learn about DBT in her time at McLean?
From an academic perspective her understanding of all of the DBT skills was very good. However, partly due to the residential setting and partly due to the relatively short amount of time she had with the skills, her practical knowledge was probably weak. Sasha was able to recognize which skills she needed in which situations and she was able to apply them with coaching from staff but that is far from knowing when to apply them seamlessly in the real world.
7. What would you like to see changed about inpatient BPD treatment? (Besides the cost, of course.) What did Sasha see as the assets and shortcomings of her treatment?
Boston McLean has made changes to their program as a result of Sasha’s case. For example, there is now a staff transition person (which is separate from the individual’s therapist) assigned to work out issues/concerns related to the individual’s transition to other treatment. Sasha had written in her journal that she could not understand how in the last few weeks of her treatment she was spending so much time (and money) worrying about the transition rather than concentrating on her treatment. From the financial side, they have opened a scholarship fund designed to help individuals with financial constraints to stay in treatment longer. We are continuing to talk informally with McLean about other areas -- for example, for individuals with lots of goals, to come up with a way of keeping the path to their goals alive in a positive yet realistic way. Also, we believe having recovered “graduates” come in and give a message of hope to those in treatments could be very important. While it is difficult for one to say “on the inside” that there is light at the end of the tunnel, hearing from someone that has gone through it can make a significant impact.
8. What do you think of the proposed changes to the BPD diagnostic criteria in the DSM-5?
Wow, not an easy read for us mere non-professionals. We are not psychiatrists or psychologists so we could not claim to understand the impact of the proposed changes. We do however, clearly see that in Sasha’s case the failure to diagnose her with BPD when she was 16, after her first suicide attempt, meant neither she (or we) had any exposure at all to things that would have helped us -- like DBT skills, because of the no-diagnosis, no-treatment rule. Given the vast number of people that are affected with mental disorders which are rooted in the difficulty in regulating emotions, we do feel strongly that the mental health system needs to do a better job establishing preventive, educational, early intervention measures to the broader population as well as to provide better training in school, as well as practical experience for mental health professionals so that they are able to effectively treat people living with these issues. We have to do better at reaching out to so-called difficult clients (e.g. people living with BPD) with more effective treatments. The ‘difficulty’ of the client is not extraneous to the disorder but rather an integral part of it, and one which we must be able to readily treat by applying evidence-based treatments that work (such as DBT vs. just plain CBT). The ‘client is not co-operating with the treatment’ attitude must be replaced by the ‘treatment is failing client’ attitude.
9. Was Sasha taking medication? If so, did she find it helpful? Did you see any difference in her mood and behavior?
Sasha was taking some medication while in treatment, mostly to stabilize her mood, but it was mostly about the treatment rather than the medication. She did not say to us or write in her journal whether she found this helpful. Her mood and behaviour was very volatile and on edge during her treatment due probably to the stress of what she was dealing with. Despite our DBT skills family training sessions we were often walking on eggshells when taking to Sasha for outings during weekend visits.
10. What has been most helpful to you in healing as the parents of a child who completed suicide?
You can never get over losing a child; you can only get used to it. We often say that although McLean could not save Sasha, they saved us, as we gained a better understanding of what she was going through. As painful as it is, sharing her story in the hope to bring awareness and make a difference for others in her name has given us a strong sense of purpose. We’ve had overwhelming support from family and friends, and especially all of the members of the sashbear.org group who took us under their wing and gave us the courage to make a difference in Sasha’s name – we would not be where we are today if it wasn’t for them. And last but not least, our love for our daughter Kayla and her support have meant the world to us.