Jan 30th, 2019
Dear trusted public servants:
I appreciate the opportunity to share some of my experiences as a parent of a child with bipolar disorder. I know there are many opportunities for growth as a state in our approach to people with mental illness.
Close to thirty years ago, my husband and I moved to Burlington where I could begin residency in Ob/Gyn at UVMMC. Our son was 3 months old. We choose Vermont because it seemed to be a good place to raise our family. Lots of outdoor activities, and a focus on health and wellness.
We did our best to engage our children in tennis, hiking and skiing as a family. Soccer, lacrosse, football as team sports. We were relieved when our oldest son, Sean, showed little interest in drugs and alcohol in the middle school years.
What we didn’t know, was how Vermont is ranked amongst the highest states for teen use of alcohol, marijuana and cocaine.
In Sean’s junior year in high school he began using high level THC products, oils that were vaped. There was no tell-tale odor of marijuana. His mood disorder, later diagnosed as bi-polar depression, exploded. He went from being co-captain of the varsity alpine ski team to barely graduating.
We struggled to find adequate help for his mood disorder. He received substance use disorder treatment but, not medication for his mood disorder. However, without marijuana, he stabilized enough, to enroll in the Navy. He completed basic training and submariner school training.
Our family didn’t receive much help. When I might confide in a colleague, sometimes I would be told “well I’m glad I don’t have that problem”. Many were supportive but, the few that weren’t made it difficult to cope. I feared the stigma and it’s effect on my professional career. We, finally, found much needed support and assistance through Al-anon and NAMI family support.
We developed a unique code for messaging. My husband would text if there was bad news, page if very bad news. We both became experts at compartmentalizing. One day the page relayed the sign for bad news. I took the call in my office, our son had attempted suicide and would be very likely discharged from the Navy. This occurred soon after he resumed using marijuana.
After his discharge we sought care for him out of state, there were no facilities for young adults in Vermont at the time. I was worried about the stigma, for his future, if his medical information was available in PRISM (the hospital EHR).
Sean received care for just over a year in California. He moved to a facility in Pennsylvania in January to be closer to home. He relapsed soon after discharge. Instead of sending him to rehab, he was given a bus ticket to NYC. He was missing for 3 months. Finally, after multiple arrests for shoplifting, he ended up a Riker’s island
Sean received some of his best care at Riker’s Island. A terrible place if you ever visit. However, he was diagnosed with bipolar disorder and had a treatment plan set up. It was an opportunity to intervene in a manic episode, treat his substance use disorder and care for a life- threatening infection.
I didn’t confide in anyone, with few exceptions. The support just wasn’t there like it might have been had my child suffered from diabetes or cancer. It was a very difficult time of my life. I think Sean was hospitalized at least 15 times.
Fast track a few years later, Sean after some relative stability has another manic episode. He is found in the street one night by BPD. He is psychotic and delusional. I go to find him in the ER, I explain that he has a bed at Brattleboro lined up already. Yet, he was already discharged. Unless you are homicidal or suicidal, you can be released. There is very little parents can do to intervene in their child’s care, if they are adults and not showing SI or HI. Some weeks later I called the police when Sean broke into our home. My husband was out of town and I feared for the safety of our younger son. If a there was a way to have Sean held with a mandatory mental health evaluation, I would have proceeded that route. I wouldn’t have been compelled to call the police.
We tried to reverse the charges but, once the criminal justice system was engaged there wasn’t much we could do. We tried, unsuccessfully, to reason with the DA.
Eventually, Sean landed in jail. He failed mental health court. As a family we were hopeful, that like at Riker’s, he might get some evaluation. In the year that he was in jail, he never saw a psychiatrist. He was taken off his prescribed bipolar medication. In fact, his PO sent him to Valley Vista specifically to receive an evaluation, however, the psychiatrist never saw him. He was released from jail, without his medication.
There is a video of Sean, months before he died asking for better mental health care at Saint Jay work camp. https://www.youtube.com/watch?v=ZBoPSQU3ZzA
After release, he was untreated and manic. Despite having an offer of one year’s treatment, in exchange for cooking for the facility, he instead asked for his tent and took a job at a local restaurant.
He died 38 days later. He used a substance, thought to be cocaine which turned out to be 100% fentanyl. He died with fentanyl, marijuana and alcohol in his system.
I know that Act 153 should assist with medication. This is a huge step. However, I think our inmates need mental health care on par with medical care. We need a psychiatric evaluation with every intake. We need continued psychiatric care available.
I wonder what more we can do to provide mental health care to our citizens and inmates. How can we help parents intervene before our kids get caught up in the criminal justice system? So many in people in our prisons, have mental health challenges. An occasional AA meeting isn’t enough. What supportive housing is available after release?
Our son never hurt anyone, he was locked up for 5 misdemeanor charges. It is a failure that he didn’t receive basic medical care.
Last year our family worked on reducing stigma and shame for people and families affected by substance use disorder. The stigma prevented us from getting the help we needed for ourselves and our child. If all our kids were being consumed by cancer or a viral illness, there would be outrage. People would demonstrate for a cure. There would be support for families, not just in church basements but, at work and in the community.
I helped a little in the realm of treatment, by becoming a prescriber for suboxone and began part-time work with a local mental health agency. I majored in Psychology in college and have always had an interest in mental health. In my general field, there has always a been a mental health piece. It not very different from general medical practice to counsel a person with a substance use disorder. Not that long ago, I had to convince my colleagues that SSRI’s were helpful for depression. Depression wasn’t a mental failing but, an actual disease.. sounds familiar doesn’t it.
Luckily, all the years of living with Sean taught me about what works and what doesn’t, I was able to develop boundaries that loved the person despite the disease. Also, how to set limits and have a good sense of boundaries. My BS detector is finely tuned. All this means, is I can provide support and care without enabling. I don’t need a UA to tell me how a patient is doing (though we definitely do use them)
Looking back on the year, I am incredibly overwhelmed by the supportive community that has read our blog or followed our Instagram. It has been a helpful outlet for all the grief and extra energy. Now, if I could somehow translate that energy into cleaning up the basement….
As the year 2019 approaches, I hope to continue to work to support people and families with substance use disorder. I plan on continuing work with treatment. I would like to work more on prevention.
I know we need to treat people with this epidemic, broaden our approach and improve harm reduction. I feel we also need to look hard at where the mental health of our children has gone awry and what can we do about it. Suicide and substance use disorders are affecting our kids at alarming rates. Our life expectancy is decreasing.
I don’t have the answers but, I am looking for them. I see the fear and concern in the faces of the parents I know in the community, my patients of young children at my Ob/Gyn office. How do we stop this from happening to my kid.
I am traveling to Iceland to attend a conference on prevention. I look forward to being able to bring evidence- based programs to our state. I am impressed that the programs target parents and accurately asses what activities correlate with decreased substance use. Clearly, “Just Say No” doesn’t work.
When I look back on what happened with Sean, I think the biggest issues he faced were bullying and undertreated mental health. As with most people affected by substance use disorder, Sean was a bit different from other kids. If your child has big ears, get them fixed. If your child is very short do the growth hormone. We shouldn’t have to do these things to our kids. However, our society prizes wealth and good looks and everything superficial.
Sean’s mental health was adversely affected by high potency THC in the form of oil. He said over and over that he thought it helped with his bipolar. What we witnessed was the opposite. The drug fueled mania and unsafe behavior. I have worked with like-minded physicians to delay commercial marijuana. I am fully in favor of legalization and decriminalization (of all drugs for that matter). A few have voted a Vermont Medical Society resolution and lobby to prevent commercial stores.
I know this is a very touchy subject, I have no problem with adults smoking normal potency weed. I do have concerns about the high dose oils that my son used. To give the idea that substance use is safe is dangerous. We have enough microbrews and wineries, tobacco advertising.. we could do so much more to provide health and wellness to our children.
I think we failed Sean deeply with involvement in the criminal justice system. We pressed charges one time after multiple thefts, vandalism and threats. We tried to have the charges removed but, once in the system that didn’t happen as we
had wished. We thought mental health court might help, we were out of money and patience. However, the criminal justice system has no ability to help people with a disease.
“The Drugs are in Control” by Sean Blake 2014
Welcome to the 21st Century. Any technology issue you have I promise there is an app for it. Any other problem there seems to be a drug for that. We live in a society where the prescription of psychoactive drugs is becoming an epoch on the annals of psychology. We have ads for SSRI’s on the television. A large percent of students cram stimulants into their mouths as part of cramming for an exam. Drug use and addiction are at an all-time high right here in the State of Vermont. Why is all this? It is the over prescription of these drugs and it is the over and false diagnosis’s of ADHD running through young adults and children.
“At many colleges across the country, the ingredients for academic success now include a steady flow of analeptics, the class of prescription amphetamines that is used to treat attention deficit hyperactivity disorder.”(1) ADHD is a disorder that is marked with significant problems of paying attention, hyperactivity, or acting impulsively. Its main drug treatment is a stimulant know by the brand name Adderall which mostly Dextroamphetamine (dexedrine) it is used to increase focus, memory, and intelligence. It makes you smarter. The number of people in North America on the Adderall and other drugs like Ritalin is astronomical in comparison to other countries. Putting kids on speed sounds like the job of terrorists or warlords not pharmaceutical companies. When I think of Amphetamines what comes to mind is Nazi tank driver, tweakers build stuff out of garbage and orgies. But now it seems almost the cool thing to do take an Adderall and go study for your exams.
The increase in the diagnosis of ADHD and ADD mark I believe mostly false diagnosis of kids trying to get on drugs to help them in school “As many as 20 percent of college students have used Ritalin or Adderall to study, write papers and take exams, according to recent surveys focused on individual campuses. A study released this month by the National Center on Addiction and Substance Abuse at Columbia found that the number of teenagers who admit to abusing prescription medications tripled from 1992 to 2003, while in the general population such abuse had doubled.”(1) This is a problem that stems much further than just college students trying to get ahead. The over prescription of many medications has lead to these drugs being more available for people to try and not only try but try again and maybe even get hooked on.
Right here in Vermont we are faced with the largest amount of opiate addiction ever from Gov Shumlin’s state address “In Vermont, since 2000, we have seen a more than 770% increase in treatment for all opiates.”(2) “What started as an Oxycontin and prescription drug addiction problem in Vermont has now grown into a full-blown heroin crisis.”(2) Oxycontin is a powerful painkiller that started being manufactured and prescribed to people with chronic pain. It works maybe a little too well and a street market of illegal trade of the drug took off in the suburban and rural America. No one is going to do heroin they teach us in health class how bad that is but heroin in pill form made by a lab was a social exception to the junkie realm of narcotics, needles and AIDS and William Burrows. The illegal drug trade of this very dangerous narcotic took off as more and more prescription were written so much so that the medication need to be adjusted to be impossible to smoke or crush and snort. That was in 2008 since then the number of people on heroin as skyrocketed. In my opinion it was cause of the removal of the street drug Oxycontin and the number of people that have now have used it maybe even got addicted to it have switch to that deadly thing that they would’ve never gone near when they tried Oxycontin.
SSRI use and SSRI prescriptions have been on the rise since the 1990s. If you have an eating disorder, If you have depression, if you’re an alcoholic, if your Bipolar then the first drug they will want to put you on is an SSRI. SSRI or serotonin-specific reuptake inhibitor acts like a cereal dispenser at a hotel’s continental breakfast. Imagine your serotonin is the cereal, there is a bowl waiting for cereal. That bowl is the space between your neurons. It is filled by the SSRI at certain times and not filled at certain times. The point is they regulate serotonin. Unlike MDMA (similar to Adderall) which is like would be like never ending cereal in that bowl or too much happy. SSRI’s make you just happy enough. I don’t believe they are the best treatment. For example May 1999 Archives of General Psychiatry, Andrew Stoll, M.D., used fish oil in a study of 30 manic-depressive patients. Sixty-four percent of them that took 10 grams of fish oil per day for four months showed improvement in their symptoms. (3) Similar studies include increase exercise can greatly reduce depression. It’s just another drug that is over prescribed and it’s a drug you maybe on for life same with Adderall and Oxcontin. Someone is making a lot of money of all this and we just have more drugs. More drug addicts and fewer solutions to big problems.
I don’t believe drugs are the answer to a lot of these cases. Some cases no doubt yes. All these drugs I mentioned above work, I just think there is a better answer I don’t know what it is but it’s out there and that’s what I’d like to see future psychiatrists and psychologists working on. New alternatives to medication because when you flood the country with drugs the results are not great as I stated above. Thank you for reading and I guess I’ll leave you with a question. Are the drugs in control?
- The Adderall Advantage By ANDREW JACOBS Published: July 31, 2005 The New York Times
- Shumlin’s 2014 State of the State Address
- May 1999 Archives of General Psychiatry
For several months in 2016 and 2017, Sean was at the St. Johnsbury Work Camp. Though he was facing only misdemeanor charges, he still ended up in jail for a significant amount of time. He had not been able to complete mental health court or sober living options. Unfortunately, Sean was taken off his medication for bipolardisorder while in jail. He never saw a psychiatric provider. When he was released in 2017, he was in a manic state. He didn’t want treatment. He did, on his own see his provider and tried to get back on medication. Sadly, it wasn’t enough. Unfortunately, he died 38 days after release.
This video shows Sean asking for more mental health care services. It was filmed 6 months before he died.
This is one of Sean’s last poems, written while he was incarcerated in Saint Johnsbury Vermont. He has a book of letters and poems that I haven’t even started to go through. However, at some point in time his work will come to end, no more photos or poems. That is the reality. Overdose and deaths from substance use disorder are preventable. Young people like Sean need treatment for a health condition just like diabetes or cancer.
It has been a tough few weeks, sometimes the grief just gets worse. The holiday without out you, the birthday cake not purchased. Then again, this time of year has always been hard. Summertime and bipolar disorder are bad companions, the addiction fuels the mania and vice versa. All night campfires and waterfront gatherings….Everyone tells me this anniversary date is rough, the shock is gone and you really, truly feel the loss. Tim, Ned and I all feel like life is quieter now, less bright and colorful without our charismatic, witty, life of the party. Complicating everything is the poor health of Tim’s mom , Sean’s beloved Grandmother.
For 10 years we did all we could to get Sean the help he needed. Some things we did well, some not so much. We did the best we could. Like all Momma Bear’s with a struggling child, I became quite co-dependent. I became an expert in mental illness and addiction. Yet, nothing I did truly made a difference. So, losing Sean meant a losing a battle our entire family and many friends had been battling.
So, when I get in a negative state of mind I try to build a gratitude list.
I am grateful for all the support, people who immediately came to our aid when Sean was admitted. The hospital visits, texts, calls, all meant so very much. Sarah, Dawn, Kristin, Dale, Patricia, Pat and Greta helped immensely. Daniele insisted on bringing food when I couldn’t think of eating, that we totally ate, and gum-the best. Everyone who showed up at our doorstep, often with gifts of food. I would just say I have the best friends you ever could have. The continued calls, texts, messages, invites..it helps. If you have a friend grieving stay with them.
I am grateful to have a job I love and awesome coworkers, the joy of being mostly good at something is a constant reminder to take better care of myself and to keep moving forward. Grateful to have a little extra time off now.
I am grateful for the strong love of Sean’s friends, they sustain me. I admire any young person in recovery because, I know how hard it is. I spent many a late night talking to Sean and hearing how hard it was to maintain sobriety. The last day I saw him, he cried “It’s just so hard”, I wanted to take him to the hospital that day but, he refused. He wanted to go to work and not let his employer down. I believe it is possible and a fast track to an amazing life if you can stay sober. So many young people have told me they are staying clean because of Sean’s death.
I am grateful for the ER and ICU staff for keeping Sean alive long enough to determine the damage to his brain. Then the respectful discussion regarding organ transplant, which Sean would have wanted.
I am grateful for the website. Sean had a mix tape we often listened to. I couldn’t understand the lyrics. Sean said “Mom it’s me J**kie For Kindness “ So, I don’t use or say J**kie, so it became For-Kindness. I appreciate the opportunity to write and share Sean’s work. Now that I have some more time, I look forward to being able to go through the remainder of his work.
I am grateful for the passage of several legislative acts. One bill H 874, in particular, presented by a legislator who knew Sean from jail. He presented a bill to ensure that people are not uniformly taken off their psychiatric meds upon entering jail, I am guessing to save money?? Sean was released in a very manic state, he went back on his medication and was trying to get his mood stabilized before he died.
S166 was passed to allow a substance abuse assessment on admission to jail, and to provide MAT for opiate addiction if needed. I am not sure if Sean would have taken MAT but, he could have used the counselling.
Again, many were moved by our story presented at the Burlington Comm Stat meeting to press for passage of this bill.
We are very private and to share Sean’s story was very difficult, we were asked by a mental health counselor, Jackie Corbally, who knew Sean from one of his stays at Maple Leaf Farm and it seemed right. Many have an illusion that substance abuse doesn’t or can’t affect them. This disease does not discriminate; race, income, education level.. all can be affected.
We were also asked to share his story with a student, whose dad Dr. Gil Allen, kept Sean alive on admission to the ICU. The film won an award and Riley Allen donated the prize money to NAMI for the Family Support Group.
I am grateful that so many of these changes were begun or helped by people that knew Sean and wanted change because of him.
Money donated to New Found Life Treatment center funded scholarship for 3 students. Our family is forever in debt to the family programs at New Found Life and Hazelden/ Betty Ford, these programs saved us. These programs were offered at no cost to help families.
I am grateful for the new programs at Safe Recovery, particularly Fentanyl Test strips. I think many have noted that Fentanyl has become a pivotal point in this epidemic, the numbers are skyrocketing. To the general public, the numbers aren’t known. The press doesn’t report them. Many people aren’t able to afford an obituary, or aren’t able to note a cause of death, as it takes 10-16 weeks. We didn’t put much in the paper as we didn’t know. Sean’s test for opiates was negative, so we didn’t want to put into print our speculation. However, the death rates are 1-2 people a week, just in Burlington.
I remember in 1988, that as a new med student at the County, in the lock up ward, HIV was very new. I took care of a young African American with HIV. He needed dressing changes q 8. I tried to help him, he didn’t want me to get HIV so he insisted on doing most of the dressing change himself, I am still in awe of his courage. Anyhow, I hope we soon see overdose like HIV, a terrible disease that doesn’t improve by blaming the victim.
I am not so grateful that Sean didn’t get the care he deserved. I will fight for better substance abuse prevention and treatment, for mental health care parity, and for criminal justice reform. Many people tried to help Sean, very caring hard working people. It’s the systems that need change. Many people I know are still struggling for housing, health care and medication.
I read this t the sunset memorial on Aug 1st, written by Sean upon hearing of my Dad’s death. They were very close.
“Wish you were here” played on the radio.
Thank you for teaching me Life is a Show.
Act with love and creativity.
Play music, read often. Laugh. Cook good food, speak with integrity, tell stories.
All the things I learned from you!!
Your wisdom taught us all. Your love was felt from this whole family. Enjoy your next life and new
Adventure, Because OH! Because the thing you taught the most, Never stop seeking. Peace and Love, Sean Blake
I am grateful, that while the losses were very profound, my Dad and Sean are together.
by Sean Blake
March 23, 2014
A man stood with a decision to make. To shoot an elephant or to leave this majestic beast to roam its new field. The man shot the elephant. What a dark tale about the death of an animal I really like. What a story that is about so much more than the death of an elephant. George Orwell’s Essay Shooting an Elephant is really about the struggle for people to conform to their society, to fill their roles that their culture gives them. I enjoyed Orwell’s writing style. I was completely in the mind of the young police officer. I have been in so many situations where I have made the decision of the masses because I was going with the grain of the culture around me. For example I was sales manager at a big and tale store. I got a lot of questions from my customers. Why do I work here? Why am I not big or tall? I had to put on a role every day at work of the skinny salesman that can sell clothes to big guys. I had to be extra understanding, extra nice and extra small. I thrived in an environment where most didn’t think I belong. A lot of it was all bullshit, “big guys need nice fashionable clothing too,” and “I’m just a good salesman” and “that looks great, how about a tie to match.” Humans are very good at conforming. I conformed and found acting every day a lot of fun. That may have been my favorite job I ever had.
Other than being disingenuous at a job, I have another example where lives were in danger. I was at a beach party. I was around a group of people drinking, having a good time and taking it a little too far. I didn’t say anything, instead I tried keeping up with them. That night ended with my friend blowing my car up and me getting charged with DUI. Gratefully, no one was injured. A true lesson for me, listen to your conscience and do the right thing.
I found the death of the elephant to be very cruel and dark. I have always been fond of elephants as I am of almost all animals. The suffering this creature went through really hurt my feelings, but again it speaks volumes to the character of the police officer. He didn’t even know how to kill an elephant but, he still tried his best. Shooting away from the elephant’s brain because he thought that’s where he should shoot. He continues to shoot the poor beast trying to put it out its pain and misery. Failing to kill the beast, this bit did not sit well with me. I felt the beast’s pain, I felt anger towards the man that shot it and I felt upset for the shooting and wish the man had just leveled his pride.
Pride is what killed the poor animal. Pride is a deadly sin according to some. To me it’s not that evil but it is a killer in disguise. Normally it just kills good vibes and peoples egos but in this story it kills an elephant slowly and painfully. It brings to life the problem of pride. “I was hated by a large numbers of people—the only time in my life that I have been important enough for this to happen to me” (272) the futility of this man’s pride is painted beautifully in this quote. Would it have really hurt the police officer if he had left the elephant alone? Everyone already thought he was a fool. He was still so prideful, even though everyone hated him, he still believed in his own importantace.
Overall this was a well written story that I found hard to get through because of the animal abuse. But like I stated above the killing of the elephant is really just a man trying to avoid to killing his pride. Is that not what nearly all of us do every single day?
The City (Animals on the wall)
I see the animals swirl on the wall.
Above there are none, only my falls.
To the front is a seahorse,
Parked on the door.
It feels like life is but, a bore.
It’s not mine, All this I sought.
Where the fuck is all the pot.
To my left, is a little sleeping cat.
Mahn.. I’m getting awfully fat.
But, the food feels good, when the drugs are gone.
Couldn’t it be, my lifestyle’s a little wrong?
Behind me are zebras, ready to stampede.
So I ran to the hills with a bottle of mead.
I’ve stolen so much, I don’t know what’s mine.
Going off to prison for quite some time out.
To my right is the walrus, up on his wave.
The curtain drops, I have finally caved.
I gave, gave away EVERYTHING but have it all and
I see the animals swirl on the wall.