Author: for-kindness

On Birthdays..

Last week, Friday, was supposed to be Sean’s 29^th birthday. It was a hard day, as expected. It is difficult to not envision all he could be doing with his life. He seemed so close to successfully dealing with his mental health. He was working, close to having enough money to get an apartment of his own. When he died, he had 400.00 on his bank card. Which if you knew Sean…., that was astounding.

We have a beautiful voice message from him the day before he died. We made plans to have dinner on that fateful Tuesday. We were going to meet up, share a meal. I was calling him at the point he overdosed. The phone call couldn’t rouse him. I called again, and by then he was in the ambulance.

So, I can’t help but, think on these birthdays and anniversaries, what if the Narcan had worked, what if they had more than one dose on hand. What was he using? What did he think he was using? Cocaine? Heroin?

These are the questions that will never be answered. His friends have weighed in, overwhelmingly, not aware, that he may have relapsed with opiates.  They say he went into the bathroom, to get ready to meet up with us for dinner.  He said he would never go back, that was years in his past. Too many of his friends, had died from overdose, he was not going to let that happen.

Were the needles his? Did the scene get “cleaned up” as the police suggest..

This is opiate use disorder is a powerful shackle, not easy to fully break free from. Maybe he was excited to be having a day off and decided to celebrate, spend his paycheck..

We can’t know the answers. We can celebrate the time we did have with him. The four years after the months lost in the Bronx, when we thought he was lost forever. How he survived that time, it was a miracle.  For better or for worse the years that followed were a gift. The time he spent in jail, in the last year of his life, was a time of reconciliation. Time we needed to reconnect. Time to see us, his family as on his side. Time for us to learn how to love him disease and all.  The last month, we connected in spite of his circumstances. That was a present, in retrospect, so soften the blow.

He has left us with beautiful gifts, a treasure chest of memories. He left us his poems and his letters. The cards from the last year were so heartfelt and so moving. He even left us a 15 page diary. Someday, I hope to be able to get through the diary, which he titled if “For my Mother, for all the sleepless nights” The story of Liam Blake. (We were going to name him Liam, I was worried that the name was too unusual, I think he would have liked it better).

Someday, the memories will outshine the what ifs, not quite this year, not yet.

January 28, 2014 original writing by Sean Blake

What a Long Strange Trip it’s Been…

“Desperation is the raw material of drastic change. Only those who can leave behind everything they have ever believed in can hope to escape.” –William S. Burroughs

It is like any other evening on 183^rd street.  The Bronx is home to many types of people, hard working immigrants, young Fordham students, old Irish and Italian New Yorkers. It is also home to the morally bankrupt and spiritually disenfranchised, I would put myself in this class.  I’ve been homeless, selling stolen property, “Boosting” (stealing/shoplifting), and mainlining large amounts of cocaine and heroin for the last 4 months.

It is July 7^th 2012, a warm summer night in New York City. My leg hurts. I find myself behind a dumpster with a 1CC syringe two bags of brown and one of white, these colors I’ve come to know.  These colors define my very life, “you are what you eat” and I haven’t eaten anything in a day or two, except drugs.  I mix the remainder of my stash in a sickly concoction and blast off. No idea this would be my last time.  My heart races, my ears ring and my problems melt away.  The crack wears off quickly and I’m left with an intense mellowness. Bliss. Time to go to work.  I’m in the same situation; broke, high, with nothing for the damn morning.  While heroin withdrawal is not an appealing option, but going into the lovely island of Manhattan and filling some bags up with merchandise at the 24 hour Pharmacies and walking out the door sounds like a great idea.  Sick, Crazy, Desperate, I’m all these things and I’m getting on the D train.

I start on the Upper East Side, my route is picked out. I’m going to walk down to Hell’s Kitchen where the bodegas need to fill their shelves; soap, Advil, shampoo, and deodorant.  Yes if you’re in New York and shopping at a corner store your probably buying something stolen. I probably stole it. But, I must put my ego aside and get back to the story.  So I hit a CVS, a few Duane Reade’s and a few Rite Aids. No Problems. No Questions. I’m a cute white boy shopping around.   I wait for the right moment and walkout. I have two bags filled and am on 50^th in Midtown a few blocks away and I know I’ve got enough. My leg hurts.  I walk past another Duane Reade and want to grab a little more. “Just a little more, a few more dollars equals an extra bag.”  I walk into a store at 1am with black bags full of stolen goodies. Sick, Crazy, not so desperate now. I have what I need but there is no off switch.  Drug addiction is a belly that’s never full.  I walk downstairs grab a few boxes of dove soap and turn to leave. The Stores empty and something feels wrong. An itching sense of suspicion and a glimmer of darkness, “probably just the drugs.” I exit the store to be tackled by 7 foot tall African, The store manager holds me down until the NYPD arrives. I’m cuffed and in the car, tears begin to drip from my eyes and a glimmer of who I used to be breaks free from the corruption a despair only to fade when we get to the midtown community court.  Then the monster comes out just to keep me safe. A handful of interesting folks in the back of the police station with me, two men in suits (businessmen), a boss and his employee had a dispute, the rest of us junked out heroes of the street. I get processed and put in the back for court the next day ROR (release on own recognizance.) Is what I’ve heard all the other times I’ve gotten caught.  It’s just shoplifting. I get some food and lie down on the hard wooden bed, if you can call it a bed. My leg hurts. I finally take a look to see an abscess the size of a golf ball on my ankle.  I should go to the hospital when I get out. I probably should stop doing drugs if this is what my life is. These are the thoughts that follow me to sleep.  I awake dope sick singing a different tune. I need out now and really need a shot. Aches all my body, cold as can be, my leg really hurts.  The meeting with my lawyer is bad. That same really I had the night before is crawling through my head along with the start of a detox I don’t want to have.

I go before the Judge, she’s pissed. I have several open case of petty larceny all over the city and she doesn’t ROR me. “1000 dollars bail, Mr. Blake I’m turning you over to the Department of Corrections.”  My Heart sinks in my chest but for the wrong reason, not because I’m going to jail, because I’m not getting high today. A DOC guard asks me “if I want detox” of course I say yes not realizing I won’t be going to the tombs (Manhattan Jail) I’m on a bus to C-95 Anna M. Kross Center (AMKC) RIKER ISLAND.

My first few hours are spent in a pen full of New York’s worst. My leg hurts. Fear of losing my foot leads me to pray “God please don’t let me lose my foot, God please don’t let me lose my foot” mid-pray I realize how selfish I sound and I change my pray.  “God I’m scared, tired but I’m not alone, please show me my path, whatever it is.  Whatever happens to my foot it is your will what happens to me next is in your hands. Thy will be done.”

I’ll end the story here, I would spend the next 3months on Riker’s Island, I didn’t lose my foot. I don’t do drugs anymore and I’m currently back in school writing a story of where I came from.  I still pray but it’s a lot simpler today.

“God, thank you for teaching me how to laugh again, but don’t let me forget I cried once.”

• (This story is dark, I did not right it to seem bas ass, cool or different. I wrote because it’s the one day I could write 3+….pages about no problem.)

Jan 30^th, 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.

Prevention 2019

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.