I recently returned from an amazing conference/training. The Voices Project is partnering with Facebook and several other recovery minded businesses.
It was inspiring and energizing. I felt drawn to doing more work in my own community to prevent substance use disorder and to help those who are afflicted with SUD and/or mental health issues.
Since returning home (via a short camp vacation) I got started planning an event to Stop Stigma regarding mental illness and substance use disorder. #OurStoriesMatter
It is still in the planning stages but, it will entail recovery speakers, book signing, Narcan training and a resource fair.
I have given an interview on costs of treatment to vox.com, and I have started attending a family action group in our state .I look forward to sharing some of the knowledge I gained over the last 10 years or so. I hope to be a resource for families and a recovery advocate.
More to follow…
This movie was made by Riley, a high school student from Vermont. She made an award winning short version of the film and then transformed it into a longer more substantial piece.
As Sean’s Mom, I was asked to help with the film. Riley’s Dad was the ICU doctor who kept Sean alive the first night after his overdose. We weren’t sure of the extent of the brain damage but, we hoped he could get through the next 48 hours so a determination could be made.Unfortunately, the damage was severe. The transition to organ donation took place soon after it was determined that Sean have suffered brain death.
I really appreciated the compassion and care of the ICU team. So when asked I said of course I would help. I had no idea that the film would win awards or even be shown at a local cinema.
Of course, I wish I could have used some less stigmatizing language or paid more attention to my hair and make-up. However, it was filmed just a few months after he died and the emotions were pretty raw.
The real gift was I got to practice my story, or my version of Sean’s story. My husband and I presented Sean’s story a few weeks later to our city’s opioid task force. We have been able to testify at our local legislature. So much of this was possible because Riley,
took the time to encourage our story and perfect the message. Sean was a beautiful person, afflicted by mental illness. A disease just like cancer or diabetes, unfortunately because the brain is affected, many choices are self sabotaging.
Riley is generously making the film available free and to the public.
Guest poet Halley Kunen
Halley and I met through Tumblr blogs, at the time I wrote an anonymous blog about parenting a child with substance use disorder. I had only a few followers..luckily Halley was one. I have appreciated her wit, wisdom and earnest posts, poems and messages.
You’re Just A Marionette
I saw something in those eyes
that sparked in me something different from the first time
blue pools of Persephone
a hidden fire
not sure what you used it for
but I’m tired of hurting
a magician uses the wand in a special way
with the key of timing
and that’s what you did
sleight of hand
all the better for clenching the secrets
you kept from everyone
what I could make of your smile
the edges sewn up like a marionette
encapsulating a life
in one dimension pacing in an abandoned cubicle
that was your trip home
while in the other world your space was full
or at least it temporarily felt that way.
I remember you used to write
you know how to use words
to mimick the touch on one’s abscessed spine
how do you cut to the core
when you don’t know yourself
and you don’t say what you mean
and I plead you do
but my expressions go right through you.
I’ve only seen your daughter
a few times it seemed like time slowed down
because I wanted to know her
to understand you
she looks more like her father
but the traces of you are in there
And when she speaks
she is just like you
I don’t know how to explain it
or to prove this
like her sudden spurts of energy
like when something brings her joy
I just hope she doesn’t use her grin the same way
I pray that she’s more free
I pray that your traits don’t rub on her
like how your mascara pours off when you fake cry
and your lashes fall into the street
composting the scraps of authenticity that fall to the wayside
And sometimes I think if I could meet your daughter
for more than a split second
I’d get the answers
but I know that isn’t true
other times I pray for amnesia
but I learned so much from you
even if it includes knives
to destroy myself.
Al was Sean’s alpine ski coach, Sean wrote this draft as a public speaking project in high school. His performance was inspiring. As his parents we were so proud of his message and his gift of charisma. (I was always jealous of his natural grace in front of an audience.)
Sean loved Al, and Al helped Sean immensely in high school and even after, reaching out to him frequently.
As May comes to a close, I have been trying to come up with an event to raise awareness. I am grateful the idea came to me and someone suggested a great name.
I want to share “Our Stories Matter ” an afternoon event August 24th, Oakledge Park, Burlington Vermont.
Speakers will talk about their experiences with mental health and substance use disorder.
I am hoping to decrease stigma for people and those that love them.
I know sharing isn’t easy or even natural. It can bring awareness to the struggles people face, the burdens they carry that are too often shrouded in silence.
This event has been my focus this May, organizing, fund raising…generally thinking about it.
Now let us hope the weather cooperates.
Kim, Sean’s Mom
So the last few weeks have been exciting, rewarding and just downright surprising I was asked to participate in some activities and before I can even comprehend, I am being whisked away to a coveted recovery workshop in LV NV.
Becoming an advocate :
Start with a loss so insurmountable you can’t fathom an end.
Then begin to reach others who are similarly impacted. only through the bond of loss can you begin to float, As you find others on your path, you begin to feel less alone.
You begin to feel emboldened enough to say “Hey, not OK” my kid should still be with us, alive, maybe struggling, but still alive….
So soon a garage sale, a promise of a recovery event..
I am so beyond happy to see all this happen. However, I would never place all the wants in this world with the needs that are there. We need SCS, homes and unconditional care….
When Sean was about 7, while visiting my Dad in Florida, he attended a study course taught by my Dad at his church. My Dad was a Methodist minister. He was astonished by Sean’s interest and knowledge of Jesus and the bible. For a little while, I wasn’t sure Sean would agree to come home with us.
In later years, when Sean was homeless, poor and struggling, he was still one of the most popular people I have ever had the pleasure of walking a street with. People came from all over to hug him, shake his hand or “pound it”. It was as though he had a life and following, I couldn’t imagine. Even though by all practical measures, he didn’t have anything. No home, often no money, rarely no job. ( he was easily and frequently hired, the jobs didn’t always last) He had a charisma that was difficult to quantify.
Sometimes, I felt he was too special for this world. He was like a prophet. He preached love, kindness and peace. He was a beautiful hippie in every good way.
I do think his presence on earth was not in vain. He was here for a reason. His message was meaningful and it still carries.
This passage reminds me of Sean. I think of Jesus of a prophet. Interestingly, as I age, I treasure all the messages and teachings we have from our loved one’s who have passed. They were prophets too.
The Boy Jesus in the Temple
42 And when he was twelve years old, zthey went up according to custom. 43 And whenthe feast awas ended, as they were returning, the boy Jesus stayed behind in Jerusalem.wHis parents did not know it, 44 but supposing him to be in the group they went a day’sjourney, but then they began to search for him among their relatives and acquaintances,45 and when they did not find him, they returned to Jerusalem, searching for him. 46 Afterthree days they found him in the temple, bsitting among cthe teachers, listening to themand asking them questions. 47 And all who heard him were amazed at his understandingand his answers. 48 And when his parents1 saw him, they were astonished. And hismother said to him, “Son, why have you treated us so? Behold, dyour father and I havebeen searching for you in great distress.” 49 And he said to them, “Why were you lookingfor me? Did you not know that eI must be in fmy Father’s house?”2 50 And gthey did notunderstand the saying that he spoke to them. 51 And he went down with them and came toNazareth and was submissive to them. And hhis mother treasured up all these things in her heart.
I treasure so much of Sean in my heart.
Easter marks the resurrection. For those of us who have lost children. We identify with the loss , the crucifixion. Unfortunately, there is no resurrection. Our kids don’t come back to life.
So we hope for signs. Sean is with his Grandfathers. His paternal Grandfather’s birthday falls on Easter this year. They never met on Earth but, were very similar. Both were kind, intelligent men, with a sense of loyalty to country and family. Both had birthdays that could fall on Easter. Sean’s Grandfather died at 54, a heart attack, maybe hastened by alcohol. He was accomplished, very hard working.
Alcohol takes years to exact it’s toll, fentanyl takes just a few minutes. So, Sean was gone at 27.
Today, driving from a family visit a beautiful rainbow appeared.
Thank you Sean and Grandpas, we miss you.
In Vermont we have faced a controversy surrounding possession of unprescribed buprenorphine. Many have advocated for looking the other way when someone has a few strips in their possession. As Sean’s family, we are in favor of decriminalization of drug possession. We favor rapid treatment on demand, screening for OUD upon arrest. These measures are more likely to help, not harm.
The criminalization of possession is frightening. This puts more power in an officer’s hands, and less in a judge’s. I want our family members to have access to life saving medication, if they aren’t ready to make to commitment to treatment, yet.
That being said, the real decrease in diversion will be rapid access to treatment. Already, once MAT was instituted in our corrections facilities, the “price” of buprenorphine plummeted. If people can access the treatment they need in a “safe” treatment home, there will be less need for diverted strips. This is what we all want. Treatment whenever a person desires it, at a treatment center or Emergency Room.