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Amy Ho: Hey everyone!
So...it has been a minute! I am so so so excited to be joining you all again here on Anamnesis by MedPage.
Now for those of you that followed us during Season 1 and 2 -- I'm probably a familiar voice. But by way of introduction, my name is Amy Ho and I'm an ER doctor and lucky to be your podcast host.
So I love seeing patients as a doctor. I love everything about it. I love the interactions, I love the humans I get to meet and also work with, I love the esoteric part of the practice of medicine. But what I love most -- that drives me the most -- is the stories.
And that's why Anamnesis is such a special podcast here at MedPage because it's about the stories. It's really about YOUR stories. The word "anamnesis" is the title of the podcast, but it's also a Greek word meaning "remembrance," and it's now used in medical terminology meaning "a patient's account of a medical history." It also means "the remembering of things from a supposed previous existence."
And that's really our mission here: remembrance. To remember, to honor, to introspect, and to share the stories we have. And also share the stories that have been shared with us from our patients, and to, in turn, have remembrance for them as we share those stories and the impact they had on us.
This podcast is about showing these transformative moments captured in the stories we remember -- the ones that we hold for our lives as people -- and the ones that change us from who we are as clinicians.
Now in the past, we've actually always had a theme with three stories from three different storytellers. As our comeback though, we have something special for this episode, and we're actually just featuring one storytelling...one unified voice. But, our storyteller is going to share her own theme in the patients she sees. And we'll see it coming up next.
Bittersweet Holidays (8:57)
When Perseverance Pays Off (10:40)
Inspiring Others Through Art (12:47)
The 'Mayor' (14:32)
An Unexpected Package (16:24)
Never Forgotten (18:00)
Hosted by
Episode produced and hosted by Brendan Murphy
Sound engineering by Greg Laub
Theme music by Palomar
Michelle Jobes: I'm , a clinical research specialist at the National Institute on Drug Abuse (also known as NIDA), one of the institutes of the National Institutes of Health. I do a lot of different things in that role, but my favorite has always been working with people that are participating in our research studies. Several years ago when I was doing more research than I do now, our research looked at questions regarding the effects of stress and the environment on drug use and also what might make someone want to use drugs when they were trying not to, what we call "craving" in the scientific literature, although many of our participants didn't refer to it that way.
Ho: Michelle has a really unique perspective because while I think we've heavily focused as physicians and nurses and the others in the classic hospital and clinic setting on the patient and individual encounter -- and usually an acute problem -- her role as a researcher allows her to really get in depth with patients in a way that is thorough, and deep, and comprehensive to their lives and their conditions. And she gets to draw conclusions that aren't just anecdotal to them. Here, she shares more about the perspective she takes and the stories she's collected on all of that from a really special, really vulnerable population -- those affected by addiction.
Jobes: The type of study we employed to do this work is called a Natural History study, one in which we provide the gold standard treatment for opioid use disorder -- in this case, we'd provide methadone or buprenorphine along with counseling, social support, and case management -- as well as collect data on their day-to-day lives to learn about what's going on in an attempt to learn more about why and how to intervene. To do this, we provided our research participants with Palm Pilots or PDAs originally and eventually smart phones so that we could learn in real time what they were up to throughout the day and learn about stress, craving, and drug use as those things happened. They used these devices to collect data on when they felt most stressed or another strong emotion and which event had triggered that emotion. We know people's memories aren't always accurate and they may not be fully aware of things that may amount to triggering drug use, so this method of data collection allowed us to collect the information prospectively, but also gives us the ability to look back to see what had happened before an event like using a drug after an extended period of time without using any. This way, we're able to gain a snapshot into someone's life on a regular basis to try to determine what really is going on in and around the desire to stop using heroin or other opioids and using them even when you're trying not to.
It's easy to think about recruiting people to be research subjects and staying focused on the research questions at hand when you're a scientist. But I'm also a person who loves people, and so I found myself quickly becoming invested and connected to the people joining our studies. Whenever we had a new person join a study, in addition to making sure to conduct the informed consent process, I would take the time to begin to get to know the participants. I would try to meet them where they were in that moment...whatever brought them to our research, whatever reason that made them want to get treatment, however they were physically feeling, whatever worries and concerns they had. The informed consent was our chance and duty as researchers to not only describe the research, and its risks and benefits, but also a chance for the participants to ask questions of us about the research, expectations, what their day-to-day would look like. It was a chance to begin to build trust.
I was just a new face in their life, our paths crossing and joining in some ways for just a small window of time while they attended our research clinic. Looking back, that's what strikes me most now. They had lived their life up to the point at which we met, as had I. And I was there because I had wanted to work in addiction research for a very long time. I had been affected by substance use disorders in those around me and close to me: family, friends, and people in my neighborhood growing up. I learned early that substance use disorder can appear in our lives when and where and in people who don't match what the stereotypes may have you expect.
People use their first opioid for so many reasons: pain relief, curiosity, a dental procedure, surgery, boredom, they were given it from a friend, trauma, and trying to escape certain feelings. It typically takes multiple treatment episodes before any one person may start to sustain abstinence for the long term.
But why were they coming to us? At the very basic level, we thought people came to us because they wanted treatment for their opioid use disorder and were interested in and willing to participate in our research. But, as I found in the weeks or months -- or in some cases more than a year -- that I was able to spend with our research participants, their reasons were always so much more. In preparing to tell this story to you, I actually went back to some old research files and talked with colleagues that worked with me back then. I couldn't help but smile widely as I thought of so many of the familiar faces that came up and the stories and life they shared with all of us. In working with these people in treatment research, they shared their day-to-day with us casually in conversation, in counseling sessions, in research interviews, and in those PDAs they carried around entering data about their regular day outside of clinic.
I'd like to just read some of the data we received from PDA entries to better illustrate what I mean. Sometimes the entries were short and needed little explanation: 'My friend is dead. My neighbor was shot in the chest at 4 am.'
Sometimes they were directly related to the stress caused when trying not to use: 'People used around me. I was cleaning my room and found two dime bags of heroin.'
Sometimes they seemed as much for themselves as they were for us: 'I started thinking about getting high after seeing an old friend. I'm not going to do it.'
And sometimes they illuminated the wide range of human experience and that we can never know what a situation may cause someone else to feel: 'Just added a new grandson to the family.' And another shared: 'It's Christmas. I love to see the joy on my kids' and grandkids' faces.'
Bittersweet Holidays
That last one always gets me. It was written by a woman who had four kids and a handful of grandkids she absolutely adored. She came to our research clinic unemployed and with her personal relationships in disarray. She had completed some college with a focus on getting an engineering degree. And when she started her treatment for opioid use disorder in a study with us, she had set goals in mind and got straight to work on them. Before long, she had gotten an apprenticeship in her engineering field and was working towards a professional license. She began repairing relationships with her mom and her adult kids. I remember her coming into clinic every day as soon as we opened to receive her medication so she could head off to work. Always upbeat and always ready to tackle the day ahead as she worked on her future. Although she was always warm and optimistic, she is human like all of us and even the best of times can have their challenges. Holidays are often a joyful time for people -- for her, the feeling of being fully present without any drugs on board was positive, yet also overwhelming and stressful. I heard this many times over the years from participants who had talked to me about experiencing life and emotions while newly sober. Sometimes these emotions and experiences are actually wonderful and feel really good, but can feel like too much and trigger the desire to use -- even when the person doesn't want to and hasn't in a long time.
Our participants trusted us with their daily truths. The things that were a nuisance, that kept them going, and the things that kept them up at night. They wanted these truths to be heard.
When Perseverance Pays Off
Another person I often think about was a woman in her mid-20s that was new to our city. She had been using heroin daily for 6 years and often used cocaine as well. She joined one of our studies in the middle of winter and then lost her place to live. Now homeless and also jobless, she stayed in shelters and got her meals at soup kitchens as she tried to establish herself and her sobriety here.
Once her methadone dose was stable though, she stopped using all illicit drugs for the most part. She had a couple slips here and there with alcohol or cocaine -- usually after hanging out with a friend that still used -- but she didn't use heroin. She was really great at noticing her cravings for opioids and we were able to get her on a dose that held her well. Then she found a couple part time jobs, including teaching computer basics and English to a local couple.
During one very cold stretch here in Baltimore, she was staying in a Code Blue shelter -- places that are set up to keep marginally housed people from the dangerous temperatures outside. It seems that shelter staff that day had told everyone there that they needed to bring their belongings when they left for the day, but she had left prior to that announcement and so she had left most of her stuff. All of her belongings -- everything she owned except what she carried on her that day -- were thrown out. She was devastated to lose that little bit that she had managed to accumulate for herself. But, she still persevered.
As that winter came to a close, she had stayed abstinent from all drugs and alcohol. The refusal and coping skills she worked on with her counselor, along with the support from the rest of staff, helped her maintain her resolve and stick to her goals. She earned the trust of her sister and then planned to move out of state with her to establish residency and then start college. And doing that would be a fresh start, away from the people, places, and things here that were associated with drug use and her struggles. She even was proactive in finding a great clinic to work with in her new city. She emailed me and some other staff a time or two to update us shortly after leaving, and so we knew she had made it to her new home and was happy and safe.
Inspiring Others Through Art
Another person that sticks out in my memory when I reflect back on my clinical work was an artist, who never stopped drawing on things around the clinic. You'd know he had been there because there would be a doodle of a person or an animal on a sticky note or a random piece of paper. He always came in with paint and ink splattered all over his hands...evidence of his passion that drove him forward every day. His drawings on every surface even inspired a colleague of mine to start leaving his own around the clinic. And we'd find his sticky notes with ink drawings of faces we recognized stuck to computers and filing cabinets.
The artist also brought in a bunch of friends into the treatment study, and I remember each one for their own special talents. One of his friends who also participated in one of our studies taught me how to make the perfect octopus. I don't even cook or eat octopus, but I will never forget his method, and the stories he shared of growing up in Portugal, catching octopus, and preparing them for his family.
The artist had started using heroin very young and progressed to injecting it early on. He told me that he really wanted to stop using so that he could further his art and make it a full-time thing. As part of the study he was in, we asked participants to tell us about stressful things that happened on a daily basis on the phone we provided. They could either respond to a prompt they received randomly throughout the day or they could turn it on and put in something that happened.
The artist always made us laugh through his data entries. He would write about something stressful that happened to him that day, but with a joking spin on it. It was through moments like these that we started to get to know our participants well enough to root for them not only in the clinic, but in their lives. We really wanted to see them achieve their life goals.
The 'Mayor'
Another unforgettable moment was the time a former participant stopped me in the middle of the street. I was crossing the road to get to my parking lot after work, when a cable service van passed me and stopped. This was strange but even stranger was hearing a guy calling my name as he hopped out and jogged over to the sidewalk where I stood.
It was a participant who had been in one of our studies a year or so before that -- a man who I considered to be the 'mayor of the clinic' for a while. The 'mayor of the clinic' always entered the clinic each day with this peppy, bouncing walk, and a loud, chipper good morning as he settled in to complete research tasks. Everyone knew him and he knew everyone. He's another guy that actually brought in a lot of friends into treatment with him and he was always encouraging to others, even the staff.
I was sad the day he left -- happy for him -- but also sad I wouldn't get to keep cheering him on or lending an ear when he needed to talk out something that was worrying him. That day on the side of the road, we chatted for about 10 minutes as he recounted what he had been up to since leaving us. He told me he had relapsed a time or two but beamed as he said he was feeling great, proud of himself and what he had achieved, including getting the job and truck he was in. He said his twins were growing up so fast and he was really proud to be there for all the big and the little things in their lives.
As he drove away and I continued on to my car, I was again reminded how fortunate I was to share these experiences with people. That they remembered me even after time had passed as much as I remembered them. That these moments that we shared in their journey with us and recovery could be more than just a disconnected and cold clinical experience for both researcher and patient.
An Unexpected Package
The last person who I'll tell you about was a young guy at the time he entered our treatment study. He was tall and lanky with shaggy blonde hair. He had gone through a lot despite being so young and didn't open up right away to people, but could sometimes talk a lot if you got him on the right topic. He always had a quiet smile for others even when he was struggling. But we all had to work hard at earning his trust.
He continued to show up -- missing a day or two here and there -- but trying his best, and always wanting to connect with others. He was earnest about getting into treatment, stopping heroin use, and getting his life back. He was with us for quite a long while in the study when one day he just stopped coming in. When that happened, our staff would always try to get in touch with the person, worrying about what could be going on. In this case, we found out that he had been arrested for something and actually was in jail.
Weeks later, a package arrived addressed to me. I don't often get packages at work so it was already an interesting event, and when I opened the box in my office, I'll never forget. Inside, I found a pair of really beat up shoes that were soaking wet, a green and yellow and black striped cloth belt, a leather wallet, and one of our PDAs. In the wallet was the ID of our young guy -- he had somehow gotten the jail to mail his belongings including his research PDA -- to me at the clinic. I'll never forget seeing everything in that box. I was in awe that he trusted me enough to send them to me, and that he cared enough to send back the research PDA, too.
Never Forgotten
Ho: These are such insightful stories, but in a lot of ways, they're just a snapshot in time -- an acute episode. What's really unique, though, is the way that Michelle gets to see these patients not just as a snapshot in time, because that's really what we see also in classic clinic and hospital settings as well, but she gets to see them and follow them and draw conclusions actually as their stories continue to evolve. So she shares now with us some updates on these stories...updates on these lives.
Jobes: It's been 10 years since I've seen or heard from some of the people I told you about today and the many others I had the privilege of working with over the years. I really do still think of them often, wondering what they're up to, had they achieved that goal they were always talking about, how did their move go or did they get stable housing. Are they still out there working hard to stay afloat while caring for their elderly parents and young child. Were they able to save enough money to buy that car they needed to get full time employment. Are they safe. We often hear from study participants at the end of their time with us about the impact that we had on them. But I don't think any of them realize the impact they had on us, as well. I've been fortunate enough to have heard from some of them since.
The mom -- I don't know where she is today. I do remember her returning to use a couple times, but tapering off her treatment with us, confident and proud of her success in quitting using and spending more time present with her family. She was planning on going back to college that fall to finish her engineering degree and was applying for grants to help her cover tuition. Wherever she is, I really hope that she's still doing well and making herself proud. And I hope holidays are full of joy and quality time with her family. She gained all of that, and her smile in those last few weeks with us was proof of how proud she was of herself and her excitement about the future. I hope she's accomplishing everything she sets her heart on.
Our artist -- he's out there creating art for the world to experience. He's come back to share his experiences with others at events and in lectures for us. The last time we saw him, he brought a friend that was newly in recovery and working for him as an artist, too. He's still seeing the best in others and inspiring and encouraging them to reach for their goals. And, he's still covered in paint all the time.
The 'mayor' of our clinic who stopped me in the middle of the road -- I hope that he is still driving around installing cable in the community and maybe someday will stop by to catch me randomly on the street and say "hi" again!
And as for our shaggy-haired young guy who mailed me his stuff from jail...well, I still have that stuff in case he comes to get it. I hope I can one day hand over that wallet with the outdated ID in it.
While this is all I can tell you about these people, it is not the ending of any of their stories. We only get a small snapshot -- the rest is unknown, unless we are lucky enough to cross paths again.
These experiences and stories touched me and my work with each person has undoubtedly shaped who I am as a scientist and as a person. I ask questions differently, I see other perspectives and possibilities, I have more compassion and drive to keep doing the work that is at the core of our mission at NIDA.
Something I always try to keep in mind is a concept I learned from a grad school mentor long ago: you never know when someone is one compassionate conversation away from greatness. That greatness may be getting out of bed the next day, choosing not to use when drugs are right in front of you, taking a step towards a life-long goal, deciding to stay in treatment just a little longer, or re-enter treatment when you know you need extra help.
I have been on the receiving end of that compassion myself and I can still recall the words that were said to me and, more importantly, the feeling of being seen and understood for where I was at the time. I have been propelled by those moments, taking a step that I wouldn't have otherwise taken, reaching towards something that seemed unattainable to me. I find the chance to do that for others is such a humbling gift. You never know how just listening to someone and doing so in a way that they know you aren't judging, you're just listening to their experiences, or talking with them and sharing some encouraging words can go beyond that brief snapshot and shape the landscape ahead for them.
When you see people struggling with addiction, you only see a small piece of what they're going through. There are stories leading them to the point at which you meet them, there are stressful bits that affect them in ways that might not affect you or the next person you meet with a substance use disorder, and their stories will continue, hopefully long past when your paths crossed.
All we can really do is try and be that voice, that person, that sees through the negative and provide a figurative hand on their back, supporting them as they move forward. And always recognizing the gift of trust that they shared with you as you walked beside them when they needed you.
Ho: Now we'd said before this episode started that it was a really unique one and we hope you enjoyed it. Like I mentioned, we usually start every episode with a theme, but in this one, we let you come up with the themes as they were organically evolving. And there's so much to pick from, but I think my favorite theme across all these stories is that encounters we have with patients are not just stories -- but it's their lives. Our interactions with them are a gift -- the gift of trust, the gift of honesty, the gift of vulnerability -- and it's that gift that is the most rewarding for what we do every day.
And again, that's what Anamnesis is about -- sharing these gifts that patients give to us with a larger audience -- so we can learn to recognize that these are all gifts, in our own interactions, and also reflect on how special this little world of medicine really is.
So I want to extend a very heartfelt thank you again to all of you, all of our listeners, for sharing your time with us today and listening to our episode of "Anamnesis." Special thanks again to our team at MedPage and our producer Brendan Murphy. Again, my name is Amy Ho and I am humbled and gracious to be your host here. We look forward to sharing stories like this and more with you all this season.
Want to share your story? Read the Anamnesis Storyteller Tip Sheet and send us an email at anamnesis@medpagetoday.com.