It’s hard to imagine there is anyone more committed to the brain tumor community than Adam Hayden or Lisa O’Leary.
If you read this blog, follow social media conversations about brain tumors (#BTSM), attend Head to the Hill, or read cancer-focused publications, you’re likely already familiar with their names. They tweet; they post on Facebook and Instagram; they guest blog; they write op-eds; they advocate; they attend scientific conferences, meetings, and workshops to represent that patient and care partner view. In short, they talk, they listen, and they share – all with the aim of supporting others experiencing what they have themselves have faced: a brain tumor diagnosis.
For Adam, these conversations are tethered to the reality that he’s three years into a diagnosis, glioblastoma, for which current statistics say he should have only lived one. For Lisa, it’s the memory of how she lost her husband to the very same diagnosis.
The shared experience of participating in these conversations with the brain tumor community has also offered Adam and Lisa insight into the gaps that exist between the current vehicles that exist for those impacted by a brain tumor to connect, share, and support each other. They came up with the idea to host a virtual platform where patients and loved ones could talk about the feelings and emotions that accompany any aspect of the brain tumor experience in a safe, welcoming environment, and the Brain Tumor Support Conversations partnership with NBTS was born.
Below they’ll tell you all about it in their own words.
Why did you decide to create this new forum for online patient support?
Adam: I think the first issue to address is the availability of current brain tumor support groups, specifically, the assumption that there are brain tumor support groups at all. In my area, Indianapolis, [my wife, Whitney] and I discovered only recently that there is a support group that meets at a local hospital. We’ve been cared for in the same health system for three years, and only in the past few weeks did another person living with a brain tumor share group’s details with us. I think this reveals an important insight that clinicians may not be up to date on the community resources available to support patients and care partners. Even if informed about area support groups, transportation and meeting time availability present obstacles to attendance. It is our plan to reach folks by “going where the patients are” through online channels of support that seek to minimize barriers to access by creating a wholly online experience that people are able to access from their homes. We take ourselves to be distinct from other online support groups by facilitating an audio/video experience that does not require public vulnerability through social media platforms and allows patients and care partners to only disclose their information to other group participants. If someone does not feel comfortable posting or chatting about their brain tumor experience on publicly-visible platforms, we hope the intimate and safe space created through our support conversations invites engagement.
Lisa: When my husband Patrick was going through treatment, even though we lived in a large metropolitan area, we were never offered any type of brain tumor support group. Even if we had been, given Patrick’s physical limitations and his challenging emotional issues that arose due to the location of his tumor, I doubt that we would have been able to get out to an in-person meeting. It would have been too burdensome on both of us. So, the idea that people can just log in to the Zoom platform and access others who have shared experiences is extremely appealing to me. Also, the support groups that I found by my own independent research were for patients exclusively, not for care partners or loved ones. I love that our group is open to anyone, whether that is the patient, care partner, or loved one, who is in need of support as they navigate the difficult challenges they are facing. Lastly, I appreciate that this support is offered for people whose loved one with a brain tumor is no longer with us, like my husband. I feel that this type of experience is often limited to grief groups, and as a person who is no longer in the early stages of grief, those simply do not fit. We welcome everyone, and I love that.
What is different, unique, and special about the platform that you’ve created with these support conversations?
Adam: Clinical and institutional settings where support groups are often held present an implied formality. Further, those hosting these support groups may have professional backgrounds in social work or clinical psychology, which although important for these perspectives to be shared on a care team, I think these backgrounds may bias or restrict the free sharing of information in support group settings. There is great value in participants seeing facilitators like me and Lisa, and speaking for myself, just a tattooed dude in trainers and a hoodie, speaking candidly about the beauty and tragedy of the brain tumor experience. What’s cool about our support conversations is that we’re redefining expertise in a way that values the personal experience of those living or impacted by the disease, not to replace medical expertise, but in a way that shows personal experience and community relationship building is just as important as choosing the right clinician and plan of care.
When I walk into my neuro-oncologist’s office and see another patient, there is instant chemistry. I will hug another patient, immediately ask about their treatment, and launch into discussions about diet, nutrition, intimacy… many topics that are “off limits” by social norms to discuss with a “stranger,” but in the brain tumor community, there are no strangers. We’re bonded through our shared experiences. The NBTS Support Conversations creates a space, a forum, where there are no strangers.
Lisa: As Adam mentioned, sometimes those kinds of groups can feel a bit like you are being studied by the moderators, and it is much more clinical. This group, instead, offers the experience of people who truly understand what it is like to live with a brain tumor and how it impacts everyone around the patient. Hopefully, this lends itself to participants feeling more comfortable and willing to open up, since they know we really do understand what they are going through. We offer what other support groups may not, namely identification with the group members.
What are your general approaches as moderations (i.e. your approach to agenda, flow of conversation, topics, mediation, etc.)?
Adam: My tool is conversation. Artists have their sketchbook, journalists carry a reporter’s notebook, musicians have their guitar, piano, or blank sheet music template, and as for me – a philosopher, a patient advocate, a speaker – my tool is conversation. I love facilitating because it gets me outside of my own head. Often when I am asking questions during a support conversation call I am not only asking to move the call forward, I am asking because I genuinely want to know, I am invested in people, and facilitating allows me to practice and refine my use of my primary tool: conversation.
Lisa: I tend to be a bit of an over-planner in general, and I like to have an idea of where we are trying to go with a conversation. However, my background as an attorney has taught me the importance of listening to the answers I am hearing and following up where appropriate. I often have an agenda in mind (kind of like a security blanket), but do find it far more useful to engage people as we go, not to just check the boxes and move on to the questions we have prepared before a call.
Adam: The rule of thumb for me is to make sure for any topic or question prompt, at least one person from each self-identified role is able to share a response—patient, care partner, or loved one. I do not think we’ve adequately explored the space until at least one person from each of these areas has shared their perspective. As far as style and flow of conversation, I take notes throughout the call to connect people’s experience with others on the call. Lisa and I have a couple of questions that we’ll ask on each call about milestones, upcoming scans or procedures, decision points, but generally, we follow the conversation where it leads. We want to make sure our group is accessible to first-time joiners or regular participants.
There are obviously many different types of brain tumors, and patients and their care partners can experience different symptoms, challenges, issues, and treatment paths depending on the type of tumor, size, location, their age and other comorbidities. How do you handle questions that are maybe outside of your realms of experience/expertise?
Lisa: This group is not designed to provide legal or medical advice. We are there for emotional support. There is no GOOD brain tumor, and even benign tumors can be deadly depending on their location. That makes everyone participating, whether patient, care partner, or loved one, and whatever type of tumor is involved, equally important. I am also a huge fan of saying “I don’t know,” or referring people to other resources that may be available to address their question.
Adam: I think serious illnesses—any serious or chronic illness, from cancer to diabetes, ME/CFS to cardiovascular and respiratory diseases—share in common signature characteristics, for example, existential un-ease, like anxiety, social impact to friendships and employment, and decision making for treatment protocols. When fielding questions outside of my knowledge or expertise I think the first step is to make sure the person knows they are heard, second is to find common ground through the shared experiences I mentioned. We are partners on an illness experience, and though our diagnosis, social position, gender, age, background, and more may not look the same, our desire to narrate out experience to find meaning and value in our lives resonates with everyone.
What do you, personally, get out of being moderators? Is it empowering? Cathartic? Difficult, emotionally? How do you balance your deep personal experience with this disease while providing guidance to others?
Lisa: As I mentioned before, I felt incredibly alone during the brain tumor experience with my husband. I shared updates via a website, but tried to keep it as rosy as possible, particularly given my husband’s desire for privacy. However, I was not sharing the truth of our experience, and how traumatizing it all was. I shared on our first call yesterday that one time during his treatment I wrote a raw, personal post about how everything was impacting me, which was met with a very nasty message from a friend of his family saying “I can’t believe you are making this all about you.” From there, I shut down, and for the most part, did not speak honestly about what I was going through. I think this is a large part of how I ended up being diagnosed with PTSD six months after Patrick died. So, the idea that I might be helping someone to feel like their voice matters and that they have a safe place to talk about whatever they need to is incredibly rewarding. I do not want people to suffer in silence like I did.
Adam: Loneliness is never more than arm’s length away. Glioblastoma is a rare disease, and few face-to-face friendships are able to grasp my experience. Facilitating these conversations addresses my loneliness and I hope to connect others as well. So facilitating is empowering and keeps me on my toes, but ultimately, facilitating is a proactive step toward managing my own illness experience by getting me out of my head.
Lisa: Being involved with the brain tumor community, whether as an advocate or as a co-moderator on these calls, is all of those things. I feel empowered knowing that my experience is going to help others when they feel scared and alone. I have often felt very isolated from people since going through this experience, because the average friend or family member does not know what to say to me – and doing this allows me to talk to MY PEOPLE, who really do understand. It is also painful and difficult to revisit the most harrowing and devastating time of my life over and over again. I can easily find myself drained if I do not take care of my emotional health while doing this work. Ultimately, however, my mantra of moving “from pain to purpose” keeps me coming back, and any difficulties I experience as a result are outweighed by the positives.
Adam: There is no doubt that we’re in this together! We are stronger together. The brain tumor community must unite to advance our legislative priorities, we must lead in our local communities to raise awareness and money for research, and we must share our common experiences to lock arms and support each other emotionally, spiritually, and physically. I acknowledge that I am fortunate to be one member of the very best family that none of us ever wanted to join: the brain tumor family. I give guidance to get guidance and we have nothing left to give, our presence is enough. I try my best to always show up, even if that’s all I can manage on that day.
What are your hopes/dreams for the group as it evolves/grows?
Adam: One way that I’d like to measure success is by the number of spin-off friendships that grow out of our support conversations. In our very first meeting, two participants who did not previously know each other, discovered that they will both attend an upcoming brain tumor walk, and they made plans to connect at the walk. Success is growing participation during the monthly conversations, and I’d be thrilled to see so much demand that we quickly add more conversations to the schedule, but the real “metric” is watching our support conversation community grow in organic ways to connect people outside of the meeting.
Lisa: I hope that people who may have once felt like they were walking this path alone instead start to feel connected and supported. We want to reach as many people as we can, and provide as much support as possible. I would love to someday hear people share that they learned about this group from their doctor or medical professionals, which would indicate that we are raising the level of awareness of not only the existence of this group but the need for something like this to be a part of the discussion.
This allows anyone with telephone or internet to connect to other people in their community and realize that they are not alone. Feeling like no one understood what I was going through was one of the worst parts of my own experience during Patrick’s treatment and after his death, and if we can lessen that burden for people, that’s what it’s all about for me.