Navigating Grief: Holly Gainsboro's Journey Through Glioblastoma Brain Cancer Loss and Healing

Photo credit to Holly Gainsboro

In our Q&A session, Holly Gainsboro, grief specialist and founder of Golden Heart Grief Support and Education, shares her deeply personal journey through loss, catalyzed by her late husband's diagnosis of glioblastoma brain cancer. From the moment of diagnosis, Holly found herself thrust into a whirlwind of emotions, grappling with the reality of her husband's brain cancer and the profound impact it had on their lives. In the wake of her husband's passing, Holly's grief became a catalyst for transformation, propelling her into a career dedicated to supporting others through their grief journeys. Through her insights and experiences, she offers guidance to those navigating the complex terrain of grief, particularly within the context of glioblastoma-related loss.

Explore Holly's grief counseling services further by visiting goldenheartgrief.com and tuning in to the "Creating Space for Grief & Hope" podcast, found on all major podcast platforms.

Can you share more about your journey with grief, significantly how your late husband's diagnosis of glioblastoma impacted your life and emotions?

My grief began the day my late husband, Steven Gainsboro, was diagnosed with glioblastoma. At the time, I didn’t know the term for what I was experiencing was called anticipatory grief. All that I knew about my world, our world as a couple, and our world as a family of four had changed in an instant with the news that he had a malignant brain tumor. I remember feeling like I was having an out-of-body experience – this couldn't be happening, and how is this happening to us? I never asked why, but I couldn’t process that this was real for a few days. Once we started telling people, it became very real! Once we truly began navigating this unchartered territory (getting to the right brain tumor center, his first awake craniotomy and confirmed diagnosis, etc.), Steven and I decided that we would live with hope and gratitude for however long he was here to fight this terminal illness. We did live with gratitude and joy alongside the fear, sadness, grief, and uncertainty throughout those 22 months. He was truly remarkable, never complaining and forging ahead with the belief that he would be a long-term survivor. I did all I could to maintain a sense of normalcy for us and our children, who were in the 6th and 10th grades at the time of diagnosis. I chose to stay in a positive place most of the time and would joke with people when they asked, “what is his prognosis?” Which, by the way, is a terrible thing to ask someone whose loved one has been diagnosed with any illness – my response was always “I am never dating again, so Steven will be just fine!” 

How did the experience of your husband's death and the subsequent grief shape your decision to become a grief specialist, coach and educator?

The grief I felt and carried was like nothing I had ever experienced before. My uncle died from GBM in 1989, and my grandparents had died in their senior years, so I knew grief, but this was beyond anything I could have imagined it to be. My heart ached and yearned to go back in time, even just for a bit. I felt so alone, so isolated with this unspeakable pain. That pulled me to be present for others because I knew if I felt this way, others must, too, in their own way, and everyone deserves to have their grief witnessed. The Grief Recovery Method was the stepping stone to my career in the grief world. I thought about going back to school but did not have the time or patience to work towards a degree that may not even offer me the skillset to support the bereaved. I found the Grief Recovery Method through recommendations from an acquaintance and liked the psycho-educational model they created. It was straightforward with a lesson plan – perfect for a novice like me. That was ten years ago, and I have since participated in many training courses and received certifications as a Grief Educator with David Kessler’s Grief Education program and the University of Wisconsin as a Grief Support Specialist. I continue to learn regularly by attending webinars and other training programs. I rarely provide the Grief Recovery Method unless someone specifically asks for it now. I have come into my own with my grief practice and find it more beneficial to clients when I design a program that fits their needs, grief styles, personalities and experiences.

I facilitate a monthly grief support group for the National Brain Tumor Society, with upwards of 45 people participating each month. As those in the brain tumor world know, there is comfort and validation being among others who understand the journey of grief from this dreadful disease, and communal grieving is so important in alleviating some of the isolation one may feel.

I also lead grief education workshops for companies, organizations and nonprofits. We are a grief-illiterate society. Sharing information and guiding others to a place of greater knowledge in this arena is beneficial to participants and those in their lives.

You mention experiencing a range of emotions like fear, sadness, anxiety, and joy. How did you navigate and cope with such a complex emotional landscape?

I must be honest; sometimes, I am not sure! Those grieving occasionally go into an auto-pilot to get through the day. I was raising two teenagers and needed to compartmentalize those feelings at times. Then there were those days that I truly let myself be – let myself just be sad and be still with all the discomfort and agony, and it was genuinely agonizing. I didn't have someone like me to tell me to "feel all the feelings" and not stuff them down. I heard things like "fake it 'til you make it," "You need to put on a smile," "your kids need you to be strong," or "Steven wants you to be happy." The platitudes were numerous. That is not to say that I did not have people in my life who sat in the darkness with me because I did have some wonderful friends who admitted to not knowing what to do or say but let me know they were in this with me, as well as some extraordinary friends in the GBM community who supported me unconditionally. This is one of the many reasons I do my work – we need to give the bereaved permission to feel the sadness. We are a grief-illiterate society, and I received less than helpful advice which never resonated with me. I meditated a lot, went for long runs and worked out.

I spent time with my safe people – friends who could hold space for me and my pain. The joy was an interesting emotion for me early on. I am a very joyful person – always have been – and when those moments crept in, I was confused. I missed the familiarity of my grief. It took me some time to recognize that joy and sadness can coexist and welcome in the joy that I so richly deserved to feel, as do all who are grieving.

What specific aspects of grief resonated with you during your training, and how did it contribute to your personal healing?

Throughout my many trainings, the one thing that has continually resonated with me is the needs of grieving people. Being present, grievers are not broken – their hearts are broken; understanding one's grief history and the stories around grief from a young age, normalizing grief and recognizing that grief is normal following any loss, and that grief is not only experienced when a loved one dies, but there are so many life experiences that may result in a grief response. Those grieving deserve and need their pain to be seen and validated.

As far as my healing, as I tell clients, my support groups, and those who attend grief workshops that I lead, healing is ongoing. We are not "healed" from our grief, as grief ebbs and flows like the waves of the ocean. We may have the bounce in our step one day (or one minute) only to find ourselves activated and feeling the intensity of our grief once again. My healing is fluid, and while I have and feel so much joy in my life and embrace my immeasurable blessings – I genuinely love my life! I also have those moments of sorrow and longing that I need to honor and feel deeply to move forward and leap back into my joyful power.

How has your understanding of grief evolved through your own experiences and the training you underwent? Are there aspects of grief that surprised you or that you were unaware of before?

I continue to grow and evolve in the work that I do. I am an avid learner seeking new opportunities to acquire new skills to help me be the best grief support specialist, coach and educator possible. Early on, I learned that grief was not just reserved for the death of a loved one. Many life experiences may result in a grief response, as grief is the feelings caused by the end of or change in what is familiar. We must understand the layers of our losses and how they ripple into so many aspects of our lives, called Secondary Losses. Those are just a couple of things that I have learned and used in my work with clients, groups, and workshops.

How do you approach helping others who are going through their own losses, whether related to death or other grief-producing circumstances?

I come from a heart-centered and holistic place with anyone I speak with or work with. This allows me to focus on each client and their specific grief styles, needs, and experiences. I connect with each person by asking them to introduce me to their loved one – asking for their person's name and telling me a story/stories about them – people love and need to share those stories. I listen and observe intently, not only with my eyes but through my heart and instincts. Every person who is grieving deserves that. From there, I offer certain activities/exercises to help them connect to themselves, their bodies, their pain, and their loved ones. I recently completed an Integrated Somatics Trauma Therapy certification, which I use with my clients to understand and feel what is stored in the body.  

Can you share any transformative moments from your work?

Each client and each participant in support groups shows me their growth as we work together. I see the joy that begins to come back into their lives, the sparkle in their eyes, and the heaviness they have been carrying lighten, all while honoring their relationship with their deceased loved ones. In each session, I remind them of their "wins," for example, getting dressed that day, going to work, taking a walk, and any positive experience, not to be confused with bright siding or toxic positivity, that has occurred over the last few days. Feeling the pain and recognizing the power we hold within.

How do you balance holding space for others' grief while also navigating your own ongoing healing process?

I can hold that space easily as their stories are theirs alone. Their grief is theirs. People ask me how I do this work and not find myself activated and fall into the abyss of my grief memories. It's easy, honestly, to be present for those whose loved ones have died – it is such an honor to be invited into their lives and hearts, to bear witness to their pain, that I don't for one minute think about myself at all.

For individuals dealing with glioblastoma-related grief, what advice or insights would you offer to help them cope and find a path toward healing?

As with anyone grieving the death of a loved one, be gentle with yourself, be kind and patient with how you are feeling. There is no script for grief, so do not compare yourself to anyone else – our grief and our relationships with those we love and miss are unique to us, much like our fingerprints. In the grief support group I lead for the National Brain Tumor Society, I always begin with, "while we have all experienced the death of a loved one to a brain tumor, none of us, not even I, can say we know exactly how the other feels for our relationships and grief are unique to us. We cannot possibly know what is in someone else's heart. At best, I know how it felt/feels for me."

In finding a path for healing, nurture yourself, find your safe people, find a support group/network, seek out individual support if that feels comfortable, listen to podcasts, read books, or listen to audiobooks that resonate with you. Be true to yourself. Talk about your loved one. Journal. Write letters to your loved one. Find a special place where you like to sit and be still. Meditate. Move your body, dance, jump around, run, walk. Get outside in nature. Most importantly, FEEL YOUR FEELINGS! And celebrate the little steps each day. I may be a grief expert, but those who are grieving are experts on their grief. Trust that.

Is there anything else you’d like to share with our GBMRO community?

Grief is the normal and natural reaction to loss. Grief is also the feeling caused by the end of or changes in familiar patterns of behavior. What can be more of a change in the familiar than the death of a loved one? Losing a loved one to GBM can begin long before the death occurs. The grief begins at diagnosis – anticipatory grief. The changes we witness are complex. The caregiving is exhausting – an honor and so difficult. Between the grief of their death and the exhaustion of the caregiving, give yourself time to move through all that pain. There is no timeline for grief. Trust yourself and how you feel. Know that there is support out there; nobody should have to grieve alone.

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Connect with more brave caregivers by reading our testimonials on our blog. Meet Yuka Tanaka, a California-based Glioblastoma caregiver and viral content creator who has been healing and sharing her caregiving and grief journey online since her sister Maki was diagnosed with the disease in 2015. Read her full interview here. 

**Please note that the information provided on The Glioblastoma Research Organization’s blog is not a substitute for professional medical advice or treatment for specific medical conditions. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or the care of a loved one. The opinions expressed by the interviewee are their own and were submitted with the written consent of Holly Gainsboro.