July 2026 Sharyn Kaufman

Still Becoming

How I Became Part of the Brain Injury Community
By Sharyn Kaufman

Caregiving has been part of my life for as long as I can remember. Over the years, I’ve helped care for five elders in my family. The longest journey was with my great-aunt, who lived with us for many years. As her needs increased and her independence declined, caregiving became more than something I did. It became how I moved through the world. I love caring for the people who matter most to me. Over time, however, caregiving became all-encompassing. I was always on call, always waiting for the next need, concern, or crisis.

Little by little, some of the things that brought me joy began to disappear. My creativity in the kitchen faded. Gardening became harder to keep up with, and somewhere along the way, it stopped feeling restorative and started feeling like one more thing that needed to be done. Looking back, I can see that I was experiencing caregiver burnout, though I don’t think I would have used those words at the time. The exhaustion was real, but so was the gradual loss of space for the parts of myself that created, dreamed, and found joy.

When my great-aunt entered a nursing home, caregiving changed, but it didn’t end. Then COVID arrived and changed everything again. After she passed away at 107 years young, I found myself in a season of limbo. For the first time in many years, it was just my husband and me, and I had room to imagine what our next season of life might look like.

I had found a measure of peace, calm, and stability. We were beginning to explore what the next season of our lives might hold. At the same time, keeping in mind that my parents are approaching their 80s, there is another caregiving season on the way. Right now, I support them in different ways, while that caregiving season is not yet fully in bloom.

Then, in the fall of 2024, traumatic brain injury entered our lives without warning. In an instant, life changed.

I spent nearly a month between the hospital and a nearby hotel. When we returned home, my husband required 24-hour supervision and ongoing rehabilitation appointments multiple times each week. There was endless paperwork, insurance challenges, and the responsibility of trying to make sure he received the care he needed while navigating a completely different life.

We had no income for several months and slipped through the cracks of many of the support systems we thought might be available. The financial effects of that season are still felt today.

For nearly three decades, I had someone to share decisions with, someone to help weigh options and figure out what to do next. Suddenly, those decisions rested on my shoulders alone while I was also providing around-the-clock care and supervision.

At the same time, I was dealing with my own health challenges. Just a few months later, I underwent surgery myself.

While the acute crisis eventually passed and much healing has taken place, brain injury remains part of our story. Today, my role looks different from it did in those early months, but it still includes support, appointments, advocacy, and adapting to the ongoing realities of life with TBI.

One of the hardest lessons I learned was that caregivers need support, too. In the beginning, there was a small circle of family and a couple of close friends, along with the medical professionals helping us navigate the immediate crisis. We were fortunate to have a primary care provider who knew us well and was a steady source of support throughout this journey, along with a naturopathic doctor who helped me navigate my own health challenges during that time. Both remain important cornerstones of our care team today.

As time went on, we found new forms of support. Mental health therapists became an important part of both our journeys, alongside music, healing arts, and holistic care. Finding those supports took time, and many arrived only after the weight of everything I was carrying finally caught up with me, and I crumbled.

There were times during this journey when I felt unseen, unheard, and ultimately erased by parts of the systems I was relying on for help. Those experiences taught me that when we begin to feel unheard, it is important to pause, take a step back, and seek out someone who will truly hear you. Sometimes we need different supports, different resources, or a different path forward. I learned that it is okay to seek out the support and providers that best meet our needs.

I also learned the importance of self-love, self-care, and boundaries. For a long time, I believed I could take care of myself later, when I wasn’t needed by someone else. What I have come to understand is that caring for myself with the same compassion I offer a loved one is not selfish. It is necessary. As I began tending to my own healing, I found myself drawn to the language of flowers. It became a way to tell the story of difficult seasons and express emotions that were often hard to put into words.

The lotus rises through dark water and mud yet emerges pristine, untouched by what it has grown through. To me, it became a reminder that difficult experiences do not have to define us.

The rose reminds me to remain soft and compassionate, while its thorns remind me that healthy boundaries help protect me, too.

Together, those lessons became the foundation of The Lotus Rose Studio. Through the holistic and healing arts, I found ways to reconnect with myself. As part of that journey, I began sharing my own story through the symbolic meanings of flowers. One of the books that emerged from my recovery was Still Becoming, where each flower reflects emotions, challenges, and lessons from my own difficult seasons.

Those same lessons are also part of why helping start the Downeast Maine Brain Injury Support Group is so meaningful to me. At this point in my journey, I feel able to hold space for others, knowing how important compassion, kindness, understanding, and a listening ear can be.

Brain injury affects survivors, caregivers, families, and entire communities. It can feel especially isolating in rural areas. My hope is that the Downeast Maine Brain Injury Support Group becomes a place where people in Hancock and Washington Counties can find connection, understanding, resources, and support.

I cannot change what has happened, but I can help create connection and community for others traveling a similar path. Because no matter where you are, your story matters. Your experience matters. Your voice matters. You matter.

The words Still Becoming continue to resonate with me because my journey is ongoing. The brain injury journey is ongoing. The lessons of self-love, self-care, boundaries, and asking for help continue to blossom.

Our stories are not over.

The seasons of our lives continue to change. Some seasons arrive gradually, while others appear without warning. Through it all, we continue to learn, grow, adapt, and bloom. We are still becoming.

And if there is one thing I hope others take from my story, it is this: build a care team for yourself, not just for your loved one. Make space for self-love, self-care, and healthy boundaries. Ask for help before you think you need it.

To learn more about The Lotus Rose Studio, visit TheLotusRoseStudio.com.

For information about the Downeast Maine Brain Injury Support Group, contact downeastbiasupportgroup@gmail.com.