Frequently Asked Questions

I am asked a myriad of questions that I don’t always know how to answer in the moment, as there are so many possible ways to answer. However, hopefully the following will help answer some of the more common questions that come up.

QUESTIONS ABOUT HOPE TBI WEBSITE

Why Create A Web Site?

The HOPE TBI website began as a simple blog to share my recovery journey, connect with others, and keep track of my own progress. But over time, navigating blog posts became overwhelming, especially with memory challenges, so we transitioned to a full website format with tabs and dropdown menus to better organize the content.

This shift turned the site into something more meaningful, and it then began to evolve and grow exponentially. It also gave me a renewed sense of purpose. As I documented my injuries and researched various treatments and strategies, I realized others with similar experiences could benefit from what I was discovering, without having to do all the legwork themselves.

Sharing what I’ve learned, through trauma, advocacy, and survival, has become a vital part of my healing process, and hopefully can provide help for others as well.

Why Is It Called “Hope TBI”?

The word HOPE became a lifeline for me. In my hospital room, the word was often visible on posters, cards, or decorations that my family provided to me or decorated my room with; and it became a positive focal point when I was struggling, and took on profound significance during my darkest moments.

Later, while reflecting on how to help others, I reimagined HOPE as an acronym:
Help One Person Excel.

I also wanted the name to reflect my core goal: independence. After enduring a traumatic brain injury (TBI), orthopedic injuries, regaining autonomy, whether in self-advocacy, mobility, or decision-making, became my driving focus.

So TBI evolved to mean: To Be Independent.

Together, HOPE TBI = Help One Person Excel – To Be Independent.
It captures both my mission and my journey.

Are The Cherry Blossom Trees Significant?

Yes, the Cherry Blossom imagery is deeply and spiritually significant for me. It symbolizes beauty, fragility, and renewal after hardship. You can read more about its personal meaning to me under Cherry Blossom Tree Pictures

What Do You Hope To Accomplish With This Site?

Our mission is to:

Inspire and encourage survivors and caregivers
Offer access to educational information, articles, tools and other real-world resources
Empower people to make informed decisions about their care
Raise awareness of polytrauma and traumatic brain injury (TBI) globally
Encourage others to find their voice and be able to tell their own story, and have a dedicated link to that page, to share with others

This space is dedicated to survivors who feel alone in their recovery journey; you are not alone.

It is also for healthcare providers, family members, and caregivers affected by trauma. It is for the community at large.

It is a place of HOPE.

How Does HOPE TBI Help Others?

We help others by:

Awareness Campaigns: We advocate across social media, email, calls, and speaking events to amplify TBI and polytrauma awareness.
Providing resource navigation and emotional support (at no charge) for those impacted by polytrauma or TBI.
Sharing stories from survivors, caregivers, and providers. We e-publish personal, factual survivor stories (including those honoring the deceased) so users can share their unique link with others.
We support survivors by sharing their blogs, music, books, support groups, or videos on our Support Groups and Books page.
Offering a Co-Op/Exchange group as a space to share donation needs and gifts (like equipment, fundraising pages, or extra supplies (no sales or vendors permitted here)
HOPE TBI Support Group (Online): A virtual community to exchange advice, questions, struggles, and support with others on a similar journey.

Does HOPE TBI Charge For Any of These Services?

No. HOPE TBI is run as a free, volunteer-driven community resource.

That said, donations are always appreciated. They help us cover basic costs like web hosting, domain address, access to research publications, resource development, marketing, and other administrative costs. If you’ve found something meaningful or helpful on this site, or if we’ve shared your story, spotlighted your link, group, business, or supported your advocacy cause in some way, we encourage you to consider making a contribution in any amount.

While never expected or required, every donation helps keep this work going and allows us to help others.

You can also explore additional tools and paid services through our partnership with Vital Ability, LLC.

How Can I Donate or Contribute To Keep This Site Going or Support the Cause?

To keep this site growing, we welcome financial and in-kind contributions by:

Donating directly via our Donation Page
Sponsoring an event
Gifting us with membership to reliable research sites
Emailing us with ideas: hopetbi4ever@gmail.com

Not all contributions are financial. You can also:

Show up for someone in need
Learn more about their condition
Listen without judgment
Offer compassion and presence
Share your story or encourage someone else to share theirs (we can help with that)

Advocacy isn’t always loud – it’s often a quiet act of love and action.

Does HOPE TBI Accept Guest Bloggers/Authors?

Yes. We welcome articles, poems, and personal contributions from survivors, caregivers, or providers. Please email your submission and contact info (name, address, phone number) to:
hopetbi4ever@gmail.com

QUESTIONS FOR THE CREATOR OF HOPE TBI

What Changed for You After the Wreck?

Everything.
My physical, emotional, spiritual financial, and vocational world was turned upside down. From learning to walk again to rebuilding my memory, confidence, and life purpose, the impact has been total and all-encompassing.

How Are You Now?

I’m better than I was on January 4, 2014, the day of the wreck, but I used to say that I am not as well as I was before it. However, that said, in some ways, I’m actually better now than I was before the wreck. I’m more aware of the value of time. I have deeper compassion for others, and I live with a real sense that “any day above ground is a good day.”

I stay goal-oriented and hopeful, though it’s a daily challenge. I’m learning to love this new version of myself, even as I recognize that parts of the old me are gone. I don’t mourn that version of myself as often as I used to, though there are still quiet moments when the grief returns, especially when I’m reminded of things that once came easily but now require more effort or adaptation, or I have to forego completely because I can no longer do them. Instead of staying stuck in that grief, I’ve found meaning in the life I’ve been gifted now. Focusing on the present and what lies ahead keeps me grounded and helps prevent me from slipping backwards. Having hope for the future is not just comforting, it’s essential. Advocacy is no longer just a skill; it’s a lifeline, a purpose, how I make sense of what happened, and how I reclaim pieces of myself that trauma tried to erase.

These days, I’m focused on enjoying the moments of here and now – like being a grandma, going back to school, working toward future goals, and building a business I can run from home. My life has always mattered, and I’ve always strived to be a force for good in the lives of others. That hasn’t changed. What has changed is the way I move forward….more intentionally, more grounded, and with a deeper understanding of what truly matters. I’m focused on building something for the future that feels steady, fulfilling, and aligned with who I am becoming.

I am here. I am healing. I’m grateful for each breath and breakthrough, no matter how small.

What Is Your Prognosis Or Recovery Time?

Originally, doctors expected a 1-2 year recovery. That changed after we continued to discover:

Untreated fractures
Delayed diagnoses and additional systemic problems
Additional spinal injuries and mobility issues
Delayed Treatments and Multiple Surgeries

Each surgery reset the recovery clock. I’ve survived near-death multiple times, and I see recovery as a lifelong journey, not a destination. I just continue to move forward.

The early months, and even years, after the wreck were filled with confusion and frustration. It was hard not to ask: Why weren’t things caught sooner? Why wasn’t basic testing done, especially given the severity of the crash? Why wasn’t I heard as the patient? Why weren’t my loved ones taken seriously either? The “why” questions only grew with time.

As weeks turned into months, new injuries continued to emerge – some visible, some hidden deep within. Over time, each layer of trauma revealed itself, demanding attention, treatment, and eventually acceptance.

In 2016, two years after the wreck, and still living with a shattered, unhealed scapula, I underwent 3 major surgeries in hopes of restoring function and reducing pain. These included a full shoulder and acromion reconstruction with bone grafts (two surgeries in January, one in May), which effectively reset the clock on my recovery after each procedure. Doctors told me it would take another 12 – 18 months post-op before I’d reach my “orthopedic best.” That timeline was both hopeful and daunting. I was determined to hold on to HOPE, and my Surgeon was a gift from God.

The truth is, some injuries still linger. Some healing has yet to come. Recovery doesn’t follow a script, and mine certainly hasn’t. I’ve learned that progress looks different depending on the day, and while some things resolve, others remain stubborn.

But I survived what most don’t, twice in 2014 alone, and a few more times since. I count that as a head start in the “overcoming odds” department. Every day above ground is a good day. I’m optimistic about where I’m headed, especially in terms of the healing my right arm and shoulder. While this journey has included more setbacks than I can count, it’s also full of forward motion and wonderful gains. Some injuries and rehabilitation processes I will be managing for life. Recovery is not a race; it’s a lifelong venture, and I’m walking it, literally, one step at a time.

Will You Remain In A Wheelchair, Or Can You Walk?

The question I get asked often is: Will you need a wheelchair long-term?

The short answer is no. I’ve been mostly out of the wheelchair since March 2015. I had to relearn how to walk, slowly and carefully. I still used the chair intermittently through 2015 and 2016, especially when traveling to Minnesota for orthopedic surgeries. Airports and train stations are no small feat when you’re managing fractures, instability, and pain.

These days, I primarily use a cane and walk independently at home and in familiar community spaces. For longer distances, like airports or large stores, or larger venues I sometimes use a wheelchair or an electric cart. I’ve even been exploring getting a wheeled walker with a seat for sitting as a useful tool to help foster my independence and expand my ability to be more social. I’ve become well-acquainted with where all the sitting spots (and restrooms!) are when I’m out and about. I try to limit my outings based on the availability of those things. Stamina is a constant work in progress, and pain or fatigue can vary day to day.

My personal goal remains to move freely without assistive devices, maintaining balance and endurance. But I’ve also learned not to see mobility aids as setbacks; they’re tools that help me participate fully in life while honoring where my body is that day.

Some days, I take a step forward and two steps back, but forward is still forward.

Have All Your Injuries Resolved?

No. I live with:

Chronic pain and chronic muscle spasms
Occasional headaches
Cognitive challenges and memory loss
Neurogenic bladder
Hearing and vision issues
Neuroendocrine Disorders
Ongoing orthopedic injuries and scar tissue build-up
Anxiety, and PTSD
Mobility Issues

I also live with resilience and a strong support system of tools, therapies, and people who help me keep moving.

What Care Have You Recieved?

I’ve worked with:

Physical, occupational, speech, recreational, and vocational therapists
Orthopedic surgeons and rehabilitation doctors
Radiologists, Phlebotomists, and Social Workers
Neuro-opthalmologists, neurologists, endocrinologists, and neuro-endocrinologists
Counselors, cardiologists, primary care specialists, and other healthcare professionals
In-home and ongoing attendant care/help from my family

It takes teamwork to make the dream work.

What’s Been Your Experience With Healthcare Providers?

I’ve encountered both extraordinary and deeply disappointing care.

Some professionals advocated for me fiercely, went beyond the textbook, and treated me with dignity. Others missed critical injuries, dismissed my voice, or caused further harm through negligence.

I’ve learned to be an informed, assertive advocate because even good doctors can make mistakes, not every doctor is a good doctor who cares about you, and ultimately, as a patient, our voice matters.

What Are You Doing For Yourself?

I focus on:

Faith and family
Daily education about my conditions
Healing emotionally and physically
Cultivating a new vocational path
Volunteering and staying involved in community advocacy

This site is part of my recovery. It’s not just a project, it’s a reflection of my resilience, growth, and the journey I’m still on. After everything I’ve faced, I made the decision to return to school as an adult learner. Going back for my higher education degrees has been both challenging and empowering. It’s reminded me that it’s never too late to learn, grow, or pivot toward new goals.

My ideal vision for myself is to re-enter a vocational setting at home that not only fulfills me but also allows me to make a meaningful difference in the world. Whether that’s through advocacy, education, coaching, consulting, or something entirely new. I want the work I do to reflect the lessons I’ve learned and the heart I bring to the table.

What Do You Remember About The Wreck?

Even after visiting the scene, reviewing reports, and seeing the wreckage, I remember nothing of the crash itself. Eventually I’ve come to see that as a blessing.

How Is Austin (son involved in the wreck)? Did He Get Hurt?

Austin was thought to have been miraculously unharmed physically thanks to his 5-point harness and a seatbelt that worked. But the emotional impact has been significant. He’s experienced PTSD and ongoing trauma, though he continues to heal with time. Although, when he hit puberty we discovered (through various testing) that he had an undiagnosed TBI that we could trace to the time of the wreck. He has been receiving interventions for that in and out of school.

There were many miracles that day……and his life is the greatest of them.

Perhaps in time his young mind will forget what his heart will always remember.

How Do You Continue To Cope?

Being a mom puts me in a position of showing up, ready or not
Wake up with gratitude (most days)
Read and educate myself (both formally and informally)
Celebrate small wins (and REALLY celebrate the big wins)
Participate in Counseling
Allow myself to grieve and rest
Volunteer when able
Advocate online and in the community
Embrace the person I’m becoming
Self Care (doing things I enjoy)
I give myself permission to be immersed in all my emotions. I cry, I get angry, I struggle, I accomplish, I succeed, I fail, I laugh, I procrastinate, I forget, I remember, I pick myself back up….and I smolder (call out to “the Rock” on this one)

I’m always learning to embrace who I am today, fully and without apology. With each stage of recovery, I grow more mindful of the resilience within me and the evolving version of myself that continues to emerge. The grief for who I was still surfaces at times, but it no longer consumes me. I’ve discovered strength in acceptance, grace in adaptation, and purpose in moving forward. Life is still mine to live, and I refuse to be defined by pain or limitation.

I don’t just survive. I grow, even when it’s hard and doesn’t feel possible.
This site is a reflection of that growth.

Disclaimer

Michigan Residents:

This website was created in Michigan and reflects the lived experience of a Michigan-based survivor. Any references to laws, care models, or systems are rooted in Michigan’s context unless otherwise noted.

This site is intended for educational and support purposes only and does not provide legal or medical advice. It is not a substitute for professional diagnosis, treatment, or care. Always consult with your medical team for personal guidance.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

Thank you for visiting the HOPE TBI Website.