Understood. We keep the story and emotional movement, but remove the jokes, punchlines, and overly dramatic one-line breaks. It should read like a genuine personal essay — grounded, strong, hopeful, and written in full paragraphs.
Life Lately: Finding Purpose Through Change
I’ve been meaning to write a life update for a while, but life has been moving faster than I’ve had time to process it. The last couple of years have brought some of the biggest changes I have ever experienced, and lately it feels like I am living somewhere between rebuilding my life and building an entirely new one. There have been incredible opportunities, difficult realities, health challenges, moments of uncertainty, and a growing sense that everything I have experienced is leading me toward a much bigger purpose.
Life right now feels like a rollercoaster. There are days when I am sitting in meetings talking about accessibility, building Blue Entity, creating art, writing, speaking, advocating and thinking about what I want the future to look like. Then there are days when my attention shifts completely toward my health, physical therapy, another medical appointment, navigating benefits, or simply figuring out where I am going to sleep. The highs and lows exist right beside each other, and I am learning that life doesn’t have to be perfectly put together for meaningful things to still be happening.
One of the biggest realities of my life right now is that I am experiencing homelessness and living in my van. That isn’t something I imagined becoming part of my story, but I also don’t want to hide it. I think there is value in talking about what life actually looks like behind the accomplishments, photographs, speaking engagements, business announcements and advocacy work. Someone can be navigating an incredibly difficult season while simultaneously building something meaningful, and I am living inside both of those realities right now.
Living in a van is challenging on its own, but living in a van while using a wheelchair adds another level of complexity to nearly everything. I have to think about where I can safely park, whether there is enough room to deploy my ramp, where I can find an accessible bathroom or shower, whether I can charge my equipment and whether the places I need to access are actually designed for someone with my mobility needs. Accessibility can determine where I sleep, where I shower, where I work and sometimes whether I can participate at all.
These experiences have made me look at accessibility with an even sharper lens. I have spent my entire life navigating spaces and systems that were not always designed with people like me in mind, but now I am thinking more deeply about why these barriers exist and how they can be prevented. I notice the parking space that doesn’t provide enough room. I notice the accessible shower where the controls cannot be reached from the bench. I notice the entrance that technically meets a requirement but doesn’t function well in real life. I notice digital experiences that leave people behind.
Those experiences are becoming part of the direction I am building with Blue Entity. Accessibility has always been personal to me, but I am beginning to understand how powerful lived experience can be when it is combined with strategy, education and consulting. I want to help organizations think about accessibility before something becomes a problem, not after someone has already been excluded. I want accessibility considered when the first plans are being drawn, when the website is being developed, when the customer journey is being designed and when decisions are being made.
At the same time, my health continues to be a major part of my everyday life. Since the boating crash, I have spent a significant amount of time navigating medical appointments, physical therapy, specialists, chronic pain, migraines, nerve symptoms, mobility changes and the ongoing process of understanding what my body needs now. There are periods when I feel incredibly strong and productive, followed by periods when my health requires much more of my attention. Learning how to balance those realities has become another part of rebuilding my life.
The healthcare and disability benefits systems have also opened my eyes in ways I wasn’t expecting. Navigating Medicare, Medicaid, Social Security, insurance approvals, mobility equipment, accessible housing and other disability programs can require an extraordinary amount of time and persistence. There are resources designed to help people, but accessing those resources can sometimes become its own barrier. When someone is already managing a disability, health concerns, housing instability or financial uncertainty, asking them to also become an expert in complicated government systems can be overwhelming.
My wishlist for what I would like to see change for people with disabilities has grown considerably because of these experiences. I want more accessible and affordable housing, better transportation, stronger support for people with disabilities experiencing homelessness, faster access to mobility equipment and repairs, benefits programs that don’t discourage people from working or becoming financially independent, accessible healthcare environments and clearer information about the resources that already exist. Most importantly, I want disabled people involved in designing the systems that are supposed to support us.
And then the rollercoaster moves upward again, because there is another side of my life that continues to grow.
I am still creating art. I am still writing books. I am still speaking and sharing my story. I am advocating more than ever, developing accessibility consulting services and continuing to build Blue Entity into something that reflects where my life and work are heading. Some of the opportunities appearing in front of me right now are things I have worked toward for years, and I don’t take those moments for granted.
The more I experience, the clearer my purpose becomes. Disability has required me to adapt and problem-solve throughout my entire life, and those skills have followed me into entrepreneurship, creativity and leadership. When one path isn’t accessible, I have learned to look for another path. When something doesn’t exist, I start thinking about how it could be created. When I encounter a barrier that keeps appearing for people with disabilities, I want to understand why it exists and what can be done differently.
My life does not look the way I expected it to look right now. I didn’t anticipate living in my van, navigating this many medical challenges or rebuilding so many pieces of my independence at the same time. There are things about this chapter that are genuinely difficult, and I don’t believe strength requires pretending otherwise. But difficulty is only one part of the story.
There is also growth. There is creativity. There is opportunity. There is community. There are people who believe in what I am building, and there are moments when I can see how the experiences that challenged me the most are shaping the work I want to bring into the world.
I am becoming clearer about what I want Blue Entity to represent and the kind of impact I want my work to have. I want accessibility to become a first thought rather than an afterthought. I want businesses, designers, developers and community leaders to understand that accessibility is not simply a requirement or a checklist. It is about whether people can participate, contribute, create, work, travel, shop, learn and live independently.
That is where I find myself today: somewhere between rebuilding and rising, navigating circumstances I never expected while creating opportunities I have dreamed about for years. Some days move forward quickly and others require patience, but I am continuing to move.
This chapter isn’t about having everything figured out. It is about continuing to create, advocate, learn and build while life is still unfolding.
And through all of the highs and lows, I feel more certain than ever that my lived experience has a purpose. I intend to use it.
