I’m fundraising to help cover the cost of transitioning to a wheelchair-accessible life.

For nearly twenty years, I have been living with disabling chronic illness that has profoundly limited my strength, stamina, upright tolerance, and independence. Throughout that time, I’ve done everything I could to keep going, adapt, and support myself without asking for this kind of help. But over time, the gap between what my body needed and what I was asking of it became impossible to ignore.

For many years, I lived independently , covering all my expenses while navigating worsening illness. In recent years, that has changed. I now live in my parents’ RV, a deeply generous arrangement that has made it possible for me to keep going while building a more accessible life.

In recent years, I have had to face the deeper work of unlearning internalized ableism. For a long time, I was caught in a cycle of forcing my body past its limits and then disappearing into long periods of severe symptoms and recovery, unable to participate in my own life. When I reached the point where willpower could no longer override my body’s limits, I had to begin working with my body rather than against it. As a result, I began opening myself up to supports I once could not imagine for myself, including a power wheelchair. What once felt like defeat has slowly come to feel like the possibility of greater safety, freedom, and dignity.

With the support of my doctor and specialists, I am now in the process of building a more accessible life. This has involved significant accessibility work to the property where I live, including an accessible landing area, new pathways, and a platform and ramp to the RV that is now my home. Because of the slope of the land, the project also required careful drainage planning to make these routes safe and usable. Before this work, there was no wheelchair-accessible way to move between the driveway, the RV, and the essential parts of the property. This work has already made a real difference. What remains is completing a covered entry over the platform so it can be used safely in all seasons.

I moved ahead with this project based on information I was given that 80% of it would be covered, and because I was told it needed to be completed in order for my wheelchair funding process to move forward. When the claim was later denied, I was left carrying substantial debt on a line of credit while already living on a very limited income through disability support and flexible remote work as my health allows, along with significant ongoing medical and medication costs.

Because my illness is largely invisible and variable, there may be moments, especially while I wait for wheelchair funding, when I can still be seen standing briefly, using a walker, or managing short distances. But that variability is part of the reality. The fact that I can sometimes be upright does not mean I can do so safely or sustainably. Even brief periods upright can trigger a cascade of symptoms affecting my cognition, vision, circulation, and energy, with effects that can linger long afterward. At this point, most of my life is limited to the RV, with only occasional short outings when my symptoms and recovery window allow.

Funds raised will go first toward the accessibility work already completed and the remaining covered entry still needed. If the fundraiser goes beyond those immediate needs, additional funds will help support the next stage of mobility access: a modest used wheelchair-accessible vehicle. That next phase would make it possible for me to transport the medically necessary power wheelchair I am currently in the process of securing and begin using it to access more of daily life beyond the property, including the local pool, which is the safest and most supportive place for me to move my body in a way nothing else allows. More than anything, it would begin opening my world again and loosening the grip of isolation.

This next chapter is about more than mobility.

It is about being able to move through daily life with:

•necessary physical support,

•greater safety,

•spend time outdoors again,

•enjoy friendships ‍,

•participate in community,

•begin exploring ways to return to my art forms within my capacity,

and

•live with more dignity and independence.

If you feel moved to contribute, you have my deepest thanks. If donating is not possible, your support in sharing this fundraiser would also mean a great deal.