Join Marci's Fight for a Stable, Independent Life

Hello, my friends!

Most of you are well aware of the autoimmune disease I have battled since I was 19. Despite the health hiccups and disabilities that come with living with a connective tissue disease, I have strived to live a reasonably independent life. I had youth on my side for many years, but time is marching forward, and the symptoms I have lived with are not as easy to bounce back from now. This time coming was always in the back of my mind, but here I am, and here it is.

As if I didn't have enough on my plate, two years ago, I went from a chronic to a terminal prognosis when I was diagnosed with Pulmonary Fibrosis. A disease with no cure at this time, just maintenance through medication. I was not shy about sharing this news a year and a half ago with my friends and community. Pulmonary Fibrosis is one of the complications that can happen in some people diagnosed with scleroderma. I truly believed I had gone so long without internal development that I had skirted it. It was a blow. The emotional support I have received from you guys has been so beautiful.

Here I am, two years in from my Pulmonary Fibrosis diagnosis, and I can feel a change in me. My tests say I'm at 60% lung capacity right now; luckily, it has remained stable for the last few tests. But My energy has shifted in the last several months, and I am more affected by energy swings and physical stamina than before. Managing these swings has become harder; I now face setting myself up for the future.

I've been milling around what that looks like and what actions must happen to live independently and stably for as long as possible. But what that will take is that I need help executing it. You saw that coming, didn't you?

With unstable Health often comes unstable Financial Health. I get a minimal disability check every month, and then I make up the rest with some Lyft driving, art sales, and resale clothing. But these are speculative sources, and my income from those sources can go up and down drastically from month to month. I also have debt, so I have no credit to work with.

I am fortunate to have a house that I ( partially) own. My two kids will spread their wings in September, and I will find myself an empty nester in a three-bedroom house. It is not a big house, but it's more than I need or can manage independently.

My house is My Sanctuary. I have raised two kids here, and I have built a community here in St Johns that has helped me navigate the ups and downs of being a single mom with disabilities. Not to mention my little art studio in my backyard, which has brought me so much joy and healing mentally and, I'm sure, even physically. It brings me to tears to think about not being in my home or being forced to sell it. Imagining living in a strange apartment while also navigating my health issues is soul-crushing. So, in my ponderings and creative daydreams about how I can make this house work for me in the future, I have come up with the idea of separating the house in a way that I can have a small living space and rent out the front of the house as a two-bedroom—giving me a financial buffer and a manageable living space—one where I have my community and my beloved studio within my reach. It also leaves it open for when I may need more assistance.

I have gone around and around, spoken with close friends and family, and realized the only way forward is to reach out to my community and ask for help. It's hard to do, and I have gone back and forth about it. However, the anxiety and stress are becoming too much and adding to existing health stressors. So, I am finally reaching out to ask for help funding this project so I can stay at home. Your gift would help immensely in giving my life more stability and removing the stress of uncertainty.

Separating the two spaces and making my studio safe ( from critters and mold) are not too overwhelming; luckily, my friends and family will help me execute some of it. Unfortunately, there is always money involved. Can you help?

Here's a breakdown of the tasks your contribution will help accomplish:

• Creating a kitchenette (light plumbing) for my side

• Reconfiguring the HVAC system to accommodate two dwellings

• Demolition of the interior and re-sheetrocking of the studio to eliminate critters ( and a dead one in the wall, for sure) and (possible) mold mitigation to make it safer.

• Installing a small length of railing at the back entrance.

• Repairing front space for renters (replace toilet, refinish tub, and small kitchen spruce up)

I've been gathering numbers and have a ballpark estimate of what it will take to get there: approximately $15,000. It's a scary number, but I have to be hopeful that I can get at least part of the way there.

Any gift you can manage would be greatly appreciated, even if it is the gift of encouragement.

Lovingly,

Marci