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Jessie's Story

A Mystery Illness

My name is Jessie DeDecker, and I’m currently 29 years old. I will spare you the David Copperfield treatment of my entire life, but allow me to tell you some of my story.

When I was 12 years old, I became unexpectedly ill. I was bounced around from doctor to doctor, none of them able to figure out what was wrong with me. My entire world shrank until it only included the four walls of my bedroom, and I lost everything – friends, family, a promising academic career, and all semblance of my bright future, everything swallowed by this mystery illness.

When I was 17, I was finally diagnosed with myalgic encephalomyelitis, or ME, a neuro-endocrine-immune disorder – that is, a disorder that affects every system in every part of my body. It means that my brain is severely inflamed, that it can’t send the correct signals to the rest of my body, and so my body doesn’t function as it should. Furthermore, even my cells are broken – my mitochondria do not produce energy like they’re supposed to, and as such, no system in my body functions normally.

For me, the simplest tasks, like taking a shower or talking to family, exhaust me disproportionately – any exertion, however small, lands me in bed for days, unable to do anything but sleep. Light and sound, even the smallest amounts, cause me physical pain, and I am chronically in pain across my whole body. Some days, I feel like a prisoner in my body – I want to dance and sing and create art and spend time in nature, but I’m stuck inside, with the lights out, with noise-canceling headphones on, dreaming about the outside world and the life I was forced to leave behind.

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Compounding Problems

There is no cure for ME, and there is no conventional treatment. I am beyond blessed to have found my doctor, the only one in the state of Michigan currently, and though she’s done her best to help me, there is still no concrete solution to my condition aside from symptom management.

In 2020, I was diagnosed with a Chiari Malformation and Craniocervical Instability. What this means is that, from birth, there was something wrong with my skull, which allowed my brain to slip down, part of it forced outside of my skull, and that my skull was pressing down on my brainstem. I underwent intensive neurosurgery to correct this, which included removing part of my brain and fusing my skull and part of my spine together. After the brutal, months-long recovery period, I continued to decline in function unexpectedly, and I was then diagnosed with a tethered spinal cord, which meant I had to undergo another intensive surgery, this time on my lower spine and spinal cord.

During this tumultuous time, I was also diagnosed with a condition called Mast Cell Activation Syndrome, or MCAS for short. This means that my body’s mast cells, a type of white blood cell that deal with allergies and allergic reactions, are extremely overactive. As such, I am severely allergic to many, many things – my diet is extremely limited as I react to most foods, I can’t tolerate chemicals of almost any kind (artificial fragrances, cleaning products, the list goes on and on), and I am extremely sensitive to environmental factors such as dust and mold. Exposure to any of these things means a body-wide allergic reaction that devolves into excruciating migraines, full-body inflammation and pain, muscle weakness, debilitating cognitive impairment, breathing difficulties, and much more. My body, during an episode, ceases to function except to keep me alive.

Canary Homes: A Chance for Hope

This leads me to why I am asking for your help. Because I am permanently disabled, I rely on the very limited income that Social Security provides, and that does not allow me a wide array of choices in terms of rental housing. I am too poor for even Habitat for Humanity to build me a house (but that is a story for another time). In Barry County, where I live, the only choices I have for housing are my parents’ house, which I react to, or low-end apartments like the one I was living in for 3 years, which was full of mold and unshielded wiring – and as such, living there was actively killing me. This is the case for everywhere else that I could afford to live. I cannot qualify for a mortgage, and if I could, it would be for a house that requires expensive remediation for it to be safe. I am trapped here in my parent’s house, which is unsafe, and I have exhausted every traditional avenue. I have no money, I have no connections. I am out of options and, I fear, running out of time.

Hemp, and hempcrete, offer me a way out. I can’t live in a traditional house, even a brand new one, due to having an MCAS reaction from either mold and dust or the many chemicals used in traditional construction, but a hempcrete building, being low-chemical and resistant to mold, would be a safe place for me to live. It would align with my deeply-held values of eco-conscious living, Earth-friendly housing, and living as close to the land as I possibly can, a lifelong dream of mine. It would allow me a healthy, safe home where I can begin to recover from the years spent in a contaminated dwelling. The opportunity for a hempcrete house, and all of the possibilities it presents, have given me hope for the first time in many, many years. This house would give me the best possible chance I have for a good life, and a happy one.

And so I have to ask you, beautiful, wonderful people, to help me. Something can’t be built with nothing, and I have nothing. I have never been one to ask for help, and I am emotional even writing this because I know it’s a tall order. I am asking you to help me build this house, knowing that I have nothing to give in return but my eternal, heartfelt gratitude.

I’m reminded of the saying, “Helping one person may not change the world, but it could change the whole world for that one person”. Tonight, I am that one person, and I humbly, gratefully ask for your help to change my whole world.

Thank you for taking the time to listen to my story, and I hope that you and I will meet someday and that when that happens, I can thank you for everything you’ve done to help me.

With all my love,

Jessie

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