This post is the first of what I hope will be a series of stories of those in the chronic illness community. I’m tentatively calling it “Narratives: Inspiring Stories of the Chronically Ill.” Read more about this project here.
It is morning in Portugal, and former biochemist, Sara Tamames, is climbing the mountain again to figure out why her spring-fed water source is no longer supplying water to her home. It’s a steep walk, and her lungs protest as she drags herself up the mountain. As she walks, Sara repeats to herself what has become her daily mantra. Just live one more day. Things will get better. Things will work out somehow. Exhaustion begs her to relent, but the need for fresh, clean water speaks more convincingly. So she continues.
Sara’s been living in the countryside for five years, one year in her current location on a farm in central Portugal. She has built in an outdoor home made of tile and stone. Solar panels power her refrigerator and provide hot water. They also power her computer which is often her only connection to the outside world. She’s here in the temperate Portugal countryside because it is where she has found the only relief from her chronic illness.
Sara is one of millions to suffer from what is broadly known as environmental illness. In Sara’s case it is specifically mold toxicity and Multiple Chemical Sensitivity (MCS). Fiercely intelligent and gifted in math and science, Sara has the exact kind of mind to investigate the root biological and environmental underpinnings of this mysterious and misunderstood set of illnesses. She graduated at the top of her class with a degree in biochemistry but was forced to put her PhD in computational biology on hold – with only a thesis and defense left – because of her illness.
Arriving at her water’s spring, she applies her intelligence to the different, more pressing problem. Why is the water not flowing down to her outdoor kitchen from her ancient spring’s reservoir? With some experimentation, she figures it out, and clears the clog with a lungful of forced air through the pipe.
Satisfied, Sara hikes back down to her home to begin preparing food and doing her laundry. Even in her illness, as a former dancer, there is an elegance to her movement. As she walks, her thoughts are with her one year-old baby, Silvia; her throat tightens and tears threaten to flow.
Sara describes Silvia as her gift, her purpose; the love for her daughter compels her to keep pushing, to survive even when money for food runs so short she has, literally, nothing to eat. More than anything, Sara wants to be able to recover her strength and health enough to be able to care for Silvia full-time, to be the amazing mother she knows her daughter deserves. It is this love for her daughter that has kept her alive. Silvia is with her father while Sara is doing her best to heal. In the separation from Silvia, Sara feels a heartache she should never ever be asked to bear. But she cannot be the mother to Silvia she knows Silvia deserves until her health rebounds.
Returning to her kitchen, she checks the water to make sure it works. Then she takes a moment to rest, lying down on the small stone bench which has become her temporary bed. The last bedding she tried arrived far too contaminated and left Sara severely ill. Her muscles seized in pain. She was swollen from head to toe, short of breath, and plagued with digestion paralysis that left her unable to eat. She has become accustomed to sleeping on the stone bench, with three wine bottles filled with hot water to keep her warm in the cool October nights. In the hierarchy of needs, being able to breathe trumps all else. She dozes and dreams of her daughter.
Sara was sick for many years before she stumbled upon the work of Dr. Ritchie Shoemaker, mold illness pioneer. She searched for a way to do Dr. Shoemaker’s treatment protocol, but mold illness is not understood as well in Portugal as it is in the United States. And even in the US, physicians who understand the nuances of the illness and benefits and drawbacks of treatment are difficult to find. To pay for the treatment would be more than two years’ salary in Portugal, and Sara was already overburdened with the expense of caring for her mother. And Dr. Shoemaker’s protocol has not worked for all patients.
Regardless of how mold toxicity is treated medically, every respected expert in the field insists that to recover from mold toxicity demands being able to find a place to live that is extremely low in mold, especially the most toxic species, and relinquishing all mold-contaminated belongings. One’s immune system simply cannot rebound in the presence of mold once it has been injured by mold. Then the patient must be given the tools and time to clear the mold-created neurotoxins and immunotoxins out of her system.
When Sara read about Erik Johnson, the original mold avoider, whose story of recovery is told in Dr. Shoemaker’s book Mold Warriors, she felt that Erik’s techniques of meticulously avoiding mold and spending as much time in pristine natural areas were her best chance of recovery. Her symptoms were so much like Erik’s and his recovery did not require all the expensive medications required for the Shoemaker protocol. Perhaps her immune system also just needed a chance to rest from the assault of mold toxins in a mold-free home and pristine outdoor air?
Three weeks ago, Sara’s mother passed away; eleven years after having a stroke that left her unable to care for herself without assistance. As happens with many people who have tasted a measure of health through the practice of avoiding mold and spending time in pristine areas, the devastation of losing her mother, of saying goodbye, was compounded by the runaway inflammation she experienced due to the pollution and high levels of mold in the city.
The irony of Sara’s situation is that her simple life is quite reminiscent of the Portuguese mountain life of decades past, a time when the environment was kinder to humans with immune systems such as hers. If she had lived then, she likely would not have become ill. This simple food and simple life; these simple pleasures have been her reprieve. But they are also a kind of prison. The recovery and health she has experienced here, though not perfect, she has found in no other way. So she remains here in the countryside, hoping that her future will hold not only improved health, but also, a measure of increased freedom.
It is evening. Sara is seasoning a wild greens and meat stew that she has left stewing on her outdoor butane stove all afternoon. Her laundry finished, she’s singing the Greek folk songs that have become her latest passion, as she serves herself her dinner. Sitting down to eat, she pulls out her computer to connect with her thousands of friends, mostly in America, who are also practicing mold avoidance and seeking out nature to improve their health. Though she has very little, what she does have is a healing and safe outdoor environment, and she wonders if what she has created here, an outdoor home, could be helpful for others like her.
She continues chatting with her friends online late into the night, resting on her stone bench, waiting for sleep to come. With no blanket and no bed, her sleep lately has come in only spurts. Her funds have now run low enough that she has to choose between a blanket and food. Food is winning, but she is still losing weight. Between lack of calories and being too cold, too often, she is not healing well from her visit to say goodbye to her mother.
And so she is back to her mantra: Just live one more day. Things will get better. Things will work out somehow.
There is some movement outside, and she closes the computer to listen. Her nighttime visitor has come again, a wild genet (gineta in Portuguese), for whom she leaves out the bones from her stews. Her genet friend has learned she means no harm and comes quite close now. It is thrill to be so near to this wild, beautiful, and elegant visitor.
This is where Sara’s life is now. She has found a way to health, a way that has given her a reprieve from suffering as nothing else has, and yet, she has not found a way to sustainably maintain it. She longs, as she always has, to contribute to the well-being of others, and yet, she knows must find her own path to wellness first. She must get stronger again so she can be there for her daughter. She must find a way to carve out a life that includes easy breathing and deep sleep, that affords her the healthy food she must have to survive. It will come. It has to.
Just live one more day. Things will get better. Things will work out somehow.
This post was sponsored, in part, by Sara Riley Mattson’s patrons at www.patreon.com/sararileymattson. Her mission is to tell the inspiring stories of those with chronic illness through heart-opening narratives. Join Sara’s mission as her patron for as little as 25 cents per month here. I wrote a little bit more about this idea in yesterday’s blog post which can be found here.
Thanks to Lilac Breasted Roller of Sullivan’s Island, US for the beautiful photo of the genet.