Jessica

Born March 1986 | Tucson, AZ

Living with LHON

“I had no idea what blind running meant.

It was the scariest thing at first.”

With all her belongings packed carefully into boxes in her parent’s garage in Phoenix, Arizona, the day was fast approaching for Jessica to close on her house. At age 27, she was newly employed with her first “real job” out of college. She always dreamed of buying her own home and had finally found one she could afford. But just as she was finalizing the paperwork, a problem arose. Her vision had changed; she couldn't see out of her left eye. “I was just praying it wouldn’t go to my other eye,” recounts Jessica. Symptoms did not let up, however, and within a few months the vision in her right eye started to blur as well. Jessica called her mortgage broker to convey the troubling news. “Listen,” she said hesitantly. “I can’t go through with this. I’m losing my vision.” Jessica had to back out of buying the house, and began the reverse process of unpacking all of her boxes and moving back in with her parents.

 

Within six months, Jessica went from being a fully sighted, fully functional, independent young woman, to becoming severely visually impaired: unable to recognize faces, stairs, or written words. “How will you cook without chopping your fingers off?” her mother had exclaimed. Jessica spent the next year-and-a-half living with her parents where she re-learned how to cook, clean, communicate, and traverse the world with a blind cane.

 

During childhood, her younger brother had lost partial vision at the age of eight. “Back then all it meant was that his homework was blown up really big and he sat close to the TV. We would go to doctor after doctor, but no one knew about LHON at that time.” LHON, or Leber's hereditary optic neuropathy, is a mitochondrial inherited degeneration of retinal ganglion cells (RGCs) and their axons that leads to an acute or subacute loss of central vision. Jessica’s aunt also went completely blind at age 62. Jessica noticed this pattern in her family, but when she first lost vision in her left eye she refused to believe there was a hereditary connection.

“Hi my name is Jessica. I have a brand new job and I think I’m losing my vision,” Jessica spoke into the phone. “Can you help me?” On the receiving line was Lissa, a woman Jessica found through her initial searches online. Lissa administered a Facebook page for the LHON blind and visually impaired community, a role she took on after her own son was diagnosed with LHON. After a quick message response to Jessica, Lissa became an invaluable friend and mentor. “Lissa was there for me immediately. She told me everything I needed to know and what I needed to do and learn at that time.” Through Lissa’s Facebook page as well as Arizona Services for the Blind, Jessica found excellent resources for training and support. Jessica’s searches online also uncovered many glaring stigmas associated with blind and visually impaired people. “There is so much depressing stuff about blindness, like the stereotype that blind people always look disheveled; that they just roll out of bed with sunglasses on.” Wearing an immaculately ironed silk dress, high heels, and expertly applied makeup, Jessica defiantly breaks the disheveled stereotype.

 

This took no small amount of effort. “My first major hurdle was still looking put together; like I hadn't missed a step.” Although Jessica cannot recognize faces, she converses loquaciously while looking you straight in the eye. “I tell people that I see underwater. My world is really blurry—I have no central vision. I can’t see your face, but I know that you are there.”

 

With such stark loss of vision, Jessica could no longer drive, making commuting the next challenge in her desire to be an independent woman with her own career. “I knew it was no longer safe [to drive] when the halos were so big around the lights that I didn't know if they were green or red. That’s when I knew I should be off the road.” When Jessica sold her car, it marked a significant turning point in her independence. “Everyone with LHON remembers the last time they drove a car.”

Despite transitioning to paratransit, Jessica never lost her drive to remain fervent young professional woman. One day, while catching the Sun Van (Arizona’s paratransit), the driver exclaimed to her, “What? I thought you can't see—what are you doing wearing heels like that?” To which Jessica replied, “My legs aren't broken!” The exchange inspired Jessica to start her own blog, appropriately titled Blind Girls Can Rock Heels, where she describes her experience living with LHON and deconstructing the barriers associated with visual impairment. “My biggest goal was maintaining the perception that I could do anything. Whether I actually could or not didn't matter. I still wanted to have the perception that I could."

 

When Jessica first lost vision, it was imperative to her that she keep her new job. But how? It was something she could not do alone. While keeping up the impression of a fully sighted, fully functioning Sales and Marketing Coordinator, every evening after hours, her mother, father and best friend would sneak into her tiny office to help play catch-up. From about 8-11:30 p.m. they worked—her best friend was the fastest typist, her mother would file and her father would organize. “Then we all went home, and I came into the office the next morning saying, ‘oh that was so easy!’” For months, unbeknownst to the company, Jessica’s family and best friend helped her with the basic tasks she hadn't yet mastered since losing her vision that were needed in order for Jessica to keep up her employment. She kept the coffee brewing for her secret helpers as she slowly learned how to efficiently multitask without dependency on her eyes to guide her. “We spent hours catching up, and no one knew.” Jessica proved capable of learning to do her job without vision and although she required some extra assistance, she began to grow her nascent career in marketing and public relations. Years later she would land a job at the University of Arizona in the Clinical Trials Department, moving her from Phoenix to Tucson—her “happiest place on Earth.”

As her vision changed, so did her hobbies and friends. Jessica began to meet other people within the LHON community and was especially inspired by a young man named Chaz, who despite his vision impairment, was an accomplished long distance runner. He challenged her to try running and she loved it. “I was never a sighted runner,” she distinguishes, as it wasn't until after she went blind that she started. “I had no idea what blind running meant. It was the scariest thing at first.” To start, she connected with a few running guides who one by one took her out on simple trails. Her mother would meet each of them and wait in the car for their return, until they proved trustworthy. “When everyone asked what I was training for, I told them I was just a happy runner. I didn’t have to use my cane, or use my vision, I just got out there and ran free. Whenever I’m running I have a huge smile on my face.” What LHON had robbed of her sight, running returned of her freedom.

 

With a new outlook, Jessica started organizing Dinner in the Dark fundraisers, in which sighted participants share a three-course meal completely blindfolded. The first dinner she held in Phoenix was advertised all through word of mouth and welcomed 98 people in attendance. Her second year brought 143 participants, including congressmen and firefighters, and during her fourth year, she raised the most money yet. In total, Jessica has raised over $25,000 for the blind and visually impaired community.

 

Aside from raising funds, the dinners are an opportunity for Jessica to teach the broader public important lessons about the ways blindness and vision are perceived in society. “I wait for that hum of silence when everyone can’t find their food,” she says. “All of a sudden you hear the hum gets quieter, and that's the moment that I wait for. That’s success, you know, the realness sets in.” She provides space as well as a platform for the visually-impaired to teach their simple truths; to unmask their condition and foster mutual understanding between the two groups. “I wanted to do something to make a difference, to be able to help do my part. Raise awareness.”

“I wait for that hum of silence when everyone can’t find their food. All of a sudden you hear the hum gets quieter, and that's the moment that I wait for. That’s success, you know, the realness sets in.

After sitting with Jessica outside of her office on the University of Arizona campus, we take a drive into the hills of Gates Pass. Opening up to a limitless vista of the Tucson mountains, we park and then guide Jessica along the dirt path and venture into desert hills. “It's so beautiful out here!” Jessica rejoices. When asked if she can see the plants and the colors, she responds, “I see the blue sky and I see the horizon and yeah, that’s all I need.” We take a picture with her smart phone; she then holds the phone an inch from her eyes, and while zooming in, alights at the beauty seen there.

 

As the sun sets over the mountains, Jessica tells us that she will wake up at 4:30 a.m. “to run a quick eight miles before work.” She currently runs with guides five days a week and is training to run the Boston Marathon with the United States Association of Blind Athletes. It is remarkable to witness Jessica’s strength, perseverance and positive attitude. After becoming severely visually impaired at age 27, Jessica excels in her professional life, lives on her own, began running marathons, and has become an inspiring keynote speaker. Jessica is especially enthusiastic about being a positive role model for younger people and is looking forward to making her keynote speech at ENVISION, a camp for blind and visually impaired children in Wichita this summer. “There's this perception that just because you can't see, you can’t, can’t, and can’t.” If one thing is for certain, Jessica can, does, and will. After receiving her diagnosis of LHON, she has taken off running.


Olivia

Born January 2012 | Kansas City, KS

Living with LAMA2 CMD

“We talk about resilience—Olivia is the epitome of it. She’s the most resilient kid, and human, I’ve ever been around.”     —Matt

Olivia was placed in daycare as an infant, as her parents, Matt and Sara, both worked full-time in finance and marketing. During this time, the differences between Olivia and the other children began to appear. “She didn’t have the same forcefulness of movements and projection of cries and screams as the other children,” recalls Sara. “I wasn’t sure what was going on, but my mother’s intuition said, ‘Something’s not right.’”

 

When Olivia was three months old, Matt and Sara embarked upon the difficult odyssey of finding a diagnosis. “Most people do a muscle biopsy, but we felt it was very dangerous to give her anesthesia,” says Sara. They preferred to get genetic confirmation through blood tests. The genetic testing revealed that Olivia had a high creatine kinase (CK) level, indicating muscle damage. After waiting weeks for the blood results and additional testing, Olivia was officially diagnosed with LAMA2 CMD at six months old.

 

Receiving the diagnosis for their first-born baby was surreal. “You think everything’s normal, and then your whole world gets flipped upside down,” says Sara. All of a sudden the family had to shift into envisioning a new reality—one including a wheelchair, an adaptive vehicle, and an accessible house. Up until that point they had planned on living, working, and raising Olivia in a fourth-floor, walk-up apartment in downtown Chicago. Reckoning with the change in plans, Matt and Sara decided to sell their apartment and move back to Kansas City, where they could be near supportive family and find a house that would accommodate Olivia’s needs.

“Come on! Let’s play,” exclaims Olivia, her enthused, high-pitched voice trailing behind as she races down the road in her hot-pink power wheelchair. At age six, she’s got the energy of a hummingbird, and her rare condition of congenital muscular dystrophy (CMD) does not stop her from going where she wants, at top speed. Olivia lives with LAMA2 CMD, a type of muscular dystrophy related to a specific mutation in the laminin protein. The condition takes two forms: either a severe, early-onset form or a milder form that appears later in life. Olivia’s condition was early-onset, though when she was born, her health appeared to be fine.

Although Olivia’s diagnosis came early, at times it was deceiving, as she showed to be advanced in many ways. Not only was she a very early talker and excellent communicator, but around age two, she taught herself how to read. “Her reading was wild,” remembers Sara. “She literally learned to read, self-taught, out of the blue. She memorized words immediately.”

 

As Olivia grew older, Matt and Sara realized that she had no arena to explore her burgeoning imagination and her unquenchable desire to play. They wanted to build her an accessible playhouse, but were met with legal restrictions. “Living in a historic neighborhood, there are many building regulations and constraints,” explains Matt. “There was no playspace for her. Not a spot for her.” Olivia couldn’t go to her friends’ houses because they weren’t wheelchair accessible, and due to housing regulations, the family wasn’t allowed to build another structure big enough for her to have a playhouse.Taking matters into their own hands, they organized a meeting with the building commission, where Olivia, at just two-and-a-half years old, showed up in true form. “In the middle of the meeting Olivia started beeping the horn in her chair. ‘I’m bored, I’m bored, I’m bored. I am so bored,’ she exclaimed in her sweetly adamant voice. ‘I have nowhere to play! Can I just have my playhouse?’” After witnessing young Olivia, the building commissioner approved, and the family was permitted to build a playhouse large enough for her to play in.

“Olivia is unique because she is so verbal,” reflects Sara. “Olivia speaks up. We do this for Olivia and for all the other kids too.” Furthering her knack for civic engagement, Olivia helped redesign a playground in her neighborhood. The plan for the playground was to have mulch and woodchips on the ground beneath the structures, in which case, Olivia wouldn’t have been able to access it. So she spoke out to be included, rallying for a soft rubber surface instead. “Our neighbors were really great about standing up,” says Sara. “They’d say, ‘We need to be looking out for kids like this. We need them in our neighborhood.’” The communal camaraderie moved Sara to tears. “People care, but they don't know what they don't know. Once we started talking, we've been surprised by the support we’ve been given.” With this support, Olivia’s family was able to accomplish major milestones with accessibility to public spaces, and not just for Olivia, but for other children as well.

 

Managing Olivia’s medical needs have also proved challenging. “We are lacking an integrated team,” explains Matt. “The doctors are good but they don’t communicate with one another. Instead of having a neuromuscular clinic, for instance, we have to be the communicators between specialists.” This lack of integration takes extra time and is a cause of frustration. At some point in the future Olivia will need a spinal fusion. But it’s really when her spine will start impacting her lungs that concerns Matt and Sara the most. They will have to go back and forth from pulmonologist to surgeon—requiring precious time and energy—to figure out what is best.

As she speeds around the house in her pink wheelchair, her little sister, Emily, hops on for a ride. Emily sneaks a sip out of Olivia’s water cup that’s held behind the seat. Matt and Sara catch it and quickly move to the kitchen sink to wash the cup. “It takes her three times longer to get over any illness,” remarks Sara. “So we have to be really careful she doesn’t share with other children to keep her healthy.” When Olivia was two, she contracted pneumonia and was taken to the hospital where they found that half of her lung had collapsed. She was put on respiratory-support for a week. Two glucose crashes also led to more hospital visits. Through observation by a feeding specialist, they discovered that every time Olivia was taking a sip of water, she was silently aspirating—breathing in the water. “The feeding therapist was a saving grace because after that, she started doing so much better,” recalls Sara.

 

Time is the main ingredient in caring for Olivia. “It used to take us an hour-and-a-half per meal to feed her. Doing that three times a day takes almost a whole day.” With the support of Olivia’s grandmothers, nannies, nurses, and specialists, the time obligations are shared. Sara’s mom has been the biggest help with babysitting and feeding, but soliciting her help was easier when Olivia was smaller. “Our moms are older now and Olivia’s getting heavier, so it’s difficult to find people who can pick her up and transport her in a way that they are safe and she is safe,” explains Sara.

 

Despite their support network, Matt and Sara still find themselves missing work quite often for illness, doctor’s appointments, IEP meetings, and swimming for physical therapy. “It’s a different level of tired that we operate at,” says Sara. And step by step, they are always learning. Their greatest resource is connecting with other families online. “Even our family members don’t really understand on a day-to-day, hour-by-hour basis what’s going on. If we didn’t have access to other families with LAMA2 CMD, I don’t know what we would do,” expresses Sara. “Connecting with other families is critical. They can give you a glimpse of what’s next. We rely on them more than anybody else. There’s so much more information I can get from them, more than doctors. That helps with not being so overwhelmed.”

 

Matt and Sara try to focus on the areas they can help. Sara assists with fundraising and social media efforts for the Cure CMD organization. “You do feel helpless,” says Sara. “There’s so much you can’t do. We can’t fix it or change the diagnosis, but we can change certain things to make her life and others’ lives better. That helps.” Olivia’s resilience in itself is an aid. She has been a spokesperson for organizations like the Variety Children’s charity, a national organization with a Kansas City chapter. Olivia has appeared on commercials for the local grocery store, and even at cinemas across the midwest, on an advertisement before each film supporting Variety’s efforts to build inclusive playgrounds. Her lively spirit brightens up any room. “Being around Olivia makes my day better,” says Sara, with a smile.

A social butterfly since she was very little, Olivia is always talking to people. “She’ll go zip up to all the neighbors, or anyone, and talk,” says Matt. When people ask Olivia about her wheelchair, she replies, “My muscles don't work, so I have a wheelchair that helps!” For Olivia, it’s as plain and simple as that. “Kids should be able to be included and be able to play with their friends,” says Matt. “It’s all stuff we never thought about before, and a lot of people in the community don’t think about either, until they meet Olivia, and see her firsthand.”

 

Matt and Sara keep up with the hurdles of learning how to best care for their daughter. “We need her to be here, and we need her to be healthy. And healthy doesn’t mean you have to walk,” says Sara. They are focusing now on her spine and breathing support, to keep her lungs strong. “She’s currently very healthy, in good weight. We want her to maintain independent eating and breathing.”

Olivia picks out another color from her set of fifty markers. “Will you pass me eggplant purple please?” she asks. She knows the full name of every color, and rotates between them as she fills in the gemstones on a paper tiara. When asked to pose for a picture, she obliges, but only for a moment. “But I’m coloring! Can I go back to my very important coloring now?” On the one hand, Olivia is focused on typical six-year-old stuff—making art, playing with friends, and playing games. But she also does the extraordinary—she speaks out about her condition and advocates for herself. “We talk about resilience. Olivia is the epitome of it,” says Matt. “She’s the most resilient kid, and human, I’ve ever been around.”

Katelyn with FSH Disease

Written for Fulcrum Therapeutics

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Katelyn

FSHD

Boston, Massachusetts | Born January 2011

“My life is 99% happy and 1% frustration with FSHD.”

Katelyn sits at the kitchen counter sipping milk through a bright yellow curly straw. Twirling her long blonde hair with one finger, she talks to her mom, Kristin, about her weekend plans. At the age of eight, she is quite the social butterfly. Katelyn’s after school activities fill her week to the brim. Whether it be ballet-jazz dance class, guitar lessons, yoga, Girl Scouts, or swimming at the YMCA, Katelyn rarely gets tired of socializing. “As soon as she comes home from playing with a friend,” says Kristin, “she tells me, ‘Mom, I need another playdate!”

Katelyn was born with facioscapulohumeral muscular dystrophy (FSHD), a rare, progressive and potentially disabling disease that initially causes weakness in muscles in the face, shoulders, arms and trunk and progresses to weakness in muscles in lower extremities and the pelvic girdle. Shortly after Katelyn’s birth, Kristin intuitively sensed something was wrong. “I was constantly paranoid,” she says, “but thought I was just being a neurotic mother.” Looking back, she now realizes that hints of the disease first revealed themselves when Katelyn was a toddler. “At two years old, she complained of hip pain. She was always slightly slower walking and running than her peers,” Kristin explains. “At five years old, her kindergarten teacher became concerned about her posture, and she could never run like the other kids.” Even so, Katelyn’s father, Holger, tried hard not to acknowledge what was becoming more and more clear. “I remember thinking, ‘There’s no way something’s wrong with my little girl,’” he says.

When Katelyn was six years old, her spine started to show signs of lordosis, or curving of the vertebrae in the lower back. Her parents could no longer ignore the obvious. “It looked as if the top of her body was totally disconnected from the bottom half,” Kristin explains. They went to Boston Children’s Hospital for a consultation, thinking it might be scoliosis, but it wasn’t. Next, they took Katelyn to a neurologist and to a muscle clinic. Her creatine kinase (CK) levels were slightly elevated; given that test result, plus the appearance of her body, the team diagnosed Katelyn with FSHD. Little information was given to Kristin and Holger when they received the clinical diagnosis, and there was no roadmap for the progression of the disease. Kristin wanted more information including a scientific diagnosis, so she pressed for further research and genetic testing. “How did I know if I was fighting the right battle? We had to find the exact diagnosis.” Nine months later they learned that Katelyn had both FSHD1 and FSHD2. While the combination is still considered one disease, it is extremely rare.

Though they were told there was no cure for the disease, Kristin and Holger acted quickly, redefining their routines to support their daughter’s wellbeing. They began physical therapy, exercising most mornings at home for 20 minutes before school, with an additional weekly appointment at a nearby rehabilitation center. Katelyn continues PT today. The therapy is aimed at keeping Katelyn’s muscles active and growing. She enjoys the movement and considers it part of her morning playtime. “I just make sure to keep her active, walking up stairs instead of elevators, and using all of her muscles,” says Holger. “We have to modify activities she loves in order for her to keep doing the things she loves for as long as she can.” His favorite activity with Katelyn is swimming at the YMCA. They go at least once a week.

“I just make sure to keep her active, walking up stairs instead of elevators, and using all of her muscles,” says Holger, Katelyn’s father. “We have to modify activities she loves in order for her to keep doing the things she loves for as long as she can.” 

Out in the world, Katelyn approaches life with confidence. She is frank, poised, and self-reliant, largely unfazed by other peoples’ opinions. At school she is surrounded by a loving and accepting community. However, children are curious about her appearance. “They say to me, ‘What’s wrong with your back? Did you break it?’” Katelyn explains what she knows about FSHD. “I tell them I have a disease in my muscles and they usually get real quiet. Or they say, ‘Sorry to hear that. Want to play?’” Despite the difference in her appearance, Katelyn is rarely shy. She performs regularly in talent shows and in school theater. “I don’t have stage fright,” she states proudly.

Katelyn’s positivity is matched by her mother’s motivation to help find a therapy for FSHD. When Kristin and Holger first received the diagnosis, Kristin lost sleep staying up at night researching and reaching out to everyone she could find that was affiliated with FSHD in some way. Kristin eventually met June, chief strategic programs officer at the FSHD Society (then the FSH Society), and at their first meeting over coffee she learned more about the disease and what to expect. Filled with gratitude, Kristin said to June, “You’ve been so helpful to me, now how can I help you?” To which June replied that she was looking for someone to spearhead the FSHD Society’s New England chapter. Kristin responded excitedly. “You mean I get to talk to all the scientists and all the pharmaceutical affiliates? I’m in!”

Kristin stepped into her new role as liaison between the FSHD Society and the FSHD community. It’s a full-time job on top of her regular full-time job, and she dedicates most Sundays to her work with FSHD. As part of her duties, Kristin provides firsthand knowledge and support to patients and caregivers, helping people get involved and keeping them “up to speed” with advancements, clinical trials, and other opportunities within the FSHD community.

For Kristin, there is an urgency to this work. “To everyone with FSHD, I say, ‘Do you see the news? Do you know that you need to be scientifically diagnosed?’” She avidly encourages people to get genetically tested and to stay informed, so that they can make decisions about treatment options and trials. “There are often more options than people are aware of,” she says. “We are helping to spread that information and make sure it reaches them.”

Katelyn’s positivity is matched by her mother’s motivation to help find a therapy for FSHD.

“We’re looking for a therapy any way we can get one,” she says. “It really comes down to the patients and the caregivers banding together and making sure the access and knowledge is out there so that the pharmaceutical companies don’t lose interest if they feel that the community is not engaged.”

The job is exciting, but also stressful. In contrast, Katelyn’s relatively stable condition helps keep things calm at home. “Katelyn is in such great shape and doing so well right now,” says Kristin. “That’s what I hang on to.” Katelyn’s disease hasn’t visibly progressed in the last year and a half. The family’s life is full of playdates and field trips, music, and trips to the family cabin in Vermont. They recently celebrated Katelyn’s birthday with a sleepover party at the Boston Museum of Science where Kristin, Holger, and 11 other girls spent the night.

“My life is 99% happy and 1% frustration,” Katelyn tells her mom. “And that frustration is FSHD.” Kristin looks at her daughter and asks tenderly, “Is that a weekly frustration, a daily frustration, or…” to which Katelyn replies nonchalantly, “Nah, it’s like once a year.” Katelyn returns to her guitar, sits on the rug, strums and sings as loudly as she can. She is happy to be here, and so too are her parents. To the FSHD community, Kristin says, “It’s solvable. Be involved. Let’s band together. We’re the only ones that can make it happen.”


Weaving as a Way of Life

Written & Photographed for Fibershed

By the time Sheng Lor was old enough to go to school, she already knew how to embroider. Born into the Hmong culture of Laos, the Oakland Fiber founder grew up within a culture that sees sewing, indigo batik and dying, and the intricacy of embroidery as highly regarded arts. During her youth, all young girls were taught how to embroider at an early age, and it was their custom that every year, each person must make an entire outfit by hand. “We weave really plain cloth and then spend a year embroidering,” Sheng explains. “My four sisters and I would do the embroidery, and our mom was a dressmaker, who would sew them into outfits.” 

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Both Sheng’s mother and grandmother were well-respected and sought-out dressmakers, a crucial trait among the Hmong as they make their clothing without the use of premade patterns. “Everything is made to custom fit,” she says. “And because we don’t have a history of written literature, nobody is passing down a written pattern. Either you know it or you don’t.” Because of this “secret skill” of sewing among Sheng’s family, they received visitors all the time.

“I always considered my cultural experience a blessing, to be constantly surrounded by textiles and handmade cloth,” she says. “A lot of Hmong friends hated being forced to sew, but I never hated it — I loved it. ” Sheng’s love of cloth led her to study printmaking at university. Enchanted with designing fabric, the only problem was that she couldn’t fathom being on a computer for eight hours a day. One of her first jobs after college happened to be at a weaving studio. Sheng had never woven before, but she and her supervisor, Andrea Blackmon, felt an instant connection. Blackmon, who Sheng considers her most important weaving mentor, tells people, “I just showed her the basics. Everything she learned, she did on her own. She, however, taught me a lot about attitude towards the weaving.” Textile making was in her blood, and Sheng quickly was promoted to become the supervisor at Woodmont Weavers. This program provided weaving assistance for adults with special needs, who were then paid for their weaving work. Sheng managed that job for five years, loving every minute of it: “I loved that job very much. I got to weave every day!”

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Sheng’s trajectory moved her to San Jose, when a nonprofit asked her to start a weaving program from scratch, similar to Woodmont Weavers. Inspired by federal and state mandates to create more jobs for people with special needs, she attempted to replicate what she learned from the past five years. Sheng ran into roadblocks, however, discovering that the value of handmade cloth did not reflect the labor spent, when the program began to receive cuts. “In my career, weaving has been meaningful: where the people get paid for something beautiful that they’ve created. But when this program changed to recreation/arts and crafts, I couldn’t get behind that.” She grew frustrated and eventually, as the program was unable to sustain itself, it closed.

At that moment, Sheng looked around at all the looms still sitting there. Knowing they would do nothing but collect dust, she desired to rescue them, and create something of her own. She bought many of the looms off her former employer and rented a studio at Cotton Mills, and Oakland Fiber came into being. Sheng moved sixteen large new and vintage looms inside: her collection ranging from Gilmore jack looms, to Glimakra countermarch Swedish looms, to many counterbalance looms. To set up her studio, all her sisters flew out to help her dress her looms. Even though they had never woven before, they all perfectly understood tension and how to handle the yarn.

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Sheng rented the studio in November, bought the looms in December, set them up in January, and started teaching classes in February. She is currently working on her business plan, and is most passionate about weaving as a form of employment. Growing up with immigrant refugee parents who didn’t speak English, and working with people with special needs has shown her that textiles can be a very empowering form of work for both of those groups. She wishes to pay people a living wage who otherwise have a difficult time finding jobs, such as immigrants and ex-convicts. Her idea is to design handwoven products with interesting patterns that are simple enough for anyone to weave. But her question remains: how to get consumers to pay a fair price for handmade, local products? “I want us to show in our communities that locally made is good; and when the labor is local – that that is worth paying extra for,” she says.

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Passionate about the social impacts of textiles, Sheng is also considerate of the ecological impacts, striving for zero waste. “With a weaving background, you start to see material as very precious and you don’t want to throw any away.” Weaving with undyed cotton, Sheng creates beautiful products for the home: hand-towels and napkins, to reduce paper waste. “I have lived for a long time without any paper napkins. It saves me money and keeps my trash very small.” The Hmong style of sewing clothing also exemplifies zero waste, knowing how to create garments in such a way where there is no “extra” fabric. Sheng is working on developing a pattern of the traditional Hmong jacket, a “secret skill” in her culture that combines a set of triangles with a collar. Hmong people also traditionally weave with hemp, and though she loves cotton, she can’t wait to find a hemp supplier.

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Alongside her business plan and product design, Sheng is most honored to serve as a weaving teacher and mentor. “I am not qualified to do anything else except weave. I don’t have a choice,” she says, laughing. Sheng teaches group classes every weekend, with a few private lessons on the side. “I had no idea this many people were this interested in weaving. I’ve been very happy knowing there’s a tribe.” Now, she feels as if she’s doing the same thing as her family did during her childhood. “It’s my home and I’m doing what I love. I love having visitors over. And I get to talk about textiles every day. It’s what give me comfort.”

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Head over to the Oakland Fiber website to see her collection or enroll in a workshop, and follow along on Instagram @oaklandfiber to stay up to date on product offerings, workshops, and studio news.

The Way is in the Heart

the way is not the sky
the way is in the heart
- gautama buddha

In my recent craniosacral meditations I had a visionary experience where I found myself dwelling in the Field of my Heart. I traveled “inward-downward” to this place and, as if underwater, opened my eyes to see. From this place I scanned to find who also met me there, to discover who else is tending to / sensing from / abiding within the Great Heart, in Service to the Whole.

It is not always easy, or pretty in this world to abide in the Heart. There is a fire that burns and a pain that shreds. There is the unhealed brokenness and the grief of generations. There is no where to hide. And yet, there is so much wisdom - - - it is scientifically our most powerful resonance system. So - to those few I saw there, looking back at me, I recognize you, and I say thank you. For the most trusted and true Allies for me in this time are you.

#heartfield #theregenerativefield

Herdshare & Healthy Soil

Written & Photographed for Fibershed

As far as the eye can see, soft and verdant grasslands roll out like a thick green carpet dotted with healthy, ancient oaks. A trodden path of tall grass leads the way past a few small creeks to the open pasture where the animals graze. In the foothills of the Sierras, just outside the town of Placerville, Melissa and Spencer Tregilgas lease a stunning 95-acre ranch. There they farm full time, with the help of their sprightly daughters Molly (9), Adele (7), and Maxine (4). Together, the family makes up Free Hand Farm.

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Raising sheep for lamb and wool, their flock is comprised of purebred Jacob sheep, which according to Melissa are on the smaller side of sheep and easier to handle. The rest of the flock are cross breeds: Blue-Faced Leicester crossed with Cheviot, and Shropshire/Jacob crosses, also known as mules. They sell their beautiful roving by the ounce and yarn by the skein, which can be purchased at their farm, and at local yarn shops Knits and Knots in South Lake Tahoe, and Rumpelstiltskin in Sacramento.

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Sheep aside, the main part of their farm is dairy cows. “We run a very small scale dairy operation called a herdshare,” explains Melissa. “In a herdshare, everyone co-owns the cows. They pay a boarding fee once a month and receive an allotment of milk each week.” Their cows are jerseys, milking shorthorns, and one guernsey. They are joined in the work by the helping hands of the girls and by one part-time milker. With so much grassland, the animals are kept content by grazing as much as they want.

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Melissa, a Sacramento native, and Spencer, originally from Indiana and Michigan, have been farming together for six and a half years. Both, however, started off with careers in the arts, including painting, sculpture, and modern dance. But once they had children, they decided to shift gears. “It wasn’t super exciting to do [professional] arts with kids because you have to hustle pretty hard in the art world, and it doesn’t involve kid’s stuff,” says Melissa. “We both really like being outside and wanted something they could do with us to some degree, rather than us going away to a day job.”

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To get started in farming, Melissa and Spencer interned on a pastured livestock farm in Maryland. They were planning on staying there on the East Coast but decided to move back to California for the young girls to be closer to the support of their extended family and Melissa’s hometown.  They moved from an interest in beef cattle to dairy cattle, as their passion for raw milk developed and they realized health benefits for their family. “Our girls used to get super bad eczema from dairy products. We tried raw milk and it completely went away,” says Melissa.



Three years ago they found the land they are leasing now, land with a particularly interesting history. Originally, the land was tended by the Nisenan tribe, a people indigenous to the American River watershed. During the Gold Rush, a man named Charles Graner obtained the land, then sold it in 1868 to a group of Samurai fleeing the Boshin War in Japan. They came to start a new Japanese agricultural community, bringing tea and silkworms with mulberry saplings. After a couple of years, they lost their funding from the Japanese overlord, and the bank took the farm. The Veerkamp family bought the land and farmed it from 1870-2010, eventually selling it to American River Conservancy (ARC). Melissa and Spencer lease from the ARC now with the agreement that the land is to be maintained as a working farm. Melissa is excited about soil testing, so they can show the Conservancy how soil health, viewed through carbon content and soil organic matter, can improve over time with proper livestock management.

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Walking the land, you can feel the imprints that many different groups of people have made over the centuries. Melissa points out the one old Japanese tree that still stands near the milking barn. As the sun sets and the girls come rushing in for dinner, it’s clear that many people have been nourished from this life-giving land, and that Melissa and Spencer are carrying on the tradition.

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south africa

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i am the daughter of immigrants .
my greatgrandparents fled from Lithuania during the Bolshevik revolution from persecution for being Jewish
(Lithuania : “Lyti” / the Land of Rain)
leaving with nothing somehow landing in Capetown, South Africa
(“Camissa” / Place of Sweet Waters)
they were taken in and took refuge there
and in the following generation, my grandparents studied medicine. when my grandfather couldn’t afford to continue his education, neighboring farmers and friends pooled money so he could complete medical school. he became a doctor; my grandmother a nurse and they worked intimately with the Zulu tribe
my grandfather befriending the local ‘witch doctor’, learning from his traditional clapping and chanting healing ceremonies, 
integrating medicine of the western mind and indigenous village wisdom
building bridges between black and white, creating alliances in service to the health of the people. 
when apartheid was instated in 1948 my grandparents were banned from their life’s work and the health center was closed down. they were exiled and received death threats for continuing
so with 3 young children (one my mother) and another on the way
they boarded a boat and
landed in north carolina, united states of america
where it was the 1950s and the work in racial justice & health continued
and my grandfather founded the school of Epidemiology at UNC
...
i just recently learned of these stories, these trials of successive generations 
and now i make my way with my family to that place of sweet waters
to meet our foreign family
to let the land speak, uncovering hidden histories living in my dna
to assimilate and desimilate my identities 
to let my ancestors see their home again through my eyes
to behold mama africa,
that grief-stricken jubilant powerful cradle of humankind 
to see what is to be seen
to be in awe
to be an ally
to learn and to remember
roots, culture, history, humility, humanity
to go like water and return like water.

Sacrums, temporal sutures, jaw bones; ankles.

I reflect on how in the last two days I met and laid hands on 6 people from the ages of 10 to 64, from the heights of 3 feet to 6.5 feet tall, with men, women, elders and children. 

It seems that these gifts for restoring our nervous systems and connecting with our bodies in the seas of stillness couldn't come at a better time, for all of us. The winter mists and rains assist our deepening. In the midst of a chaotic cultural landscape we come together to remember. And to b r e a t h e .

I want to say thank you to all who came to meet me in the well of listening, braving their own steady presence, and to those who've yet to come.

diamonds in the dark night

diamonds in the dark night : a wave of prayers emerging and assembling for ancestors, all relations, the new moon, samhaim, the rain, the waters, standing rock, yesterday, tomorrow, today, all of it

flying through my fingers they take their shape, make their form each from humble and beautiful origins— taos navajo churro, bolinas black ram' and my grandmother's handspun wool. I am a steady witness and servant to their meeting

water prayers

may my prayers be my tears that fall to the earth and sprout wings to become birds who fly to the waters and to their protectors. may these prayers lift to meet my relatives- human, nonhuman, seen and unseen. may these prayers, may these spirits soar.

#waterprotectors 

#nodapl 
#standingrock
#defendthesacred 
#indigenousrising
#indigenousrights 

#rightsofnature
#istandforstandingrock
Art by Frank Howell.

magic

Magic is not anything you have to do.
Or even be.
Magic is an ancient tree
bearing perfect persimmons
hanging from her branches;
leaves turning pink
in the setting sun of autumn.
Magic is the way
this tree has been cultivated
by careful custodians
for hundreds
and hundreds of years.
Magic is how
the origins of this tree
have traveled from deep Asia,
to the Powhatan people of Virginia,
to my mothers garden.
Magic is collecting
eleven pounds of persimmons
Alone
on a Thursday
and the vibrant lovethumps
that travel
from my heart
to this Diospyros kaki
for what she provides me
and all of history
every October
when she fruits into being.