How a SLO business owner with dynamic disabilities uses their own struggles to help others

Editor’s Note: San Luis Obispo resident Faith LeGrande contributed to this reporting as part of The Tribune’s Diversity Storytelling Project — a partnership with the Diversity Coalition that spotlights the experiences of members of underrepresented communities in San Luis Obispo County.

The flash of a rainbow dress whizzed across the Art and Soul Fair as Faith LeGrande greeted guests, checked on vendors and made announcements on the microphone.

As the founder of the nonprofit that hosted LGBTQ+-oriented community events, LeGrande’s job was to “be a social butterfly for the day” and curate a warm, welcoming space, they said.

“That was always my priority: making everybody feel like somebody,” LeGrande said.

Though guests saw LeGrande running the craft fair, they likely didn’t notice the 29-year-old suddenly disappear to the bathroom.

The reason was health related: LeGrande felt a seizure coming on.

This is a regular occurrence for LeGrande, who experiences psychogenic non-epileptic seizures. When LeGrande feels their eyesight or hearing diminish, they know a seizure is imminent and slip away to a quiet space. When the symptoms passed, they returned to work at the fair like nothing had happened.

LeGrande experiences multiple “dynamic disabilities,” a term for ailments with symptoms that can shift or change unpredictably, often with severe results that can make navigating everyday life untenable.

One of those conditions is fibromyalgia, which causes chronic fatigue, nausea and a fiery pain throughout their limbs. LeGrande also battles basilar migraines, major depressive disorder, low blood sugar, ADHD, OCD, complex PTSD and hypermobility, which causes their joints to sprain or dislocate throughout the day.

The symptoms of these conditions were exacerbated by a genetic mutation called Homozygous MTHFR C677T, which prevents their body from metabolizing nutrients such as Vitamin B.

“Many of these conditions can be debilitating just on their own. So balancing multiple of them at once and not knowing which ones are going to be reacting on which days is what makes it dynamic,” LeGrande said. “Some days I’ll be mentally sharp, and other days I’ll be physically capable, and some days I’ll be neither.”

The Tribune partnered with LeGrande to share their experiences in the latest installment in the Diversity Storytelling Project, which follows underrepresented members of our community through multiple weeks of interviews to fully understand the challenges they face.

Finding the right diagnoses

LeGrande’s health challenges first cropped up when they were 12 years old and living in Indonesia as an evangelical missionary kid.

One day, their shoulders dislocated for the first time during gym class. They flew to Singapore for a surgery that tightened the muscles in their right arm, but still, other joints would pop out of place each day.

Then at 14, LeGrande noticed burning pain in their legs while playing soccer — the start of fibromyalgia.

Doctors dismissed these problems as “growing pains,” LeGrande said, but the symptoms only got worse.

In 2010 at age 15, LeGrande moved to Delaware and was diagnosed with major depressive disorder.

Later, after taking medical leave from college twice and trying multiple jobs while battling their conditions, LeGrande moved to San Luis Obispo seeking a warmer climate and holistic medicine — two resources that relieved their symptoms.

They received fibromyalgia and hypermobility diagnoses at the Mayo Clinic in Rochester, Minnesota, three months later.

LeGrande rotated through different medications, diets and habits, but nothing seemed to alleviate their symptoms.

Finally, in July 2023, LeGrande took a GeneSight test and discovered the genetic mutation and how it had interfered with at least seven medications they had taken during their life.

“I was really relieved because I had always wondered why my antidepressants didn’t seem to be working. Why, no matter how many salads I ate, or how many vitamins I was taking, it just seemed like I was still fatigued and achy and depressed and struggling with these symptoms,” LeGrande said. “It assured me that, like, I wasn’t crazy and that I wasn’t making this stuff up, and that there is something bigger going on.”

LeGrande learned, however, that finding treatment for the genetic mutation was even more difficult than discovering it.

What treatment looks like for dynamic disabilities

Every two weeks, LeGrande must travel to Templeton for a shot of methylcobalamin, a form of Vitamin B-12. But insurance won’t cover the $70 shot until a geneticist officially diagnoses LeGrande.

LeGrande has been searching for that specialist for more than a year, they said.

First, their primary care provider referred them to a geneticist that specialized in cancer and wouldn’t see LeGrande.

Then, LeGrande was referred to UCLA, but it only takes patients who also have a history of another genetic condition called homocystinuria. LeGrande has a medical record from 2019 that shows their history of the condition — so they’ve been working to track that down.

“Trying to get to the right people to say the things that are already on the papers, it’s very tiring,” LeGrande said. “I’m just trying to show up in the meantime.”

Until they can see a geneticist, LeGrande is expected to pay $70 out of pocket for each shot. They were also prescribed Deplin to enhance the effectiveness of their antidepressant, but insurance won’t cover the medication — so LeGrande buys L-Methylfolate for $13 per month on Amazon instead.

LeGrande uses donations made to their Help Hope Live account to supplement these out-of-pocket costs.

Help Hope Live is a nonprofit that sets up a platform for people to raise money for their ongoing medical expenses. When people donate to LeGrande’s Help Hope Live page, the 29-year-old can submit bills to the nonprofit for reimbursement.

People can donate to LeGrande’s campaign online at helphopelive.org/campaign/23925/.

LeGrande’s mental and physical health significantly improved since starting the new treatment, they said.

“I woke up without as much achiness and just the general, like, cloud wasn’t there anymore,” they said. “My antidepressant and other vitamins I was taking seemed to actually kick in.”

Living and working with dynamic disabilities

Medication alone isn’t a cure for LeGrande’s conditions.

To manage them, LeGrande regularly sees two therapists and various medical providers based in San Luis Obispo and Santa Barbara counties. They also swim three times a week as a form of physical therapy.

The seizures prevent them from driving, so they walk, carpool or take CenCal-provided transportation to appointments. They even avoid the refrigerated aisles at the grocery store as cold temperatures can trigger fibromayalgia pain. On high pain days, they use a walker or wheelchair to get around.

The complexity of their conditions and care led LeGrande keep a cabinet of color-coded binders in their home to track their treatments.

“The medical case just feels like a full-time job,” they said.

Between the different conditions, the severity of LeGrande’s symptoms can fluctuate daily.

One day, LeGrande may experience extreme pain and cancel tasks or plans. Another day, LeGrande can work remotely, complete their full swim routine in the afternoon and go sing karaoke in the evening.

“For people with invisible illness or dynamic disabilities, it can just be a challenge to not only explain it to others, but also to grasp it yourself. Because I look in the mirror, and I’m like, I look fine. By society’s standards, I look like a healthy 29-year-old,” LeGrande said.

“It’s not only confusing for those around me, but it’s confusing for me as well. And on the days that I’m having a good day, it confuses me, too,” LeGrande added. “But I can’t linger or dwell on that confusion. I just have to be grateful for that day. You just have to be grateful for the opportunity to make a meal in the kitchen and not get nauseous or to walk outside and not feel lightheaded or put a sweater on and not get a dislocation.”

To manage the fibromyalgia, doctors recommend that LeGrande stay active despite the pain, rest in between activities, stretch, and seek acupuncture and massage therapy. They must swim and exercise often to manage hypermobility, and meet with therapists twice a week for mental health. They must rest during seizures and migraines, which can last for hours or even days.

“Within the routine that they give you, there’s no room to work. So, like, how am I supposed to get by?” LeGrande said. “Due to my dynamic disabilities, I’ve never been able to hold a 40-hour-a-week job.”

Instead, in October 2021, LeGrande began hosting community events like craft fairs, Pride proms and drag shows in San Luis Obispo through their nonprofit Art and Soul.

“I absolutely loved throwing events for the community, and we threw an amazing 28 events within 20 months and gathered so many community members that got so many opportunities for artists to grow,” they said.

However, the stress of hosting events worsened LeGrande’s symptoms, and they spent multiple days after each event debilitated at home. Eventually, they burnt out.

As a result, LeGrande dissolved the nonprofit in November after a bad combination of medications caused a health crisis.

On Oct. 5, 2023, LeGrande attended the Central Coast Behavioral Health Clinic for their 27th Esketamine treatment. Historically, the treatment had provided LeGrande relief from depression. But this time, LeGrande was also taking Zarontin, a medication prescribed to treat seizures.

The combination of medications exasperated LeGrande’s fibromayalgia and neuropathy, causing a fiery pain to pulse through their arms, legs and spine every time they moved. They stayed in bed to manage the pain.

LeGrande spent the next two months learning to walk again. First, from their bed to the backyard. Then, using a walker to traverse nearby cul-de-sacs with the help of their roommate and friend, Eric Mattson.

Neighbor Angela Warner taught LeGrande how to swim after the incident, and the pair carpool to the pool three times a week for physical therapy.

LeGrande said their roommates, friends and neighbors supported their treatment and pulled them through the health crisis.

“Community can get me through the seasons,” they said.

Falling through resource gaps during a medical crisis

To help make ends meet, LeGrande had applied for State Disability Insurance benefits in June 2023 — months before they experienced complications from the two medications.

But they had not yet heard from the California Employment Development Department about their application by October, when they needed the benefits more than ever before.

LeGrande called the department daily to check on their application with no answer.

“They don’t let you leave a voicemail or anything, and I am just at my wits’ end,” LeGrande said. “That was a really scary time.”

After LeGrande reached out to the Office of State Assembly member Dawn Addis for support, the Employment Development Department approved LeGrande’s application and signed them up for $1,540 of monthly assistance starting last November — one month after LeGrande lost their ability to walk.

But that assistance was scheduled to end in June.

In May, LeGrande learned that they would only receive a portion of their State Disability Insurance payment that month: $770 on May 14 and $107 on May 26.

“The $1,540 each month had been getting me by — just barely,” LeGrande wrote in an email to The Tribune at the time. “So to receive only $877 this month is a threat to my financial security and mental and physical health.”

If LeGrande earned any income while on State Disability Insurance, it would have been deducted from the payments they received. So LeGrande felt stuck — they didn’t know how to get by.

Other organizations in SLO County sent LeGrande in circles searching for financial support. LeGrande reached out to 28 different organizations, and all they could raise in 2024 for rent was $100 from Jewish Family Services and $100 from St. Vincent De Paul Old Mission. Other organizations only assisted with past-due bills, while others ran out of funding, only served families or didn’t offer financial resources at all.

“The resources weren’t resourcing, and it was really stressful,” they said.

Navigating the search for resources was another task that required careful organization, so LeGrande made a public Google Doc to keep track of services that supported them to share with others who may need assistance. People can view the document online at tinyurl.com/slo-resources.

“I think there’s a lot of misinformation going around just because a lot of these resources are overloaded and understaffed, so I felt like I needed to keep track of these resources for my sake and sanity, and there’s plenty of other people in SLO who are struggling with the same thing,” they said.

Art and Soul SLO: A new business with a new purpose

LeGrande finally reached a breakthrough with the Department of Rehabilitation this July when it agreed to consider covering the costs of launching a new business with a similar name: Art and Soul SLO.

There, LeGrande will offer diversity, equity and inclusion coaching to businesses and event organizers while working to connect marginalized people with available resources in San Luis Obispo County.

“We’re stronger together as a community, and it makes sense for us all to stay in touch and make sure that we are getting access to the resources that are available and not wasting time with resources that aren’t,” LeGrande said.

The Department of Rehabilitation’s Vocational Rehabilitation Program may cover the cost of business supplies and LeGrande’s business license while also providing free consulting as LeGrande builds their business plan.

“I feel so relieved. I feel so grateful. I feel like at least one resource in SLO finally pulled through for disabled business owners,” LeGrande said.

Among its coaching services, Art and Soul SLO will also promote mutual aid fundraisers for local community members in need. To learn more about how to donate directly to people seeking assistance, visit tinyurl.com/yfwt4nbs.

“It feels so good knowing that people that I admire or love are having a good time,” LeGrande said. “Even if I’m stuck at home, feeling like I have the flu from fibro or I’m down for the count for the day, if I know that the people in my area, my community are enjoying time together and feeling included in a space. It brings my heart so much joy.”

Anyone needing help navigating resources in SLO County or seeking coaching for hosting inclusive events can reach out to LeGrande through the Art and Soul SLO Instagram at @artandsoulslo, by email at faith@artandsoulslo.org or on Calendly at https://calendly.com/faith_legrande. LeGrande is a certified diversity, equity and inclusion practitioner and life coach.

The next chapter: Finding affordable housing

LeGrande’s lease ends in July 2025. Until then, they plan to expand their business enough to hopefully afford San Luis Obispo rent. But between inflation and the lack of support resources in the county, LeGrande worries they may need to move elsewhere.

Each month, LeGrande meets with a housing navigator through CenCal to review resources and create a plan for paying their $1,025 monthly rent.

Since LeGrande lost their State Disability Insurance benefits in June, their main source of financial aid to maintain housing has been their parents, who live across the country. Otherwise, the housing navigator recommends LeGrande to reach out to friends, family and create personal fundraisers for financial assistance. LeGrande doesn’t qualify for any other rental support programs while they’re getting their business off the ground, they said.

This is due to a lack of rental assistance programs on the Central Coast, Titanium Healthcare housing navigator Kristina McNichol said.

Though support organizations often can supplement a security deposit or the first month of rent, they rarely offer ongoing rental assistance.

“We need a program that will help people maintain housing,” McNichol said, especially because there are a limited number of affordable units in San Luis Obispo County.

The county is working with organizations like People’s Self Help Housing and the Housing Authority of San Luis Obispo to build more affordable housing, but those projects take time, she said.

“For every building that they build, there’s, you know, X amount of applications, and people end up having to be on waiting lists,” McNichol said. “It’s a real challenge.”

If LeGrande moves somewhere with a lower cost of living — potentially Washington state to join friends or Arizona for the dry heat — they will continue to operate their business remotely.

“I don’t think SLO is sustainable for me,” LeGrande said. “I see a lot of beautiful potential in this area, but it’s going to take more than my ideas and my efforts, and there’s a lot bigger parties at play here that are standing silently while marginalized community members suffer and move out. I might just end up being one of those that moves out.”

“I love the work that I want to do, and I don’t want to move somewhere that it’s easier to do the work,” LeGrande added. “But I want to be able to live while I’m pursuing the work.”