Most people in the cannabis industry have spent years surviving in the shadows, keeping secrets, and battling the stigmas created by decades of propaganda and prohibition. Sarai Knowledge knows all about keeping such secrets and facing stigmas through her crippling struggle with epilepsy. She credits cannabis with helping her live a more fulfilling life and giving her the courage to share her story; a story she has kept private for years. She owes a lot to pot and is determined to be a strong voice shifting the conversation and dissolving stigmas with both epilepsy and cannabis.
Her voice is strong. With the sultry looks of a Filipino Beyonce - all hair, body and attitude, coupled with a passion for singing and performing, Sarai is a force. She’s performed at legendary Hollywood venues like the Roxy, Knitting Factory, and the Viper Room; worked with Grammy Award winning producers; shared the stage and opened up for Hip Hop music legends like KRS-One and Slick Rick. But for someone living with epilepsy, the anxiety associated with performing live on stage can be daunting and emotionally overwhelming – an uncontrollable trigger for seizures.
Sarai is just one of 50 million people worldwide who suffer from epilepsy. There are over forty different types of seizures; all start with a disturbance in the electrical activity of the brain. Different situations can trigger different seizures. Some are so mild it may look like the person is daydreaming for a few seconds. Others can bring a person down, with convulsing and shaking, even unconsciousness. Imagine living day to day not knowing when your brain or body will betray you while people look on terrified and unsure as to what to do. It’s one of Sarai’s biggest phobias, “I’m definitely fearful of having a seizure in front of people (though its happened many times), especially people I know - it just changes the way they treat me.”
Sarai was just nine-years old when she got her first inkling of an outsider’s response. “I was at gymnastics rehearsals and I remember feeling afraid - as if I was being pulled away. I started to cry. I wasn't making much sense, apparently, and the next thing I remember is my teacher and classmates surrounding me as if they were afraid of what they just saw.”
What they saw was a frightened young girl; her body convulsing and her eyes rolling back into her head. “I remember not knowing what convulsing meant, so I didn't really understand what happened except that everyone looked and acted different towards me. I was afraid to tell my parents because of the reaction I saw from my teammates, and I didn't want to feel that way ever again.”
Secrecy and shame set in. Sarai convinced herself that the incident never happened and stopped going to gymnastics all together, using migraines and a knee injury as an excuse. “I was so ashamed of the seizure and my family didn’t understand. I was born in the Philippines and everyone is like ‘nothing’s wrong with my family.’ They weren’t comfortable with me opening up about it, because culturally you just don’t talk about things that are perceived as wrong.”
She suffered two more seizures in high school that were so bad she was taken to hospital by ambulance. That’s when the diagnosis hit. “The doctor told me I had epilepsy. I kind of knew, but was disappointed to hear it out loud. The first thing I thought was I didn’t want anyone to know. I still feel that way. I didn't even want my parents to know, so she treated me and kept our Doctor/patient confidentiality.”
With the diagnosis came the meds. Lots of them. So many that she felt adrift. “They quickly made me feel lethargic and emotionally unattached. My passion, drive, and focus to write songs and perform were gone. I was doped up on 5-7 medications at a time. The medications numbed me physically, mentally, and spiritually. I lost all sensation when I touched anything and had constant tingling and numbness in my hands and feet.” The drugs made it hard for Sarai to retain information and process it clearly. “I felt disconnected from myself and everyone around me. The meds did help relieve the painful migraines I would get, but it wasn't worth not being able to feel, function, or enjoy a normal quality of life.”
Sarai’s struggle eased when she discovered cannabis. “I think every teenager, at some point, experiments with cannabis. And when I did, I noticed it was the only thing that would help normalize the side effects from all the meds. It instantly helped me feel clearer, my limbs no longer felt numb, it increased my appetite and ability to sleep, and overall made me happier.”
Sarai moved to California to become a legal medical cannabis patient and live with her boyfriend (now husband), who was growing cannabis and knew its power. She says it’s the best decision she’s ever made in her life. For the first time, Sarai was prescribed medical marijuana. But it wasn't until she met a doctor in San Francisco, who also suffered from seizures caused by epilepsy, that everything changed. The doctor controlled his daytime and sleep seizures by ingesting full spectrum plant-based cannabinoids organically derived from cannabis in edible forms. This was a revelation for Sarai. “When I'm sleeping, I’m unable to medicate by smoking or vaping like I usually do throughout the day, so he suggested that I eat edibles roughly thirty minutes before I go to bed every night and it worked immediately.”
Suddenly, the fear, stigma, and associated taboos she carried for so long were starting to dissipate. She experienced an awakening of sorts and found her creative voice again. “I started a medical cannabis regimen, and it rekindled my passion and talent for songwriting. It became natural again.” She started recording, performing, and touring with her music; amazing opportunities developed.
Sarai and her husband were having a hard time sourcing high quality edibles. They wanted to avoid impure ingredients, sub par extracts, and the stale frozen baked goods that dominated the marketplace. Sarai’s husband, a chef and a cultivator, understood a lot about combining the two, so they started making organic cannabis baked goods. “My husband taught me how to grow cannabis, and together we started cultivating edibles - mainly to help me sleep seizure free but eventually to replace my seizure meds and to create access to these edibles for patients like myself in need.”
They started sharing their edibles with her doctor, friends, business colleagues, and eventually in dispensaries. In 2008, OM Bakers (Organic Marijuana Bakers) was born, the first California Prop 215 all organic cannabis baking company in the San Francisco Bay Area.
The bakery and Sarai’s dream to perform took them to Los Angeles in 2012. There they launched their business Kush Kakery and created the now famous, Kush Cake Pops edibles.-- The cake pops consist of a cannabis medicated ball of cake covered in medicated chocolate with sprinkles on a stick. Their new Cannabis edibles became an instant success, and the Kush Cake Pop quickly became a celebrity itself in the “Pop” culture world. Within two months, they were featured in Rolling Stone magazine touted as "The Strongest Space Cakes We Could Find” including incredible reviews by Wiz Khalifa and WAVVES.
To say that Kush Cake Pops have created a buzz is an understatement. They have been featured in Huffington Post, Vogue, TMZ, Skunk, SF Gate, and more. They are a hit with some of the biggest social influencers, business professionals, celebrity entertainers and music personalities like Miley Cyrus, G-Eazy, Chris Brown, DJ Skee, Snoop Dogg, Jason Derulo, and many more. This led to their celebrated 2013 “Pop” collaborations with recording artists like Gym Class Heroes frontman, Travie McCoy. Together they created the world’s first brand name celebrity Cannabis product: the Batsquad Bubblegum Kush Cake Pop. It was followed up with other popular collaborations such as the Rich Gang and Cash Money Records founder Birdman’s pop - The Five Star Stunna OG Kush Cake Pop.
They also teamed up with European Seed Breeding Company and DNA Genetics to create the first U.S. cannabis product in collaboration with a European seed company. These bold business moves personify how Sarai taps into a true strength of character coming through her intense struggle with seizures inspiring new, creative, and innovative business ideas and products.
Though cannabis helps with seizures, it’s not a cure. Sarai continued to perform at well-known venues in LA and toured with famous artists, but the anxiety that comes with performing live was too much for her system to handle. “My last live performance was in 2013 for Lady Gaga's ‘Born This Way Ball’ tour.” Shortly after, Sarai’s seizures were so bad that she was constantly in and out of the hospital. “We can’t always control what we are given in this life, but we can control the way we perceive it and how it will shape us. With every seizure I'm facing death. Last year I almost died. I had life threatening complications and had so many blood clots that they had to remove parts of several organs. I suffered lung failure, liver hematoma, nerve damage, and had four blood transfusions in order to bring me back to life. I thought about giving up and to stop fighting for my life in the hospital, but I realized it wasn’t a burden - it was a blessing. I recovered remarkably quicker than expected with the help of cannabis. I am a living example of how extraordinary cannabis is.”
Sarai continued to see specialists: neurologists, rheumatologists, acupuncturists, chiropractors, and Chinese medicine doctors all while on a cannabis regimen. She knew being on stage was overwhelming at times, but she continued to utilize her experience and knowledge as a performer to her advantage. New opportunities opened up. Now she is putting her skills in production to use working behind the scenes for big shows like the Grammy’s and People’s Choice Awards.
It doesn’t stop there; Sarai has found a new voice on a different stage. She started the Cannabis 4 Epilepsy Foundation with clear goals in mind: “I started the Cannabis 4 Epilepsy Foundation because I want to support and connect with others who are suffering from similar struggles. We all need inspiration in the dark times that can be associated with the seizures caused epilepsy. I’m focused on growing my Cannabis 4 Epilepsy Foundation and sharing my journey with others to help change the stigmas of cannabis and epilepsy.”
Recognizing the lack of support for those living with epilepsy, Sarai has been writing to members of Congress demanding rescheduling cannabis federally from a schedule 1 drug (which claims cannabis has no medical value) and providing the way for more medical research, especially for epilepsy. Her efforts are making headway. For the first time, the Epilepsy Foundation of America is recognizing cannabis as a viable option for treatment and invited Sarai and her husband to attend a board meeting in Los Angeles. “It was incredible. They were happy to hear about my cannabis journey and even proudly encouraged me to create a cannabis team for the Los Angeles Walk To End Epilepsy which will take place during epilepsy awareness month last November. It was a major step.”
As the date for the walk approached Sarai was feeling overwhelmed, but determined. She had spent the previous year re-learning how to walk again after surgical complications. “I was nervous and anxious from the pressure that somehow I was supposed to lead a 5K walk with a team of cannabis enthusiasts and epilepsy warriors only having started walking again a year ago. I was on the verge of backing out, I just wasn’t sure I could physically do it without having a seizure in front of thousands of others.”
She found strength from her husband and courage from the team whom she calls superheroes. “The support was incredible. We all walked loud and proud with our purple pot leaf on our team shirts, raising an unbelievable amount of cannabis awareness. We connected with so many other people and families with epilepsy. We spoke of the many possibilities of cannabis as well as the cannabinoids and terpenes found within the plant as a non-toxic non-lethal treatment for epilepsy in the future.”
The stigma that comes from more than eighty years of propaganda and prohibition against cannabis will not be wiped away overnight, but with people like Sarai and others coming forward to share their stories, there is a collective conversation that will bring about change. “I realize that by sharing my story and not being afraid to talk about my illness with others it has made me a much stronger and better person. Hiding my story all those years seemed selfish because some people needed to hear it and see it to know they can overcome and accomplish what seems like the impossible at times.”
Be a part of the conversation. To join it with Sarai or for more information about cannabis, you can check out Cannabis4Epilepsy.org. For more about Kush Kakery and Kush Cake Pop edibles go to kushkakery.com.
By Lynette Nutter - original published in Weed World issue 127