Lupus Awareness Month with artist and activist Johnnie Jae

Hope Floats

For Lupus Awareness Month, Eighth Generation has partnered with Johnnie Jae (Otoe-Missouria and Choctaw), an artist and disability rights activist to launch our Hope Floats Silk Scarf. This Native-designed silk scarf brings awareness to an often misunderstood disease, and one that disproportionately impacts women and Native Americans. 

Johnnie is a self-professed “Indigenerd” that aspires to create revolutionary healing and change in the world through the power of radical imagination. Her art reflects my culture, advocacy work, and healing through the act of creation. As the founder of A Tribe Called Geek, a media platform celebrating Indigenous contributions to pop culture and STEAM, Johnnie inspires both Natives and nerds to explore their passions and advocate for justice in their communities (and fandoms).

She also has Lupus, and has written this blog post to share more about the disease, her own journey with Lupus, and her fund- and awareness-raising Hope Floats Silk Scarf. The following post is by Johnnie, and Eighth Generation is incredibly grateful for her words, teaching, and generosity. 

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What is Lupus?

Lupus is an autoimmune disease that affects the immune system, which produces antibodies that protect the body from viruses, bacteria and other infections. However, because Lupus affects the immune system it is unable to distinguish your body’s healthy cells and tissues from cells and tissues that are compromised by sickness or injury. The immune system’s inability to distinguish the difference leads your body to create auto-antibodies that attack healthy cells and tissues causing pain, inflammation, and damaging other parts of your body (skin, joints, organs, blood, etc.).

Johnnie Jae's Hope Floats Silk Scarf design

My Lupus Journey

I was nine years old when I was diagnosed with Lupus. I don’t remember much about my diagnosis, except that I spent years waiting to start growing bunny parts because I watched “Night of the Lepus” way too many times as a kid. I thought I had some rabbit disease. I didn’t realize the fear was something that would stay with me. Living with Lupus is living in a constant state of fear because it doesn’t matter if you take your meds, eat the right foods, exercise, or do everything right because you are at the mercy of your own immune system. There’s no set pattern as to how the disease will progress and the symptoms often mimic other diseases or trigger overlap conditions that only complicate things further. The only thing you can really do is deal with whatever challenges the day brings.

As sick as I was as a kid, the doctors had told my parents that my chances of living past 19 years of age were very slim, so my parents had decided to try and give me as normal of a childhood as possible. They never told me why I was sick all the time. It came as quite a shock when I was 18, and they had to tell me since I would now be responsible for making my own medical decisions. I went through a whole period of believing that I wasn't going to have a full life and was living on borrowed time. There were times when it really seemed like that was the case but then I hit 19, then 21 and 25 and it wasn't until I entered my 30s that I was like "Oh crap, I'm going to live" and had to really try and figure out who I wanted to be and what I was going to do with my life. 

I think it's important for me to advocate for Lupus Awareness, especially in the Native community because Native people are ten times more likely to be diagnosed with Lupus and at younger ages than any other ethnic group. We also don't have ready access to the advanced and specialized care that Lupus patients need, so it tends to be more severe, and we have higher mortality rates.

Lupus is also a condition that is hard to diagnose and is oftentimes misdiagnosed because it mimics other illnesses and there is no cure. It is unpredictable, and while it can be managed with the right medications and even a healthy diet, you never know exactly how it is going to impact you. Lupus flares can be mild or life-threatening, you can be fine one minute, and the next, you're dealing with organ failure or other life-threatening conditions. This is why I think it's important to advocate for Lupus awareness and make sure that we're as educated as possible to recognize symptoms and know how to advocate for our care.  

Giani Moses (Tulalip) modeling Johnnie's Hope Floats Silk Scarf

My Hope Floats Silk Scarf

I created the Hope Floats Silk Scarf to help raise awareness about the prevalence of Lupus in our Native communities and honor the strength and courage of those within our communities living with Lupus. 

Having lupus or any disability requires you to be bold and resilient, so I wanted to create a strong and elegant design to represent that boldness and resiliency. I wanted it to demand attention, the way that those with Lupus and other disabilities have to demand to be seen and heard within the healthcare system. I also wanted to incorporate a lupus butterfly. It symbolizes one of the most physically recognizable symptoms of Lupus, a butterfly-shaped or malar rash that appears on the face. But there is also a deeper meaning because the butterfly symbolizes chaos and hope that comes with learning to manage and live with Lupus. 

-Johnnie Jae

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Donation 

In honor of Lupus Awareness Month (May), Eighth Generation and Johnnie Jae are donating a portion of proceeds from our Hope Floats Silk Scarf to Jeffrey Veregee (S'Klallam) and his family. Jeffrey, a renowned artist himself, was recently diagnosed with Lupus and is currently fighting for his life against the disease. On Christmas Eve of last year, Jeffrey and his wife received a hospital bill for his most recent treatments: Jeffrey’s hospital bill is currently $3.75 million and counting. You can also donate directly to Jeffrey's Go Fund Me at gofundme.com/f/help-jeffrey-veregge-with-medical-expenses. 

Learn More

For more information on Lupus, visit the Lupus Foundation of America's website at lupus.org. Johnnie's own art website is johnniejae.com, and you can read about all things Native and nerdy on A Tribe Called Geek at atribecalledgeek.com.