Seen Book - Full Layout - v34 - Amber Digital Pages-DESKTOP

UNFORESEEN CIRCUMSTANCES: JODI’S

Who I Really Am 8 / Opening Up on O2 22 / With Oxygen Tolerable 28 / Staying Independent: From Jodi 30 / SEEING BOTH SIDES: 36 / What I Never Saw Coming 38 / Invisible

The 10 BE Medical Terms You Need to Know 58 /

LOOKING FOR HARMONY: AMBER’S Voiceless Songbird 68 / The BE Rewind 80 Getting in the Groove 82 / Recipes in Tune

THE SECRET TO HAPPINESS: EDNA’S the Bright Spots 96 / The Unselfish Truth

The Power of Sleep 116 / Mantras for Getting 118 / Speak Up In BE...and Be SEEN 121

Looking for harmony

How a rapper with BE lost and found her voice

Imagine this: You’re 23 years old and you’ve just been featured on a multiplatinum rap album. You’re so close to stardom, you can almost reach out and touch it like a fan’s outstretched hand. The world feels like it’s yours, but in a few short years, several life-altering diagnoses will change everything.

At my highest high, I couldn’t imagine my life would go from center stage to in and out of the hospital. When my neuromyelitis optica (NMO) temporarily stole my ability to walk, I thought, “How can I recover?” When sarcoidosis, an autoimmune disease, appeared, I figured my life was over. I couldn’t guess that something else I’d never heard of—bronchiectasis (BE)—would be the final straw, the one thing that brought me to my lowest low.

But I’m still here. I still have hope.

In tune with myself and my purpose

It seems like a lifetime ago, but as a child, rapping was as easy as breathing. I didn’t have the issues I have now, and I was rarely ever sick. I was just a regular person—as regular as anyone could be starting their music career at the same time they’re starting elementary school.

I was only 9 years old when my sister and I formed a rap group out of our family apartment in Decatur, Georgia. While it started out as dancing, our group quickly became well known in the city of Atlanta, performing alongside other pioneers in the genre. During almost 2 decades, we were fortunate enough to be cheered on by local Atlanta legends, and eventually caught the attention of a national rap icon and went on to be featured on a multiplatinum album.

I had always been a writer, mostly of short stories and poems when I was younger. So when our first producers said they were going to write for us, I pushed back. I knew what I had to say was something that only I could write.

Not many people get the opportunity to chase their dreams at such a young age, but growing up in a family with 5 brothers and sisters

meant that I learned early on how to stand out and make myself heard.

What I loved most about my time in music was how performing made me come alive. When I was on stage, everything was different. I loved it up there. I could be me, I could be free, and I could always speak my mind.

But, while my rap career spanned about 20 years, I had no idea how much of a whirlwind my next act would be.

Losing my voice felt like

everything

Over time, I started to want more stability than music could provide, so I pivoted to advertising. I spent the next 7 years paving my way in a new industry. I was surrounded by creative people who encouraged me to use my voice in ways I never had, first as a producer and then eventually on the design side.

Around 2012, almost overnight, I lost my ability to walk and all feeling from the waist down. I was diagnosed with NMO, a chronic autoimmune disorder. After some time I regained the ability to walk, but the experience is one that still haunts me to this day.

Then in 2015, I was diagnosed with another autoimmune disease, sarcoidosis. Everything about my normal life disappeared,

I wasn’t prepared for how bad things became when I had to add the oxygen.