From Not Knowing to The Awareness Show

It’s Spring in California, and my allergies are kicking up. Sometimes they are so bad I have to take a day off from work. It doesn’t help that even after a couple of surgeries, my airways are still obstructed. But I’m a little better, and it’s Spring, and there’s no need to let allergies or any of my symptoms from 22q11 slow me down. I have DiGeorge syndrome, a rare disorder that, due to parts of my chromosome 22 missing, several of my body systems have not developed fully. 

Growing up, my family could not figure out what was happening. 

School said I had a learning disability, but I also had problems with my sinuses, a cleft pallet, hearing loss, and digestive issues. School was hard for me, my grades were low, and I was bullied. Without much support from doctors, my family had to treat each health issue separately. 

Finally, in my 30s, I took a genetic test and learned it was DiGeorge. I had never heard of 22q11 and didn’t know what to do. My family and I were at a loss with this newly diagnosed disability. Because I was not diagnosed earlier, I had not received any support services from the Regional Center. But finally, now understanding the cause of my health and learning issues, the door to my understanding had opened wider. Once we knew, we did the research, and I became an advocate. And soon afterward, I went from being an advocate to becoming a leader.  

When living in Los Angeles, I volunteered for the 22q11 Foundation to help build awareness. I helped organize the 22q Zoo Day fundraiser each year, which helped develop my organizational skills. When I was a student at Cal State Dominquez Hills (CSUDH), due to a change in the committee leadership, I was nominated and became the President of the Human Services Association. In both situations, I started off not knowing what to do. I had a stick-to-what-you-know attitude. It was my dad who kept pushing me. Every time I hesitated, he would answer back, “Get out there, get the word out about 22q.” 

My parents are my biggest cheerleaders. My dad was my supporter in life. 

I’ve always enjoyed listening to the radio. I paid attention to the DJs on the L.A. radio stations and thought one day, maybe I could do that. With the success of volunteering and serving in the Human Service Association at CSUDH, I decided to start a Podcast. The first episode of The Awareness Show Podcast aired 13 years ago, and now there are over 115 episodes. I’ve interviewed everyone from self-advocates to celebrities, including the actress Donna Mills from Knots Landing and Dawn Wells, who played MaryAnn on Gilligan’s Island! In each episode, I’m building awareness about 22q11. Building awareness is an ongoing task. There is always more to do.

Beyond the podcast, I reached out to the California State Council on Developmental Disabilities (SCDD), first becoming a member of the Regional Advisory Committee for SCDD’s Central Coast office, where I assisted with technical support and social media. Then, after moving to Rocklin, I became a member of the Regional Advisory Committee for SCDD’s Sacramento office. When the pandemic arrived, I joined and supported the regional office’s development of a local self-advocate group. I was referred to the Department of Rehabilitation (DOR) through the State Council’s Sacramento Office. I had used DOR services when I was a student at Dominquez Hills, but I needed a job. 

I wanted to be off Supplemental Security Income (SSI). DOR linked me with a local agency to assist me with job preparation courses. While in training, Governor Newsom initiated a pilot program that modified the California Limited Examination and Appointment Program (LEAP) model to enhance job opportunities within state civil service. A job preparation course and a lifetime of self-advocacy prepared me for this opportunity. With referrals from DOR and job coaching from my vocational service provider, I got hired as an office technician for the California Department of Conservation. The job is a great match! I keep a bowl full of candy on my desk, and I get along with everyone. I am always ready to assist with administrative tasks, greeting guests, and setting up and staffing events. For me, the Governor’s LEAP initiative was a success. I have completed my probation and am now a permanent employee at the Department of Conservation.   

It wasn’t until I was 33 years old that I discovered I had Di George syndrome (22q11). But I always knew, regardless of my disability, that I had skills and talent to offer, and my family always encouraged me not to give up. My father passed away last year, and it’s been hard, but I have much to be thankful for. 

I still hear his voice and live by his encouragement; “Keep going,” he says, “Don’t take no for an answer.” 

It’s the advice that allowed me to advocate, to lead, and to always move on—from getting no for an answer—to knowing what I can do.

Michelle’s podcast The Awareness Show is available on Spotify https://open.spotify.com/show/1j5k1KhqgsewSGUWfLX5BL and Apple Podcasts https://podcasts.apple.com/us/podcast/the-awareness-show/id1468042960.

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