Minority Mental Health Awareness Month: Grief Leads to Advocacy Work

July 6, 2023

Regina, her brother, and her daughters.

by Regina Gordon

My brother’s passing sent me over the hill, and to my ADVOCACY work!

My brother was my biggest support, advocate, and listener. We truly understood each other. He called every day, and we had the greatest early morning talks. As I dressed and readied myself for work, we discussed the agenda for the day. It was like clockwork. A beat never missed! Our health conditions mimicked each other. He had polymyositis while I was dealing with sarcoidosis. We compared our aches and pains, our weaknesses, and mental stability was huge. Vacationing together were fun and exciting times. Oh, we had loads of fun! We were like two peas in a pod. That all changed in 2015, my brother passed away and I lost my best friend, my support, my listener, my mental health buddy. I was devastated! My life was altered.

The passing of my brother left a crater size hole in my mind, body, and soul. Shaken to the core, I needed to find an outlet quickly. For me counseling was not the answer as I had tried it many times. Finding like-minded people is what was needed. During this time, I was in my last year of college, working towards my masters. Two semesters to go and it was pure struggle. My final semester I enrolled in a public event course, which prompted us to facilitate a community event. At that moment, because of missing my brother, I decided to start a support group. During my research, I stumbled upon the Foundation for Sarcoidosis Research (FSR), who had a tool kit on their website on how to start a support group. This was the solution to one of my problems. In 2016 I completed my project, started my support group, and graduated. However, I was still feeling lost, lonely, and felt mentally incomplete.

Operating Sarcoidosis Fort Wayne Support Group was exhausting, but well worth the venture. The experience catapulted me towards a new direction in my life. However, it wasn’t enough. In 2018 I received a last minute “call” from FSR to attend an ambassador training. Two days later I was on a flight to Bethesda, MD., and that’s when a sense of unwavering calm came over me. Meeting my “new family” of advocates gave me comfort, just like home. The mental breakdowns and cries are still there. I still miss my brother’s support and morning conversations. He is with me every single day; his favorite hat is kept in my truck and is my traveling buddy. When those mentally challenged days encompass me, I have a complete support system in place. It’s called family! They have been there since day one. Mental health affects us all, we choose how we deal with it in our own way. Gardening and writing poetry are the activities that help keep me focused and grounded. It’s an expression of me. Raising awareness about my chronic illness is mentally exhausting. Concluding, knowing when it’s too much I do know how to care for myself and seek help.

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