Connection With Peers and Advocates
My First Connection
One of the key things I did when I got my diagnosis was to look for others who were going through the same thing. The first people I connected with in the NODCC community were parents of a little kid with ACC. They were awesome and really helped me get to know this amazing group of folks dealing with DCCs.
Meeting Renee
So, I met my late friend Renee Rose Oliver one day. She had not only a DCC, but hydrocephalus and epilepsy. We initially connected online and decided to hang out at a local mall. Right from the start, it felt like we were twins! We spent
the afternoon just chatting and laughing, bouncing from one topic to another at lightning speed, just like only those with ADHD can understand. We were totally finishing each other's sentences and cracking up. You should've seen the looks we got from other people! Within a few months even got tatoos together. I miss her very much.
Since then, I've met a lot of people with DCC and their families. It was such a cool feeling to finally feel like I belonged somewhere—I really found my tribe. I’ve also connected with folks who advocate for the neurodiverse community, and they’ve helped me find tools and services that I couldn’t have figured out on my own.
Learning To Self Advocate
For many years I felt I had no personal power to change things in my life. Years of misunderstanding and ignorance took their toll. Years of couch surfing and even homelessness sealed the deal, I believed I had no personal power. This all began to turn around when I was diagnosed.
Years back, I went to see this Ericksonian therapist who planted a little story in my mind. At
the time, I wasn't really ready to take responsibility for my life; I felt more like a victim. On my last day of therapy, she shared this tale about a tomato farmer who planted, weeded, and watered his garden until the tomatoes were ripe. She said the story was all about the question of personal responsibility. She also mentioned that I’d probably forget about it until I was ready to embrace my own power.
Fast forward to the day I got my diagnosis. I was sitting in the neurologist's office while he explained the scan results. When I left, I felt super light, like a feather. Suddenly, I heard those words in my head, "you're ready for the question of personal responsibility," playing on repeat. I had totally forgotten about that therapy session!
That day really changed everything for me (this is the first time I'm sharing the whole story with anyone). Little by little, I started to feel more confident. Instead of focusing on what was 'wrong' with me, I began to discover what was right. I connected with people who supported me and helped me be my best self.
Now, I really want to share this journey of self-empowerment with others so they can also find that confidence within themselves and also to recognize when it’s ok to ask for help and that it’s totally fine to do that.
I am grateful to those who have walked beside me (and still do) in this journey towards self discovery, and I hope in some small way I can repay the favor.
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