By Chris Coates, HODA Founder and Board President
I have some things that weigh on me. Things I want to talk about. I feel that putting it out into the ether, whether relatable or not, will assist me in finding answers to the questions that the issues pose. Such as, at what point does sharing our stories become feel good fodder for people who are empty inside? When does the mission become clouded, forgetting the people, and focusing on the fundraising? How do we stay ethical, while balancing the need to attract funding through compelling community stories. The sheer amount of funding required to pay a team to research our little brain disease is beyond anything that I can fathom at this point in my life.
We can’t be everything to everyone, can we?
Sure, in my professional life, I was managing $50 million USD and more for my employer. But those were just numbers. They didn’t represent lives. Every dollar that comes into our foundation represents life. Every dime is a grandchild’s wish that their grandparent will feel better and be able to push them on a swing, or take them to the park, or get on the floor and play with them. These dollars and cents are a husband or a wife wishing they could go on that exotic beach trip and hike those giant mountains with their family. They are not just numbers to me. These are people. They are our community. How do we ensure the stewardship of the dollars that are donated? These are the things that keep me awake at night.
I am perturbed by the silent community. I fear that they feel left out or unheard. My heart is fully with these patients, families, and friends. I fear that they don’t feel as if they belong. Perhaps their symptoms are manageable and are viewing their diagnosis through the lens of the worst of us. Perhaps they tried to have interactions with our community and were chased off by a perceived slight or maybe someone discounted their journey or made them feel unwelcome.
Boundaries are critical to community
I am also disturbed at the idea that I will soon need to set some solid boundaries on what is and is not appropriate. I love that many in our community want to reach out to me directly. But, I don’t love that some may feel entitled to my personal life. It is difficult understanding and ‘knowing’ people over the internet. I am positive that many feel entitled to my personal journey, as I lay it out for the community. For the sake of bringing us together it is almost a call to action for us. I am constantly inviting those who remain silent to be a part of my story and find a kinship. This is because I firmly believe that without community engagement, we are done before we even start.
I know that laying your raw story out for all to see feels like an invitation. I totally get it. What I will say, though, that no one is entitled to the personal journeys of anyone else. People, even those within our community, are only entitled to what you tell them. What you want them to know. You do NOT have to preface your story or qualify your feelings to anyone to be involved in this community. I can’t promise that in the world but I can promise that here at HODA. We will shut down anyone who tries to assume otherwise on our watch. That is a promise we intend to keep to the very best of our ability here on the HODA Board.
Self-care matters when building community
Finally, I am worried that my own journey to healing is being derailed by focusing my energy on HODA. Hear me out, I am NOT complaining. I am concerned that if our community engagement doesn’t increase, I am wasting my precious, valuable years. This is not a guilt trip for anyone, as I know that guilt and shame are ridiculous and have no place in my life. I understand that fatigue is a gigantic part of HOD life. Sometimes, I feel as though I may be the only member of the community who is not afforded this grace. That I am assigned to carry the flag, regardless of my energy level. Is this a fair assessment? I’m not sure. I know that it weighs heavy on my mind.
I know that I wouldn’t want to walk away. I’m honored to have this place within the community. Feeling this sense of pride and humility I couldn’t have imagined. Still, it’s a heavy load to carry, isn’t it? This life calls on us to support one another, but also to support ourselves. It calls on us to take breaks and monitor our own mental health and emotional well-being. We have to be diligent about this, even more so when we are carrying the load of our story and the stories of our community.
Where do we go from here?
So, what, our dear community, what can you do? How can you help? I know you want to. I know you want to be a part of this community. It’s simple, really. Follow our social pages, engage with us on our posts and share them to your networks. Ask your friends and family to subscribe to our email list and consider hosting fundraisers, even on Facebook! Share your story with us! Email us your story or your contact information and we would love to share it out with the whole HODA community, if you would like us to, of course!
Fill out our Board Interest Form or ask how you can volunteer to assist the community in some small way.
There are so many ways to help! As we head into 2023, how will you support our community?
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