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Hi everyone. Welcome to Traumatic Brain Injury (TBI) TB, brought to you by *Minnesota functional neurology (*MFNC is now The Functional Neurology Center.) .I’m Amy’s Zellmer. And today we are talking about self advocacy. Now self-advocacy can mean kind of several different things to different people. So I’m specifically today talking about advocacy in the way of spreading awareness about Traumatic Brain Injury. So it’s probably the most common question I get. Um, you know, whether in person or through email is how do I become an advocate? How do I get involved, how do I spread awareness? And my very first tip is to just share your story. It’s really that simple. And for me, that’s how it started. I wrote my story on my own blog and then I eventually had it published on the Huffington post. And from there it just kind of exploded and I kept writing and I kept writing. And now I do a lot of speaking.

Um, I obviously I do these YouTube channel, I have a podcast, you know, I have a whole bunch of avenues in which I do my own advocacy, but you don’t have to do that much if you can’t handle it. And so I want you to just start with sharing your story and everybody is at a different level of how they’re able to share their story. So for one of you, it might be writing, you might have really good writing skills for someone else, it might be doing videos like this. You might do better making a video. For others it might just be making an audio file. You know how, however it is that you’re able to share your story. Um, I want you to start sharing your story. Now, some things to think about when sharing your story.

I’m trying to say this very tactfully, but some people have trouble with their filter and some people have trouble keeping things short and succinct. So I really want you to keep those things in mind when you’re sharing your story. Don’t share TMI unless you’ve reached that level. Like you might work up to that. Reach your TMI T minus too much information. Um, and keep it succinct. You know, the biggest problem I see survivors make is they sit down face to face with someone. They start telling them their story. And after about two minutes, which is a long time like time it, we’re at two minutes in this video, when get to two minutes, the person kind of started zoning out and I was like, okay, get to the point, tell me what you’re trying to tell me. So if you can keep your story under about 90 seconds, about a minute and a half, um, that is the best starting point.

And now that doesn’t mean that that’s all that you’re going to share. You can gauge a person. So when you are first meeting someone and telling them your story, try to keep it under 90 seconds. If they’re engaged and they ask more questions, that’s awesome. Then you can give them more detail and more information. But that initial contact, that first time, whether you’re meeting like with a representative, a legislator, a Senator or Congressman, um, you’re meeting with a healthcare provider. You’re meeting just with someone new you’ve met, um, at a group or whatever it is. Try to keep it at 90 seconds. Cause the more succinct you can be, the more they’re gonna pay attention. And the more they’re going to remember. So think of this. If you start your, you’re like a three and a half minutes long, telling them your story and they’ve zoned out, they’re not listening anymore, they’re not going to remember what you told them.

So that’s not helping anyone. You know, you’re not, you’re not helping spreading awareness. So keeping it’s the sinked and don’t give TMI. Now when you’re writing it, you have a little more like leeway. I try to keep my pieces under a thousand words. Um, right around 750 is like the optimal point that people will read. If it’s very engaging, they’ll keep reading more. I have some pieces that are closer to 2000 words, but I’ve tried to keep my pieces out about a thousand words. Um, that is about where people’s, um, attention span lies. So when, when writing your story, keep that mind. Um, I had someone send me their story once and it was like 12,000 words, way, way, way too long, way too long. Like, nobody’s going to sit down to read that, right? So if you want to write your story but you’re not a good typer or you just, you don’t quite know how to get it from here to here, just start writing.

I tell people just start writing. You can have somebody else help you edit it down. Um, you, you might be able to edit it down yourself once you just kind of get it all out there, you can like try organizing your thoughts after you at least get it onto the paper. Um, so just start somewhere that is, that is my biggest suggestion in this video is just start somewhere with sharing your story. So once you write it down, then you can start practicing it. So the biggest thing, if you’re going to start meeting people and sharing your story, like if you’re going to start meeting with your representatives and legislators, practice, practice, practice, practice, because the more practice you do, the more likely you’re going to remember it because you know, we all know our memories. You can have it written down too. If you have to read it, that’s totally fine.

If that makes you more comfortable but practice, practice, practice. So that, you know, it’s like 90 seconds, right? Cause we, we just don’t want it to be too long and rambling cause that is when people tune now they stop listening and then they don’t, you know, they haven’t paid attention and they’re not going to remember what you told them, which totally defeats the whole purpose of getting out there and sharing your story. So you can write your story, you can do video, you can share it in person, you can do audio. There’s a lot of ways you could share your story to start doing advocacy and awareness work. So I want you guys to work on that. And you know, like I said, it might evolve to more. Maybe you’re a really, really good writer, so you start writing more and more pieces. Or maybe you’re really good at making videos.

So you start a YouTube channel. There are just so many options in today’s technology world and maybe you just need someone to help you with the technology part. And maybe you could ask a friend or family member if you know someone who’s in high school, they’re really good with technology. Like if you have a family member or a neighbor, you might be able to pay them a few bucks or buy him a Starbucks or you know, whatever it might be. Make them dinner. Um, but start sharing your story. That is the best first step and becoming an advocate. And from there you never know where it’ll go. You might start speaking at events, you might get radio interviews, you make newspaper interviews. You know, once you write your story, and again, keeping it succinct and not TMI, you can send it to your local newspaper, your local radio stations.

You just never know who might be interested. And you know, share that March is Traumatic Brain Injury awareness month. That might be a really good interest and lead in to get them to interview you or talk about you. So you just never know where the advocacy journey will lead. And if you’re not quite there yet, if you’re not quite ready to share your story, it’s okay. You know, you’ll get there in your own time. Not everyone can do everything. So, um, don’t, don’t push yourself. Don’t pressure yourself. You know, we get enough pressure from other people. We don’t need to do it to ourselves. So anyway, you guys, thanks for watching. Be sure to put a light on the video, share it, leave a comment. Um, the more we share these videos, the more other people see them and the more we continue to spread awareness. So thank you all for watching and I will see you next time.


Amy Zellmer, Patient Advocate