Earlier this month, Brandy went to her local news hoping to find others in Canada suffering with the same constant motion she has, feeling like you’re drunk and walking in a funhouse. She wanted them to know about MdDS Friends, our support group where she helps as an administrator. In her role as a group admin, Brandy sees a glimpse of the story for each person who wants to be a part of the support group. Let’s explore her story and what volunteering means to her.
Q: How did you feel when you first discovered us?
A: I felt like I found a family. I felt like I found people who understood me.
Q: What motivated you to work with our organization?
A: Helping people. When I see a notification pop up that someone is requesting to join the support group, I put aside whatever I’m doing and let them in. I know what it was like to feel alone all the time and not have anybody understand. Some are just lost. And some are afraid. I understand all of that and don’t want anyone having to go a minute longer than necessary before finding what I found in the group.
Q: What is the biggest personal benefit you receive as a volunteer with our organization? What about the hardest part?
A: If I’ve made anyone feel heard and welcomed into the group, then that personally makes me feel happy. All the volunteers do such a wonderful, wonderful job. They all work so incredibly hard behind the scenes. I feel I don’t do much. I’m just the friendly gate keeper. Lol. Sometimes, I can feel the hopelessness that some have. I can feel the fear that they have. It’s been difficult in that way, because I want to help everyone. I want to be that shoulder for everyone. But that’s just not possible. The support group is the shoulder for everyone. It’s a bunch of different shoulders.
Q: What is the most memorable accomplishment of your volunteer experience?
A: Gosh, probably it’s the most recent thing. It’s sharing my story with the media and spreading awareness. It’s the most proactive thing I’ve done so far, probably because it reached a much larger audience than I expected. Sharing my story with the media took me out of my comfort zone. I was shaking while being interviewed. But I am so very glad I did it, because I know 100% that it spread an enormous amount of awareness. I reached people who had never heard of Mal de Debarquement. Some of them were completely misdiagnosed. Some of them had not been to a doctor, but just felt all of the symptoms I described and had that moment of, “Oh, my gosh, could this be what I have?” And because the story was shared on so many platforms, I’ve gotten messages from people from different countries thanking me for sharing my story. That feels pretty amazing.
Q: What have you learned?
A: I’ve learned to work together as a team with other volunteers. It’s been wonderful. I look up to the other volunteers tremendously. I see the work that they’re doing and how thankless it is, but they keep doing it. And what I’ve learned from the support group, is that everyone has different challenges that they face. Different levels of challenges that they face every day.
Q: In your opinion, what is the most important work that this organization does?
A: Spreading awareness. It’s key. It’s what will get this illness noticed and potentially help more people if they’ve been misdiagnosed.
Q: What do you hope the organization will achieve in the near future? In the long term?
A: Recognition. Validity. And in the long term, it’s pretty simple really: a cure.
Q: What impact do you want to make?
A: I want others to see that, hey, if that incredibly shy person can put herself out there and share her story with everyone, then I can, too.
I’d like to inspire everyone to do the same. Contact your local media. Newspapers, radio, tv, and get your story out there. Spread awareness in your community and see how far that can go, because you’d be surprised.
Q: What other organizations or causes do you support? What makes this volunteer experience a meaningful use of your time?
A: I‘ve been a volunteer at my local humane society for so many years. I’m passionate about animals. I feel volunteering anywhere is a great use of time for anyone. If you can finish volunteering somewhere and know that you’ve impacted the life of anyone, or in the case of volunteering at an animal shelter, impacted the life of an animal, then it just makes you feel good. I know personally it makes me feel really good.
Q: Does anyone in your life play a role in supporting your involvement?
A: In providing inspiration? My eldest son once designed MdDS logos. It was so sweet of him. My youngest son provides personal inspiration and encouragement. My husband is also there for me and in regards to sharing my story with the public, he encouraged me to go for it. He tells me everyday he’s proud of me.
Q: Do you have a message to share?
A: It’s simple: be proactive. Do something. Do anything. Get the word out there. Order some pamphlets and hand them out to your doctors, have a shirt made with MdDS on it and the website on the back. I have one and so do my parents. Have a yard sale and talk about MdDS to people and donate the proceeds, etc. There’s so much that can be done if we all work together to achieve a common goal, which is ultimately finding a cure.