My volunteer journey with VEDA began around 2017, after I had been diagnosed with vestibular migraine. At the time, I was searching for anything and everything online related to VM, but everything was very clinical – there were no patient stories about how that person was living life (and especially living life well) with vestibular migraine. The only resources I could really find were WebMD and VEDA. I found myself relating to Kayla McCain’s story on vestibular.org – we were around the same age, and our symptoms were so similar. I was able to connect with her online, and we became instant friends. Suddenly, things didn’t feel so isolating.
Because I had lost my job in watch design to this illness, I felt my life needed some kind of purpose in between all my fighting with insurance, trying to figure out how to pay for my doctor appointments and therapies without a job, and navigating this new life. I didn’t want others to feel so lost and alone like I did. So I signed up to be a VEDA volunteer. I made calls welcoming people, shared my story online, wrote blog posts, and did everything I could when I felt good enough.
Alongside my volunteering, I wanted to create a more casual space for people with vestibular migraine that felt like a fun food blog, but with all the mistakes and good things I was finding while living with this illness – and thedizzycook.com was born. Over the years, I’ve participated in the Life Rebalanced Chronicles, made recipes, shared my story, helped organize the Life Rebalance Conference, connected patients and professionals to VEDA’s resources, and been a link between the migraine community and the vestibular community as a vestibular migraine advocate. The confidence I gained from volunteering for VEDA has helped me work with other non-profits like Miles for Migraine, Association of Migraine Disorders, American Migraine Foundation, CHAMP, and now Danielle Foundation and Migraine at School. And The Dizzy Cook now reaches millions of people who are living with unexplained dizziness.
For my volunteer work, I have received the One Who Listens patient award and the National Headache Foundation Headache Hero award. I am just thankful to have had access to great friends and a great doctor early on, and I hope that I can share that privilege with others.