What I’m Grateful for this November
November is my birthday month and also a time that is very meaningful to me because of the holiday of Thanksgiving, which for me is a time to eat good food and be with my family. Since I was born on this month (on 11/18, the best day of the year— the fact that it’s the best day of the year and also my birthday is a complete coincidence), I decided to post this year about 10 things I’m grateful for during this first stage of my journey with Facing Tourette’s.
My family
My husband, daughter, and my chihuahua along with my brothers, nieces and nephews, and cousins have offered me so much support and love along the way as I begin my Tourette advocacy work and navigate my still relatively new diagnosis. I could not have gotten to the spot that I have in my personal journey as well as my work for other people without them.
2. My friends
My friends and social circle have also been a huge asset for me on my journey. They have listened to me vent and grieve and celebrate and go through all of the emotions I have been going through on this journey. One acquaintance through the theatre world was even the person who helped get me in to see the neurologist who went on to diagnose me with TS.
3. My medical team
My optometrist, neurologist, GP and CBIT practitioner have been people instrumental in getting me answers to what I have been going through. Before my diagnosis, I had basically completely given up on knowing what was “wrong” with me, but I was blessed enough to have advocates in my corner who did not give up on getting me the help I needed. And now I know how to navigate my diagnosis and that TS isn’t anything to be ashamed of.
4. My subscribers and followers
I have a group of great folks from all over the country following me on my TS accounts and subscribed to get my emails when I post to my blog. I’m really grateful for all the interaction and support I get from these folks. It’s what keeps me going and what makes me feel like my initiative is making a difference in the world.
5. The creators of CBIT
CBIT (Comprehensive Behavioral Intervention for Tics) is the leading therapy to help people with Tourette manage our tics. It involves exercises to identify when a tic is coming and substitute the urge to tic with other movements until the urge gets lessened over time. It’s a lot of work to get good at CBIT— it was practically a full time job for me at first. But it brought my tics down from a level that was causing me to struggle with basic tasks like cooking, walking and driving to a level that does not impact my ability to function most days. In addition, my entire teenage years and adult life, I have felt a lot of physical pain because of my tics, and while I still feel pain in my face, it’s a fraction of what it used to be.
6. Getting to create art
I am very fortunate to have the opportunity to create art in my local community by being involved in the Colorado theatre scene. Theatre is an excellent way to connect with the community and create spaces where people can feel seen and acknowledged in their struggles and their joys. Art is also what gets me into a “flow state,” where I don’t end up ticcing or worrying about ticcing and can just be fully focused on something that really brings me meaning.
7. Tourette Association of America
TAA is the premier national organization for Tourette awareness and CBIT advocacy. I am immensely grateful for the opportunity to partner with them as the leader of the adult support group here in Colorado. If you have Tourette and live in the state, please join us. If you live in another state, visit the TAA website and check out if there is a support group offering in your area.
8. Other individuals doing TS advocacy
I have been pleased to meet other people who work for or volunteer with TAA as well as become familiar with the work of other people doing advocacy work on social media such as Tictock Therapy, One Tic at a Time and Stephen Dijoseph. TS is a pretty commonly misunderstood condition, and it’s heartening to know that I am not doing my advocacy work alone.
9. People pushing for more research into TS
In addition to not being totally understood by a lot of people, TS is also a condition with little research being done. There is even the common belief that TS goes away in adulthood, despite the lived experience of many adults who struggle with TS their entire lives. TAA and other advocacy organizations are working to find ways to increase funding for and interest in TS research to improve quality of life for people with this syndrome.
10. Getting the opportunity to learn more about TS and related conditions
My advocacy journey is first and foremost an opportunity for me to grow as a person and learn more about this condition. There are so many ways Tourette’s can show up. It’s different for every single person. I have had to unlearn a lot of stigma to embrace my own syndrome and have empathy for others in their journeys rather than judgment. Learning more about CBIT, Tourette, research and other people’s journeys is the biggest blessing in my Tourette’s journey so far.
Thank you for reading about what I am grateful for in my Tourette journey so far. I’m so excited for the coming year and all it will hold for the world of Facing Tourette’s and Tourette advocacy. What are you grateful for this year? What do you want to see from us at Facing Tourette’s as we go on this journey together? Let me know, and, as always, thank you for Facing Tourette’s with me!
