When we decided to do the New Jersey Walks For TS event Nov. 19 in Mendham as an extended family on behalf of Ethan, age 10, we had two goals in mind: We wanted to raise money for NJCTS, which had done so much to support us, and to show Ethan he’s not alone in his struggle with TS.
For the past few years, he’s been caught in a cycle of “Poor me, I have Tourette’s” and “It stinks to be me” victimhood. While these may be developmentally appropriate and normal stages along the course to acceptance, they are incompatible with any progress in therapy or getting at least a little control over the “tics of the mind” that consume our every waking minute.
During the days leading up to the Mendham Walk, Ethan began checking the website on a daily basis to see how much money we had raised for the cause, and he began to ask questions such as what NJCTS uses the money for and why people even did walks in the first place.
Not typically willing to talk about Tourette’s or his tics that are severe, he told his teacher about the walk and came home with unprecedented excitement one day announcing that we had to “check the site right away because [he thought his teacher] had made a donation.”
When he saw his teacher’s name on the list of contributors, you’d have thought he saw President Obama’s name or even Justin Bieber’s — his exuberance was through the roof!! On the day of the walk, his best friend rode with us, and although not typically runners, the two of them ran the entire race without stopping. Since the day of the Walk, Ethan has asked, “Mom, can so-and-so go to Mendham with us next year? He really wants to go.”
While Ethan is still far from empowered advocate, our participation in the Mendham Walk was a jolt for him out of victimhood and self-pity. It is a tremendous reminder that good comes from adversity.
In those moments when he’s feeling sorriest for himself and full of excuses, we now remind him how many people care about him, showed up to support him at the walk and made contributions in his name — and that the least he can do to pay it forward is fight a good fight against TS.