When Kellan Barfield asked me what my hopes were for the Life Science Professionals reading this blog, I asked right away if finding a cure for Tourette’s would be too big of an ambition! Is it?
I was 16 when I was diagnosed with Tourette Syndrome (TS). There are two ways TS manifests itself—either through involuntary verbal or motor tics. I experience the motor tics. For those who aren’t familiar with the word, “tic,” tics are sudden, brief, intermittent movements or sounds. In dealing with the motor tics, I am constantly at war with my own mind and body, with impulses to repeatedly blink quickly, shrug my shoulders, clear my throat, bobbing my head, etc. The best I can compare it to for those without TS is like having an itch on your foot that you can’t scratch. It affects you severely but you can’t do anything about it.
I want desperately to be able to control these impulses. I do not want to be blinking, or shrugging, or clearing my throat. My mind and body don’t want to. My body is tired. My body wants to relax and settle down. Many say the tics are supposed to calm down and become less evident as one gets older, however, for me, it has been the opposite. It has grown more apparent the older I’ve got.
As I sat in that doctor’s office, at 16 years old, I felt the weight of impending adult failure. I’d never get married—who’d want to marry someone who was broken? I’d never had a family- and wife, no kids.
I was already having trouble in school. It was hard to focus on the board or a test when my eyes were blinking a million times a minute or when my shoulder shrugs were painful and incessant. The battle I’d be waging within my own mind and body every day would seal my fate- I’d never go to college. Never amount to anything. My life would never have any meaning or importance to anyone. Again, I felt broken as a human.
I felt all the loss at once. I thought about my fears of the future, the friends who’d surely turn on me once they noticed my odd movements and found out I had a weird mental disease. The sports I enjoyed playing, and acting was out of the question. No more school shows—who would cast me just to have me show up on stage and have a tic attack? Unable to focus on my lines, the music, the other actors, or the story as my tics took over.
Cut to the good news- I was wrong! About everything I thought I’d never achieved. While pre-performance jitters definitely brought on fits of blinking or clearing my throat so hard it hurt (and it certainly wasn’t quiet or unnoticeable), I would actually find relief from my tics when performing or having any kind of fun!
Though I continue to have tics when I speak and get up in front of audiences, I don’t feel them the same way. Videos of me speaking show that the tics still occur, but I’m not burdened by the experience of them while I’m addressing a crowd, sharing my story, or teaching my #CutTheCrapsimplicity and productivity techniques.
I would end up meeting Emilie, and “disclose” my Tourette’s to her within 2 weeks of dating. I wanted to give her the out before we got too invested and then I’d eventually lose her once she realized I had TS. I wanted to save myself from the hurt. Surprisingly, she told me it made no difference to her and she would never let my Tourette’s affect how she felt about me.
We have been married for 6 years. I sang to her at our wedding. We have 2 beautiful children. I have a family.
Because I worried I’d never have all of this, I do think I appreciate it more. I live with major gratitude for all these blessings, and I am extra driven to make my life even more meaningful. Sharing my story means a lot to me. I get to make kids feel that Tourette Syndrome is not a death sentence and that their lives can still be full, productive, and joyous like mine.
Though I thought of it as a curse for so long, I began to understand and recognize Tourette’s like a blessing, too. I began to see it as an opportunity for me to better understand the hearts and feelings of others. I have been actively trying to advocate for TS and have been working with the Tourette Association of America, as I’ll be participating in various future events.
But man, if I could stop it, I absolutely would. I’m exhausted by noon every day because I have already gone through an entire day’s worth of physical motions- blinking, flexing, tightening, and squeezing- and the mental strain of wanting them to stop so I can just be still and focus. Emilie has sometimes been in the middle of a sentence, and I’ll want to be present for her and listening, but tics will steal my focus, the same as they did when I was in school.
I also live with anxiety and depression, each of which has a correlation with my Tourette’s. Many times I get anxious about my tics, which then causes even more tics. When I get depressed, I feel out of control and hopeless, which Tourette’s doesn’t help with either.
I used to get really scared that the tics would prevent me from being a good father, but I’ve actually experienced relief from Tourette’s through parenting. If I’m having fun playing with my kids, I actually experience little-to-no tics. And if I’m in the middle of a series of tics I can’t stop, I can be jogged out of it if anything happens, like my kids laughing or singing. That sudden, “bigger than me” event happening makes the tics stop.
I’ve tried medications- believe me, I’ve tried. I would love to have some way of actually regaining some control, rather than counting on chance events and external stimulation to keep me steady.
I’ve been on over a dozen medications to treat the symptoms of TS over the course of many years. SSRIs, anti-depressants, anti-anxiety medications, sleeping pills, muscle relaxers… Once I was on a medication that turned me into the Incredible Hulk—I was literally throwing shoes, punching walls, and just so angry all the time. The irony was that it was a medication designed to lower blood pressure and reduce anxiety, but it had the opposite effect. I was on a specific brand of medication for 9 years and had to get off of it because its side effects were so extreme, they recalled it and wanted all users to get off of it.
One medication in high school made me pass out, so I was always falling asleep in class. Remember that the tics were already distracting enough, so you can imagine it was a huge challenge to learn anything if I couldn’t even stay awake!
I can sleep, and I don’t have tics while sleeping. I’ve tried medications that give me deeper sleep, in hopes that I’ll at least have more energy the next day. I’d love to make it to 2pmwithout feeling wiped out… maybe 4 pm… is dinnertime too much to ask for? I’d love to sit down with my family and have dinner and be able to play a game after without feeling my eyes close and my body shut down.
I’m sharing all this because I hope the insights will be helpful in finding, if not a cure, then at least a treatment that actually affects and targets the tics, themselves. Nothing medical that I’ve tried has made any noticeable difference in the frequency or intensity of my tics.
I will say that I have found some improvements through my #CutTheCrap methodology and approach to minimalism and simplifying my life. Whether I was on medication or not, my tics would go down when I’d be surrounded by positivity and clear space and nothing extra that would cause me to be anxious or trigger depression.
I’ve found relief through meditation, prayer, laughter, and doing relaxing things like getting a massage, listening to music, reading books, and generally having a good time.
And I do know how fortunate I am to be able to succeed! I was scared I wouldn’t be able to amount to anything. But now, I have a business, a family, and a book I wrote to help others find relief and growth through the principles of minimalism: MINIMALIZE TO MAXIMIZE YOUR HAPPINESS: CUT THE CRAP. I thought I could never learn, but I have a Bachelor’s Degree and a Master’s Degree, and I’ll have a Ph.D. someday, too.
I also have a superpower, thanks to Tourette Syndrome: because I felt like such an outsider and felt so defective, I identify with others who feel this way, too. Well, now I do. For a long time, I was so focused on myself and what others thought of me, and that caused me even more anxiety, which caused more tics. I think getting older helped me to let go of some of that insecurity and begin to embrace empathy.
I focus on others now, which helps, actually. Taking the focus off of myself helps and I get to be someone others look up to and can relate to. I can be a voice of hope, through speaking, through coaching my clients in cutting the crap from their lives—mental, emotional, physical, digital, and business clutter.
This has deepened my relationships, as has opening up about it. Sure wasn’t easy to admit or announce to the public. It was humiliating for so many years. But now, the more I entrust those in my inner circle and tell them about my Tourette’s, the more they are able to be there for me, and the more I’m able to relax around them, which in turn reduces some of those tics.
I want to continue to be there for others and to be their voice. When I do speaking engagements, share my story on social media, and advocate for mental health and wellness, I get so many people reaching out about how they struggle, too. A mother messaged me about her daughter in middle school who has TS and was so embarrassed about it that she stopped participating in any of the activities she once loved. I can relate, and I only wish I could do more to help.
Even more often than people with Tourette’s, I get parents of kids with Tourette’s writing to me and asking for anything that will help. I give them what I can.
So, on behalf of the hundreds of thousands of children and adults affected by Tourette’s, I want to thank the researchers who are doing what they can to help us. Please don’t give up. We want a cure, but we really would take any improvement! We’d make tradeoffs—short periods of sleepiness, making changes in our diets, taking a daily shot, taking medications 10 times a day if necessary. I don’t care, anything sounds great right now.
It’s hard to even imagine what my life would be like without it. I’m not saying it’s even as drastic as this, but I’d relate it to being able to walk after a life of paralysis. It’s just that feeling of freedom—physically, emotionally, spiritually—it’s been a constant battle with the crap I want to cut.
With this off my shoulders (literally), I would be light as a feather. Nothing could stop me from embracing my superpowers and doing even more. If you could even reduce the tics by 50%, it would have a huge impact on my life, my family, and my ability to help others. Please keep it up, and reach out to me if you think you have something! I’d love to help you get the word out about it if it works.
In the meantime, I’ll keep speaking, keep moving forward, keep advocating, and keep hoping.
To contact Jake for patient advocacy or other speaking opportunities, reach out to him at jakebmelton.com or e-mail [email protected]