Be still… I can’t
This is a story that’s been over 50 years in the making and telling. I always thought of being born in the 1950s as an idyllic time period. My early childhood years of being surrounded with 3 wonderful older brothers and loving parents seemed to fit the mold of the Father Knows Best television era. I have memories back to when I was two and one half years old. Life was good then. With numerous kids in our neighborhood and church, there was always a game to be played and fun to be had. And summer vacations? You just couldn’t beat two weeks of camping at Table Rock Lake!
When the time for school came I remember walking into Mrs. Klosterman’s first grade class on the first day with Dave Hargis and mentioning to him, “I’ve only got 12 more years to go.” As I made my way through elementary school I did “okay” except for handwriting. I just couldn’t (and still can’t) write in cursive. As I grew into an older child I began to notice there was something different about me. My body began making movements I had no control over and I started making noises that seemed to come out of nowhere. I tried my best to control or disguise them, but those efforts didn’t help much. Why was I doing this when no other kid in school or in my neighborhood was? Then, as you may guess, other kids began to notice. Children are the most perceptive beings on the planet. They don’t miss anything! That’s when the questions started coming. But more problematic was the teasing, mocking, and bullying. I had no answers. All I could do was avoid, disguise, and deflect. But even that was like putting a bandaid on a gaping wound.
It finally got to the point where my dad thought it was a behavior issue and dealt with it from that perspective. I’ll not write any more about that, but suffice it to say my dad acted out of ignorance not anger. (Now I can’t close this paragraph without saying that both of my parents were/are the most loving people I’ve ever known.)
Even the medical community was ignorant back then. My mom took me to our family doctor when I was a boy and his exact words were, “He just has some nervous energy.” Well there you have it – case closed!
As I grew older, the hormonal changes that came with adolescence exacerbated what I was experiencing. My body was in a constant state of motion and the vocalizations grew more frequent. I became a master at disguise and deflect. And, if that didn’t work I’d just flee. But that didn’t stop what I was experiencing in my body.
Finally it was time to graduate. Those twelve years I mentioned back in the first grade were finally over. I got good grades, but that was because of my memory. Words on a page didn’t mean much. Words and numbers appeared to be jumbled when I tried to read them. So, I did the best I could.
Now fast forward a few years. On my own and working for a living I just knew I had to figure this out what was going on. So, I decided to get checked out. Tourette syndrome, dyslexia, and ADHD were the diagnoses. (And most likely sensory issues, too.) That explained everything, but what do I do with it? I kept it to myself for over 20 years until I couldn’t “disguise or deflect” it any longer. I was in a stressful position in my career and that may have pushed me over the top. Up until that time my previous 10 years of employment was a pretty low people contact position as I worked from home or I was in my car traveling in my local territory.
Whereas with many people with TS, if not most, symptoms and tics lessen with age, mine greatly increased. The toll it was taking on my body and mind was concerning. In 1999 I finally told my wife and family. Since that time they could not be more supportive.
In 1999 I also began participating in TS research studies at Washington University School of Medicine and the NIH. Over the years I’ve been MRId, PET scanned, injected with various substances, given numerous tests, and taken investigational drugs. None of which seemed to benefit me directly, but I saw it as my way to give to those who would come after me. Perhaps in the days and years ahead these studies would lead to novel breakthroughs to help people with TS live a more normal life. After the last drug study in 2016 where the side effects forced me to drop out after two weeks. No more drug studies. I was done!
I think it’s important to pause here and mention other aspects of my life related to TS. Over the past 5+ decades it’s impossible to count the number of times I have poured out my heart to God in prayer seeking answers, relief, and healing. (Kathleen and my family have joined in those prayers, too.) People with TS have varying degrees of life experiences. At its root, TS is an involuntary movement and vocal disorder characterized by “tics.” Believed to be a genetic defect in the brain, researchers still aren’t sure of its cause, which makes finding treatments difficult. Medications are used, but they aren’t developed specifically for TS, they were developed to treat other neurological disorders. TS falls into what is referred to as “orphan status.” The low number of people with TS doesn’t command the amount of funding as other chronic conditions such as heart disease – which is the number one killer of people worldwide.
For me, TS has had some life altering ramifications. When I was a boy I was very extroverted and outgoing. Later in life I’ve become more withdrawn. It gets tiring always having to explain TS to new people or friends I meet. And, if I don’t, the conversations and encounters are always brief. It’s even happened on more than one occasion where people in public places think I’m having a heart attack and have rushed over ready to give CPR. Or, they think I’m choking and want to give me the Heimlich maneuver. I’m very grateful for their concern, but feel a bit embarrassed at the same time. I thank them and offer a quick “Thanks, but it’s just Tourettes.”
With over 20 different tics TS is quite disruptive to normal activities. Abdominal and breathing tics make hiking or taking a walk with Kathleen difficult at times. And constant head jerking has led to a very stiff and sore neck along with occasional headaches. And, as bothersome as tics are physically, it’s the mental strain that’s tough. Constantly trying to manage the thousands of tics every day just to “be still” for a few moments wears me out. Many times during the evenings I just long for the day to be over!
And, yes, there is the career aspect. I’ll just say it’s been challenging. The one place you’d expect people (and leaders) to value and respect you based on your character and your results, didn’t always happen. I’ve had my office moved numerous times to remote parts of buildings so as to be away from others. However, there have been a few who have welcomed people like me. But, they are in the vast minority. (I am now retired!)
Fast forward to June 2021
I received a call from the research assistant at Wash U about another study. However, this was a non-drug, non-invasive study. The study involved placing a TENS unit over the median nerve in the wrist with a small amount of electrical current traveling up to the primary motor cortex in the brain. The hypothesis being the current may help regulate the brain activity that controls movement. I had nothing to lose and there were no real risks, so I decided to give it a shot. Real briefly, the study involved two visits of about 90 minutes each. And the time with the TENS unit turned on was less than 15 minutes per visit.
As we arrived for the first visit face masks were required upon entry. (Side note – face masks make my tics go off the charts!) It took a while to get everything set up then it was show time. To ensure the electrodes are in the correct place on the wrist, the current is turned up on the TENS unit your thumb twitches. The test began – two minutes on, two minutes off… four minutes on, four minutes off. As I sat there facing the researchers a video camera recorded my every move or lack thereof. After the visit was over the doctor went out to get Kathleen. Usually very cautious and reserved, he was dumbfounded! Kathleen is like, “What? Whoa!” The news was very positive! My tics were greatly reduced during the testing. The second visit two weeks later confirmed the results of the first visit.
As encouraging as those results were – what now? The unit they used for the study wasn’t a store bought unit. It was some special contraption made for the study. Gee, I wondered, and asked, “How do I get my hands on one of these things?”
November 2021
The research assistant called and asked if I wanted to take part in a home study for 4 weeks with a standard TENS unit. Absolutely! Sign me up. We picked up the unit on the following Monday. Now it was time for the real world study. Since having the unit for over one week now the results have been amazing. My tics aren’t gone, but they are greatly diminished. When the unit is on, my abdominal and breathing tics are 90-95% reduced and head and neck tics by 80-90% while involved in normal activities. Stressful situations cause flare ups, but when they’re over, calm returns.
So, what’s the point?
Over the course of my life with TS I can’t count the thousands of times I’ve/we’ve asked God to take away my TS – to give me relief. But none was to be found. Was it me? Was it God? What was/is the purpose?
The purpose is, first and foremost, to give God the glory for His sustaining grace over my lifetime. I’ve read stories from friends and others where God answered a prayer after a certain number of months or years. And, I know some are still waiting. For me it’s been almost 55 years in the making, and although my Tourettes isn’t gone, relief has come! Where previously I longed for the hope of Psalm 46:10 “Be still and know that I am God.” For now… be still and know – I can!
A final word
Friends, you may be hoping, longing, wondering if God sees you and your situation. You may think His eyes are dim and His ears are dull to your prayers. Rest assured, “The eyes of the Lord search to and fro throughout the whole earth that He may strongly support those whose hearts are completely His. 2 Chronicles 16:9
If you don’t know the One who created you – the One to whom all glory is due, please feel to reach out and let me introduce you to my Jesus.
With grace,
Hal
~~~~~~~~~~~~~~
I should note, when I signed up for the study in July of 2021 the age requirements for participants was 14-64 years old. I was 64 and would turn 65 in December, therefore excluding me from any further studies. Some people say that God may not be early, but He’s never late. Never late indeed. May His name be praised!
Epilog
Well, it’s now March 1st and I have an update to share. When I first wrote this blog I was 3 weeks into the MNS study and it was going great as you’ve read above. However, at week 4 at the end of the study I began to develop an allergic reaction to the gel pads that deliver the current to my wrist. This resulted in burns where the pads were placed. So, I had to quit using the unit and it took 4-6 weeks for the burns to heal. Since that time, and over the last two weeks, I’ve taken some of the gel pads and peeled off the gel down to the carbon fiber liner – which is conductive. I made a few prototype wrist bands where I adhere the “gel-less” pads on to the neoprene and velcro pad and strap that to my wrist. The jury is still out as I don’t know if/or how much benefit I’m getting using this method. There is still much research being done and to be done. But one thing I do know is that for those first 3 weeks, I had relief! The brain is a mysterious thing. Maybe the body’s “final frontier.” Still hoping. Still praying. Still…
