Did You Ever Stop and Wonder

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Did you ever stop and wonder just what Spasmodic Torticollis has done TO YOU.or FOR YOU? I’ll bet the vast majority of ST’rs would have no problem thinking of the first choice and very few of us thinking of the second. And I can’t blame you. I know I was there once.for just about 10 years. Let me tell you what it did TO ME and what it has done FOR ME.

It all started about 25 years ago when I received that “little” pain at the base of my neck and, as with all of us, then the dreaded pulling that followed especially while driving. It progressed rapidly until I entered what I call my “8 ½ years of HELL.” I was told the standard, “It’s all in your head, go see a psychiatrist; here’s a prescription for Ativan.” I stopped counting medical people at eighteen. The pulling never stopped; it kept getting worse. The pain? It was severe. It ran across my shoulders into my shoulder blades, down my arm and up the back of my head and then would swirl around the entire top. As if that wasn’t enough, I had pressure in my head. It felt like rockets were ready to go off momentarily. I wanted to put my head in a vise and squeeeeze. Add to that the burning sensation. My skin would feel as if it were on fire. That was scary.

I had real problems eating, reading, shaving, brushing teeth, showering, driving, sitting, walking – you name it. I had big time problems. The only thing that would take the pain away was alcohol, lots of it.and every day.

The light at the end of the tunnel was out. The combination of alcohol and Ativan was just too much for me. I couldn’t share my story with anyone. Who cared? Who would believe me anyway? My children even had a hard time understanding. And they were all I had.

I finally decided “no more”. I drove into my garage one cold winter night, left the motor running and all the doors closed. With tears streaming down my cheeks, I sobbed and said “good bye” to anyone listening. Fortunately God must have been listening because I didn’t go through with it. I even tried to do this once again; I didn’t succeed. God really was listening and helping.

Shortly after that I committed myself to a hospital to detoxify and get off, as one doctor put it, “those damn pills which are creating all those anxieties”. (And it wasn’t until years later that I found out one of the side effects of Ativan is suicidal tendencies). Why wasn’t I told?

I finally got out of the hospital after two weeks. I was SCARED; I was PETRIFIED; I was ALONE. My self-esteem was shot.

About this time I had heard of Mayo Clinic and I made an appointment to see Dr. Drake Duane. After three days of tests, I was confirmed as having Spasmodic Torticollis. What a relief for me. I finally knew. Now I could cope. I wasn’t crazy after all – a big, big relief.

And this is where the “rest of my story” begins. This is where I can definitely recount what Spasmodic Torticollis has done for me. I went from darkness into lightness. BUT, it wasn’t easy and it didn’t happen overnight. It would take close to 10 years. In fact, I still have to continually work at it everyday. In effect the past 20 years have been the WORST, but at the same time, the BEST years of my life.

I have put myself number one in life. I learned that I was a great person and that I loved myself. I could finally look at myself in the mirror even with that crook in my neck.

I found the only thing permanent in life is change. I had to learn to relive my life; to do certain things differently; to not do some things. And to not feel like a “PLOM” -“Poor Little Old Me” if I couldn’t do something.

I found out Greed and Jealousy were no longer “friends” of mine. Let other people have the power, the money. I know what I have. I have my life. That’s a huge resource.

As a result my self-esteem went up. What a fantastic feeling. Almost every morning I start out by chanting in the shower, “I’m alive, I’m awake and I feel great.” Try it – It will help you.

I learned to think positively about myself.and this is a never-ending practice – when you get a negative thought, replace it with a positive one.

Humor. Oh, what a help that is. I’ve learned to laugh at myself; make jokes of myself and ST; and in general, just to smile a lot, lot more. It releases all those endorphins, our body’s natural tranquilizers. Try laughing.

I found that when you help others you really are helping yourself. It’s a great, great feeling. It pays you back ten-fold.

And, God has re-entered my life. He was there when I was young and then I let Him disappear. He is now coming back stronger and stronger.

When you’re sitting there trying to get through the day as I used to, please try to change your life. As I mentioned, it won’t happen overnight. One big thing to do – get involved and remember a saying I have:


My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews