Six More NEGATIVE Things Dystonia Has Taught Me

Number Six

Six More Negative Things Dystonia Has Taught Me

Dr. Bill Bagents who was always kind, compassionate, and willing to help. I can think about Gerald Watts who loved the Lord and was well beloved throughout southwest West Virginia and conducted funeral after funeral in that part of the world. I can think of my own father who taught me, by example, how to conduct funerals; whenever someone compliments me for a funeral service, I’m tempted to tell that individual to call Dad and thank him.

I have also seen quite negative role models. One Christmas, we arrived at Tammy’s parents from Alabama on a Wednesday. I had an ear infection, made worse from traveling through Chattanooga and Knoxville and going over beautiful mountains and I probably should have stayed home from Bible study — Tammy begged me to do so. I, however, refused. Why? I knew a fellow who would stay home from the assembly if he sneezed, and I told Tammy, “I cannot be like so-and-so.”

I’ve never liked being around negative people. There have been visits I’ve dreaded to make because I knew that for the 30 minutes or so that I’d be there, I would hear nothing but negative things. I abhor whining and moaning.

A doctor told me years ago — when my disorder first reared its ugly head — that I wasn’t really as positive as I seemed; my demeanor had to be an act. No act. When you know that Jesus Christ has been raised from the dead and is now seated at the right hand of God, you don’t need an act to be positive. He lives. I can face tomorrow.

At the same time, a genetic neurological disorder is far from a piece of cake. My poor health is not a pleasant experience. It’s not an experience I’d wish on my worst enemy (okay, maybe Hitler and Stalin and bin Laden, and a few other of the most evil men to live). There are negatives to living with a chronic health condition. Anyone who says otherwise has never walked a mile in my moccasins.

Yesterday’s post had to be written. Jimmy deserved a fine tribute, for he was a fine Christian who sought to serve the Lord in every single way that he could. While Jimmy gained the promised hope we all anticipate, his death leaves a void in our hearts and in the Lord’s kingdom. Not everything about his death can be positive.

Today, I’m continuing to be negative. Not to be down on life. Not to wallow in self-pity. Not to seek sympathy. Simply to tell my story.

Tomorrow’s post, as promised last week, will be verses of Scripture to help us cope during difficult times. Today’s post will discuss more negatives in my life. Next week, I’m going to spend the entire week writing about positive things I have learned from the negatives. If we don’t learn from the negatives in life, we’re just plain stupid. Sorry to be blunt, but that’s just the way it is. God has used the negatives in my life to help me grow and mature. I’ll write about that next week.

Six More NEGATIVE Things My Neurological Condition Has Taught Me

Pain is Difficult

Some time back, my wife became so angry with me that she could have killed me. Every step I took, I muttered under my breath, “Oh, God! Oh, God!” She became angry that I would dare take the Lord’s name in vain. I wasn’t, not at all. I explained to her that the pain was so great that if I did not pray unto God with every step I took I couldn’t walk at all, the pain was simply too great.Pain is a hard teacher. I find it difficult to be positive when I’m in horrible pain. I find it difficult to be kind when I’m in horrible pain (If you don’t believe that, you’re more than welcome to call my wife). I find it difficult to endure most all of the medications prescribed for my pain. Nope, pain is not a positive; pain is difficult.

Medications have horrible side effects.

When I first sought help for my anger, I was sent to a psychiatric nurse practitioner to prescribe medications before seeing a clinical psychologist. She prescribed an antipsychotic, not because I was psychotic, she said, but so that my thoughts would “gel together” (for some reason, I clearly remember that phrase, perhaps because my thoughts “gelled together”). A couple days after beginning that medication, I was shaving in the bathtub, and my face was beginning to make horrible expressions all on its own, my muscles were contracting in unnatural ways.I immediately called for Tammy, and she came in the bathroom. I looked up at her and said, “Honey, I’m scared.” She laughed at me and wanted to know why I was scared — that was right before she started screaming as my face took on shapes neither she nor I had never seen before. She called the nurse practitioner on duty, and she said to take Benadryl (yeah!) and she prescribed another medication. The entire time I was taking the antipsychotic, I had to take an anticonvulsant to keep those muscle spasms from returning.From tics to impaired thinking to dry mouth to drowsiness, unpleasant side effects have become a normal part of my life. (I am no longer taking, for obvious reasons, the drug which caused the tics, impaired thinking, and dry mouth).


Frustration is a real part for anyone struggling with a chronic illness. It’s frustrating when I can’t find a handicap spot and must walk further, increasing my pain. It’s frustrating when I drop something in the floor (a quite common occurrence anymore) and have difficulty picking it up, and many times I just have to leave it — Not long ago, I dropped my iPhone as I was getting in my car at the gym, and I had to yell and ask a lady about ready to enter the gym if she would come and pick up my phone; she was most glad to help, but it’s frustrating not to bend down and get it myself. At the gym, I get dressed in an unusual manner, and occasionally, a guy or two kinda gives me a funny look: I sit on a towel and get my legs through my underwear, my pants, and then I put on my socks and my shoes and then I stand up to pull up my pants. I’ve been told all my life that the other guy puts his pants on just like I do; I have serious doubts that’s the case anymore.


My neurologist says that without a doubt my issue is genetic. That raises some troubling questions that have kept me up at night and have caused me to toss and turn (I know better; you trust God in such circumstances and go to sleep, but sometimes it’s difficult). Were my genetic issues simply a quirk at conception, or is it possible that my brothers have (or carry) my condition? Was it then passed on to my nieces and nephews? Could one of my parents expect to face difficulty later in life because the issue shows up in Mom or Dad (Mom is a much more likely choice)?

Of course, I worry about my sons. Is it possible that my genetic issue came from the fact that both my parents were carriers? Does the disorder, therefore, require two carriers to show up in offspring? If so, my children are, more than likely, off the hook. About a year ago, my neurologist called and wanted me to have a blood test. I refused without knowing what he was testing me for (I’ve lost a lot of trust in doctors, remember?), and that was a horrible idea. The test was for Lambert–Eaton Syndrome, a disorder which could explain my symptoms. Lambert-Eaton is a rare and interesting disorder, for in about half the cases the cause is lung cancer and in about half the cases it is simply an autoimmune disorder. How do you pray under such circumstances? Do you pray that you have a genetic disorder and not cancer, knowing that the genetic disorder could easily be passed on to your sons? Do you pray that you have lung cancer, which likely has no genetic component, but not be around to hold your grandchildren? During those long days, the tears flowed, and I implored the Holy Spirit to pray on my behalf (Rom 8:26). I do not have Lambert-Eaton.

Christians are not always kind

This, of course, is the exception rather than the rule, but it does happen. I have been chastised for needing a walker to move (yes, by a leader in the church). I’ve had Christians make fun of me. I had an individual ask in front of a Bible class if I wanted to run a 5k with him and then laughed and laughed. I was embarrassed (as was most of the class). Too be honest, many siblings in Christ could have made that remark and I would have laughed and enjoyed laughing, but I didn’t have the relationship with this person for that remark to be made by him. No, I do not believe the Christian in question meant any harm, but I was still slightly hurt.

People think they have all the answers

People mean well, and I mean no disrespect, but I’ve been diagnosed as having everything and given every old wives’ tale. I’ve been told to walk a couple miles a day (as I write this, I’ve just returned from the family room, and that took considerable effort and time). I’ve been told to eat ginger. I’ve been told that I probably have a pinched nerve. I told one kind soul that the issue was with a protein not carrying brain signals properly once those signals got to my waist (neurologically speaking that’s a long way from the brain); his suggestion was to find out what protein that was and to eat it — there was no use explaining that it doesn’t work that way; the issue is genetic and there (at this time) is no way to change the DNA.

Next week, Lord willing, we’ll take a look at all the positive lessons I’ve learned from the 16 negative lessons I’ve shared with you. Tomorrow, we go to Scripture for comfort and strength. God bless, Justin

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