The Top Ten Negative Things Dystonia Has Taught Me

Yesterday, I shared some positive things I’d learned while struggling with my neurological disorder. Today I’m going negative. But, even these negative things have taught me positive lessons about God, his people, my illness, and my family. Here are the top ten NEGATIVE things I’ve learned walking the path of chronic illness:

Doctors are not God.

Doctors do not have all the answers. If I had a dollar for every time a doctor looked at me and said, “Justin, I have no idea what’s wrong with you,” I’d be ten times richer than Bill Gates. I went to doctors to find a solution for my pain and suffering. I couldn’t find the answer there. I’m reminded of an obscure verse in holy writ: “In the thirty-ninth year of his reign Asa was diseased in his feet, and his disease became severe. Yet even in his disease he did not seek the LORD, but sought help from physicians” (2 Chron 16:12, emphasis mine). And, I would greatly be remiss if I didn’t mention one poor, poor woman; she had a flow of blood and “had suffered much under many physicians, and had spent all that she had, and was no better but rather grew worse” (Mk 5:26).

Some doctors think they are God.

I have seen many physicians who, although they had no answers, thought they were so smart that they would be able to diagnose me in a heartbeat. I saw one neurologist at West Virginia University who thought she had all the answers, who is an expert in hereditary spastic paraplegia and dystonia, but failed to diagnose me properly (for a long time, I had a great deal of anger toward her, but I sent her an email simply to let her know where I am and what’s going on; her reply indicated she had no idea who I was, but writing her allowed me to get rid of what was eating me). When Wilson, my nearly 14 year-old, fell out of bed and gashed his forehead just above his eye several years ago, we took him to a plastic surgeon whom we knew. Tammy asked if Wil would have a scar, and the doctor said, “No, I’m so good at what I do, he’ll never have a scar.” If you want to drop by the house, I’d be happy to show you the scar.

Doctors like to get a diagnosis.

You may be thinking, “Justin, that’s a positive, not a negative.” As a general rule, I would agree with you. However, having been a guinea pig for a couple of years, I’ll tell you that’s not always positive. At one medical school, I was nothing more than a pin cushion; doctors would poke and prod, I’d have this blood test and then that blood test, I’d have this painful test and then that painful test. I won’t deny that some of that was necessary (my current neurologist says a lot of it wasn’t — hence, some of the anger I’ve had to work through), but at no time did anyone even attempt to alleviate my symptoms or my suffering. Not a single time did one of those physicians say, “Justin, let’s try this.” If they had only tried, I would have been grateful. My current neurologist has a let’s-try-this-and-see-if-it-works attitude. He has gained my trust and my respect.

Some people believe I am living in sin.

One lady I know had a major health scare. When the biopsy and lab work showed that her health and her life were not in peril, she looked at me and said, “God is blessing me with good health because I’m living right.” I had struggled to climb the three stairs into her home, I was in horrible pain sitting on her couch, and God, she claimed, blessed her with a positive prognosis because of her righteous living. Maybe she didn’t carry her thought out to completion, but the clear implication was that I was living in sin.Job’s friends most certainly thought that calamity had befallen the great hero of faith because he had sin in his life. In his opening speech, Eliphaz could not have been more plain:

Remember: who that was innocent ever perished?
Or where were the upright cut off?
As I have seen, those who plow iniquity
and sow trouble reap the same.
By the breath of God they perish,
and by the blast of his anger they are consumed” (Job 4:7-9).

I seriously doubt the sister in question meant what I heard her say, but to carry her statement to its logical conclusion would necessarily mean that I was living in sin.

I must tell you that I was offended by what she said, but then I had to think of the One who died, not because of anything he had done, but because of everything I have done. “He committed no sin, neither was deceit found in his mouth. When he was reviled, he did not revile in return; when he suffered, he did not threaten, but continued entrusting himself to him who judges justly. He himself bore our sins in his body on the tree, that we might die to sin and live to righteousness. By his wounds you have been healed” (1 Pet 2:22-24).

Some people do not listen.

My wife would happily tell you that I fall into that category. But, some have asked questions about my health, I have answered their questions, but they did not hear a single word I said. One lady asked me what was wrong with my knees, and I explained that the issue was neurological, not orthopedic. When she saw me the following week, she asked about my knees; again, I explained the neurological problem. The next week, guess what? Yes, she asked about my knees. I gave up, and finally started telling her that my knees were fine, even though she would give me a funny expression say that my knees didn’t look fine.I mentioned this to Tammy and she said that the lady just didn’t understand. True enough. But, if she asked about my health, she should have listened to the answer. If she really cared about me, she would have listened to the answer, at least that is my opinion. For those of you who do not struggle with a chronic condition, when you ask someone about his health, please listen to the answer.

The world is made for able bodied people.

In Virginia, many businesses put disabled parking further from the entrance than able bodied parking. At the high school my son attends, the disabled parking is further from the entrance than the spots for school visitors. Obviously, if other parking is available, I use it. But, when the other spots are full, and I must use handicap parking, it’s frustrating to see able bodied parking closer than disabled.

Some people like to stare and to laugh.

When I lived in West Virginia, I would frequently go to the YMCA for exercise. I’d ride a stationary bicycle and lift weights. The gym had several disabled parking spots, and I used to laugh and tell Tammy, “Why would a disabled person come to the gym?” I know someone who now uses a disabled parking spot when he goes to the gym. I’ll give you three guesses as to who that fellow is (and the first two don’t count, as my dad would say).

Earlier this year, my family and I attended a stock car race only because we were given tickets. Tammy and I neither one care for stock car racing (but, I greatly love Indy Car). The handicap parking was a long, long walk from the entrance and the walk was rough and steep. I even had the family go on ahead instead of staying with me so that they would not miss the race (yes, I slow them down considerably). I had contacted the track for information on handicap seating, but I could never get a response. There was no easy access to handicap parking, and I tried to go down a couple stairs to watch the race with my family. Nope, it wasn’t going to work. I can’t lift my leg high enough to climb most stairs. As I’m struggling with the stairs, people begin to gawk and to point and to laugh. My feelings were greatly. When I told Tammy, she told me — truthfully — that people probably thought I was drunk. The idea that people thought I’d consume alcohol, let alone get drunk, made me all the more angry (they didn’t know me, and yes, I look like I’m drunk when I walk, but still…).

Some people in this fallen world are just rude and ugly and cruel.

People can be nosey.

Some folks who do not know me will, after gawking for a while, come up and ask what’s wrong with me. Would it be wrong for me to look them in the eye and simply to say, “It’s really none of your business”?Other people want to know every detail of every appointment I have with my doctors. Not to give too much information, but nothing works right below the waist; there are times I really don’t want to discuss things in a mixed audience. Am I not allowed some medical privacy? I try, best I can, to keep the fact I have an appointment private, but sometimes people even pry as to when my next appointment is (there are some I’m happy to share whatever they ask, but other folks — to whom I’m not close — really shouldn’t ask). I appreciate the concern so very much, but I really don’t like being asked for every detail of what the doctor said.

The family suffers, too.

My mental illness has caused problems in my family; you don’t have to be a genius to understand that would likely be the case. Going on disability means that I’ll have about one third of the income as before (although, I am starting my own publishing company to publish my works, and I may expand it to publish the works of others). My family suffers from anxiety over my health — If I have deep brain stimulation (DBS), RJ, my 16 year-old, doesn’t want to be at the hospital because he’d be too nervous, he says, but he wants to stay home from school that day. No problem, he’ll not be going to school that day. He needs the freedom to deal with Poppa’s disorder in his own way.

The family has to make other sacrifices. Wilson, my 13 year-old, plays in the Lord Botetourt Marching Band; yes, he is a Marching Cavalier. He’s so thrilled to be a part of that band, and neither Mommy nor Poppa miss a single football game (and Tammy doesn’t like football — not sure exactly what’s wrong with her). Wil has competitions on several Saturdays. Mommy is going to travel the two hours in a car, but I won’t be going — four hours traveling in one day, sitting in the bleachers in the chilly air, getting back very late, and then being able to make worship the next day is simply out of the question.

It’s painful to let go.

I’ve had to let go of a great deal. When I went to the doctor’s, I’d always refuse a wheelchair (although both my neurologist and my general practitioner both are in a large group, and there exam rooms are a long, long way from the waiting room), but now I’ll happily accept a wheelchair from the valet before he goes to park my car. I can’t walk up the stands to watch the football game on Friday nights, so I sit on the track around the field where the view is not as good; when the band performs its halftime show, Tammy goes up in the stands to record it — we don’t get to watch Wil together.Most painful of all is the loss of my role as a preacher. The goal is to write and use my God-given talents reaching people through the written word, and, providing I am able to get relief through Botox injections and/or deep brain stimulation, I can return to the pulpit in time. The biggest concern is the mental illness — OCD and bipolar disorder. Those issues must be controlled before I seek to serve another congregation of the church of the living God.

As my mother would say, life isn’t always fair, but it will be made fair in the end. That is my hope. That is my confidence. That is the promise of the God I serve.