Guest Post: Living with Parkinson’s Disease by Jeff Wiles
Posted Aug 10 2013 10:13pm
In the last few days I met a man names Jeff Wiles on the infamous Facebook website. Some may know him from Facebook. Some may know him as he is a man withi Parkinson's disease and some may know him as, I discovered, he is an author of “The Godless Sky.” (see below)
Anyhow, if you know him or not, he posted the following in the Parkinson's Journey group on Facebook and I was so encouraged and inspired by his story, I asked if I might repost it here for those of you who don't do Facebook or didn't already see it. It is one of the most transparent and honest accounts of who PD changes one's life and those they love. I think each person will be able to relate to something. I hope you enjoy it, and thanks Jeff, for sharing.
Living with Parkinson’s Disease by Jeff Wiles
In the beginning, there was only a slight tremor. That was all. I wasn’t even worried about it too much. I just figured I messed up a nerve or something, that the tremor would disappear in a few weeks. But the tremor continued to worsen until I finally went to the doctor. He tried a few treatments to get rid of the tremor, but the tremor never went away. So he finally recommended I go to a neurologist.
Jeff and hisi wife, Kristi
In the fall of 2009, I was officially diagnosed with Parkinson’s Disease. The vision I had for my future immediately changed. I couldn’t even believe what the doctor was telling me. Prepare to live on one income? I wanted to work until I was in my seventies, like my grandfather did. Think about adding long term disability and assisted living to your insurance policy at work? What did he mean? This could not be happening to me. I was Jeff Wiles. I worked hard, I exercised hard. I still weighed the same as I did when I was in high school. I was not the kind of man that this happened to. These diseases only happened to people that were weak or feeble, or, at least, that is what I thought. But, despite my inhibitions to accept his diagnosis, the doctor was right. I had Parkinson’s Disease. And, as much I wanted to fight the disease, I could not.
In four years, I was put on disability, a word I didn’t even like to mention and still don’t, to tell you the truth. The dream house my wife and I built, the house in which I expected to live forever, we had to sell it. Even with insurance, the medicines and doctor visits added a burden to our finances. And then there was the decrease in my income. In my mind, the man was supposed to be the provider for his family. But here I was, watching my family’s finances collapse, and the fault seemed to fall solely upon me. I could not understand why God had allowed this to happen to my family and me. We were a happy family. Kristi and I had a great marriage. We loved each other and had fun together, and, though we were not wealthy, we were able to go on summer vacations and take the children to the movies or the zoo once in a while. Now, we had to eliminate all those little extras from our life, and the burden took a toll on us. It still is. I cannot say that I have learned to accept the fact that my illness has caused so much pain for my family and especially my wife. But still, I believe in my God. I have no other choice but to believe in Him. And the truth is I have learned some lessons in these last few years, as I am slowly trying to adapt to the reality of my situation.
Jeff's daughter, Emile
One lesson I have learned is that no matter how much we love what we have on earth, whatever is of this earth is temporary. Do you know what I fear losing the most? My muscles. Now, most of you might think that this fear of mine is sort of silly. But, then again, most of you do not understand how hard I worked to get the muscular body I have or how hard I have worked and am still working to maintain it. Now don’t get me wrong, I don’t look like an Olympic athlete or a candidate for Mr. Universe, but I sure look different than the skinny kid I was in the tenth grade. I have put countless hours in at the gym. I am not the guy that works out for a few months here and there. Since the age of sixteen, the longest I have ever went without working out is six weeks, and that was because of a hernia surgery. I have been committed to staying in shape my entire life. But no matter how committed I am to maintaining my shape, these muscles are going to shrivel away. I guess I always knew they would one day, but this disease will only accelerate the deterioration. Sometimes, I feel like having a little kid tantrum, stomping my feet on the ground, and saying, “That’s not fair, God. I worked hard for these.” But God tells us that in His Word anyway, that everything in this world will pass away (Matthew 24:35). So that immaculate yard into which you have exhausted so much labor and money, it will pass away. And that wonderful house you built next to the golf course, it will pass away. Your clothes will wear out, your cars will break down, your hair will turn gray or fall out, and my muscles will disappear. Why? Because cars and houses and businesses and even our bodies were not made to be eternal. But the treasures we lay up for ourselves in heaven, they are eternal (Matthew 6:19-20), so, if we believe this truth from the Word of God, shouldn’t we be giving more attention to them than our earthly treasures? You would think, but diverting our attention from earthly treasures to heavenly treasures is difficult for us earthly-minded humans to do. After all, you can sit on your porch and look at how beautiful your yard is, you can walk around your living room and see how beautiful the hardwood floors you installed are, and I can look in the mirror and see how my pretty my chest muscles are (just kidding), but I can look in the mirror and still see a few muscles. Harder to labor for treasures we will not receive until we die, isn’t it? But those are the ones we should be seeking, those that cannot be corrupted by rust or moth, those heavenly treasures, those are the ones into which we should be investing our time and labor. That should be our retirement plan – our heavenly treasures, because, for those of us that know Christ as our Savior, that is where we will be spending our retirement, not when we retire from work but when we retire from these earthly bodies. And I hear that we will be spending many years in that retirement home.
Another lesson that I have learned from having this disease is humility. Now, many people that know me may believe that I am a humble person. After all, I do not like to talk about myself or rave about my accomplishments in life, because that just does not fit my character. But my outward display of modesty is just a disguise for an inner arrogance that God has revealed to me, an arrogance birthed in the many obstacles I have overcome in this life. It started with the muscles.
In the tenth grade, I was a weak and lanky kid lost in a big school where I knew very few people. And I got teased a lot. So I transformed myself. I gained thirty pounds in one year, and most of it was muscle. The teasing didn’t completely cease but the episodes certainly became less frequent. And, when, in the eleventh grade, I decided that I wanted to go to college, my guidance counselor said that I would need an excellent SAT score to offset my lack of college prep courses. So I began to read prolifically, looking up the definition of every word I did not know. And, since I had only had basic algebra and geometry classes, I bought advanced mathematics books from the bookstore and studied them profusely. My SAT score was one of the top fifty scores in my class of 700. I even took it twice just to prove that my score was no fluke. Both scores were almost identical. And then there was the asthma. Most people don’t even know I have asthma, because I refused to allow asthma to prevent me from being in cardiovascular shape. I would stick an inhaler in my pocket and run as far as I could before having an asthma attack. Then, I would stop, rest for a while, and return home. I did this until I could run several miles without having an attack. And, when I returned to college in my mid-thirties, even though I had two children and a job, I finished with a 3.8 GPA, second in my class. These accomplishments had given me an abundance of confidence in my abilities, perhaps too much. In fact, even while I was listening to the doctor deliver my diagnosis and explain, in detail, what was going to happen to me in the future, I did not believe him. Maybe that stuff would happen to normal people, but not me, not Jeff Wiles. Little did I know how defenseless this disease would make me feel. I thought it would just be another obstacle to overcome. But I could not fight the progression of this disease. And I realize now that I am going to have to rely on God’s courage and strength to conquer this obstacle. My strength is not enough.
Jeff's youngest, Carson
Now, I do not mean to imply that having some level of confidence in your self and your abilities is wrong. But sometimes (and I think this was true in my life), we become more reliant on self and less reliant on God. But, no matter how strong you are physically or the level of your wisdom or the security of your finances, there will most likely enter into your life situations you are not prepared to handle, situations you will have to place into the hands of an Almighty God who has no limitations on earth or in heaven. God has a way of humbling us, of reminding us who we are and who He is. Sometimes we forget. I know I did.
Jeff's wife, Kristi
And so here I am, forty-four years old, with Parkinson’s Disease, an incurable disease that will continue to progress. I would like to claim that I have adapted well to living with the disease. I would like to claim that I have followed the common adage about letting go and letting God. But that would be a dishonest assertion. Accepting that I cannot do some things that I once enjoyed doing is still difficult for me. Seeing the financial burden that my medical condition has placed upon my family is still difficult for me. Knowing that I will never be able to give my wife all I wanted to give her is still difficult for me to accept. And then there are the sixteen pills I have to take each day, and the side effects that are sometimes detrimental. So, as much as I would like to say I have peace about my condition, I cannot say that. But I can say this – I still believe in my God. And I know that He brought my wife and me together for a reason. And, even though I do not understand why this tremendous burden has been placed upon us, I have to remember the words of Proverbs 3:5 – Trust in the Lord with all thine heart and lean not on thine own understanding. That is hard for me to do sometimes, but I would rather be suffering with Parkinson’s Disease knowing that Christ is my Savior than being in great health and living in sin. I can die with Parkinson’s Disease and still go to heaven. I cannot die in sin and go to heaven. So, on those days when I am sitting around feeling sorry for myself, I try to comfort myself with that thought – I am going to heaven, no matter how much suffering I endure here upon this earth. And, like Paul said in Romans 8:18 – the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us when we reach our heavenly home. And knowing that – knowing where I am going – makes it much easier to deal with where I am at.
If you are interested in Jeff's book, you can order it here: The Godless Sky