Faith in the Midst of Dermatomyositis
by Guest Author, Steve Williams
Before Dermatomyositis I was a pretty healthy guy. I was in good shape, went to the gym 7 days a week, played sports with the kids, and in Men’s leagues. I did pretty much whatever I wanted, I had no physical limitations. I went to church on Sunday mornings, helped with the kids and outreach but I was just going through the motions. It wasn’t until I needed God the most that I quit just asking of him and began to listen to him. Initially I blamed God for the pain in my life, but slowly I started to hear the whisper of his grace. I didn’t know it then, but God broke me to fix me because he loved me. Author C.S Lewis said, “God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world.” Because of this, I was finally ready to listen. It was a difficult process however.
When I woke up on April 12th, 2012 I could barely get out of bed, had a tremendous amount of pain in my extremities. I couldn’t walk very well without help and couldn’t close my hands or lift my arms. I wasn’t able to do small tasks like open a bottle of water or take a shower without help. I called my primary care doctor and they got me in immediately for some blood work. The next morning I awoke to what seemed like a million messages on my phone where the doctor’s office had tried to get a hold of me, they had called Teresa and she was trying to get a hold of me. The message was go to the Hospital immediately to be admitted. That’s when it all started Friday the 13th April 2012. My first day in the hospital for Dermatomyositis, followed by 187 more days in the last 42 months.
I spent a few days at Adena and they weren’t really sure what was going on. I went through every test imaginable and was sent home, not doing much better, with some steroids. I came home and couldn’t do anything on my own; I was fully dependent on Teresa for everything. I made it at home for about a week until I was having horrible chest pains and problems breathing along with basically sleeping 22 hours out of the day. I headed back to Adena and my blood work showed I may have had a heart attack. I would have periods of time when I could not breathe at all on my own and they would have to inject me with tons of nitroglycerin and morphine. I literally thought I was going to die during those times. It’s a horrible feeling gasping for air and not being able to breath. I couldn’t speak during that time but I distinctly remember the look on Teresa’s face, the tears in her eyes, and the desperation in her voice. It was right then that I truly knew no matter what she was there for me. She was my strength then and has remained my strength through this whole process. So here I am with another 7 days at Adena having every test imaginable before being transferred to Ohio State with no diagnosis yet. If you have never tried it I would suggest to not ride and hour in an ambulance 3 hours after having a heart catherization (not a lot of fun). I arrive at Ohio State and see probably 80 doctors in a matter of hours. I had just had every test imaginable at Adena so why not try them all again at Ohio State. Maybe the second or third day at Ohio State I got up and made it to the bathroom hugging the IV pole like it was actually going to stop me if I decided to fall face first. I made it to the bathroom and back in bed. A few minutes later I felt as if I was swaying back and forth on a boat in the ocean. All at once it stopped and I could no longer move anything from the waist down. Talk about devastating!!
I am a firm believer that when something tough happens in your life you have 3 choices. You can let it define you, let it destroy you, or let it strengthen you. I wish I could say that when all this happened to me I immediately chose option 3 and let this strengthen me but that wasn’t the case. I laid in a hospital bed paralyzed from the waist down unable to move my legs, my feet, and my toes. I looked at Teresa (whom I knew was so incredibly worried but yet she remained so strong for me) and with tears rolling down my face I said if I can’t move my legs and walk I don’t want to live anymore. I was the All-State basketball player, the athlete, the coach. My life revolved around being able to run and jump and be active. What was there to live for if all I knew how to do was no longer possible. That night as Teresa snored so very loudly on the couch in my hospital room because that’s what she does, I laid in that bed feeling sorry for myself, crying, asking God why. It was in that moment that I realized even though right now I was blaming God for this awful situation that he had put me in that it was the first time in a long time that I had a conversation with Him.
I couldn’t speak during that time but I distinctly remember the look on Teresa’s face, the tears in her eyes, and the desperation in her voice. It was right then that I truly knew no matter what she was there for me. She was my strength then and has remained my strength through this whole process.
2 Corinthians 12:9-10 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
I believe that is saying God does not delight in our suffering, but he allows suffering in order to refine our faith, to develop Christ’s character in us, and to bring glory to himself.
In that hospital bed that night I had a one on one with God. I discovered that, although my illness had robbed me of many aspects of my life, it couldn’t take from me my greatest freedom – to choose God in the midst of my suffering, to seek his glory despite my pain.
I could choose to become bitter about my illness, or I could use it as a catalyst for growth. I could choose to focus on what I could no longer do, or I could choose to look for opportunities to use the abilities I do still have to honor God. I could choose to believe that the most significant times in my life were in the past, or I could choose to believe Gods word – that he delights in using the weak to confound the wise and that his power is made perfect in our weakness.
Until right now I am sure Teresa never knew why I had such a change of heart, why I made her get up and get the tablet and start filming, why I told her I wouldn’t go to sleep until I moved my legs.
Psalm 27:1 – states The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid?
For the first time in my life I had a real encounter with God and felt his strength with me. I was not afraid anymore. While I couldn’t beat this alone with the Lord by my side I had the strength to fight this. With the Lord as the strength of my life I didn’t need to be afraid.
Over the next few days I began to improve a little, I was pushing myself to learn how to use my legs and walk on my own again. I started out taking a few steps in my room with Teresa’s help. She would then get up at the crack of dawn and walk with me in the hallway holding me up on one side as I held onto the wall on the other side. It didn’t look too pretty but I was walking. I eventually worked my way up to a walker when I got out of the hospital after a long 2 weeks.
Proverbs 3:5-6 states 5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight.
From that point forward with this illness I have chosen to trust in the Lord. I quit asking why?? I believed that having this illness was my purpose and brung me an opportunity to bring myself and other people closer to Jesus. Don’t get me wrong I still have horrible days that make me want to question his motives but I now understand that this has been such a blessing on my life. While I don’t fully understand it, it has greatly enriched my spiritual life and I am thankful for that. Jesus was honest. He told us the truth. He said in John 16:33 “You will have suffering in this world”
But why, if you ask me point blank the only answer I can honestly give is four words – I do not know. I cannot stand in the shoes of God and give a complete answer to that question. I don’t have God’s mind. I don’t see with God’s eyes. First Corinthians 13:12 says, “Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.”
So when you ask about specific individual events and want to know why this particular thing happened, we won’t get the full answer in this world. Someday we’ll see with clarity, but for now things are foggy. We can’t understand everything from our limited perspective. And frankly, I don’t need a big theological treatise right now; any intellectual response is going to seem trite and inadequate. What I desperately need now is the very real and comforting presence of Jesus Christ in my life. And I’m so grateful for this church community for helping me experience that.
My life has been full of a lot of ups and downs the last 3 years. I take a lot of medications that cause me other problems and leave me sick for days at a time. I think I have only went one full month without spending at least a few days in the hospital over the last 2 years. I have to strategically manage every single day. The difference in being sick with this disease and being healthy is having to make choices or continuously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions. I have to plan for the entire week at a time. If I sweep and mop the garage today chances are I might not be able to walk tomorrow. Some days are worse than others; some days I have more strength and energy than most. But I can never make it go away and I can’t forget about it, I always have to think about it. It’s hard, the hardest thing I have ever had to learn is to slow down, and not try and do everything. I fight this to this day, I hate feeling left out, having to choose to stay home, or not get things done I wanted to. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick with this disease and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. Don’t worry; I see this as a blessing. I have been forced to think about everything I do. Do you know how much time people waste every day? I don’t have room for wasted time and I choose to spend this time with you. Hopefully this has helped you understand me a little more, but more importantly maybe help you think about how you live your own life a little differently.
Hopefully, you won’t take so much for granted or your life in general. I give a piece of myself, in every sense of the word when I do anything. It is extremely hard for me when I have to cancel plans with one of you, when I have to cancel youth, when someone else is hosting SNL and I so badly want to be here to support them. I have to miss so many things not because I want to but because I have no other choice. I volunteer in a lot of different areas of this church and enjoy every minute of it. From opening and closing the church on Sunday mornings, to nursery, H2O, and High School. I understand that without any notice I may end up in the hospital and have to miss one of those obligations. However, one of the things I hate most about this disease is that people treat me differently. Just because it may be a little harder for me to do or I may have to pay for it the next day doesn’t mean I don’t want to give whatever I can to help you. I wish that people weren’t afraid to still ask for my help. Yes I am sick and probably will be for the rest of my life but what helps me stay positive is still being able to give back whatever I can to all of you (the people I care about) that have been so gracious to me.
I speak tonight of one encounter that I have had with a truly living God but the fact of the matter is that the way all of you have treated me over the last 3 years makes me feel like I am having encounters with a living God on a daily basis. So many people have been so gracious, selfless, caring, and just plain good to me and my family. I could never thank you enough for all the friendship and support I have received from all of you. I have wonderful people in my life that has made this journey so much easier on me.
My wife Teresa, I mean what can I say. She is my hero. She battles this disease just like I do when she doesn’t have to. She takes the vows in sickness and in health to a whole new level. She is beautiful, caring, and compassionate. She has spent countless hours and nights in hospitals just to go home gets a shower and goes directly to work all the while never complaining for one second. She is my wife, my best friend, my care taker. She didn’t sign up for this 9 years ago but has never shied away from it. She is an amazing person and I could never put into words how thankful I am to her. God truly sent me an angel when he blessed me with her.
Genesis 50:20: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” And if you’re committed to God, He promises that He can and will take whatever pain you’re experiencing and draw something good from it.
This is why I believe Dermatomyositis has been a blessing. This disease has brought me to a closer relationship with God. It has allowed me to start conversations about the grace of god and power of prayer with total strangers in my everyday life. I speak today in hopes that you don’t have to suffer to find a relationship with God. I speak today in hopes that you will take my experience and seek that relationship before you are put in a situation where you no longer have a choice but to seek that relationship. As Mike stated this morning it’s time to quit sitting back and waiting for Jesus to find you, it’s time to be active in your search and to fight for your relationship.
Ephesians 2:8 says for it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God
Except the gift, it’s the most rewarding thing you will ever do.myositis myositis awareness