Updated: Feb 2
A few months ago, I came across the music video for the song Different by Micah Tyler, and while I had heard the song before, and had it saved to my Jesus Jams playlist, his commentary in the beginning of this video hit my heart differently and changed the way I heard the words of the song. Watch below:
Micah talks about struggles in his life: his grandmother’s battle with blood cancer, his home destroyed by Hurricane Harvey, his brother’s recent diagnosis with stage four colon cancer and after describing the pain in his heart, he says: "And in the midst of this, the prayer that I kept saying was: 'Jesus, can you just change these things, can you stop the storms.' But He's chosen not to stop these things just yet. And I'm finding out that sometimes the best question is not: 'Jesus can you change these things around me, but God can you change me so that I can handle the things that you're walking me through?' So, I keep on singing, and praying, and believing, because I know that He is changing me, and that, is making all the difference." -Micah Tyler
In a previous blog I had mentioned my older brother, Greg, and the terminal diagnosis he received when I was a sophomore in high school. If you are new to this blog or would like a refresher on the full story, feel free to pause here and visit www.gregschallenge.org.
When this first came into our lives, I was fifteen years old. I remember being home alone for about a week, watching my parents rotate between who came home from the hospital for a bite to eat or to hop in the shower. What I remember even more is that they didn’t tell me much of anything. So, I sat, watched, and observed. I could see the sadness in their eyes, feel the anxious energy of their spirits, a feeling of helplessness. I watched as the world began to collapse around my house, and then I watched as it entered our home when my dad walked through the door. He sat next to me on the couch for a few minutes until he was brave enough to tell me that Greg had been given 5 years to live. We both sat calmly and I attempted to comfort him the way God had me, until finally he started to cry. So, I sat, watched, and observed, and between breaths he said, “you’re not supposed to bury your children.”
In my ethics course last year, I came across a quote by a philosopher of the name, John K. Roth who accuses God of failure, arguing that God is nowhere to be found in our suffering. Roth writes, “if God is real, then God’s power fails, either because it is powerless to curb the excesses of human freedom, or because it lacks the will to intervene against those excesses and thus abandons the responsibility to protect, choosing instead indifference or complicity when crimes against humanity are committed. As a result, history is so marred by unutterable suffering that the failures of ethics seem to put God’s relationship to history beyond redemption.” In layman's terms, Roth references possibly the most profound question of humanity: Why does God allow bad things to happen in the world?
This month alone, I have attended two funerals where the idea of losing the ones we honored seemed unfair and unkind. That God didn't know best. When faced with pain and struggle, we often question God; we seek answers and comfort because we don’t understand how a God, who is supposed to love us and represent ultimate goodness, could allow such evil to triumph in the world. In times of great despair, we don’t always feel God. However, what I have come to learn through struggle is that when God sent Jesus to die on the cross, it awakened the ultimate act of selfless love through His own suffering. So really, you have to “be careful how you make sense of your life. What looks like a disaster may in fact be grace. What looks like the end may in fact be the beginning. What looks hopeless may be God’s instrument to give you real and lasting hope. God is committed to taking what seems so bad and turning it to something that is very good.”- Paul Tripp
Our house looked different that week. Dark, quiet, abandoned, sad. The yellow paint on the walls, once bright and cheerful, dull; and the rooms once full of laughter, now dim. It was like all of the light got sucked out of the house, even though I did my best to hold onto it for all of us. Our dinner conversations became a series on everything MLD: the ins and outs of Greg’s diagnosis, a new MLD family my mom had connected with on Facebook that day, upcoming appointments, a new doctor to give us more information… I was fifteen and I hated eating dinner with my family because all they talked about was MLD. So, I would sit, watch, and observe, just aching to get up. I would describe those first few years of his diagnosis the way Via talks about her family in the movie Wonder: “[Greg] is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.” I didn't blame them for the way they adjusted to our 'new norm' and it wasn’t that I felt that my life was any less important, that I wasn’t getting enough attention, or that I didn’t have a life outside of MLD- it was that I did have a life outside of it… and that they did too. The frustrating part, was that I was the only one with the ability to choose to live it, which made me the only one to acknowledge and interact with it.
Fast forward to a month or so ago, I had attended a Loyola Volleyball game and as I sat in my seat, I watched a disabled member of the swim and dive team roll out of his wheelchair and drag his body up the bleachers to the seat behind me. I sat, watched, and observed him struggle to fit into his surroundings as he used all his arm strength to pull up his lifeless legs behind him. The clonus that I have come to know and the determination in his face. I was so mad at his teammates for not sitting closer to the bottom. Not standing beside him as he fought the mountain. I was mad at them for not coming to his aid when his shoes fell off. I was mad at them for leaving him behind. And while perhaps he didn’t want their help or their attention, or he wanted to prove to himself that he could do it, I saw a glimpse of Greg in him. I see Greg struggle to get his legs into the car, having to grab the top of his pant legs to pull them in. I see him attempt to button his shirts until he finally asks for my help. I see him lag behind the rest of us as we walk to our destination, the clonus in his legs as he tries to tie his shoes or sits in one spot for too long. So, as I sat there, an overwhelming feeling of what was to come for Greg’s future hit my heart.
If you have any experience with survivor’s guilt you probably know the paradox I’m about to describe. You either: feel guilty for not feeling guilty, or you feel guilty for it not being you, either way you feel guilty. For six years, I have been the former—I feel guilty for not feeling guilty. I have never questioned the roll of the dice. Why is was him and not me. I have never felt ashamed to be given a future over him. I have never felt that I should wish to give it up so he could have it. And those statements make me feel guilty, like I should feel that way, that it makes me a bad person with a selfish heart to not wish to trade places. But that day in the gym, watching that boy, something happened, and I felt different. For the first time, I felt guilty that it wasn’t me. I felt guilty that I couldn’t take it away from Greg by holding some of the weight. Granted, I have wished it away and done my best to be honorable and grateful for the both of us, but it’s a very different dynamic to be the sibling of someone with a terminal disease than it is to be a parent. A parent is responsible for their child, whereas a sibling has no distinct obligation or accountability to the other rather than to be their brother or sister. I am not, nor have I ever been, my brother’s keeper.
At one of the funerals I attended this month, they referenced the story in the Bible where Jesus hears of his good friend Lazarus’ sickness and eventual death. He returns to Bethany where he is approached by Mary and Martha who were deeply grieving the loss of their brother. “When Jesus saw Mary weeping and saw the other people wailing with her, a deep anger welled up within him, and he was deeply troubled.” In John 11:21 Martha said to Jesus, “Lord, if only you had been here, my brother would not have died.” Sound familiar? It would be easy for us to say, 'Lord, if you were here, Greg would not be suffering. Greg would not be dying.' Martha’s comment and even the one I just wrote is a very appropriate statement, but it is also guided by our humanity and so, inevitably, a lack of understanding. Martha is upset with God because she feels like she has been deceived by his love, that He has abandoned her in a time of need, but in verse 11:35, John writes, “Jesus wept.” Just two small words, this is perhaps one of the most moving verses in the Bible for it illustrates that God is in fact with us in our suffering. He weeps with us and feels our pain to the extent that we feel it. When we lose a loved one, endure hardships and fight through disaster, when we go through anguish and feel heartbreak, often we don’t feel God. The thing to note however, is that God is not to be felt. He is to be known. And to trust him in grief, well, that is faith.
I see things differently within my own circumstances because I gave up my right to decide what is good and evil on my own terms, but instead chose to rely on my faith. You are either consumed by the circumstances in your life or you use the hurt and brokenness as a means to rise above it, using it for good. So many of my life decisions and the people I have met are because of a tragedy. I decided I would earn two degrees in college because Greg couldn’t get one, I decided on people, friendships, and relationships in my life whom I felt would be patient with Greg and loyal to my family, I decided on an internship that helped individuals with special needs because I witness someone in my own home who aches to fit in, I created a Make-A-Wish club at Loyola to give back to the organization that brought us so much joy in a time of great sorrow, I decided that the ultimate dream to move south after graduation is not in the cards just yet because I have a family to love here.
I know the privileges I have: legs that allow me to climb mountains, a brain that thinks and responds the way it should. I know the opportunities I have been given: to go to school, to apply for a job, to move out and live on my own, to get married, to have a family. Time to grow old and make memories. To use my time here to make an impact, to help others, to love others, to discover my purpose. I hold my future to a higher standard and guard it above all else because someone very close to me doesn’t get to have that. Everyday, I see the horror of his reality and I see the hope in mine. Your future and your dreams are not a God given right, they are fleeting and fragile- a gift that we should uphold as sacred, yet one that is often taken for granted. One we overlook.
I vividly remember driving in the car with my Grandma one afternoon where she asked me how I was doing with all of this. It was only a week or two after the big news had hit and I remember calmly telling her the truth, that I was doing okay. Being the optimist I am, I really did believe that, for some reason, God had chosen this for us, but that it didn’t mean the world had suddenly turned dark and cold. There is a reason and a plan for everything and trying to change or control things we have no control over will only lead you to miss out on the good in your life. You can’t allow yourself to get so focused on the struggles, that you miss the gift of today. You can have struggle, but you can struggle with joy. The words that I have always kept close to my heart are:
“You do not get to choose the events that come your way not the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith, and your smile, that is remarkable. Pain will change you more profoundly than success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you.” -David Crosby
I am different than the person I was six years ago. I am more patient, kind, and understanding. I have a deep desire to help other people and am more optimistic and faithful than I ever could’ve imagined. My soul has quite literally been shaped by the heartache that was placed there. The grace that has surrounded my life and brought me opportunities, and people, and love, wouldn’t be there if not for misfortune. Our house is different than it was six years ago. It is more bright and lively, always full of laughter, new hobbies, new friends, and old friends. It has become a place of refuge and peace for many. It has grown and healed as we have, and the comfort it gives to those who enter it, would not be there if not for that same misfortune. I understand that when struggles occur or loss is inevitable, it can feel like God is silent. You may have a hard time accepting the good or choosing to be happy in times of despair. You may feel that God is unjust or unfair. You may laugh in the face of those who grieve joyfully because all you feel is pain. You may hate them and you may even hate God. You may have lost your faith. It is true that God could say the word and stop the storm, but when He decides not to, I hope you can see that He is changing you.
I have never hated God nor have I been mad at him for allowing struggle because I see the light that has poured into the cracks, and I know that “just because God works incredible good out of unspeakable tragedies doesn’t mean he orchestrates the tragedies. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.” – William Young. While I didn’t know it at the time, during the week I spent alone waiting for someone to tell me the news, I firmly believe that in the midst of the silence and confusion, God had used the space to rush into my heart, deliver peace, and allow me to gain wisdom so that I could move forward with great strength and joy. I truly believe that in those days, He planted seed in me that has grown into deep roots. A deep faith. One that has helped to determine the path I get to call mine and one that values grace, mercy, and love above all else. And that, that has made all the difference.
At the very end of the video, Romans 12:2 “Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect” is displayed. This seems silly for me to repeat except that a few months ago, Greg picked out a journal for me for my birthday and the quote on the front was Romans 12:2. A sign that God has in fact used Greg’s situation for something greater. I don't want to gain this world and lose what matters. He is making, and continues to make, me, different.