My Diagnosis Of MS

“The orange rolled under the carburetor with a fork inside of it,” is what the doctor may as well have said on the day she pointed out the lesions in my brain from my MRI. I’m sure I remember very little of what she told me. Other days, I’m sure I remember every single word of that painful conversation. As a nursing major, I absolutely love science. I’m consumed by it daily and I’m fascinated. I love understanding how the heart pumps blood to the body, how our muscles contract to move us forward, how the brain sends thousands upon thousands of messages daily to keep us alive, etc. Its enthralling to me. After all, I’m the girl that identifies the blood pressure cuff by its proper name, the sphygmomanometer. ;) However, on the day of my diagnosis nothing seemed certain or understandable to me. 

Last month, I was diagnosed with a demyelinating disease called Multiple Sclerosis (MS). The process of confirming the diagnosis and my type of MS is only at the beginning stages. I want to explain briefly what Multiple Sclerosis does in the human body. Our bodies have nerves that send messages from the brain to the body and from the body to the brain. They have been given a protective outer covering called the myelin sheath. For reasons unknown, my body identifies the myelin in my brain as a foreign invader. Because of this error, it attacks the myelin. This attack causes inflammation and damage throughout the brain, disrupting the communication system. This happened first to the myelin surrounding my optic nerve. I woke up barely able to see out of my right eye. My first course of treatment reduced the inflammation and my vision is almost 100% in my right eye once again. A few days later my legs started stiffening on their own and sharp pain radiated all throughout my spine. Symptoms vary greatly from person to person and there is no cure for this disease right now. 

I have been overwhelmed to tears by the kindness of everyone in my life. I feel frustrated at my inability to put my thankfulness into words that would match the magnitude to which I feel thankful. “Thank you,” seems so small. It is beautiful how a community of family and friends comes together as one team when someone is hurting. Conversely, I’ve noticed how uncomfortable people are with emotions. I’m consistently asked how I am doing. I’m delighted to be on their mind but nervous that I will disappoint them. Their eyes are beaming eagerly in anticipation that I will say, “Fantastic!” They seem deflated when I say, “not great” or “its hard,” etc. They want me to be doing better, feeling great, cartwheeling around Columbia, etc. There are many days when I do feel that way! There are also the bad days. Both types of days are equally necessary and valuable. It is hard for us to remember that bad days are vital. It is hard for us to accept the rough seasons. When I’m honest and say that I’m having a bad day, people typically grow longwinded in their attempt to convince me to feel another emotion. I grew tired of this, honestly. Sometimes, to make things easier for myself and for others, I say that things are great when they aren’t. When I respond deceptively in this way, I’m praised and rewarded for being strong and loving the Lord. Which answer was stronger? Can I not be equally strong and equally in love with the Lord during any emotion? Can I not be honest with the Lord and call out to him in my distress and remain close as his daughter? Through this trial, I’ve learned what it means to be strong in my weakness. (2 Corinthians 12) When I admit to God and others how I am truly feeling, I feel the most strength. When I acknowledge my weakness, doubt, frustrating, pain, etc. to the Lord, he listens, encourages, strengthens, etc. I think it was one of those “Jenga!” kind of moments for me. I can finally understand what it means to have strength in weakness. There is a beautiful genuineness when you can be honest about how you’re feeling. I think this applies to our community as well. What if when we were honest with each another about our bad days, our community could come together to strengthen that person? We don’t have to make them feel happy instead. We don’t have to explain reasons why they no longer have to be sad. We could just come together. 

I think the real root of this issue is a lack of appreciation for the season of grief. Who hasn’t struggled to appreciate the bad days a time or two? There will be a time when God will use this disease to help me be a better nurse to my patients. There will be a time when the shock of this news doesn’t seem so fresh. I cannot wait for that time to arrive! My mind is confident that God is good and that these times will arrive. Ecclesiastes 3 tells us there is a time for everything including weeping, mourning, and searching. Right now is my time to seek answers, cry, and let myself process and verbalize my real emotions. It is healthy, necessary, and needed for me to have this time. Ecclesiastes 3 goes on to say, “He has made everything beautiful in its time.” God is using this time in my life. Eventually it will be my time to dance. It will be the most glorious and uncoordinated dance of my life! Eventually it will be my time to laugh. It will be the most uninhibited laugh you’ve ever heard! Can you imagine how anticlimactic and measly my dancing and laughing would be had I never experienced a bad day? 

Throughout my summers growing up on a cul-de-sac, I got to hear the beautiful music composed by our local ice cream truck. Upon hearing this musical masterpiece, the neighborhood kids and I would quickly gather our parent’s money and run towards the sound. Sometimes we couldn’t run or collect money fast enough and the ice cream truck was gone. Sometimes the driver would see a dozen of us running towards him and we would get the world’s best ice cream and snow cones! Our brains would freeze, our tongues would change color, and our hearts would revel at the win of the day. We would strut around the neighborhood with such confidence for hours. Why? Because we knew what it was like to miss the ice cream truck. We knew what it was like to be completely set on a win and be devastated by a loss. Our celebrations were massive because our time of joy was seen through the lens of our times of trials past. How much more valuable are our times of dancing and laughing when we think back on all of the things God has brought us through and delivered us from. I experience a dozen emotions a day. Sometimes positive and sometimes negative. I’m thankful for every single emotion because I know what it’s like to miss the ice cream truck. So, I want to be honest in my emotions, good or bad. I want to be transparent about the struggle and/or win of the day. I want to be the wife that can dance at the achievements of her husband. I want to be the friend that can listen patiently to the heartbreaks of her besties. I want to be the nurse that cries with her patients on diagnosis day and runs laps around the halls on recovery days. In order for me to be this person, I must appreciate and experience all of the ‘times’ that God gives us. We can no longer inhibit each other from what God is enabling us to feel. God is using each season in our lives. A day is coming soon when our brains will freeze, our tongues will change color, and our hearts will revel at the win of the day. 

The Pain of Prayer

A pang of grief and weakness swell over my puffy red eyes. My dry hands fold in with tiredness from being held open towards God. My throat, radiating the desire of thirst, begs to rest. My voice is unintelligible to human ears; its tone laced with frustration, confusion, and exhaustion. For the first time since much time has passed, I've allowed myself to pray for my brother's healing. To be in a stage of waiting and wondering can be a ripe moment of torture and of bliss. I find myself relating to David as he calls out in Psalm 69:1-3,

"Save me, O God! For the waters have come up to my neck. I sink in deep mire, where there is no foothold; I have come into deep waters, and the flood sweeps over me. I am weary with my crying out; my throat is parched. My eyes grow dim with waiting for my God."

A couple of months ago, I had this experience of prayer in the living room of my house. My phone was silenced in another room, I was alone, and outside the rain poured softly. A youtube video was sent to me describing the healing of a young boy with a rare illness. My heart felt vulnerable and before I knew it I was calling out to God through waves of tears. At first, I praised God for the sweet moments my brother and I have shared in learning about the solar system and completing the summer reading challenge. With what felt like the same breath, I questioned God on his decision making. I doubted God...his existence, his love for me, his ability to provide, etc. I sang to God, in shameful relinquishment, reminding myself of the times I know he has unceasingly provided for me and loved me.

Honestly and shyly, I will tell you that I had stopped praying for my brother. Still, I was one of his biggest activists. Still, I sought to see him grow and played my role in that growth in whatever way I could. Still, my heart was warmed with love for him. Yet, that warmth ran cold when it came to discussing my hurts with God. People have both blindly promised Ryan's healing to me and discussed impolitely my need to consider that it may never happen at all. Both perspectives have been discouraging to me at times. I felt guilty if I wasn't confident of his healing and I felt guilty if I was too confident of it. Being uncomfortable at each extreme, I had drifted into the decision to stop praying for healing all together. There was never a definitive moment when I declared this change of heart. Rather, it was a slow and very subtle change in direction; this change went unnoticed until I was completely broken down in my house, alone, on a rainy November afternoon.

Have you ever seen an infant try to speak? Their concentrated eyes are compelling, their breathing is slowed and controlled, their eyebrows tighten, and their tiny minds race to discover how to turn thoughts to words. It is one of the greatest challenges they've experienced in their short lifetimes. It is a skill unmastered. The reward; however, is beautiful. With all the strength within them they speak out, "dada" or "mama." Or, "banker"...I'm convinced that was my brother's first word. Now, have you ever seen a parent reacting to their babies first words? They are completely undignified in their excitement. Thrilled and proud beyond measure of their baby girl or baby boy. Parents are elated with not only that first word but the promise of what that word means. The promise of deeper and deeper communication that lies ahead, the promise of growth in their sweet loved one, the promise of relationship.

I began to pray again that afternoon. As my mouth began to speak the thoughts I had held back for many years, my heart simultaneously rioted to keep these thoughts private. It was absolutely the most difficult conversation I have had with God. Like an infant learning to speak, I felt so concentrated and stunned by my new challenge. To start that conversation with God felt so painful; however, that's not how it ended. By the time I finished praying, my cheeks were red and my eyes stung but I felt undone and that was beautiful to me. I finally felt freed from the burden of hiding my pain from God. I like to imagine that God looked at me in that painful moment of a new beginning like a parent looks at their infant after speaking their first word. That conversation I had with God on a November afternoon, created treasured promises. A promise of deeper communication, growth, and relationship.

In Psalm 69, David cried out in anguish. He felt like he was drowning. He painfully shared his thoughts with God and he, too, became beautifully undone. He calls out, "The Lord hears the needy and does not despise his captive people. Let heaven and earth praise him.."