There is a small group of us in a much larger community who have walked this road “together” for many years now. We share the same diagnoses, similar timelines, the same neurosurgeon and other specialists and a deep abiding faith in the goodness of God. We believe He is for us in all this suffering. Even on our hardest days we know for sure He is making something beautiful. Mackenzie has been a shining light on my path. She is a glistening trophy of Grace in suffering.
I Hope You Dance
By Mackenzie Spencer
In a few weeks, I will celebrate 6 years from my first surgery, and it is a huge celebration! I had no idea how my life would change after that day. It was the first step in getting my life back. As I walked through my medical journey, my mom and I kept a blog to keep everyone updated. When we decided to start this blog, I did not know it would turn into a record of God’s promises and faithfulness. This has become not only a resource to others, but a reminder of the miracles God has done in my life. I want to share with you some of the blog post I wrote the night before my first surgery, but first I need to share some background information:
At the age of 16, I started having headaches, dizziness, fatigue, memory loss, and a number of neurological symptoms. At first these symptoms were a huge inconvenience for a junior in high school at the top of my class, but they quickly became terrifying when the reality hit that they were not going away. Doctor after doctor told me there was no answer and to stop looking. My symptoms had become tolerable so I went on with my life of dancing 15 hours a week and working towards graduating Valedictorian. Shortly after my senior year began, my symptoms significantly worsened. We added constant wide-spread pain, fainting, absence seizures, and severe arm pain and weakness to the list. Despite these changes, I danced every day.
Four days before my 18th birthday, dancing was no longer an option – I lost the ability to walk. Devastated, we knew that we had to start searching full time for answers. After several more doctors (including one who told my mom I was faking my pain and weakness for attention), we had no answers until we had a divine appointment with a local family who had been through a similar process to find their diagnoses. This family led me to their doctors who diagnosed me with the exact same conditions – Ehlers-Danlos Syndrome, Chiari Malformation, Cranio-Cervical Instability, and Tethered Cord Syndrome.
In a matter of months, I had gone from having no answers to having all of them and scheduling surgery to correct spinal abnormalities. Then the unthinkable happened. Only 12 hours before my surgery, it was canceled with no answers and no hopes of being rescheduled. Devastated does not begin to describe how I felt going home. Over the next several weeks, my health declined exponentially. I could not walk more than a few steps. I could barely eat anything. I could not sleep. I could not remember the order of the alphabet or how to spell my name. This was rock bottom.
My mom persevered and decided it was time to look at other options for surgery. She spoke with my geneticist who had just begun working with a neurosurgeon in the DC area. After reviewing my imaging and test results, he agreed to see me immediately for additional testing. Very reluctantly, I also agreed to see him. At this point, I had no faith in physicians. The only faith I had was in God’s plan for my suffering. I knew this had been a divine appointment once I met this new neurosurgeon. He was one of the very few physicians I saw who listened to everything I said and told me they would do everything they could to help me. After days of testing and conversations, he scheduled the surgery that had been canceled months before – tethered spinal cord release.
This brings me to my blog post the day before surgery. I remember writing this in my room at a very late hour, as I did many blog posts, in a Word document so my mom could proof read it before posting. I had been asked by so many friends and family how I was doing. This was understandable given my physical state and the fact that I had already gotten on a plane to have this surgery done by another physician. My answer was surprising to most – it was peace – all I felt was peace. It was intended to be a quick update to everyone who had been following my story, but as I started writing I realized God had more things for me to say! In reflecting on this post, I noticed how many prayers, written and unwritten, God answered starting with this surgery.
“A family friend came by the other day to pray with my family before we left, and he said something that really stood out to me! The surgeon will be holding the scalpel, but God will be guiding the hands of the surgeon, because He is the ultimate physician! I trust that God will take care of me and that His Will will be done, and not my will or anyone else’s!”
Before my first surgery (and all subsequent surgeries), Dr. Henderson prayed that God would guide his hands so that I could glorify Him. The same words our friend prayed over me was also spoken by the surgeon who God would use to heal my body. Without a doubt, this prayer was answered each time it was prayed.
“Yesterday a friend texted me and said that she was praying Psalm 103 for me. I wasn’t sure what it said, so I looked it up, and I am so glad that I did. It was a great encouragement. I want to share a part of it that really meant a lot to me. ‘Praise the LORD, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s.’“–Psalm 103:2-5
God used this surgery and a subsequent surgery to heal my body tremendously, but we learned over time that the underlying genetic condition would continue to cause degeneration in my spine. As I have watched my health decline and my life slipping away again, I have looked back to the life that God redeemed from the pit. His faithfulness is the only thing that kept me going. I knew that He was not done with me and I would once again be renewed.
In writing the next portion of the blog post, I did not dare write the prayer that I hid very deeply in my heart. While my soul longed for dance, my body told me it was impossible to walk, much less dance again. I knew God was more than capable of returning this to me, but I had completely given dance over to Him. I came to terms with the fact that if this was God’s purpose for my life, I did not have to walk.
“It was 8 months ago today that I lost the ability to dance. I am not going to lie, I was pretty angry about this and I let God know that! I knew God is bigger than my anger and He already knew what I was feeling! I had my life figured out, or so I thought!…I was going to teach dance and share this passion with others as it had been shared with me. I wanted to be able to impact someone’s life the way my amazing dance teacher, and now close friend, impacted mine. I will be forever grateful for the wonderful passion she shared with me. It was not only a passion for dance, but also for God!
It was and still is a daily struggle to wake up and know that I cannot dance. It may seem strange, but I mourn my loss of dance. It was a huge part of my life and my relationship with God. I spent the last 2 summers at school in the dance room. Most kids are so excited for summer so they can be away from school, but not me. I was excited for summer because it meant I could spend countless hours in the dance room. It was not only a place where I could work on my technique, creativity and choreography; it was the place where I felt closest to God! There is a quote by Glade Byron Addams that says, ‘It is of course possible to dance a prayer!’ That statement was definitely true in my life. Some days I would beat prayers into the dance floor for hours.
I miss those days a lot, but I am so thankful for the time that I was able to have that passion for dance. Some days, like today, it is very difficult to be without dance. But I will get through it because I know there is a reason for my struggles. This is my purpose in life. I thought it was to reach others through dance, and maybe I have. But I have another purpose for my life…It is to reach others through my suffering. I had big plans for my life, but God had bigger plans!”
I remember sitting on my bed sobbing as I wrote this, mourning the loss of dance. I was so at peace with God’s plan, yet I had a yearning in my heart and soul to be able to dance one more prayer. I had full faith that God could, but no expectation that He would grant me this desire.
Less than 2 weeks after this surgery, my legs felt different. I was resting in the hotel room I shared with my parents for weeks and slowly noticed it was easier to move my legs. I walked carefully into the bathroom, put my hands on the countertop, and said to God, “I can’t believe I am going to do this, but I trust you.” I slowly lifted my heels off the ground and stood on my toes the same way I did since I was a toddler. In complete disbelief, I took several long steps across the bathroom realizing I could walk normally again. I stepped out of the bathroom and said to my mom, “Don’t tell anyone what I am about to show you because I don’t know how long it is going to last.” I walked back and forth across the room and stood on my toes over and over again. We stared at each other in amazement and continued to test my “new” legs. My leg strength was back and permanently!
For my first surgery, I was wheeled up to the hospital in my hot pink wheelchair. Only 2 weeks later, I walked up a hill and through the hospital for another surgery – Chiari decompression and fusion of my skull to C3. My second surgery resolved my headaches, arm weakness, and neurological symptoms. Four weeks after my first surgery, we invited my dance teacher to our house, so I could show her my renewed strength and tell her I would be starting dance again the following month.
Less than a year after this post, I was able to dance in my senior dance recital and graduate Valedictorian from my high school. Even now reflecting on these events that happened 6 years ago and having told this story countless times, I am awestruck at God’s goodness and faithfulness. He answered prayers that I did not dare speak and granted me the desires of my heart.
I will leave you with the verses included in the end of the blog post. These scriptures carried us through this journey, and I pray that they encourage you wherever you find yourself today.
“Remember Your word to Your servant, for You have given me hope. My comfort in my suffering is this: Your promise preserves my life.”–Psalm 119:49-50
“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.”–Romans 5:1-5
“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”–Romans 8:18
“Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed.”–1 Peter 4:12-13
“Cast all your anxiety on Him because He cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings. And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power for ever and ever. Amen.”–1 Peter 5:7-11
Grace and Peace to you.
Based on this post: http://mackenziemathis.blogspot.com/2009/06/grace-and-peace-to-you.html
Mackenzie Mathis Spencer was diagnosed at the age of 18 with Ehlers-Danlos Syndrome, Chiari Malformation, Cranio-Cervical Instability, and Tethered Cord Syndrome, after searching for a diagnosis for 2 years. After years experiencing the health care industry from the patient side, she decided to devote her career to improving health care and patient experience. Mackenzie is currently working as a health care consultant in the Washington DC area, where she lives with her husband, Nick.
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