This is a big week.
Last week I had a check up with my neurologist, Dr. Meador. I was happy to report to him that I have improved in some ways! I am no longer needing a cane for assistance (I mostly used one because of the dizziness I struggle with), my energy level is improved, the dizziness has scaled back some, and I’ve even had a few days when I felt well enough to drive. However, I do have some new issues with swallowing, vision changes, taste changes, and something happened at the doctor’s office when I had to have a nebulizer treatment for bronchitis a couple of weeks ago where my hands drew up, I couldn’t feel them or move my right one for several minutes. Dr. Meador was concerned that this may signal a worsening of the deterioration of my spinal cord and some brain stem involvement.
That brings us to this week. Tuesday I see the ophthalmologist and then Wednesday is the long awaited Genetics appointment. This is the appointment where they will tell us whether or not they think I have a form of leukodystrophy. Leukodystrophy is a chromosomal abnormality where the body is deficient in an enzyme that helps produce white matter, which includes the myelin sheath that covers the spinal cord and the white matter in the brain. People with leukodystrophy have progressive deterioration of that white matter.
So, here I sit, on Monday morning, praying about this week. And to be honest, I’m fighting some anxiety. Because once you know something, you can’t un-know it. Until now, and for over six months, we’ve not had any answers or even any abnormal labs. My MRI is definitely abnormal, but even with that, ignorance has become acceptable. It’s funny how you think you want answers but then when those answers are hard you don’t really want them. It’s like you want to scream, “I take it back! I don’t really want to know!” My mind is drifting to friends who have had hard days like these, and for some, even harder. Cancer diagnoses, children taken from their arms too soon, family members who are self-destructing and they are helpless to help them… How does anyone get through this life without hope of a better life waiting for us when all things will be made new?
Isaiah 25 speaks so clearly and earnestly to me today, urging me to look Heavenward.
“And He will swallow up on this mountain the covering that is cast over all people, the veil that is spread over all nations. He will swallow up death forever; and the Lord God will wipe away tears from all faces; and the reproach of His people He will take away from all the earth, for the Lord has spoken. It will be said on that day, ‘Behold, this is our God’ we have waited for Him, that He might save us. This is the Lord; we have waited for him; let us be glad and rejoice in His salvation.'” Isaiah 25:7-9, ESV
Everyone has hard days. No one escapes from that reality. But I can choose how I respond to the reality before me. So, today, I choose joy. I choose trust. I choose to let go of things that only God can control, and to fix my eyes on Jesus. It’s a struggle to not give into fear, and there’s no doubt that I’ll have major butterflies in my stomach on Wednesday, but my desire is that I will seek Him first. That I will have in my spirit on that day, and on all the other hard days that will come, His truth and promises that this world is just temporary. He HAS defeated death, sickness, and sorrow and He HAS healed me, whether that healing is revealed here or in heaven. HE gets the last word, Him and no one else. He goes before me and I AM NOT ALONE. He is with me and He is for me and how can I not trust He who gave His very life for me? Because of these truths, and so many more, I can have peace in the midst of the storm.
“You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever; for the Lord God is an everlasting rock.” Isaiah 26:3,4, ESV