“I’m a forty-one-year-old disabled mother of three and pastor’s wife, currently undergoing chemotherapy for Lupus Vasculitis. I look in the mirror and wonder, ‘how did I get here so fast?’ The hours lying awake at night in pain; losing my ability to walk; the years of failed medications; doctors; hospital stays; ER visits; the specialists; the losses. My butterfly rash hides behind the tint of my moisturizer. The weariness in my eyes shadowed by the color on my lids. Clothes cover the weakness and burning in my arms and legs. Headbands strategically hold back hair that hasn’t been washed in a week.
Sometimes I feel as though I’m living in the Twilight Zone. Like I’m the only black and white character in a technicolor world. My body failing on the inside, and seemingly thriving on the outside. I guess that’s the crux of invisible illness. Would I rather look on the outside how I feel on the inside? Sometimes maybe I would.
At times, an uncertainty floats above my head like a rain cloud. Building up, kind of like the barometric pressure in the atmosphere. Will I be able to get out of bed? When will the pain stop? When will they fill my prescription? Will I be able to go to church tomorrow?
The day’s run into months, and into years, and I’m still invisible because I’m literally not there. Not present. Sometimes cognitively, but mostly physically. And in this season of life… that’s what hurts me the most. I long to be present. With my family and church body. I lay on my bed while my heart longs to sit in the pew or on a beach chair watching my kids play by the shore.
Will I ever walk again? Will this treatment work? I don’t know. There are a lot of unknowns. No answers to a great deal of questions. My soul can become parched and hard like the ground outside my window. Winters in the desert are quite harsh. Temperatures can drop below freezing. Our plants are subject to their environment unless measures are taken to protect them. Same can be said for my soul.
2 Corinthians 4:16-18 says, ‘Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For our momentary, light affliction is working out for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen; for the things which are seen are temporal, but the thing which are not seen are eternal.’
While I’m not always seen by others; every trial, ache and pain are known by my Savior. I do hope for compassion, consideration, and that others would see me in my suffering. But I know that, realistically, that’s not always possible. There’s a level of suffering that is only learned experientially. Suffering is unique to every person and sometimes my mental and physical anguish blind me to the goodness of others, the Lord, and the things that are praiseworthy in my life.
I remember the first time I went shopping at Costco as a wheelchair user. Boy, was that overwhelmingly difficult. Signage, and stacks of clothes were out of reach, people were inconsiderate and rude. It was then, that I realized that I was going to need to adapt to a world that isn’t always as open and accessible as I think it should be. At times I feel sad, offended and discouraged. There’s a temptation to grow angry and bitter at others who don’t know my personal challenges. But I wouldn’t want them to know them the way I do. I will always, at some level, be misunderstood. But Christ sees and knows.
It all seems too much to bear, at times. The weight feels unbearable, and I feel like I can’t carry one more thing, let alone my current load. But then I remember I’m not carrying the weight alone. Christ is here, with the lion’s share of the load. If I can trust God at His Word in Matthew 11:28-30, when Jesus says, ‘Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light., with salvation from sin, and walking in a manner worthy of the calling to which I have been called…’ Then I can trust that He will help me shoulder the load of chronic illness for as long as I am called to walk it in this life.”
“I do not often feel anything like a conqueror. I am a woman, full of womanly fears, and concerns, and hopes. But my Fortress is a mighty one, a Helper who prevails. ‘Amid the flood of mortal ills.’ I trust Him, not myself. I live in Him, not myself. In His name, not mine, I conquer.” ~Elisabeth Elliot
Marisa
