Christmas, with it’s promise of shiny trinkets and warm decorations, was once my favorite time of the year. Each season I added a new tree to the line up, totaling ten trees by 2012. Each tree has its own personality and memories.
There’s the towering pencil tree with snow covered branches, wrapped in white lights and green and gold ribbon and layered in dozens and dozens of green and brown bulbs.
There’s the tall, thin tree in my daughters’ room, which looks like a prop for the set of Who-ville or CandyLand, with massive lollipops and bright pink, teal, and green accents. Gumdrop garland and cupcake bulbs make this colorful tree a delicious sight.
There’s the Grinch trees, and one is so special to us because it was decorated in primitive decor, from faux popcorn garland to adorable woodland animal ornaments, wrapped tightly in trash bags, and sent home with my husband. This happened the first Christmas I was sick, and there are no words for the tears, the overwhelming sense of community, and the love that washed over my frail body when my husband brought it in, stood it up, and unwrapped this magical gift. More than just a quirky tree, it was truly a gift symbolizing the Christmas spirit.
Last year, we wrapped a few of my trees with Saran wrap and carried them, fully intact, to the upstairs of our storage building. My husband brought them inside this year. I cut the wrap, pulled it off, and ta-da! those trees were done. I wish I’d done this with every tree.
I yearn for the coziness and warm spirit the house exudes when all of the Christmas decorations are up, but I just haven’t had the energy to make it happen yet. The boxes are in the dining room, ready to be emptied. The Grinch tree is up, ready to be shaped, yet the entire house is pretty much devoid of the traditional holiday fuss.
I haven’t even released Eli, our Elf on the Shelf. Who has the energy for that hassle every single night? First, come up with a way for the elf to make mischief. Then, stay up late enough to do it without getting caught. And finally, after the ten minutes of laughter, clean up the mess ….only to do all this again, night after night, until Santa finally takes the pesky gal away.
Oh, and remember that adorable advent calendar we love doing every year? The kids usually get more pleasure from its activities than their presents Christmas morning, so why haven’t I made the time to dig out that beautiful manager scene box with its 25 drawers? Why aren’t we counting down the most important birth in history?
I can’t blame my chronic Lyme disease, directly anyway. I’m doing pretty well. Yes, that looks very different than wellness on a healthy person, but I can get through most days without handfuls of medication. I’m able to function basically on an alternating day schedule with full days of rest and sleep in between. I’m not in the hospital. My chest port isn’t even accessed. For now, my Lyme is in remission. Sort of.
It’s the mental side of Lyme that has me in a funk. I’m stuck in comparisons. This time three years ago compared to now. For the life of me, I still cannot wrap my mind around it. Just last week, I received an invitation to join the WV Retired Teachers Association, and that piece of junk mail has thrown me into a tailspin.
I am a retired teacher at just 39. My brain cannot process this.
A letter this week notified me that I have automatically been enrolled in Medicare based on my permanent disability.
These are all true words, true statements, but no matter how hard I try, I can’t grasp that these ugly terms describe me. I am teacher. I’m practically a newly wed. I have five children and a grand baby. I am supposed to have so much life ahead of me, but instead words like “permanent, disability, retired, medicare, pain, no cure” make the life ahead feel achingly long.
Forty more years of this daily pain and confusion. God, I hope not.
A couple days ago, I, as a good wife should, accompanied my husband to his staff Christmas dinner, knowing from experience that the evening would be a challenge. Remember, just three years ago, I was part of this staff, too. Most of the time, I avoided eye contact because I feared tears spilling over, drowning everyone’s merriment. I listened to side conversations about ornery students, funny anecdotes, and the looming grading deadline. About a third of the faces I didn’t even recognize; the retirement turnover has been so drastic. And as horrible as this truth will sound, as I discreetly looked at the faces I did know, I simultaneously loved and hated them.
I miss them terribly. I’ve cried at the loss of their closeness, yet, in that moment, I hoped I would never have to see them again. Their ability to do what I can never do again pierces my heart, and I am wrecked with cold, hard envy. A few who have stayed in touch know how difficult the evening is for me and try to maintain safe conversation topics. Others complain about paperwork or politics or parents, and I beg God to keep my mouth shut, to keep me from screaming, “You are so lucky to have these problems! Please take mine!”
People say that I have handled my disease and the changes it brought “so gracefully.”
I have not.
There are moments of sheer bitterness, moments of screaming, crying and questioning, moments when I want so badly to give up. My husband and my children come the closest to seeing the reality of my sickness. It is not pretty. There is very little grace. There is much anguish and jealousy, and the deep need to understand why me and why this pervades even my best days.
And, damn, I wish I’d witnessed some foreshadowing of how drastically my life would change. I wish I’d known I was peaking when it was happening. Was it the day my youngest was born? Was it my wedding day, as that tick embedded itself in the back of my arm, infecting me with this disease? Was that the best day of my life? At the moment, it sure felt perfect and meant to be. Now I wonder if this disease is a punishment, God’s way of reminding me daily that the path I took to get here was not the Godly one.
Is that how God operates? Does he punish us for our sins in creatively callous ways? If so, how long can one punishment last? I look around at the immense heartache –thousands of children slaughtered in Aleppo, 36 dying in a warehouse inferno, a little girl gone because of a zip-line accident, a newborn baby with the same birth and death date. Surely, these deaths are not designed as others’ punishments. When my childhood friend was killed by an intoxicated driver, nothing could have convinced me that her two sweet little girls did anything to deserve living a life without their mother. Her death was not a punishment from God, though somedays it sure feels like He turned away from us for a second and, in that second, she was gone.
Then, this week, the kindest, purest woman I know learned that she has spots on her colon, liver and lung. This beautiful woman is the strongest prayer warrior I know. She was a rock of faith for my children when I was first sick, and I have been undone by her news. Doubting. Questioning. Angry. Confused. Most of all, heart broken.
I don’t understand the ugliness in my world. I want God to take care of it, to shelter us from the evil around and within us. Instead, we are attacked by our own traitorous bodies, and I am left with a wounded soul.
A soul that asks why, while knowing the answer will not come while I live.
A soul that begs for children to be protected and for moms to live.
A soul that wants so badly to be in the Christmas spirit, to celebrate the birth of our Savior, who will take all of this pain, both physical and mental, from me someday… yet I can’t seem to move beyond the whisperings of my mind.
There is so much beauty in my life, even if it isn’t the life I’d planned. My children, my grand baby, my husband, my volunteer time at my daughters’ school, my charming home full of projects, bookcases of wonderful books, my goofy puppy…
My soul longs for happiness and gratitude for all these blessing, but my mind relentlessly whispers contemptuous words….retired, disabled, Lyme, permanent, pain, punishment, cancer…and joy feels impossibly out of reach right now.
How can I feel joy when thousands of innocent refugees are stranded in Aleppo, dying as I type? How can I even think of joy when my dear friend struggles to find the right words to tell her children how sick she really is and about the battle they are about to face? Decorating a Christmas tree seems so trivial, and I just can’t bring myself to open a single one of those damn boxes of decorations.
Pain and joy are universal. They spread to those we love, and sometimes, to those on the other side of the world, who we don’t even know. These days, I am drowning in the pain of the world. I come up quickly for just enough air to keep going, but the heaviness of my heart makes each gasp for another breath shorter and harder to take.
I find myself asking over and over, “How is this our world? How is this okay? Where are you, God?”
And all the things I am supposed to be doing….decorating, shopping, the advent calendar, that creepy, pain in the ass Elf on the Shelf….seem silly. Actually, more than silly, they seem shameful.
Children are dying. People are sick. And I ache.
Christmas doesn’t create a “ceasefire” to any of these horrors and heartaches.
Today, as I compare my life now to the life I had just three years ago, I am bitter. I miss my colleagues, who were back then also my friends. I miss my students, on whose futures and choices I know I made an impact. I miss being able to clean my house in one day and put up all the Christmas decorations the next. I miss having all of my children under one roof, and knowing all of them thought I was the greatest person on earth. I miss feeling confident, pretty, and intelligent. I miss feeling needed and productive.
Today, I have no colleagues because I am permanently disabled and, therefore, unable to have a full-time job. I have few friends because friendships require time and effort, and I am forgetful, depressed, and have nothing exciting to add to conversation. I have no students; my impact is limited to the children in my own home. I will never have my entire house clean because I do not have the energy for such a task, and if the Christmas decorations go up, bit by bit, they likely will not come down until spring break. I will never again have all my children under one roof as they are growing up and raising their own families, and since they have seen me in tears of despair, screams of agony, and sobs of loneliness, they know I am far too weak to be the greatest person on this earth. Every single day, I battle feelings of complete inadequacy, Lyme brain fog forgetfulness, and the day to day markers of a body in constant turmoil. My illness has rendered me unreliable, and I no longer feel pretty or needed in this world. I avoid mirrors at all costs.
I am simply taking up space until God calls me home and answers a whole bunch of questions I have for Him. In the meantime, I will be the warm body my children and husband need me to be. I will put on a happy face, appear to walk with grace, and fulfill whatever duties I am physically able, like decorating this darn house for Christmas.
Somehow, I’ll get it done.
And with every ornament I place, every ribbon I tie, every twinkle light I turn on, I will pray. Pray for Aleppo. Pray for the sick and the hurting. Pray for my dear friend. Pray for motherless children and childless mothers.
This is the only way I can justify tasting a little joy in such an ugly world this Christmas season.