The bow tie defies him, refusing symmetry.
A skill handed down from a more traditional generation, my husband John prides himself on his ability to properly interlace the classic bow tie. He scoffs, “My grandpa could’ve done this in just a couple minutes….with his eyes closed.”
He moves to a different bathroom, maybe thinking that a bigger mirror will solve the problem. Or maybe the lighting isn’t as good in the downstairs bathroom.
But the tie continues to exasperate him. The mirror isn’t the issue. Neither is the lighting or the material.
John is bothered. He won’t say it aloud, but I can tell by his unusual struggle that this is about more than just the stupid tie.
I lean against the claw foot tub in yoga pants and a tank top, my nowadays normal attire, with my hair unbrushed and my face bare. Whereas I appear unkept and comfy, he is perfectly groomed, his crisp white dress shirt contrasting his dark dress pants. In the mirror, I’m struck by how out of place I look beside him.
For the first time in our marriage, my husband, a school administrator, will be attending a formal school event without me. I am too tired to go. Just the idea of getting dressed up is exhausting. Plus, there is no way my already sore feet can handle the torture of high heels.
In the reflection of the mirror, his blue eyes meet mine, and I see his anguish. Without accusation, he says simply, “I hate that you’re sick.”
So much in so few words.
He misses me. We fall asleep and wake up together every day, yet in this little bathroom, our bodies no more than two feet apart, he still misses me.
The last six months have been a whirlwind of doctor appointments, different treatments, diagnosis and prognosis. He has taken care of us, physically and emotionally. Picking me up in all ways. Early on, before I was prescribed heart medication for Postural Orthostatic Tachycardia Syndrome, it was a daily occurrence for John to scoop me up off the floor after I’d passed out.
It became so normal, in fact, that one time when I collapsed, landing with my head mere inches from my four-year-old’s dollhouse, Izzi calmly covered me with little blanket and returned to playing with her dolls. There was no reason for alarm; after all, Mommy fell asleep on the floor all the time. In the beginning, it was up to John to literally pick me up, and later, as those symptoms were replaced with neurological ones, it was John who had to lift me out of my frustration and depression.
Being sick, any kind of chronic sick, makes you question your self-worth. Disheartened by your physical inabilities, you wonder what value you have. What do you have to offer your family when you feel like an incredible burden to them? On top of this, I suffered from brain fog –the inability to remember words or to maintain a conversation.
Once, after a massage therapy appointment, I forgot how to get home. A drive I had made countless times was completely gone from my mind. I could picture our home, but I had zero memory of how to get to it. Imagine if your spouse frantically called you at work to ask for directions to your home.
John was patient, so incredibly patient, and he has never failed to pick me up emotionally, trying his best to understand my symptoms. Letting me cry when I need to, but not letting me wallow. Forgiving my bitterness, those times when the blessings in my life are overshadowed by the anger that this happened to me.
In this moment, the real issue is that for the first time in fifteen years, I am not going to prom.
Sounds crazy, I know. But as a teacher, I have chaperoned our school prom every year since I began teaching. Even eight months pregnant with Gracie, I managed to show up in a gown and heels.
This commitment may seem like a sacrifice, but the truth is it’s a selfish gesture. I relish seeing our high school students all dressed up. They spend hours preening for this. The dress, the shoes, the make-up, the nails, the hair. To them, prom is A Big Deal. For seniors, it’s the last hurray, and I greedily want to be part of it.
But this year, I just can’t do it.
I had entertained the thought, even picked out an old gown just in case. But my body is not cooperating.
As I watch John continue to tussle with the bow tie, I realize that my husband is grieving for this loss. Mine and his. Yet another stolen event in our life.
I walk down the hallway and select a regular tie, simple yet appropriate. Not as formal or attention-grabbing as a bow tie, but functional nonetheless. He’s battled long enough. I offer him the replacement, and he doesn’t even argue. He casts the bow tie on the counter. His eyes project defeat.
“I wish you weren’t sick.”
This time I respond. I don’t want him to be sad. I don’t want him to look like he’s lost his best friend. I’m still here, just different.
“John, stop telling me how sorry you are that I’m sick. I know it’s awful. I know that I’m sick. I don’t need reminded of it.”
He blinks and his eyebrows furrow. Crap. I’ve caused even more pain.
I stand, touching his shoulder, and he finally stops fiddling with the tie. We face each other, instead of the mirror. Our eyes connect.
“Don’t be sad because I’m sick. Be happy because I’m better.”
The corner of his mouth turns upward. His arms envelope me, and I can feel the tension begin to melt.
Too often we compare ourselves to others. Our finances. Our homes. Our cars. Our children. And, yes, even our health. Much of our discontent in life is rooted in this habit. We want what others seem to have, and they want what still others have. In reality though, most of these comparisons are illusions. That person with what we think is the perfect home may very well not be able to sleep at night because of financial worries. The mom who always seems to have it all together is simply refraining from posting her failures and frustrations on Facebook. The guy with the great career, making great money, may dread going to work everyday because he hates his job.
We measure our worth by others’ deceptions.
I’d rather compare myself to someone whose life I really know. Me.
Early on in my illness, I read a book that recommended keeping a journal. Not just a diary, but a tracker of symptoms and diet. I couldn’t write everyday; I was just too sick sometimes. But I tried to be faithful to it when I was able.
Now, what a motivation that little journal is. When I’m having a “bad day,” I look back on an entry from December or January. The gut-wrenching pain, the constant fear, the unknown prognosis. Without the words, those memories would become vague and dim, like the pain of childbirth does after a while. We know it was bad, but our mind shields us from that vivid reality, letting us reside in the wonderment of the good.
So I compare my wellness to where I was a few months ago. I know I am sick; I don’t need reminded of that. But I do need reminded that I’ve come a long way. I crave reassurance that I am getting better, that I am winning this battle. I need to read the words illustrating my journey. I need my husband to continue picking me up, even when we both know this is not what we’d pictured.
Sure, I think about life before Lyme disease. The “normal” that I didn’t realize was normal until it wasn’t. Going to work everyday, teaching my students how to compose a thesis statement. Sitting in the bleachers on Friday night, holding my breath as my son kicks a field goal. I want to be able to do normal things again. Yoga, jogging, shopping, cooking. Heck, at this point, I’d be over the moon just to be able to clean my house again.
I guess sometimes I miss me, too.
But I refuse to let Lyme take “us.”
John quickly finishes up his primping, having no difficulty with the tie this time around. We snap a few photos of my oldest son and his girlfriend –the kind of snapshots moms all over the county are insisting on before they kiss their kids and begin the countdown of worry until they return home safely. Prom is A Big Deal for moms, too.
The sun is setting as my daughters and I stand on the porch, watching the vehicles head down our driveway. Truthfully, there’s some dysphoria, an silent ache for the nostalgia, but I smile and wave, not wanting their happiness to be tainted by guilt.
Fifteen years was a pretty good run.
My girls take my hands and we walk back inside the house.
Mommy, can we try on your dresses?
Pleeeassse?? It’ll be so much fun!
I relent. I give them complete access to my stash of dozens of prom gowns. Courtesy of numerous safety pins, my adorable daughters put on the most spectacular fashion show in history. A short purple strapless, a red chiffon with rhinestone accents, a yellow asymmetric cut. Their little bodies masquerade in dresses, lipstick and high heels. Izzi swims in a blue-black gown that I’d worn when I was six months pregnant with her. Gracie poses in a lace-up pink gown sparkling with sequins, her hair tucked in an elegant french twist. She gazes into the mirror, smiling, oozing confidence and joy in the her reflection.
Suddenly my throat catches as I realize I’m glimpsing into the future.
A future I wasn’t sure of just a few months ago.
A future I thank God I might get to be in.
While my dapper husband chaperones yet another dance, while my handsome son escorts the most beautiful girl to his senior prom, while moms everywhere pray for their children’s safety, I savor the best prom night of my life, at home, watching my daughters twirl.
Your words always soften a heart that has a habit of becoming jaded and brings tears to otherwise dry eyes.
❤ speechless here- but please keep writing!
Your written words make my heart. Your written words make me smile. Your written words make feel!
Jena it amazes me how you take a simple thought or task and make it help us understand how devasting Lyme’s Disease can be! Keep up the writing!