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Oh, I Am So Sorry. Please Excuse My Oh So Messed Up Body
This article was published in my book, Beautiful Life with Cancer, Hope During the Hard Times in December 2014.
As I lay down in my bed, I am out. I almost always hit the pillow and it takes me about three minutes and I am asleep. Often times, parents of little babies and young children teach them bedtime by setting a routine. Baby gets a bath, read to them, sing one song, and hugs and kisses. Well, (you can call me weird but I already know that) but I believe I have done this with myself. Ofcourse I have the getting ready process. I will spare you that. It is not as simple and soothing as the baby’s routine. But I hit the pillow and I start running a list through my head. My two most popular lists: 1. What are the decoration changes that I want to make to my house? 2. What would I change about myself? Fifteen. No fourteen. There are fourteen things I would change.
1. I wish my hair was a little thicker. 2. No contacts. Perfect vision would be nice. 3. No scars around my neck. 4. No itchy back. That is right. No itchy back. See…I am the lucky one million billion that has a rare condition within a rare condition of MEN2A in which my body deposits protein on the top of my back. It drives me insane! It itches all the time. All the time! Almost daily, I scratch it until it bleeds. I have done this since I was a baby. I wish I did not have that. 5. Stronger arms. I work on it. I do. I go to the gym when I can and lift weights or as of now, or recently, I have been trying Yoga. But I’ve been a little weak lately so I don’t push it by going to the gym. So, I wish I wash’t sick. Wish I could go to the gym. And wish I had stronger arms. 6. No scars on my stomach. 7. No stretch marks. Nah. I look at those and wish they weren’t there and then I remember why I have them. Actually, call me crazy, I’ll keep those. Worth the memory. So, 7. Thinner legs. (Reinsert gym explanation here and add to it that I do not eat sugar. Ok. Yes, I do eat fruit. And yes, I know that carbs turn to sugar in my body. Restate that. I do not eat desserts. Why? There is one reason to eat desserts: They taste good. There are four reasons not to: sugar makes me gain weight, not good for my teeth, makes me, and everyone, sick more often by weakening my immune system, and lowers my energy. Yes, that was absolutely too much to say within parenthesis.) 8. Perfect teeth. I hope you think my teeth look perfect, but the front two have crowns from chipping them on the swimming pool. 9. No veins on my legs. 10. Better singing voice. (If I could insert a clip of me singing here, you would agree.) 11. No scar on the back of my leg. 13. No Addison’s Disease. 14. No cancer.
There is my list. Sure. Everybody has a list. But I do try to be really content with my body, but these are the things that I hate. I really do hate. And about 12 out of 14, at least, are here for life. Nothing I can do about it. About half of these nobody sees. And the other half, I try to hide most of the time. Prime example: You will not find me in any singing group or trying out for American Idol. But, I go to buy life insurance, and I can’t. I go to the doctor for allergies and I have to continue my medication list on the back because it won’t all fit in the lines provided, and then the doctor wants to send me for scans and tests and chat extra long because of my history, but excuse me doctor, I have a sinus infection. But they don’t want to give me anything for that. And then I go to pick up Prednisone at the pharmacy for the one hundredth time in a row and the pharmacist feels the need to tell me that I shouldn’t take so much because of the side effects. Thank you, I know them well. But the alternative isn’t so good. It’s death. And then I read an article in the newspaper in the medical section from a doctor that says no one can survive with both their adrenal glands removed. Well, he should do some research, or I should introduce myself because I am going on ten years now.
I try to find light in my rare condition. It is a little neat when the student intern at Duke is so excited over meeting me and reviewing my case that he can not hide his excited giddiness. It is kinda cool to be able to carry on a medical conversation, using all the right jargon, with friends that are doctors and surgeons, but If I got to pick, I would choose a different claim to fame. What can I really do with, “a really extremely rare form of MEN2A” and always being the exception even within the rules of the disease? Pretty cool to be the exception in the medical handbook or the specialists’ conference? Ehh.
Well, I am asleep by now and I never go through the explanations with myself while I am laying in bed. But if I didn’t have that, I’d be pretty pleased with myself. If I didn’t have all of that, it’d be great to sit up in the morning and be able to see what’s going on without popping in those contacts. And I’d probably join some band, just for the fun of it. And I’d sing to more people than just my seven year old. And my husband. And my sisters. And anyone else I get comfortable with. And anyone else who is around after I’ve had a drink or two. And I’d wear skirts, not just in the summer time when I’m outside, but also when it is a little chilly outside in the Fall to show off my legs. And I would be in and out of the doctor’s office with my sinus infection medicine. And I wouldn’t always scratch my damn back. And who knows? Maybe I would be a whole lot less content. And maybe I would have less joy. And maybe I wouldn’t appreciate my family and the days that I’ve got. Because it isn’t really myself that makes me happy anyway. So, ehh, I’ll just keep it all. So, I am oh so sorry. Please exude my oh so messed up body. That’s just me.
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Old Sticky Love
I believe in goals. I believe in knowing what race you are in and running toward that finish line. I believe in knowing what road you are on and what the destination is.
Love. I want my love to be sticky.
Newlywed James and Caroline were magnificently in love with love. We promised and we dreamed but we were only tying on our tennis shoes and the gun had not even yet been shot. Counseled, researched, planned, and eager, we set out in the race of marriage and a life together. But we had not yet gotten shin splints, holes in our tennis shoes, and the weather was a perfect sixty-five degree sunny day.
Newlywed James and Caroline sat in the food court of the shopping mall, planning where the day and our life would take us. And then we got some of the best advice new love can be given.
Their age was old. The kind of old that can barely move and the movements are slow and thought through. She sat with white hair and a shriveled body in a wheelchair pushed by a white haired man, leaning over using her wheelchair as a cane. Her hand was held across her body and her fingers were gnarled. Their short walk from the door was an exercise in and of itself.
They sat. Sat at the table right beside us. He slowly and patiently moved the chair at the table and replaced it with her wheelchair. There was no talking, just slow movements. And then, she was left, left waiting. He, the more mobile one, departed and began a slow shuffle just a few feet away but each step was a goal accomplished. He achieved what he had set out for and slowly returned to her side.
He dipped the spoon into the cold, creamy vanilla. Their eyes met and they lovingly smiled at each other. He lifted the spoon to her lips, his hands were shaking with a tremor and uncontrolled movements. She opened her mouth as the spoon fluttered forward.
Love. Love fed her ice cream. Love was sticky all over her face. Their painstaking and exhausting mission was to set out and share an ice cream. After a couple of bites, she had it all over her face, sitting smiling, smiling at her love.
The cup was emptied. With great labor, he threw away the cup. With great pains, he returned the chair to the table. And they began their slow march to the exit.
James took my hand in his. We smiled at each other. We each had the same goal.
Now, the gun has been shot. We have gone through a few pairs of tennis shoes. We have helped each other up a few times. We run and run. Quitting is not an option. One day we will sit and have our celebratory ice cream and then we will pick ourselves up and soar one last time right through the finish line.
We never talked to them, but their actions spoke louder: Love can be sticky.
My heart skipped a beat, my breath stopped, and my brain studdered. I stared in complete admiration of the man that stood before me. I could not take my eyes off him. Khaki pants and a red button down shirt. Dressed up for the special night at King College and just standing there in my path. He might as well have been wearing a president’s mask and holding an automatic because that is the night he stole my heart.
Twenty year old Caroline lay stoic on my dorm room bed staring up at the white ceiling. I was holding my 2001 cell phone to my heart as a lonely tear slipped down the side of my face and then the gun fired and the race horses bolted through the metal gate. Tears raced down my face like the Kentucky Derby. I had a countdown. Four weeks and six days. Four Weeks and six lonely, miserable days. My love was fourteen hours away. I would see him again in four weeks and six days but I would die if I did not see him in the next minute.
A proposal on his knee, a white dress walked down the isle and promised forever, and purchasing our first old one bedroom condo. I thought I was the richest woman in those newly wed days, pinching pennies to buy things for our home and making do with what we had. But immensely, lavishly, spoiled rotten in love, which is far greater than money.
My life was wonderfully wrecked by this outrageously beautiful dream come true that has her Daddy’s smile. Miracle of miracles, she medically never should have been born. But one more time, God’s blessings did not depend on human logic. In one more way, she bonds and holds us together as we share the greatest responsibility of a human life we both adore. Her logical mind is due to her Daddy and her hosting spirit must belong to me. Her life and her smile and her blonde hair is because of us.
Every other day I am grumpy and moody and outright mean. I demand and pout and insist on my way. And every single day, this man choses me. He listens to my rants and gives and serves and loves. Hot fresh coffee early in the morning, making new dreams on a Friday hot date because our old ones have already come true, a new handmade coffee table in my living room, and laughing til I’m crying with him when I should already be asleep.
If love is an attraction, I have loved the deepest. Could love just be a desire to be together? Then I have been made one. Is love promising my life to him? Then that duty is done. But could love be a miracle of something otherwise that never could be? Well then, she walks among us smiling so innocently. But I have come to realize, maybe love is when I am at my worst and he still choses me.
It can’t be defined nor wrapped up and contained, but one thing is certain, I have been loved beyond explaining and I love beyond words.
HAPPY BIRTHDAY TO MY FAVORITE MAN IN THE WHOLE WORLD! I LOVE YOU JAMES!
I Hate You. Give Me a Hug!
Allow me to say something extremely controversial, men and women are completely different. Not going into that debate right now, but because this is my article and I get to, I’m just going to state that as a fact. They are.
Pre-marriage, James and I were having this conversation and trying to help each other out. We were trying our best to understand the planet that the other came from.
James, a grown man still appreciated monster trucks. I found that just embarrassing. He understood economics, knew how to clean guns and change the oil in the car, and laughed at farting jokes that I thought were highly inappropriate.
I, his extreme opposite, could gain control of a group of children and teach them something educational, could cut a pomegranate the right way, could change a diaper, and could write all day long on any topic.
(I know we fall into extremely traditional gender roles. I’m not saying this is the way it has to be. (It is just who we are.)
But as we sat discussing each other, oblivious in young love that it would ever be possible for us to ever get mad at the other person, I said something to James that was perhaps my best premarital advice, “When I get mad at you and say ‘Go away’ what I really mean is ‘Come here and give me a hug and make this better.'”
I can hear the married women shouting at me now, “Not me! That’s not what I mean!”
Sometimes, yes, we need space. But here is what I do disagree with.
I once heard a middle aged man bragging that he and his wife of several years had never ever gotten into an argument. Meant to be a bragging point, I immediately thought, “They must have a horrible marriage!”
Ya see, when two people blend their lives, someone is bound at some point to disagree with the other person. Did they not know how to face conflict? Was one of them afraid of the other’s controlling temper? Or maybe he was just lying?
I admit, I can get more upset with James than with anyone else in this whole world but during those times I still want to know that he loves me. I might be really really pissed about something but I want to hear, “I still want you. I still chose you. I still think you are beautiful. And we will work this out.”
So, discussing differences, James is logical and I am emotional. So, in the beginning when I was discussing gender roles. The responsibility of remembering this falls on my man.
When things get heated and I start yelling, what I really want to hear is, “Honey, I love you.”
Not fair, I know. Give me a hug.
Staring at My Family
Because I have him,
My heart beats.
Because she calls me “Mommy,”
My heart beats.
The Christmas tree that captivates,
Parties, Carols, Presents, and festive dinners.
Thank God for the gifts he gave me,
and my heart that beats.
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This Me That’s You
It’s not that funny or as grand, just not that big of a deal unless you are here.
I have this big part of me that has become you.
It’s not a phone call or a promise of tonight.
It is needing you here with all of my might.
I can not think or concentrate.
‘Til I have you by my side.
Cause it’s part of me that’s missing.
How am I supposed to see without my eyes?
Or run without my legs?
Because my heart can’t beat when I’m all alone.
It misses you that’s me.
That is where you are supposed to be.
Messing up is the name of my game. Idealist at heart, I see my mistakes as I am making them and then I have a hard time letting them go. I say “no” to visiting with a friend when I should say “yes,” I am not patient with my daughter when I am the one running late, I am selfish instead of serving my husband. Again and again, I chose me instead of looking around and being so overwhelmed with thanksgiving with having every single desire that I have ever wished upon met in my here and now. I am living the dream. As a little girl, when I sat with my chin resting on my palm, staring out the window and thinking what I wanted in my wildest dreams, it is this! It is my husband and my daughter and this life that I live. I am ashamed that so many days, I stress about cleaning my home instead of playing “Littlest PetShop” with Madison, I am ashamed that I snap at my husband. But not today.
Today, I look at them and I will spend my whole entire day thanking God for them! Today, I will squeeze Madison tight and kiss her cheek over and over until she wiggles free to go play with her cousins. Today, I will just sit on the couch with James’s arm around me. Today, I am immensely thankful for my almost 8,000 new friends that I am sharing life with through Beautiful Life with Cancer. Today, I am thankful for my in-laws that I miss that I can’t be with today. Today I will join hands with my humongous extended family as we pray and thank our Savior for living a life of suffering and dying a tortured death so that I can live my life of blessing and partake in the hope and joy of a future in heaven, today I will feast and I will be thankful. Today, I give thanks.
A Hot Date with Cancer
I hit the town with my man. He is hot. I mean, he is that guy that turns heads and he is mine. How did I get him?! Not only is he hot but he is the whole package!
Babysitter for the night, we freshened up in our hotel room for the night then headed to Maggianos. Yum and fun. We took a “seat yourself booth” beside the bar and we ordered drinks. I needed a drink. Then we ordered some comfort food. We laughed and we looked …normal. We looked like a couple with a babysitter having a date. Well, my man knows how to treat me and we were not done after dinner. We hit up the Kroger for some dark chocolate for me, gelato for him, and we mixed and matched a six pack for us to share. We laughed and held on to each other. “This would not be fun with anyone but you.” His simple compliments mean the world to me.
Seeing us here, someone would almost think we were normal. I feel better than that. I feel like I have conquered the world. And so I owe the world to my husband. Because I am not wearing this scarf to make a fashion statement. When we return to the room and I pull it off, I am hiding a fresh scar and a swollen incision. And we have not traveled seven hours for our fun night on the town. I have a post op. appt. tomorrow at Duke.
But I strut through this town like I own it. And I walk through the doors of Duke University Hospital like I have an honors degree here. And I chat with the leading surgeon in MEN2A Cancer like we are BFFs. Because I can do anything. I can have cancer. And the very best husband in the whole entire world just makes it feel like one hot date.
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