On a Personal Note…

Many of you have read my recent release, La Vie en Rose, which is a story about life. It’s gritty and beautiful and sometimes horrifying. To be clear, I write romance and the one rule of thumb all romance writers are expected to follow is there must be a Happily Ever After (HEA) at the end. I will never let you down in that department, but I will make you cry.

Stories are my world. They are jolts of emotions that strike when we least expect. They make us feel and the best written ones stay with us in a haunting sense that makes us sigh when we look back. The subtitle of La Vie en Rose is Life in Pink. The first thing readers notice about this story is the lovely pink bow on the cover. Some pick up on the subtleties and some don’t, but now that several hundred copies have sold, the cat is out of the bag. La Vie en Rose is about loving someone with cancer.

I’m writing this article today, because this morning I read a review that brought me to tears. Written by a woman who watched her mother pass from this horrible disease and also faced a life altering scare of her own. Over the past month since La Vie en Rose was released, I’ve received countless emails from women who had a personal connection to this book, every one mentioning how parts slayed them, but in the end it was worth it. La Vie en Rose is about cancer, but it is also about life, the beauty of it, the fragility, and the necessity of love and hope.

When I read reviews as personal as the one I read today, I suffer such longing, because I want to hold that person in my arms and hug them and tell them they are strong and it is their strength that guided my muse through these pages. Of course we live in a world of tweets and character limits, so I can’t possibly respond as eloquently as my heart wants in these situations, but I do have so much to say.

To the woman who lost her mom, you are an angel on earth, one that sets aside your own pain to make her suffering a little less. To the one who worries who will make sure your daughter’s wedding has every perfect touch in case you aren’t there to oversee the plans, I, too, know this worry. And to the woman that feared her life would be cut short when she finally understood the meaning of chaotic perfection, I am you.

No, I am not a survivor of cancer, but I am a survivor of the gut wrenching fear that keeps you up at night and makes you wonder why? I don’t typically air my personal business online, but so many of you have shared your triumphs and sorrows with me I wanted to give you something back.

It was the happiest time of my life. My husband, who I have been with since age sixteen, was a brand new father and I was a glowing new mom. Our daughter was four months old. The world lay before us, open to endless possibilities and countless moments of indescribable joy. Our daughter was incredible. She slept six hours at a time. She was always happy. There has never been a moment in my life when I felt more blessed.

My pregnancy was magical. I loved every moment, but there were moments that took me by surprise. Around seven months I found it harder to get around. One day I was trying to sit up and get out of bed and a shooting pain sliced through my leg. I cried out and Mike, my husband, came running. He carefully helped me sit up, but I screamed, because even the slowest motion was excruciating. I figured Charlie horses were underrated and eventually it passed. But a week later I had another episode. And then another.

These moments were so acute and so severe I started to worry. I made an appointment and had a Doppler scan to check if I had a blood clot, but everything came back negative. Some days I was fine, but other days it felt like someone was hammering ice picks through my knees. When my daughter was born, I forgot about all the aches and pains. The miracle I held in my arms overshadowed every bit of ugliness in the world and I was too obsessed with her to pay attention to myself.

But as time went on other strange things happened. I lost the ability to turn a light switch or pull a piece of bathroom tissue off the roll. My motor skills were so on and off I didn’t know what was going on. Some days my fingers would curl up and stiffen and I’d spend hours walking around with a misshapen claw and then it would just go away. My true moment of fear came when my arms went numb and I almost dropped my infant daughter.

So off to the doctors I went. I was tested for everything from carpel tunnel to cancer. And then I was sent for more tests. It took four weeks for my doctor to narrow it down to three possibilities. I either had cancer, scleroderma, or systemic lupus. I came home and held my daughter and cried for hours. Then I sat in a chair and hardly moved for days. I watched my mother fall apart in fear and my phone ring with calls I couldn’t bring myself to answer. I was twenty-six years old and I was going to die. We were all going to die, but I was ahead of schedule.

After days of silence and endless tears, Mike begged me to talk to my friends. I looked at him and said I couldn’t. I told him, “Sad is the biggest word I know right now and it’s swallowing me whole.” No one could ease my worry and I cried even when my daughter did something beautiful. It was the longest time of my entire life. And the closer it came to the results the more I feared my journey would end.

Our plate was full, but Mike took me to the SPCA, which was probably the best thing he could have done. We had a dog and didn’t need another one, but if I couldn’t save myself I was saving something, so we adopted a frightened little pup who had been abused and neglected and brought him home. However, once the dog settled, my sadness came back. That dog saved me from myself. He needed love as much as I did in those quiet, endless moments. He asked nothing of me and shared an appreciation for second chances I didn’t think others could fathom. But he didn’t cure me. No one could.

One night, Mike and I sat on the porch, drinking a bottle of wine and had The Talk. As the reviewer mentioned earlier, there is really nothing in the world that describes a conversation like that. It was one of the most horrifying moments of my life. I’d done my research and knew what I was up against, each outcome different, but none of them good. I had a two out of three chance that I might not live long enough to see my daughter start kindergarten. One of the possibilities would have left me deformed and I was so afraid I might scare my daughter as the disease progressed. I had to tell my husband to make sure someone was there to brush my hair and fix my eyebrows so my daughter didn’t fear hugging me when I was nearing the end. I had to tell him to fall in love again, but choose someone that would love our daughter as if she were their own, even though no part of me wanted to share them with anyone else. It was the most raw and excruciating conversation of my life and even now it guts me.

The next day I got the call. I was diagnosed with systemic lupus and I would be on medication for the rest of my life. I would have the immune system of an infant and a common cold would debilitate me for weeks. Things like the flu could be lethal and exhaustion would be an every day occurrence. Of course I already had all these symptoms, so it was somewhat of a relief to know I wasn’t imagining them. And the strangest part about that conversation with my doctor that day was the overwhelming sense of relief. It blindsided me and dropped me to my knees faster than any stabbing agony ever could.

photo (13)In the months of appointments that followed as I spoke to specialists, I gained a true understanding for this disease I’d never heard of. So many issues in my past made sense now that I had an explanation. Every doctor I met with was shocked I had a baby with little issue, because miscarriages and worse complications are very common with lupus patients. They told me I probably wouldn’t have more children, because having my daughter compromised my immune system to such a degree. It broke my heart, the idea of not having more kids, because my husband wanted a big Irish family. We were supposed to be the McCulloughs, me the crazy mom that cursed too much and couldn’t drive. And him, the quiet, adoring father that doted over his insane wife. And no matter how understanding a man is, when you know their dreams and know their expressions well enough to read their emotions, you know when you’re breaking his heart. I was broken.

It took me years to come to terms with my doctors’ advice. I went through case studies and toyed with my medications, suffering for months on end until finally I couldn’t take anymore and admitted I’d had enough. The medication made me functional and my daughter needed her mom. Having another child would put me at too much risk and leave me too weak to handle ordinary motherly duties. So we gave away the baby items my daughter had outgrown and focused on being parents of an only child. I’m happy to say, I know true contentment now, and I will never regret only having one baby, because my daughter is the most amazing person I know and our family is wholesome and happy and complete, just the way we are.

This year marks ten years since I was diagnosed. I don’t remember the person I was before lupus, but I know I appreciate the person I am now more. I’ll always be a little bit fat and my house will never be completely clean, but I know a version of love and happiness that doesn’t usually come this early in life. I appreciate every morning, whether it’s raining or sunny. I don’t get embarrassed over silly things and I don’t waste time wondering what other people think of me. I love my husband and daughter without restraint and I enjoy my parents as two of my very best friends.

39923_1536505782302_624306_nLupus did not win. It is not my enemy. It is my companion, a weight I will always carry. It’s something people don’t see, but I feel it with every breath. Sometimes it has such a hold of me it hurts, but other times I’m in control. Lupus does not define me, but it has changed me. I now know my limits and accept them easily. I will explain myself at times, but the older I get the less I feel the need to justify my choices. I am responsible for one other person in this world, and that is my daughter. It is the love I hold for her and my husband that makes me fight, every day, to live better. They are an endless fountain of hope and reason, and that is me getting in the ring.

So now you know my story and a little bit about my personal battles to survive. It’s not Emma’s story or your254795_2284727367374_2182575_n
story, but it is a story nonetheless and in the end we all share the same objective: Life. I’m living a life in purple. My best friend lives a life in gold. My cousin lives a life in orange. We all have our own ribbons and bows, but at the end of the day we’re all just people trying to embrace the beauty of life.

Love you all.

~Lydia

 

 

Special thanks to all of the readers that shared their lives with me and to Scandal at Scandalicious Reviews for inspiring this heart to heart.

 

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2 Responses

  1. Jane Vogler says:

    Wow. just wow. Thank you so much for sharing! What a lovely story! I’ve had a really bad week. A lot of bad weeks lately. I’ve been complaining a lot too.
    Work has been getting me down. I NEEDED to read this AT THIS MOMENT!
    I’m such an ungrateful person.
    I need to count my blessings-especially since I really do have SO MUCH.
    Our daughter (our middle kid) Was diagnosed with a brain tumor when she was 2 1/2 year s old. It was touch & go for about 2 months. It was benign but it had to come out. It was so rough there for a while. A long time to recover. A long time in therapy. She talked, walked & healed. By the time she was 5 years old, she was doing pretty well.
    She didn’t do very well in school. She hung in there though. She’s 27 years old now. Still lives with us and is (trying) to live as “normal” a life as possible.
    -Maggie&Teddy. (one of your biggest fans).
    PS. a lot of people shy away for sad/heavy things that happen to people. They can’t identify with it-until something happens to them!

    • I’m so glad to hear your daughter made it through such a scary event. I can only imagine the stress this brought you as parents. My daughter had a visit to Children’s Hospital at age two and I remember being numb with fear. She’s almost ten now and I still go back to that moment with every bruise or skinned knee. No one every said parenting was easy, but I think it’s so challenging because it opens us up to so much love. Thanks for sharing. xo

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