Listen to the audio version of Battle Flag:
It’s been over four years since my rheumatoid arthritis diagnosis. I can safely say that I am a completely different person. 2007 to 2011 were incredibly painful years, a torrential landslide of life’s proverbial storms; I went – kicking and screaming – into the next setback, the next tumult, the next mind-numbing catastrophic circumstance. I endured an abusive marriage for far too long, a spouse’s un-repenting infidelity, a miscarriage, a cataclysmic divorce, veritable homelessness (if it weren’t for the owner of my real estate company at the time) and a crash course in living with RA – nearly simultaneously.
There were times where I couldn’t raise myself from bed. Times where I’d just let life’s beauty and wonder slip right past, in search of some miracle that would restore my “regular life,” my “dream,” my “ideal” that I had expected for myself.
Seriously, what the hell was happening?
I was going down in flames.
Didn’t God understand? I had a life plan to make six figures by the age of 28, pregnant and with adorable kids at 30, a beautiful marriage, continued professional and entrepreneurial success, legions of friends who loved and supported me and a perfect family. The sun would rise and set on my perfectly-planned, immaculately-manicured household. On my beautiful, blissful, Stepford life.
So why in the hell was God trying to ruin my plan?
Every ever-lovin’ rug was being ripped right from under my gleaming Gucci pumps.
Then God even took those high heels away.
And what material possession he didn’t strip right off my back, he didn’t allow me to wear or use. RA had control of my feet and my life now; I didn’t.
My autoimmune disease took a stranglehold on my life. It shot down my hopes, my dreams, my expectations. In part, it erased everything I thought I’d be.
Perfect. A lesson in humility among the onslaught of life’s you’ll-thank-me-laters condensed into a Cliff Notes’ version of Lora’s life.
Little did I know… This dressed-down version of Lora was the beginning of who you know today. It was God’s “re-build.” A do-over. I had a second chance to get it right. To see the things that had always been around me, but that I’d never noticed. Where strength came from within and blessings came from places least expected. Where I began to be a hugger and a true lover-of-life. I stared at adversity and rose above it. I learned. I evolved. I healed. RA was – and still is – my battle flag.
Has your life changed with an autoimmune diagnosis? Have you ever felt like you’re holding on by the thinnest of threads?
Learning to live and continually living with RA or a chronic illness is very similar to how we deal with grief. It is, in itself, a loss of a way of life, a loss of expectation, a loss of our old self. And healing must occur in order to move forward. There’s an old adage that says “time heals.” I disagree. Time can amplify pain, worry and anger more easily than abate them. What you think about, you become. Whether your heart heals from the pain of your diagnosis and you begin a new life with RA will be completely up to you. Healing and moving forward is your choice.
As I look back over the past four-ish years, so much has changed in my life. Where RA is my battle flag, my journey has created a woman whom I never would have recognized a decade ago. She’s been shunned, scorned, stripped and rebuilt. She’s been through battle and fought like a warrior. She’s stronger, more compassionate and more loving than she ever thought she’d be. And it’s because she lost it all.
I’d like to share my four-stage “evolution” with you, in hopes that we are not alone in our journeys with this disease. If I can help your journey in just one simple way, my day has been made. And I want you to know that you are not alone.
Here we go .. RA is my battle flag, and this is my Evolution.
Phase 1: Shock, Grief and “Are You Freaking Kidding Me?”
Well, slap me upside the head with a friggin’ 2X4.
“Is this how it’s gonna be, God?!? Seriously?!”
I stood in the middle of my 854 square-foot apartment, shrieking at the ceiling, tears spilling over my cheeks. The windows were open and I didn’t care. My apartment backed up to a creek bed and the echoes of my rant fell against the cushion of the pine trees. And thank goodness the neighbors downstairs rarely used their hearing aids.
“What have I done to deserve this?!” I wailed, falling to my knees, my hands pulling at my hair, mascara streaking down my face.
Pounding the ground with my fist seemed a little much, so I missile-d all 7 of my decorative couch cushions across the room.
It just felt good to throw a fit.
I was scared. I was lonely. I was hurt.
My fear for the future was palpable.
My friends were scattering like beetles – from the divorce, from misunderstanding my diagnosis, from my firehose of life’s “little” amendments and contractual changes. I wasn’t sure who I could even trust anymore, and losing them was like losing a part of myself.
Who on earth will love me now? With this, this disease hanging over my head?
What happens when I can’t walk?
What happens when I can’t workout?
What happens when I can’t work, God forbid?
What the farkle is going to happen to me?
I was on my own, alone and out of favors.
I was frightened beyond belief.
I felt the depths pulling at my heart, beseeching me to simply give in to the darkness. To uncork two oversized bottles of red wine and have one big, feel-sorry-for-myself pity-party. To wallow in a place where I may become entrenched.
And while I won’t comment as to exactly how much wine I really drank that night, I knew I could never lurk in the darkness, lest it swallow me whole. I still wanted a life. I still wanted happiness. I still wanted love. And I still wanted to be loved. I just didn’t know who I was anymore.
My routine saved me. My faith saved me. And, in part, the gym saved me. I got up every morning and followed my routine. Having things to be accountable to saved me.
Eventually, I worked off the shock of the 2X4 blow, righted my mascara, fixed the couch cushions, drank all the red wine in the house and moved on to Phase 2, which I fondly call:
Phase 2: Anger, Frustration and “I am SO Pissed Off Right Now!”
The cursor on my laptop screen in the so-called “office” of my 854 square-foot apartment blinked back at me.
So I glared at it. It was 3 o’clock in the morning and I couldn’t sleep. Again.
Prednisone. Cortisone. Methotrexate. NSAIDS. Folic acid. Vitamin B. Vitamin D.
Should I just buy a pharmacy?
“Let’s just figure out a cocktail that works for you,” my former rheumatologist suggested.
“Yeah, let’s do that… Maybe soon?!”
I’ll be clear: it wasn’t my Rheumy’s fault for how I was feeling. I was simply angry. At everything.
My fear had subsided somewhat. I was learning to deal with this new stack of cards. But things had begun to sting. Friends drifted away. People I would have previously classified as supporters seemed to slip into the ether, never to be seen again. It could have been the divorce, it could have been the diagnosis, it could have been that I was just acting like a royal pain in the a$$.
But I was frustrated and angry.
I continued to glare at the screen. Didn’t God know that I was on a timetable here? I have only so many years to live, and I have a lot of stuff to accomplish… And this autoimmune disease gobbledy-goop was really cramping my ability to get things done.
Life is not turning out how I had envisioned it.
Honestly, I couldn’t think of anything else in that moment but to growl. At my computer screen. Yes, I know how that sounds now; I didn’t then. It seemed perfectly logical at the time.
Every waking moment of the day – which included many nights as well, my head spun the words, “Why is this happening to me?” “What have I done to deserve this?” “Why, why, WHY?”
Cursor on the computer screen: “Blink, blink, blink.”
“Yes!!!!” I squirmed with delight in my chair (in fact, it’s the chair I’m sitting in now). My daily inspirational email had been delivered at 3:32 am exactly. I had known it was coming and I needed to read it. It couldn’t wait till morning. These nights (and days) – living with so much anger, I craved this message of hope. I waited for it. I cried as I read it. Each and every day, that little “DING!” kept me going. I clung to the joy it perpetuated in my reality. There was still good in the world. There was still hope for me. I would, somehow, find my way out of this.
Conquering anger isn’t easy. In fact, it’s one of the most challenging aspects of overcoming the grief of a diagnosis and thriving with a chronic disease. Anger is a trap. It sucks you in, gurgles you around, spits you out, and you’re never fully the same, as long as you allow it to have a hold on you. It lures you with a false sense of hope and action, only to leave you stripped, bare and bitter.
It took me several years to working through every facet of anger I felt. It was like digging in the trenches of my soul, excavating the blackened parts that no longer held meaning. It meant forgiving people who hurt me beyond comprehension. It meant letting go.
Ultimately, overcoming my anger and embracing forgiveness (for others and for myself) were my tickets to freedom.
Phase 3: Construction Zone Ahead – Rebuild in Progress
My construction zone began in the back of an extra-large Penske truck.
I know your eyebrows are raised; hear me out.
“Well, we’re just going to have to get rid of more stuff. We’re running out of room,” Jake deadpanned, hand-on-forehead in disbelief.
“Seriously, how can two people and two dogs have so much crap?” I stared back at him. “Well, let’s just get rid of all this [stuff]!” Half-mad, I jumped off the back of the truck and began lugging untold boxes off the ramp and end of the bed, pitching them sideways toward the growing (and growing, and growing) mountains of donations, debris and trash.
“Harumpfft!” I was exhausted, mildly irritated and just wanted to get on the road. I surveyed our freakish caravan: 2 extra-large Penske trucks, filled to the brim, each loaded with a car trailer – one housing Jake’s Chevy Chevelle and the other my Lexus sedan. Then, there was Jake’s truck, a motorcycle in the bed, towing the boat.
It was an undeniable three-ring circus.
Destination: Round Rock, Texas.
It was a three day drive, some 1,900 or so miles. We begged a neighbor to drive the third truck for us, paying him in all we could – food, lodging and a meager plane ticket back to Reno.
That is where my rebuild began.
Now… I’m not suggesting that you should engage your wild-hair and move 2,000 miles from your friends and loved ones. This was simply my journey. It was cleansing. It was scary. It was liberating. And there were times where I thought we were positively looney.
It was one of the best decisions of my life.
I was ready. I was ready to move on. I could think outside of the fear, the anger, the hurt, the frustration. I was ready to recreate my new life, embracing my disease, accepting myself .. And most importantly, loving the new me.
The drive to Texas itself was even symbolic for me. I thought a lot… I did have two traveling dogs in the truck with me, but they were quiet, skeptical, sometimes brooding and napped a lot, so I did have time to myself. To simply think.
This disease will not define me. How can I make each day with RA better than the day before? How can I cope in difficult times? How will I shape my future?
What’s important to me? How will I continue to grow stronger? What’s my action plan?
I must trust that this is my path. This is where God wants me.
I thought about my past, present and future – friends that I’ve loved and lost. And I cried that day in the truck because I’ve been blessed with the most wonderful husband and incredible best friend. Yeah, I didn’t get it right on the first go-round, but God gave me a second chance. And I nailed it this time. I love Jake beyond words.
I defined what the new me would look like. And I like her. I like her a hell-of-a-lot-better than the last Lora. She knows what’s important. She understands life a lot better now. She has found her strength and her voice.
And maybe, just every-so-often, you may spy me at 3:32 am waiting for my beloved motivational email. But most nights, I sleep better. My soul is at peace. I don’t have all the answers, but I know God does.
Phase 4: Legacy
As you rebuild your life, your new you, many things will feel and look differently. Priorities will change. Some pieces that were crucial will fall away, and others that weren’t a blip on the radar will reach out and shake you by the shoulders.
You’ll begin to think more about the quality of your life, about what your voice says to the world, of what your legacy will be.
Mid-October in 2013, I began working on my legacy. It started in a ballroom in Santa Clara, California. It almost knocked me right on my a$$.
For months, I’d been struggling with my purpose, of what I wanted to be “when I got all growed up.” There was a discord in my soul and I could feel it. But I couldn’t figure out what the heck was happening, and I certainly didn’t know how to fix it.
So when the ceiling opened up and the angels sang (that’s what it felt like, at least), I almost had to leave the room for a cocktail.
It scared me shitless.
I suddenly realized that I had a story to tell.
If I had made it through hell and back, I had to share my story.
I could not – in good conscience – not help others.
I looked back and remembered how alone I felt, in that dang apartment with my sweet elderly neighbors. The quiet creek and forest as a back drop to my rants and raves. With cursors blinking back at me in the middle of the night. Blundering through a divorce, a diagnosis and stripped of all that I knew. Using pillows as missiles of frustration and teetering as best I could to keep my healthy workout routine going. And sobbing, alone and uncontrollably, on my couch.
And at that moment (and every moment since), the thought of leaving one person feeling alone with this disease literally made (and makes) me nauseous.
I simply couldn’t let that happen.
And so… On that brisk mid-October evening, I sat on the balcony of the hotel and made a promise to the last light of the setting sun.
“I want to make a difference,” I whispered.
The picture above was that moment.
In the weeks that followed, I thought a lot about this life’s purpose I’d brought to light. It’s always been there – at least I believe it has – but it’s just bubbled to the surface when the time was finally right.
How can I inspire? How can I help others? How do my life lessons translate to others? How can I share and give hope to others who are struggling?
As you work through the grief cycle, your blueprint will look differently from mine. For instance, your anger and frustration cycle may have less (or more) cuss words. Hey, I wasn’t put here on this earth to judge, and I’m farrrrrr from perfect. 🙂 Your rebuild may simply be reorganizing your favorite room, or it may mean starting new practices, like a gratitude journal. And your legacy .. Well, maybe it’s just spending more time with your grandkids, or your mom and dad, or your friends.
Whatever your evolution looks like, it is yours. Study it, hug it, love it, feel it, own it. Savor the small moments, the dark moments, the fantastic moments, the simple moments – because they all matter. They put an indelible footprint on your soul, on your journey, on your legacy. And even though our battle flag is the same, our evolution is unique. We walk similar paths. And you are not alone.
After all, “A diamond is a piece of coal that handled stress extremely well” ~Unknown.
And if God had prefaced me with that before this grand journey, I may have missed the message completely.
I love my life, and I wouldn’t have it any other way.
If you feel so moved, I’d be honored if you’d share your story in the comments below. And thank you for reading; it means more than you could ever know.
8 thoughts on “Battle Flag”
Lora – thanks for sharing your story. You are a great writer and I am so glad you found your purpose. My sister has been diagnosed with RA and I am definitely sharing this with her. Stay strong and keep being inspired and inspiring others! You go girl!
Thank you so much for reading and for sharing! My thoughts, love and hugs are with your sister – although it is an adjustment, there are incredible opportunities to thrive with RA!
I appreciate your support more than you know!
Lora: What an inspiring message! Thank you for sharing your journey. I am blessed to know you.
Thank you for reading, my sweet friend! I am blessed to have YOU in my life! 🙂
See you soon, and big hugs,
Really a great read. I’ve also lived with RA for the last 14 years and felt many of the same waves of emotions at the onset. Your Jake also helped me get through some years of work with it, for this I will always be grateful to him, and to you as well.
I’m so glad you enjoyed, and thank you for taking the time to read – that means a lot to me.
Jake and I both think the world of you (and Karen, too), and he remembers those years fondly. I think you were preparing him for what he’d see with RA when I entered his life, and for that, I’m forever grateful to you. We think of you often and miss you both.
Lora (and Jake)
I always say: I have RA, but it doesn’t have me. Thank you for following. I look forward to reading more of your excellent writing. Wishing you the best of health.
Irma – I LOVE that, so true. I loved your blog and am looking forward to reading it more. Thank you for visiting and reading with me as well. Wishing you the very best in life and in your journey. RA hugs, Lora