“You should never view your challenges as a disadvantage. Overcoming adversity is actually one of your biggest advantages.” ~ Michelle Obama
A permanent limb got me feeling inadequate. Times like this, I should take it slow. But I can’t stop moving. Stillness brings a scary focus to my circumstance. So I keep busy.
I know nothing is set in stone. However, my MRI prophecy still weighs on me. At last check, I had too many lesions to count. The spots show my reality. Even when I hide in the shadows of denial, symptoms always shine a light on my condition. No matter how hard I try to ignore the elephant in the room, at some point, everything gets smashed. Tingling, blurry views and forgotten appointments clog my head with uncertainty. And worst of all, when I experience new symptoms, the fear of disease advancement washes over me. Each flare up, no matter how small, makes me so scared.
That’s because, the scars from my last attack are still fresh in my mind. My hands still shiver when I think about going back to that moment. The echo of my voice silently screaming for help, still rings in my ears.
I was completely bed ridden. I had no control. Deceived by my body. Swindled by Judas, trading away my health for 30 pieces of silver.
It took me to a strange place. Where time didn’t matter. My feelings didn’t matter. Nothing I wanted mattered.
And when I thought it was over. When I believed it wasn’t coming back. When I had nothing else to give. It struck again. Taking more. Eating everything in sight. Memories. Cognition. Energy.
Filling up until all I had left was what the MonSter’s plate couldn’t hold.
And unfortunately, those snippets of abilities are what I must use to rebuild my life. Re-establishing my existence with foot drag, extreme fatigue and a cloudy mind.
People with MS inhale air others are scared to take. And sometimes we become frozen in fear. Starting off the day in the back of the line and spending the rest of our time trying to keep up with the crowd. Listening to everyone telling us to never give up hope.
But I’m growing tired of living off of hope. Always looking for help. Craving to win the lottery. Longing for a cure. I’ve done it so much, sometimes I get lost in my dreams for a better existence. It’s all I think about. And before you know it, I’m no longer living. I’m just wishing my life away. Daydreaming about what could be, instead of thriving in the here and now.
But today I want to stand in my truth. Because I realize, beauty lives where truth resides. And no matter how loud the world can be, once all the noise fades away, we still have to sustain ourselves regardless. Even if all we have to exist on are leftovers.
(Written three weeks after two ER visits, four days in the ICU and two weeks in the hospital)
Nicole, Many of us send you love prayers and well wishes. Thank you for your blogs, they are truthful and moving. Sorry things have been pretty tough for you with the recent ER hospital visits. You are never inadequate, never. Just like a bad relapse – may it all slow down.
Nicole, your words, how you express your TRUTHS, are as poetic, melodic and SEARING a verse as the prose of Paul. We often attract to ourselves that which we hold inside, so I encourage you to continue to stand firm encouraging yourself and others, believing there will be a CURE and leaning on God’s promise that HE will NEVER leave us or forsake us. Every day, every moment, every second is a gift. You remind those of us who are fighting selfish and silly battles that life is meant to LIVE minus the foolishness. You, Nicole, are my SHE-RO.
What you said was beautiful and filled my cup a little fuller. Never hv subscribed to a blog but this caught my eye because of the name. Am now dealing with new effects of MS and other health issues due to aging. Emotionally low at this point and your words helped. Also that you are a believer. Thank you.
You are never a leftover to us….hugs!!
Thank you for sharing your very personal and honest story. You living your truth has given me the courage to live in mine as well. All of it.
I appreciate your transparency and will be praying for you!
Nicole you have strength to continue to share even when things are so terribly hard. What I love about you blog is that it is real. Not sugar coated. Sometimes things are great and sometimes things are sad and nightmarish. Thank you for sharing your truth always and I pray for you to get to a sunnier place soon.
I just wanted to add my prayers and thoughts to you.
Being a fellow ms’er, I so understand.
Nicole, your writing is poignant and beautiful, despite the sadness of the topic. You bring so much to your readers. Thank you.
My prayers are with you
I read your posts with hope and despair. I have been “lucky” that my symptoms have been slow to develop but are now starting to take away my memories and words. I want to give you a big hug and tell you that it will all be OK but I know what the daily truths are and you do too. I hug you anyway and tell you that you are strong and help so many of us feel that there are others that know our thoughts and feelings and it makes each day a little more bearable.
Hugs and prayers!
Nicole, what a moving, well-written post. I share your feelings. Indeed, I had posted the following poem three years. It was my moment of facing hard truths. Wishing the best for you.
Open Letter to My Body – When It and Hope Fail Me
You have betrayed me.
I regret feeling this way.
It is a fact though.
I lament knowing
I cannot depend on you
to ease me through life.
I grieve at being placed
in a Me versus You stance.
Divided we fall.
Every tear I shed reading this – I offer as a prayer to God. I have no words – you have said them all and they have truly “hit me like scripture”. God Bless You Nicole and keep you safe.
Oh Nicole, I’m so sorry for what you’ve been through. I’m a regular reader, but a rare poster. When I saw the pic. on your blog, I gasped. Leftovers was such an odd, but poignant title. I seem to live on scraps with this crappy disease.