“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” ~ Misty Copeland
I made future plans and the universe laughed. Now I’m scratching my head, trying to figure out what to do next. Prescription pills and prayers help me cope with the reality that I’m not in charge.
Just look at my x-rays. That’s where you can see who is giving the orders. The lesions are in control. They are the lesions of doom. And I’m constantly fighting to regain power over the plaques.
I try to ignore the bitter pain of losing authority. But it always breaks through. Leaving a sour taste in my mouth. Each doctor’s visit is a reminder of my inabilities. MRI readings reveal each spot’s hiding place. And once I learn the locations, it’s almost as if I can hear the violence in my head and spine. Annihilating myelin while slowly trying to destroy me from the inside out. Manifesting itself as fatigue so powerful I now spend most of my day in bed. No make-up, uncombed hair and half of my clothes on the floor.
Its supernatural control has me living under an orange sun of fear. Where I sleep through my days and live in my nightmares. I walk in my dreams and limp when I’m awake.
I’ve become a shadow of what I once was. I don’t act the same. I don’t talk the same. I don’t move the same. And if you listen closely, you can hear me whispering for help. Praying to God for relief. I do it for so long, sometimes I run out of air in my lungs.
And whenever I stare in the mirror, my reflection holds me still. I can’t look away. My heart skips a beat when I see the real me. And I can’t hide the pain. Even my shadow looks sad some days.
So to combat the control I’ve lost, I spend time with people that know how I feel. They understand me. They have been where I have been. We talk online and in person. Most have experienced the same symptoms as me. No one laughs when I ask silly questions. I don’t have to explain why I’m tired. I’m not judged because of my weak voice. Everyone just accepts my limitations. It gives me a sense of community. It brings me joy. And most importantly, it grants me some control. Control over the lesions of doom.
Totally get where you’re coming from. I’m right at the cusp of having to leave the island of denial and secrecy and enter the land of confession and pity. Not thrilled.
Nicole, you are amazing. It makes me so happy after reading your post.
I read this and just cried my eyes out. I get this. I so get what your going through. Thank you for expressing the truth of how this feels…damn you MS…I’m not the person I used to be and nobody understands, why I’m so exhausted for no reason and feel trapped in this body. Yes I’m thankful for the little things, a smile from someone, caring words, sunlight on my face.
But it sucks! It really does. And it feels good to not hide my feelings and ‘pretend everything is peachy.
Thanks Nicole. Thank you for being honest. And I get it. I so do.
Dear Nicole, I just found out on my October MRI that I have had a stroke on top of recovering from quadruple bypass heart surgery in April 2017. Now I can’t walk. My balance is so bad I furniture surf at home and don’t leave the house unless my husband or step-daughter is with me. I hang in there because I JUST CANNOT GIVE UP! I don’t want to. I don’t like my life facts now, and I cannot change them. So I ask God to help me as much s He deems available to this poor sinner and take it a day at a time! some days are unbearable. Others go by just like that. Thanks for sharing exactly how I feel with this lousy disease. AI’m not ME anymore an I don’t know who I am either. Prayers honey for comfort and guidance.
Wow, your comments mimic what I just learned from my last MRIs. We all must be tough and keep going. I’ve been doing it for 26 years and with God’s help, good doctor’s and friends to help me with this journey. I am determined not to give in.
Beautifully written. We are all members of an exclusive club we never sought to join Though not doing full justice to the beauty of your words here, this has inspired me to write the following poem now on my blog.
Help As I Travel
I whisper for help
as lesions of doom betray
my former life plans.
on my life’s unforeseen path
The sadness of loss
experienced and to come
Inspired by Nicole Lemelle’s
Lesions of Doom
Hugs gurlfriend. I’m honored to say you are a friend of mine. MS introduced us to one another for that I’m thankful.
“Even my shadow looks sad some days.” Wow. You are a poet. I gain so much by reading your blog. Thank you.
I am always amazed by your insights into living with MS. Although I have been spared some of the symptoms you describe, I am overwhelmed myself by those we share. Yet when I see you, I see the outer shell we all create. Your beautiful smile, your many friends, your confidence, and many other qualities. Through it all, you have created a Blog that helps us all. I am grateful for all that I have learned from you.
Not really an uplifting post to read but so true to how lots of ms sufferers feel daily. Puts into words how I feel each day but I can’t always put into words.
It’s quite a sad post to read but I felt enlightened by it somehow. It made me appreciate my ms exercise group more because it is true that we can feel understood.
Very well written Nicole. God continues to be our strength when we are weak. Know that you are not alone. Ever. I pray that you find a reason to smile broadly today. LAUGH heartily today. Put on some make up today. Live today! God Bless you my dear!