“There is no greater agony than bearing an untold story inside you.” ~ Maya Angelou
I was somewhere daydreaming. Flipping through my mind. Watching every channel of my past. Wasting valuable time. Repetitively reflecting on my situation. Feeling really ugly inside.
Sleeping in a bed of sorrow. A slave to my circumstance. Sadden as multicolored tears stain my pillow case. Wishing on fallen stars.
Trying not to live in this world based on another man’s opinion. But the medical specialist can see my future. The MRI tells no lie. Leading me to various doctor appointments. Searching for the secrets that will set me free.
Smiling as everyday strangers tell me, “God bless you.”
They say it because my struggles are obvious to everyone. They all see the tremors in my hands. They hear the slurred speech. And no matter how hard I try; I can’t hide my trouble walking.
But I’m not alone. For millions of us, life is a constant challenge. The loss of control. Having to swallow our pride. Relying on other people for help with daily task. Food. Going to the restroom. Getting out of bed. And if they don’t help, we have to do without.
Losing our health to a MonSter. Having soul snatching conversations with neurologists. Substandard health insurance and high co-pays partially subsidizing medical debt. Spending thousands of dollars at the pharmacy. Money running low. Splitting tablets to make the prescription last longer. Learning how to answer strange questions. We have to absorb a new language. New words.
What’s a myelin sheath? Where are you on the Expanded Disability Status Scale? Which medications are you taking? How many lesions do you have? You seem drunk. You look tired.
Then there are the symptoms, devices and side effects.
Loss of balance. Wall walking. Canes. Foot drag. Walkers. Wheelchairs. Powerchairs.
Sensory overload. Physical malfunctions. Urinary urgency. Confusion. Debilitating pain. An unremitting UTI.
Fatigue. Muscle weakness. Slurred speech. Swallowing difficulties. Numbness.
Wow, what a list!
But that’s only part of it.
No insurance, no medicine.
No money, no cure.
No support, no hope.
We need some help over here. Our basic essentials require some attention. The condition is hiding our stories. The importance of us. Our beautiful minds are suffering from neglect. Negatively impacting self-worth.
Can someone answer our calls? Does anyone care? We are begging for more than a God bless you. We need help for the ugly inside.
Nicole, just read your story and it is full of doom & gloom. I have had MS since 2001, and was diagnosed last yr with stage IV peritoneal carcinoma. Did my life turn out as I planned? Ye! I married a wonderful man, I have two children I adore & two beautiful grandchildren. Life has been good. Did we do all the things we planned on doing at retirement? No. We are alive & take each day as the gift it is. We have just learned to do things differently. We laugh, enjoy each other’s company & LIVE. Tomorrow is not guaranteed. So enjoy today.
Nicole, my name is Carol White, and I just discovered your blog today. I read “The Ugly Inside” four times! It amazed me how someone I’ve never seen nor heard of before captured my emotions so completely!!! I was diagnosed in 2020, and it has been an absolute rollercoaster! Thank you for sharing your thoughts and emotions; I’m glad I’m not alone and have a resource for when I am at my wit’s end. Thank You!!!
You are beautiful, smart, and a talented writer. Thank you
Nicole, Your voice should be heard everywhere, but most importantly the powers that be in government, you have such an amazing gift to express what others cannot. Please keep posting, your voice is vital for so many who are struggling, Someday the hurting needs to stop. Never loose that beautiful smile, it is one in a million.
Amen! Thank you for your truth. Keep smiling, you’re doing great as a boy on bicycle called to me when I was stopping to sit at only bench in the park. “You’re doing great!” xox
Fantastic message everyone should hear! So true,
You covered it all.
Wow your hit all of our concerns thank you
This sounds all to familiar.
Wow Nicole! You nailed it. Thank you for voicing this truth so distinctly, that you absolutely do share with so many. I appreciate you.
Preach, sister! Preach!