Knot Doll: My Story

This is my story of how I set out to give birth to the knot doll.

(K)not all wounds are so obvious….Walk gently in the lives of others…

My Symptoms were my normal–the ankle twists,rare loss of balance followed by falls, the awareness of the effort needed to get all that was explained in a conversation,the dizziness unveiling upcoming weather changes, the ache behind my eyes, the waking tired, the sadness, and the one time complete paralysis for a few minutes.  I was single and alone and don’t know for certain how long it lasted.  I made my way to the telephone to call in sick.  I could not join the car pool.  My classrooms would never know.  I kept the incident a super secret.

I walked into a door and gave myself a black eye.  I wore sunglasses to class and they conjured up a plan to wear theirs the next day.  We were in Hollywood back in the woods of Maplewood High School in Guys Mills, Pennsylvania.  I had run into a pole when I was in High School a few years before and managed to break my nose.  Such klutzy incidents may have been clues.

An only child learns how to manage certain crisis unattended.  I thank God my parents modeled praying before and after meals, crossing themselves upon leaving and arriving anywhere, and when passing a place of worship.  Though I would try to dismiss their habits, I noticed years later, I asked out loud sometimes “God help me”.   He did and has, and I still ask.

That is my story.  My Symptoms were there all along for decades.  Five years ago, after a strange fall caused by a twist of an ankle and loss of balance, the egg sized lump on my head grew large and was painful.   From the CT scan to the MRI, a lot was supposed to have been wrong with me–from mini strokes to multiple brain tumors.  I observed the conversations unattached.  I absorbed the unfolding of opinions as if shopping for necessary items to line a cupboard of life going forward.  At last the diagnosis was MS.  I didn’t understand much about it, and decided I could learn more on my own time and speed.

I realized immediately I did not need the two bladder surgeries that were atrocious.  It is amazing how one can survive unnecessary glitches.  Again, I was thankful to my long departed parents for reassuring me and others to lean on prayer.  I did and do.  Being centered quietly in prayer kept me calm through times of stress and disillusionment.

With all due respect, the neurologist was baffled by my ability to walk since the lesions in my brain and spine appeared to be decades old except for the darker ones in color.  I was happy to see one in the shape of a heart in my brain though I did not mention it.  One learns to be cautious not to speak out loud such observations.  People are thrown off by them, and would unnecessarily consider me a looney basket.  This I know all too well.

Let me divert by telling the story of a bathtub problem.  The water would not drain.  By the time the plumber arrived not only had the water drained but continued to do so properly, and he said, “Madam, I can’t fix what’s not broken.”  Oh, such wisdom imparted, and I do remember the “madam”.  This story came to mind as I watched and listened about the significance of the lesions.

In the office,  after standing to stretch out my arms as if in flight then touch my nose with the pointer finger  of either right or left hand as instructed with eyes closed, I passed the test and even walked forward and backwards like a human pro.  I thought, I’m not broken.  However, the doctor insisted medication was necessary.  My heart could have stopped because natural remedies were mr family’s solutions for all ailments, right up there with prayers.  Reluctantly, I agreed because I was warned I could end up in a wheel chair. 

(By then my Mom had passed, and before moving, we sold her wheel chair.  These problematic concerns were a great bother.)  My thoughts were racing and I was wondering with every step if it was to be my last one.

Three weeks later, en route across country from Boise, Idaho, to Hemphill, Texas, with my husband, two sons, and two Tibetan Terriers, in a dog motel, after a shower, the medication TECFIDERA flared its side affects to frightening hot pink hives.  Wrapped in a towel, I stepped into the room looking rather horrid and demanded two gallons of water.  The dear retired neurosurgeon husband said I could not just stop taking it.  I remember bravely announcing, “Watch me.”  I listened to the fellows snoring as I drank the water all night and walked the floors , visited the potty, and proudly was rid of the colorful lumps by morning.I thank God for the Internet.  A Dr. Wahl from the Cleveland Clinic had given a Ted Talk defamed by the AMA.  Why would you ask?  I didn’t.  I listened to it intently and found other tapes about her.  She was an inspiration.  She gave me hope.  The LSS ( Long Story Short) is to master eating 9 cups of a mixture of fruits and vegetables.  As an Internist, she discovered the way to well being after having tried various medications and the wheel chair.  She made her way back to doing rounds in the hospital on her own two feet by continuing to follow the advice she had given her own patients for years.  We are what we eat.

The day I was diagnosed the doctor told me to remember my date as it would measure the progress of the disease.  I refused.  I just know it was summer.  My stubborn genes would not let that date be a blemish.

“Above all else, guard your heart, for everything you do flows from it.” _Proverbs 4:23

The adjustment of being informed of a condition like MS is most likely the same as any other serious one.  I took care to stay away from all foods that would harm.  I refused to feel branded even though a silly sadness overwhelmed me for a time and I cried.  It was mostly to console my heart.  So I call MS My Story with My Symptoms and I feel normal.  I survive by following a delicious diet that keeps me relatively fit.  I buy over the counter Fish oil, B12, C, D, E, Magnesium, and Zinc.  I drink them in one gulp at night with water, and I thank God I have always liked water.  I drink it plentifully.

I read Ann Romney’s account of her story entitled in lower case letters “in this together”…  I understood the need for massages as I sought them without knowing why they kept me going.  Those of us who have it, share some similarities.  Not all cases are the same, yet I think she got it right, we are in this together.  I have remained inspired.

Back then, when I found out, my scalp still hurt as it does even now from time to time.  I sat on the floor of the rental we obtained in transition from Maui to somewhere on the mainland, and grabbed a big stool of twine I happened to have in a box.  Knot by knot the knot doll emerged.   Sad and in prayer, I made friends with her and I gave her a piece of my heart.  Each knot took away some of my pain.  I gave her two quotes to carry to help her survive.  The prayer plant had lost some leaves and dried rather elegantly so placed them on the knot doll’s shoulder.  It is our story.

I look forward  to reading your comments…Thank you.


  • Drew

    November 8, 2019

    Good on you, weather the glass is 1/2 full or 1/2 empty. Just drink and enjoy

    • Nicoleta Neagoy

      November 10, 2019

      Hi…I’m not clear about which blog you read… The Knot Doll is one of my favorites. Thank you for commenting… God bless you.


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