Jeanne Wilbur Jan’10

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Dear Howard and Bonnie,

It has taken me many months to respond to your plea for stories (to bring public awareness) about our experiences with Spasmodic Torticollis.  I have found it hard to stir up some motivation to write about my struggles with this malady because I do not want to be a complainer. If I take time to write anything I like it to inspire, lift up and encourage the reader. How can my hurts do that?

My heart has ached as I have read letters to you from other ST’rs – especially those people stricken in their prime of life.  It is then that I feel thankful that I had 74 good years and have only had to endure this for 5 years.  It is hard to imagine a lifetime.  I pray my story will be helpful to someone else.

In the summer of 2003 I recall running out of my kitchen door with the screen door banging behind me.  The sound always aroused the cat napping on the wicker love seat. She had come to attention quickly to catch up with me and follow me up the path and under the arbor to my garden to gather a handful of fragrant herbs for the salad I was making for dinner.  I couldn’t resist taking the time to look beyond the wildflowers at the breathtaking view of green fields, shady woodlands on the rolling hills and then lifting my head even higher toward the soft blue sky to thank my Lord for this time in my life. God is good!

My husband Gene and I were healthy and full of energy. We had gone through some rough times during our 50 year marriage, especially the 5 years that Gene was held as POW in North Vietnam. But, we counted that time as a blessing in our lives because of the wondrous way God took care of us and strengthened our faith.  It was amazing how He held the six of us together (we have 4 beautiful children) during that period of time.  It proved to us, without a doubt, that God would always be with us. He is the great awesome provider!

Just two months later, in early October 2003, we were leaving for Cantata practice.  We did not realize how hard it was raining until we stepped outside on the porch. (It is a good thing the roofing men had finished that day.)  Gene ran ahead to open the car door. I was carrying a large bundle of cantata books, my notebook and purse.  Holding them close to my chest to protect them from the rain, I made a mad dash to the car. I could not see a stack of black roofing shingles – the color melted into the wet, black sidewalk.  My foot hit the roofing and I catapulted over the stack, the sidewalk and onto the driveway.  Right then my life changed!

Gene was aghast as he helped me to the car (the nearest place to protect us from the downpour).  He said we had better go back to the house when the rain subsided but he knows he has a very determined wife. Our grandson, Chris, was in the car and we were ready to go.  Besides, I could not let the choir down – I had been their cantata director for 25 years.  I made up my mind that we would proceed to practice.

My arms had huge hematomas, my legs were bruised from knees to ankles, the books had injured my rib cage and my head had been jerked back, giving me an instant, horrific headache.

With God’s help I got through the next three months.  Our 60 member choir performed in two churches.  We had Thanksgiving dinner for 28 here at home, took care of 7 grandchildren while our daughter was in the hospital having their 8th child (and now they have 9), sent out 100 Christmas letters, baked, cooked, shopped, trimmed, decorated, cleaned, wrapped and had large family dinners here on Christmas and New Year’s Day. The following day we were at our oldest son’s home and it seemed like I had reached the point of no return.  If I wanted to look at someone while they were talking to me, I had to lift my head with my hand!

My injuries had healed but my head ached constantly.  My neck grew so tired from straining to hold my head up that I had to just let it go and fall forward.  It seemed to gravitate to that position with my chin resting on my chest.  The pain was constant and enough to make me cry when I was alone.

Finally, I succumbed to my family’s urging and Gene took me to our local hospital on January 3, 2004.  The x-rays and tests showed that I had 3 fused vertebra, arthritis and cervical stenosis.  The rigid muscles indicated whiplash.

From there 2004 seemed like a blur; visits with my own physician, neurologists, neurosurgeons and pain clinics; treatment from 4 chiropractors, acupuncture, massage therapy and many physical therapists. My days were so hard. I could hardly get my head out of bed in the morning and walk to the family room was exhausting so I would lie on the couch a few minutes.  When I mustered enough strength, I could go on to the kitchen where I only had to get out the milk, jelly and bread (we always set the table, made the coffee and set the timer, got out the cereal and the toaster the night before).  Two minutes later Gene was in the kitchen and we could pray and eat our breakfast. How could he be so gentle with me?  How could he love me when I looked so dumpy? Thank you Lord for Gene!

While Gene cleaned up the kitchen, washed the dishes and made the bed I tried to get ready for my day but, by the time I was bathed and dressed I was in a cold sweat and collapsed on the couch again. Keeping appointments was a monumental job a morning out caused me to sleep all afternoon. Most of the caregivers were sympathetic and tried to be helpful but some felt I should try harder to hold my head up. While sitting in a neurosurgeon’s exam room, I told him that it was difficult to force it up and what felt normal to me was to just let it rest on my chest.  He put his first finger knuckle under my chin and his thumb on top of my chin, then as he jerked my head up he said, “That is not normal, THIS IS!” I don’t know which hurt me more, the jerking or the insult!  When Gene and I left his office, I felt pretty dejected.

I was excited to be measured and fitted for a neck brace.  After it arrived I wore it for 4 or 5 months but it didn’t help because it made my headache even worse.  The brace seemed to fight against the constriction that was going on in my neck.  Another help was a Bio Med Transcutaneous Electrical Nerve Stimulator (TENS unit) and it worked quite well and I used if for many months.

My best physical therapist was a sweetheart named Karen.  In treating another woman, Karen realized that my symptoms were similar to those of the other patient.  That woman had Spasmodic Torticollis and she sent me a pamphlet.   I brought it home and hungrily read every word. I was so excited to realize that perhaps I wasn’t just being a baby about this and that others were suffering in the same way I was.  I quickly said a prayer for all those that were hurting and I called the number in the pamphlet.  Bonnie Hawkins answered the phone and talked to me from her hospital bed.  What a saint!  She was able to help others when she suffers so much herself!

She listened to my story and said she believed I had Spasmodic Torticollis.  She gave me a neurologist’s name at the Pennsylvania Neurosurgery and Neuroscience Institute in Harrisburg, PA.  In January, 2005, I went to see Dr. Barbara O’Connell. After examining me she diagnosed my problem as Spasmodic Torticollis, a form of Cervical Dystonia. What a relief to have someone say my problem was real and not just psychosomatic. Dr. O’Connell started giving me botox injections for the pain and I have been receiving them every 3 months since then

My form of ST was caused by trauma when I fell in October 2003!  A chemical, (acetylcholine) was released from my brain and secreted through the nerve pathways to the neck muscles. ST can pull the head in either of 4 directions and mine pulled forward in the anterocollis position.  (At least God gave me a praying position!)

Extreme pain and embarrassment can cause personality changes. Simple everyday tasks such as sitting, standing, walking or eating are difficult.  You stagger and fall easily or topple over if you try to bend to pick up something from the floor.  I haven’t driven a car in 5 years.  Since I can’t see what is in front of me, I bang into open cupboards or the microwave door.  When I sit I see the buttons on the bodice of my dress. If I stand I see the floor beneath me.  When I wash the dishes I can see the sink but not the faucet and since my hands are wet it is not desirable to push my head up.  Everything must be put in the cupboards exactly as they always have been because I reach for everything by feel.

Gene does all the grocery shopping and various other errands. I really do not know what I would do without him. He takes me to church every Sunday (sometimes my only outing of the week) and there I have always found love and comfort. If I need to lie down I just slip off my shoes and curl up in the pew beside Gene. His loving pats affirm his love.

By Mother’s Day, 2005, I had received 2 treatments of botox injections and this is a prayer I wrote at that time:

“Dear Jesus, please don’t let this be a pride thing!”

Last night we went to Rachel’s piano concert at Trinity Church. All six performers were outstanding and it was an uplifting night.  Rachel was the best!  Her sweet countenance and gentle humility made her dexterity and gifted talent even more wonderful and she is only fifteen!  I especially love to hear her play Chopin’s Nocturne in E Minor – not just the methodical notes – her depth of feeling pours from her heart, through the keyboard and into the hearts of the listeners.  Thank You for her precious soul, thank You for gifting her in so many ways!

Needless to say, I wouldn’t have missed her concert for the world but, dear Jesus, it was painful to sit there.  My head is way too heavy to hold up anymore. It not only affects the muscles in the neck and shoulders and the cervical area but now my whole back hurts as my head bends further forward.  I try to straighten my shoulders but everything wants to curl in a ball because my head is pulling down so far.  I’ve been holding it up with the base of my hand and even that hurts. My wrists feel like they have carpal tunnel from holding my head up.

I don’t want to be a complainer but after the long walk to the car and I was safely belted in, the tears started to flow.  I quickly stopped them by remembering how Gene would let me rest in the car while he did the grocery shopping. I began to think about the way I wanted things to be.  How I would have loved mingling with the lovely people who were there to express our thoughts of appreciation to Dr. LaBar and all the performers and being able to be more friendly to Sarah, Paul, Michael and Joe.  I would have approached strangers to get acquainted with them and visited with Jim and Maureen and their wonderful family.

And now I’m getting to the point of this prayer, Lord.  Was it the pain that hurried me out the door? Yes, I believe it was – I couldn’t have stood in one minute more!!!  Or was I ashamed?  I truly can’t stand the way I look; yet up until now I haven’t made a big complaint to you about this aspect of my malady.  I have tried to accept it. I am grateful that I had 74 upright, wonderful, hit the floor running years before my accident, but, sweet Jesus, how can I glorify You in this condition?  Please help me!

There comes a time when we must accept our burden and move on.  I kept thinking about the person I used to be, and yearned to be whole again. Some nights I dreamed I was normal with my head held high and when I woke up, I climbed out of bed and diligently tried to stand erectly – what a disappointment – NOTHING HAD CHANGED!

But something HAD changed.  It was a new day that God had made and because He had made it I would rejoice in it!  With God’s help I would stop looking back and be more eager to face today.  After all, God is in control.  He has blessed me in the past and I know He has wonderful blessings ahead.  All I have to do is lean a little more heavily on Him.

During my February, 2006 appointment Dr. O’Connell was excited to tell me about a new non-narcotic medication for pain called Lyrica.  After I started taking it I slept through the night for the first time in 2½ years. I take one each morning and night but with my nighttime dose I quite often have to take 2 Aleve tablets, Gene rubs my neck, back and shoulders with a natural liniment and we warm a buckwheat pillow in the microwave. I go to bed with the warm pillow wrapped around my neck.  The combination of all these aids has helped very much.

Dr. O’Connell talked with me about making an appointment with a neurosurgeon to see if I qualified for the Deep Brain Stimulation Surgery (DBS). Many ST’rs were having favorable results with the operation so I  became encouraged that it might help me.  When I met with the neurosurgeon I learned that I was not a candidate for DBS. Only those who have the genetic form of ST meet that requirement. Mine was the result of an accident.

Gene bought me an exercise bike. At first I could only go 2 minutes, but gradually I grew stronger.  After a few weeks Gene knew I was in earnest when he stepped into the room and saw me.  I looked somewhat like the headless horseman because my head was hidden between my shoulders. There I was, with hands on the grips, thrusting one arm and then the other in rhythm with my legs that were going “licketty split” to keep up with my feet on the pedals.  Sometimes he made a wise remark but I went on undauntedly because, in my heart, I knew how proud he was of me.  It is exhilarating to be able to go 6 or 7 miles in 25 minutes.  Strengthened by the exercise I began to work in my garden again. By sitting on a low stool I can reach the soil to plant seeds or potted plants and to pull weeds.  The cat is happy to have me back!

A certain level of pain remained and on November 3rd, I wrote this little note: “My pain: Icy tentacles clashing about through the neck, head, shoulders and upper back producing abrasive, unrelenting shock waves.

Please Lord relieve me!”

Three weeks later, on the day after Thanksgiving, I could not see very well. Everything seemed distorted but I thought I could just blink and clear my eyes.  The next morning I opened my Bible to have my devotions. I could not read.  It was if I was looking at a blank sheet of paper with gray markings.  My macular degeneration had taken a sharp turn for the worse. Blood vessels had ruptured behind the retina.

Remember the bleak and blurry year of 2004?  There were many shining lights that burst their rays through that cloak of clouds.  Our daughter massaged my neck 3 or 4 times a week.  Her fingers were deft, gentle and loving.  They relieved the nagging tension.  Our children and grandchildren were gravely concerned.  They kept me warmly covered with their love and prayers.  Our church family, friends, neighbors and even people Gene saw at the grocery store were vigilant to pray.

During that time when the pain made me seem so useless, I was lying on the couch tearfully asking Jesus how I could serve Him. It was hard enough knowing I could no longer serve Gene and our family, but when I thought of not being able to serve my Savior, I cried.  I asked Him for a way to glorify God.

Within a week my dear Mennonite friend, Susie Stoltzfus, called me from Penn Yan, NY. She heard about my problem and wanted me to know that she and her church were praying for me. Soon after that she called and asked if I could write a book about her son who was born severely handicapped. This was the answer to my prayer. God would be glorified through the precious life of John and his gentle, Godly family.

We named the book, “Sweeter Gets the Journey”. Of course that applied to John’s life but as I think of it now those words can be applied to any of us if we choose to walk with God.  His yoke is easy, His burden light and besides – He delights in comforting us.

Now pain is my partner, (sometimes it sleeps and sometimes it roars), but my heart is as joyful as it was the summer day when I ran out of my kitchen door to gather a few herbs.  The prayers of many have given me the best medicine of all – a cheerful heart and I know it came straight from God. He spooned it out and all I did was open my mouth and swallow. What a sweet and satisfying taste!  What a glorious, wonderful and loving Father!!

Thankfully yours,
Jeanne E. Wilber
RR 3 Box 44
Columbia Cross Roads, PA16914

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