My mom was always writing, and she saved everything. Prayer lists, calendars with notations, journals, letters – it was all a record of her life, and she kept it all. Mom always hoped to write a book about her “adventures”, and to Mom nearly everything qualified as an adventure. When I was looking for pictures to display at her funeral I found a box of my blog posts, printed out and kept. I guess that those posts were precious to her, too. Of course, all of this means that my father has an archeological dig to deal with these days. When he finds something that he thinks we children might want, he passes it on.
Today I received an envelope containing a speech my mother gave first to the Ozark Conference and later the World General Conference of the Free Methodist Church in 1996. I didn’t hear my mom speak, or even know that it happened. In fact, the notion of her speaking to a large group is surprising to me. My mom wasn’t shy, but she wasn’t the kind of person who sought a platform, either. Why didn’t she tell me that she’d taken this speaking engagement? I would have been impressed! But I don’t imagine that Mom cared about impressing me anymore than anyone else.
I want to share this with you, with everyone. This is my mom’s story including many details she didn’t share with us when they were happening. I’m still impressed with my mom, even now. Still proud of her strength, of her faithfulness, of her determination not to be defined by her pain. I knew that she suffered but I’m not sure I had any clue how much she suffered because that wasn’t what she wanted us to focus on. She still wanted to be the woman who loved horses and dogs and mysteries and music and her children and grandchildren and most of all, her Jesus. She deflected attention away from her pain so well that I never really understood it. But then, who can understand pain except the one who endures it? My mom endured pain right up until the end of her life, but she didn’t endure life. She cherished it. I’m proud to be her daughter.
Pain is difficult to define. What is pain? There are so many kinds of pain:
Hurtful things that people say,
The loss of a parent, child a dear friend, a spouse
As well as physical pain.
I was blessed to have godly parents who loved us. They passed down their values and their love of music. We did lots of singing at home, while my mother played the piano. My dad took us to the movies every week, where we learned all of the cowboy songs. We sang in the fields on the tractors, and sang while we rode the horses. We sang everywhere.
When we three older ones were in high school we played in the band. My parents got us started singing in a trio: we had so much fun.
Then, much to my own surprise, my head began to tremble when we were performing. I thought I was nervous, and didn’t understand why. It only happened three or four times. We didn’t sing much after high school as we went our separate ways.
My first three years in college I only noticed the tremor a few times. Then it gradually was more noticeable, especially toward the end of the year I took nursing. I was under a lot of pressure – the classes were difficult and I was never good at math and memorization. One day I noticed that the muscles in my shoulders were pulling my arms. I couldn’t lay my hands on the table. Strange!
I never talked to anyone about it because I thought I trembled because I was nervous.
Wayne and I met that year, 1953, and were married in June of 1954. He was very sympathetic. I had to drop out of nursing school because they wouldn’t allow anyone to be married.
All of the early years of our marriage from 1954 until 1977 I was embarrassed to stand in front of people because the tremor was progressively getting more noticeable. I tried to stop it by attempting to hold it still and stiffening the neck muscles.
Several choir directors tried to get me to sing. I said that I couldn’t do it. Most never understood. One, seeing the tremor, understood.
Be careful what you say to people. Be sensitive to their feelings. One friend, when trying to get me to sing, said, “The devil doesn’t want you to sing,” implying that I was serving the devil.
I had one doctor in California tell me to “Grow up.” Another told me to “Straighten up.” A dentist wouldn’t fill my teeth because I couldn’t hold my head still. He sent me to a surgeon to have them pulled, with a note saying that I was very hypertensive.
Somehow I was still able to work in several hospitals in several states. Physical labor seemed to help, and Wayne was in school. He started college after leaving the Air Force.
In 1977 my folks came to Terry’s graduation. Seeing the tremor, my dad told me to call my sister, Helen, and talk to her about her health. She lived in the east and didn’t write often.
Helen told me that a neurologist had diagnosed a head tremor and she was taking medicine for it. We had inherited it. I was so relieved to find out that I had a physical disease, not my nerves. It could be treated! I always thought it was my fault somehow.
In 1980, with my tremor under control, I began to have severe pain in the back of my neck. The neurologist told me that my spine was deteriorating and would get worse. I was angry. Why? I believe now that I had damaged the muscles and nerves trying to hold my head still.
I took 12 hours of relaxation techniques at Boone County Hospital. The helped some. The specialist told me I had a muscle disease – Spasmodic Torticollis. I still use the relaxation tapes when I’m in pain, as I can’t sleep.
I told my dad what the neurologist had predicted and he said, “That’s not good enough!” We were visiting my folks and I had spent the week lying on the floor in agony. He paid for me to see a neurologist at the Mayo Clinic. My sister went there, too. Dr. Duane put us through many tests and changed our medicine. I went back there two more times. In 1983 Dr. Duane ordered a new device called a TENS unit (Transcutaneous Electrical Nerve Stimulator). I still wear it. It got me off the floor and into bed! I had periods of time when I felt better and usually overdid on housework, trying to get caught up. The Spasmodic Torticollis runs in cycles – good and bad.
Wayne was teaching and coaching for 15 years, from 1978 to 1993. He took time off from school for doctors appointments. When he had out of town tournaments or games, when I was in a bad cycle, I would crawl out of bed and eat a peanut butter sandwich. He had a lot of coach duties, so you could say I survived on peanut butter sandwiches! Coaches’ wives don’t see much of them.
Sharon was still home until 1983 (fall). Sharon and her friends spent a lot of time at our house. They were used to seeing me lying on the floor in the living room, singing away. I do love to sing, and I felt so much stronger and happier in my mind and spirit.
The fall of 1985, I spent three hours volunteering in the Sacred Heart School library (where Wayne was teaching). I sat at the librarian’s desk. By the time I got home I was back in bed with muscle spasms. I knew then that I couldn’t work at all.
In a letter that I wrote to Sharon when she was in her third year of college, I said, “When I’m in pain, I’m just quite worthless. It hurts to read a hardback book, though I can read a small paperback. It also hurts to write. You just have to try and understand, Sharon. I’m sorry I’m the only mother who hasn’t written.”
That winter I was in bed for five months. At times I was in so much pain for so long that I was deeply discouraged. I got no sympathy or help from the neurologist. He didn’t react at all and wouldn’t give me anything for the pain or muscle spasms.
I quit and went to a doctor in Columbia. he was very much into research and wouldn’t prescribe anything except Ibuprofen. He would just talk to me a couple of minutes and dismiss me. I think he could study the movement disorders better if he let you get worse. Mercifully, he quit practicing and went into research entirely. An internest at the university was willing to prescribe pain pills and muscle relaxants after he got to know me. He also quit to go into research.
I went with Wayne to the rheumatologist, Dr. Reddy. I asked her if there was anything she could do to help me. She prescribed the collar I wear. It does help, mostly because it keeps my neck warm. She dismissed Wayne to have knee surgery. He didn’t because he had to work. We gave up on Columbia.
I tried nerve blocks at St. Luke’s hospital with no difference. I wrote my mother and father in April 1986 after five months in bed (naturally I kept it positive – I tried never to complain to them): “I felt like I made it through the winter pretty well. I have several things I can do in bed, like practicing voice (at least an hour a day), watching TV (got to watch the Space Shuttle hearings on CNN), debates in the House and Senate, I got to watch the Olympics and most of the Iran-Contra hearings. I watched the old singing cowboy westerns and got hooked on three or four mystery series. I read magazines and a paperback New Testament.”
Wayne later bought me the whole Bible on cassette tapes, which I am still using. Music helped more than anything. Songs about heaven, faith and joy. Prayer helped very much. When I was too sick to pray I called dear friends and asked them to pray.
Several times, both in Sedalia and Warrensburg, friends from the church brought in food and cleaned house, especially when Wayne was sick, too.
In one church they kept the temperature on 60-66 winter and summer. I always sat in a chair at the back, but often had to lean against a sharp corner and ended up on the floor in the foyer in bad shape because of the cold. I felt better in my mind every time I went to church. Sometimes I was well enough to play in the small church orchestra that we had, and sing in the choir.
After we moved to Warrensburg, a new doctor told me I was a drug addict because I asked for something for pain. Wayne raised right out of his chair and she quieted down. I showed her how my muscles were spasming and one shoulder was higher. She said, “Well, you couldn’t fake that!” She sent me to the pain clinic at the hospital. Doctors there gave me trigger point injections several times. I spent a couple of weeks in occupational therapy. The room was cold and after they saw the spasms getting much worse while they were massaging me, they gave up. Then I had six weeks of physical therapy – massage, lifting weights, etc. They gave up when I told them I had to spend the day in bed to do the exercises.
My doctor in Warrensburg referred me to a good neurologist who understands pain. I praise God for him! He prescribes muscle relaxants and pain pills when I ask, and I take them very carefully, especially the pain medication. Maybe two or three a month, I need them now. I’ve been in a good cycle for five months.
Dr. Cooper sent me to a neurologist who gives Botulinum Toxin shots to deaden the muscles that spasm. They have been used for several years and are very effective.
I was sick when we came here because my family doctor had me taking medicine that didn’t go with the shots. He felt badly about it.
How did I make it?
Without faith in God, I don’t know that I would have dragged myself out of bed to eat. At one time, Wayne though I might die.
I always knew God was there. Wayne and the children have given me all their support and encouragement. Wayne has made countless trips and spent a lot of money on medical bills and medicine. God gave me a loving husband who has always been there for me. The children are very understanding and sympathetic.
My tremor is very controlled. Dr. Duane at the Mayo Clinic told me that he was “pleased as punch” with the tremor part of it. My sister still has a very noticeable tremor. Why am I doing better? I don’t know, but I thank God.
I can find a purpose in the Bible. James 1:2 says, “Consider it all joy when you meet various trials. For you know that the testing of your faith produces steadfastness.”
I grew closer to God. He can use any situation for His glory.
One day at a time
And the day is His day
He hath measured its hours
Though it haste or delay
His grace is sufficient
We walk not alone
As the day, so the strength
That He giveth His own
(Annie Johnson Flint)