Journey of a Caregiver and Her Mom

  Starting From Scratch

  Nancy's Niche

  Mary

  Anna

  Darlane

  Scott

  Anonymous

  Tsunami and Sucker Punch

  Nick

  Paul

  My Precious Thorn

  Kathy's Journey

  Stroke of Clarity

My Precious Thorn

Janice’s story, interview by Barb Schneider

I am 68 years old, and possibly one of the oldest living persons with spina bifida. Spina bifida means that my spine is divided into two parts, but there is nothing to bind the two parts together. The muscles and nerves which should have been in my spine lay useless in a sack outside of my spine when I was born. There was a hole in my back where my spine divided which was closed with skin grafts. Nothing else could be done. My left side from the waist down is paralyzed. With the aid of crutches and a brace on my right leg, I was able to walk starting at age six until age 50. Since then I have lived in a wheelchair and have had caregivers 24/7.

My family owned a prosperous real estate company in our community. My parents were Christians, and we grew up going to church. My siblings and I joined the family business, but all I could do was clerical work, which I hated. Everybody was so impressed with my family, but never with me. I felt envious of them; I wanted to be recognized, for people to see that I was a person, too. I was angry at God for not allowing me to be whole like they were.

The more successful my siblings became, the more distant I felt from them. I was very close to my mother until she died 23 years ago. After that, I felt all alone. My siblings spent winters out of state and rarely called. Several years after my mother’s death, I could no longer work. My caregivers became abusive, and I spiraled into a 10-year depression when Satan had his way with me. I felt I deserved the abusive, hurtful comments my caregivers gave. They also asked to borrow thousands of dollars for different needs. My mother often loaned people money, so I gave it to them. But they wouldn’t pay me back, and I became afraid to say no to them. I hated myself and resented God for giving me spina bifida. My life was useless and thoughts of suicide filled my days. I was so convinced that nobody cared about me that I didn’t tell anybody what was happening.

I had continued attending the church where I was raised, but I didn’t feel the presence of God there. There was continual backbiting and distrust. The pastor said there would be no secrets, everything would be done in the open. When someone circulated a paper about the pastor and deacons not living up to our church constitution, I wondered, What’s next? There were many rumors, and people continued to leave the church, disillusioned. Eventually the congregation disbanded and sold the building to another church. I felt really alone then.

My friend, Caroline, told me about St. Michael’s. She loved it and had decided to make it her new church home. The next Sunday I went to the service at St. Michael’s. When I entered the sanctuary I could feel the presence of God. From his sermon, I could tell that Pastor Dodge is truly a man of God. I spoke with him after the service and asked if I would be accepted there with my disability. You see, some people look at disability as ugly, contagious; they don’t want to see reality, wanting only a beautiful picture of life. He said yes, I would be very welcome. Over the next several weeks I was so impressed with the warmth of the congregation that I joined a new members’ class. Nine weeks later I was welcomed as an official member of St. Michael’s Lutheran Church. I am so proud of that!

Pastor Dodge’s sermons were on the healing power of prayer; I listened with every fiber of my being. This is what he suggested: CONFESS everything to God: anger, jealousy, etc; CONFIDE in someone what you have confessed to God, and pray for Him to heal you; CELEBRATE, knowing that you have prayed the prayer and asked for deep healing, that God is faithful to do it.

I came to God boldly and confessed everything. I also told Him: I’m open to whatever you have in store for me … wherever you lead I will follow. Whatever is for my best interest, will lead me to becoming a Christ-centered person, I will follow you. I wanted Him to help me reach my highest potential that He designed just for me. I made this confession to Pastor Dodge; he prayed with me and anointed me with oil. As I prayed the prayer I could feel God putting His arms around me, that warm feeling when someone hugs you. I knew God would heal me emotionally. God then spoke to me: the two caregivers had to go because of their abusiveness. He also wanted me to tell people my life story. I looked up the suggested scriptures printed in the bulletin, as well as others I knew. The apostle Paul said he had a thorn in his flesh (a problem) that God would not take away. I suddenly saw that having spina bifida was my ‘thorn’, and that His grace would be sufficient for me, just as it was for Paul (2 Corinthians 12:7–9).

A close family friend happened to call me later that day, and I told him everything. He called my brother, Roger, who then called me. I told him I was in an abusive situation and was ashamed to need his help. I had to tell him that I had loaned the caregivers a large amount of money, fearing that he would scream at me. He didn’t; instead he told me how much he loved me. He also made sure that my caregivers were dismissed, and two new, very kind women were hired. I knew that God was looking out for my best interests and was protecting me.

I can accept my disability as a blessing, my preparation for the future. God has a special love for disabled people. His eye is on the sparrow, and I know he’s watching us. I have a warm feeling of security; I am unafraid. I can do anything with God’s help. Many people are afraid to “come boldly” to God because they think they’re not good enough. But that’s why Christ came, because we are precious to Him. This is my point: come boldly, confess; hang on, it’s going to be quite a ride! Take His hand and trust Him. Proverbs 3:5–6 says: “Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He will direct your path.” Even though life is hard, we have the hills and the valleys; remember that when you can’t bear it, God can. Wait for Him to answer; He will—in His way, in His time, as He has for me. I’m so excited and looking forward to wherever He’s going to take me.