torticollis

Some years ago I had the most beautiful, spiritual Christmas. I had been sick with Spasmodic Torticollis for more than eight months. But at that time the doctors hadn’t diagnosed it yet. All during that time I was lying in my bed unable to get up by myself. Every muscle in my body was active. I was ‘on the move’ every waking minute.

My younger daughter fed me and helped me out of bed when needed. I could feel my daughters, my mother’s, and my son’s despair and was determined to be cheerful and to not let them feel my own distress. I tried with all my heart to make it easier for them having to see me like that.

It got closer and closer to Christmas and my condition (Spasmodic Torticollis) wouldn’t get better. On Christmas Eve, when we honor our German tradition to celebrate the birth of Christ, it was clear, that I had to stay in bed and let my family celebrate Christmas without me.

My older daughter lived across the street and her whole in-law family was invited. I wanted them all to have a wonderful Christmas. All the many children in our family were so excited. I was alone across the street with my window towards my daughter’s house. I could see the joy of Christmas through her living room window.

Suddenly I heard Christmas songs right in front of my window. It was as if heaven had opened up to me and the angels were singing for me. My whole body was shaking more than ever. But it was the excitement of an unforgettable experience. My tears were running down my face and it felt so wonderful.

torticollis

My soul was consumed by the beauty of the Christmas carols and I could feel the love of our savior with my whole being. My whole family was out there in front of my window singing for me. I love tem all dearly. Words cannot express this love I feel for them.

All these months my condition had not become better and the doctors were clueless, until one day one doctor I was referred to found out that it was Spasmodic Torticollis. I was told that it was a permanent condition.

I had to go to the Neurological department of the University of Utah hospital in Salt Lake City where I got Botox injected into my neck. This I have to do every three months and I get between 12 to 15 injections into my neck every time.

Spasmodic Torticollis is a condition (I refuse to call it a disease) where the neck muscles of one side or the other causes spasms and cramps. It is accompanied by quite some pain. Botox paralyzes these muscles to the degree of being able to get the spasms and cramps under control over time.

At first my head was falling to the front or back with every little move of the car when I was taken for a drive (which I loved), or other situations. I had to learn to sit in a certain way to keep my head consciously straight and up. I still cannot move my head to either side very well. I have to move my whole body. But I have mastered it very well I think.

I feel very fortunate and blessed to have the strength and will power to be able to accomplish all these tasks, with the loving help of my family, that are beginning to become more and more natural to me now.

I decided at that time when my angel family sang to me and gave me the most remarkable loving Christmas ever, that I would not let this condition take over my life. I would learn to look as normal as  possible and get it under control. I knew I could do this.

Today I live my life from one day to the other by living in the present and trying not to miss out on anything that could help others and also me. And I can drive again. I love driving my car. I have some help with blind-spot-mirrors on both sides and a driver’s seat that I can move in all directions needed.

Life is beautiful. I am able to breathe it in with all my being every new day. I have my family around and that makes my days even more treasured. I love my friends deeply and I cherish all the sweet neighbors and friends in my church who are so valuable to me and who help me live my dream, my dream to one day be with them all throughout eternity.

I am a passionate, professional photographer and with my husband, who also loves photography,

I can now go on trips and enjoy nature and capture it with my camera. I have been published, had exhibitions in major cities around the world like Munich, London, Vienna, Paris, New York and the L.L.Bean Museum at BYU in Provo, Utah. I have also earned awards that showed me that our photography is appreciated and loved wherever it is shown.

We all need each other. We are designed to need each other. This is intended by our creator from the beginning of mankind so we can learn and live the love of Christ. If we try to do so everything else will fall in place.

What I have learned since then – the spiritual strength I have gained since then – the knowledge and understanding of life itself and its eternal meaning I have experienced since then – it’s all invaluable. I wouldn’t want to miss it for nothing.

I know my condition of Spasmodic Torticollis had to happen to make me what I am today.

I am grateful for this experience in my life. It has made me aware of all the little things that are so important to see and act upon but which are so easy to overlook – these little things that make life beautiful and joyful – these things that shows us the real meaning of life.

It is quite simple really. It all comes down to love. The love we have for each other; be it in our families, among friends, and all those that are part of our lives one way or another and have an impact on us. Love is the most important part in life to learn. All the little hick-ups that can grow into big ones, if we are not aware of it, are not worth spending any energy on.

Through living this way of life and understanding the true meaning of it all, we can live more peaceful and have more joy in everyday things we have and want to do. Life is a gift from heaven above to learn the wonderful love Christ has for us. It will show in the way we look. Believe me when I say: it will make you beautiful because love is beautiful.

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