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Living with ALS |
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by Barbara Holland |
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I was born into a rather interesting family. My father was an artist and my mother was a gifted singer. My brother and I grew up to Beethoven, Mozart, Chopin and an entire range of beautiful classics – from music to literature. When I was only 13, however, an ominous shadow blanketed my life – the size of which I only now can begin to comprehend. At that young and sensitive age I first became acquainted with what has proven to be my life-long enemy – Lou Gehrig’s disease. My father, whom I adored with all my heart, began to lose strength in his legs. He went from a cane to crutches, to a wheelchair and then to bed. It was during the time that Eddie Fischer brought out the song “Oh my Papa, to me he was so wonderful, I miss him more each day.” To the backdrop of that song, I watched Daddy slip away day by day. Finally, one day in the hospital, I watched my father make his transition. My heart was broken but being so very young and having a barrage of activities before me, I was able to proceed with my life. I married very young and had four children right away. They were the joy of my life and I treasured each one of them! Later in life I also had two more children, making a total of six. It was after I gave birth to my last child that my brother wrote me of some disturbing symptoms. Now my brother and I were extremely close and it soon became obvious that my brother was also demonstrating the same illness that had claimed our father’s life. I remember going to a prayer camp that was near our house. I stayed in a little cottage, fasting and begging God to spare my brother. I decided to walk through the wooded area and as I was walking a huge cloud of butterflies – hundred of them flew toward me and landed on me and all around me. I could hear in my heart “I am the resurrection of the life” and somehow I know that I didn’t have to fear letting my brother go because he would go into the arms of Jesus. It was at that very time that my brother passed away – God had truly prepared me for my brother’s death! Years went by and my children grew up. They went from Mickey Mouse to Barbie to dating and some of them to marriage. My husband and I became missionaries to Mexico and two of our married children also went on the mission field: our daughter, Robin, to the Philippines and our son, Rick, to Guatemala. After a few years on the field in Vera Cruz, Mexico, my husband and I received some terrible news. Our daughter, Robin, had been diagnosed with ALS and was also pregnant with twins. Also our son, Rick, had been diagnosed with ALS and they both asked us to come and be with them during this hard battle. My mind was reeling with unbelief – how could this be possible? We hurriedly closed our house up and turned the little mission church over to the nationals. Then we came north, first to see Robin and then to see Rick. Rick was trying some kind of alternate diet, desperately trying to buy more time. Robin delivered her twin boys, James and Jonathan, a month early. The both weighed five pounds, even though she was having a terrible time eating and breathing. The twins were beautiful babies and were born without any kind of complications. At 29 years of age, she graduated into Glory a month later. Rick, then 30 years old, died three months later. It was the year 1990. His alternate diet not only didn’t help him but is seemed to hasten his death. Even though I knew they were safe in the Father’s arms, I missed them so much at times my heart physically hurts. Yet when the pain seemed unbearable, I could feel the closeness of God and I would be able to go on. Eventually, years later, life seemed to be clicking along at a normal pace once more. I was working at a Missionary Institute along with my husband when once more the specter of ALS lifted its ugly head. This time it was my oldest child, Jimmy. Jimmy fought with all his might – he bought a few years with a trach and a stomach tube – something his brother and sister had opted not to do. Five years from onset, in 1999, Jimmy went to join his siblings. Some time after Jimmy’s death, my daughter, Tracy, and I began to notice the now all too familiar symptoms. We began to both notice a definite weakness in our left foot and ankle. As time has progressed, we have both been diagnosed with ALS. I am praying, of course, for a healing, especially for Tracy since she still has young children. I am convinced that the same God who has helped me through all these years of tragedy will be with us both. My prayer is for all of my PALS here in South Texas and around the world, that God will somehow drop the cure to this disease in someone’s mind, but even more, that each PAL will be able to reach out to their “ever present help in time of need.” God Bless each one of you. If I can help anyone in some way, please let me know! |
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