My brain and my nervous system had a disagreement and my nervous system decided to go on strike. As the disagreement has prolonged, I began to see its outcome and was diagnosed with ALS about a year later. Now the chance of peace between the two adversaries is forever lost and any cure for me is out of the question.
In less than a year or so, I have lost the sensations and use of my hands, legs, and the ability to chew and swallow and talk and have become totally paralyzed. It was a very hard blow as I am losing blood; I feel my ship is sinking. My values and outlook of life have changed. Most of my friends and relatives have become estranged from me. I only have my husband Sinan and my loving sister Zerrin now.
It has been three and a half years since my symptoms began. As I look at myself in the mirror, I see my skin stuck to my bones, my shoulders hang like entangled flesh over my skeleton. There are no muscles left in my legs. My feet are deformed and bent out of shape, like the whirly-gigs stuck on a piece of a stick. My tongue is like a piece of over-boiled meat, limp and stuck in my throat. My teeth have lost the ability to chew. My voice has left me. And my neck has given up lifting my head.
If I could express my thoughts and how I feel in my words today, it is because of my husband Sinan’s extraordinary efforts of arranging and facilitating a computer that I can use with the help of my eyes. With all my feelings of personal rebellion and screams, my sorrows and my acceptance, my tiredness from my battles within, I am forever grateful to my God that he should be kind and compassionate to my husband in his life for all he has done for me. Please God, make his life your Paradise.
As I look out of my window, while I pray, I see how the trees look grey and dark, dry and dead. In a few days the spring will come, the ground will wake up from its winter sleep, and with all its generosity shall give life to all around us. The leaves will appear, spring blossoms will cover nature. And as for me, it has been a long time since my body has gone to winter’s sleep. I feel like a tree that has lost its protective bark. I feel cold. Please God, why have you forsaken me from your warm spring birth.
As I look into my conscience, I try to go back in time as much as I can. I have found many boxes of dusty memories waiting to be thrown out. One of these boxes have a memory of my childhood around the ages of four or five. We were in Igdir, in Turkey. During the summer months, there was this continuous hard work of picking fruit in the orchards. My sister Zerrin and I were helping Dad, and he gave us our allowances for our help. At the end of one of these summers, I saved five liras. I didn’t have any socks for the winter and for that reason, I gave my savings to my Mom for her safe keeping for a pair of new socks. I had asked her every day, numerous times when we were going to get pair of winter socks for me. I think, because of my repeated requests, she was fed up and told me one day out of her frustration that we should give the money to my Dad and have him get me a pair when he goes to market. As usual, Dad went to the market as he did every day. We waited for him all day, but there was no sign of him. Finally, late afternoon, as we were sitting by the Mulberry tree and having tea, Dad showed up from his trip to the market. He used to call me his “sweet daughter”, he said “My sweet daughter, I have bought the pair of socks you wanted” and he gave them to my Mom. With all the excitement, I took the socks and decided to put them on. To my amazement: as I slide one on, I realized that my big toe stuck through a hole. At that moment I realized that he had bought the cheapest pair for me and spent the rest of the money on himself. I was so upset that I cried, asking them to get me scissors so I could cut the socks he brought. I realized then and there that I had lost the money I have saved and the socks were of no use to me either. That was a moment in my life that I came to realize how powerful an enemy the money could be.