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since 12-09-2009
[back] Susie Becky Thomas - 1st August 2006

I sadly put the receiver back and stared out the window paying little attention to the incessant rain falling down hard on the cold cemented driveway. The conversation didn't go exactly like how I expected. I was hoping to hear of improvement regarding Mummy's health. I realized that I had closed my eyes to the progressive deterioration of her situation.

My mother, Susie Chandy was diagnosed with Parkinson's Disease fifteen years ago. She was sure she could cope with tackling the disease. We were sure too. My three sisters and I knew that if Mummy was willing to try to understand and cope so were we. We often joked about what PD was doing to her and she would have been the one who initiated the funny stories. But none of us were prepared for the present. Today my mother cannot do many things, talking and walking being the more significant challenges she has had to deal with and yet her determination and grit is far more intense than any healthy person I know.

Ever since I can remember my mother has been a huge influence in my life. I would have to blame her for the person I am today. She instilled in me the need to be respectful, polite and courteous. I can still picture her irritated face when I forgot to greet visitors who came home or when I unthinkingly took three extra helpings of the scrumptious chicken when we went out for lunch with friends. She was a dictator when it came to keeping the house neat and tidy. She would take it upon herself to clean up even when she visited friends and relatives. My mother also had this fetish for redecorating that drove us all up the wall. I can remember my father cursing under his breath when he would trip over a side table that seemed to have suddenly appeared out of nowhere. And yet my mother was loving and tender to any child that crossed her path. A teacher by profession, she spent forty-five years teaching in high schools. She had a rapport with children that I envied especially since I took to teaching myself. I longed for the same kind of relationship she had enjoyed with her students.

My mother was never alone being the gregarious person she was and yet when my father passed away I could sense a trace of loneliness. I wish my father was around now as Mummy is going through the tortures of PD. He could have been her tender support. I know she lacks companionship. Of course she has us, her daughters, but it has been a while since she has felt the touch or seen that special smile that married couples share. Isn't it so important to grow old with the person you love?

Today in the contorted body that she is trapped in, she finds very few chances to do the things she once cherished. But being the gritty woman she is, my mother has found ways to keep her mind occupied. If you visit her in the mornings, you will find her desperately trying to get the paintbrush to touch the paper that she has in front of her. We have already collected a few of her astoundingly beautiful artwork pieces and are planning to organize an art exhibition.  Folks around are bewildered as to why she pushes herself so much but then that is her nature. PD has crippled her and made her lose her voice but mummy has found different ways to communicate- one blink is 'yes' and two blinks is 'no'. Of course with PD patients, as I discovered, on certain 'bad' days, blinking may not work either. Then comes the interesting part where you have to be creative and innovate new ways to get quick answers. On one occasion, after almost an hour of using different means of communicating, I finally understood that my mother felt like dressing up for the day. She wanted me to drape her in a particular blue silk sari that had been tucked away in her wardrobe. There we were, the maid and I, wondering how to get Mummy to stand up and stay standing so I could wrap those six yards of fabric around her frail thin body. When I finally finished dressing her up, she looked ethereal and I was exhausted. But the happiness on my mother's face was worth the effort of that tedious task.

PD hasn't affected Mummy alone, all of us who are connected to my mother have had to learn to deal with it in some form or the other. My daughter who adores her grandmother is now forced to come to terms that 'Amachi' (translated as grandma) is slowly but surely going to leave us all. My youngest sister, the baby in the family, suddenly finds herself all alone without a confidant and a friend. I see her peeping into Mummy's room every night when she returns from work to whisper, " Goodnight Ma". My uncle cannot bring himself to visit because the thought of seeing the face of his beautiful sister twisted in pain and agony is unbearable. This doesn't deter my mother from going places and visiting people. Last December I accompanied Mummy on a holiday to Australia despite worries and concerns from the family-what would she do there? What if something happened to her? I quelled all those fears that others raised by merely pointing out what Mummy once said a few years ago, "Anything could happen at any time anywhere."

We all tried in the earlier days to believe that PD would not rule our lives but today I am faced with decisions hard to make about what to do with my life because this dreaded disease has become such an unwelcome visitor. I want to spend every waking moment with her, dining with her, reading to her, watching movies with her and all those other mundane things that you would never really want to do with your mother once you have your own life.

The pained smile across my mother's face the last time I visited her is etched in my mind and every time I speak long distance to the doctor or my sisters, tears would well up and I would hold back the urge to take the next flight home. I was informed over the phone that it is now difficult for Mummy to keep her head in position. She has difficulty keeping her eyes open even when she isn't asleep and has to be constantly told to open her eyes. Her fingers are stiff and have curled up, she can hardly use them anymore and her lower jaw has been slowly moving inwards making it almost impossible for her to chew. The final straw came a month before I was to take my annual vacation. I was looking forward to heading home and being with Mummy. I routinely call my sisters to get updates and during one of those calls, I had to brace myself for what they had to say. My mother had entered the next phase of PD that now meant swallowing and soon breathing would become difficult. She has to be fed nasally and a lot of care has to be taken to protect her lungs from getting flooded with fluid.

Even with tubes coming out of her nose, it is not the end of a tunnel for my mother. She is still the strong willed person who continues teaching me lessons in life that I will never forget. She still has a mind of her own. She is still a proud, gutsy and brave woman. The minute I arrived home from the airport, I asked her how she was and she replied, "I am doing just fine!" Michael J Fox, the famous actor who was also diagnosed with Parkinson's Disease once said - One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered. My mother is far from giving up.