About Me

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Thank you for visiting and welcome. I am a terminally-ill, 90-year-old mother, grandmother, and published author. I created this page at the behest of my friends and acquaintances. The purpose of this page is to share with you the many thoughts that have occurred to me during their frequent visits to my home. I've entitled my thoughts, "Vailia's Reflections". They're listed in reverse chronological order. I hope you find them to be of value. My book concerning Alzheimer's disease, Marshall's Journey, has been my most rewarding achievement to date. It practically wrote itself and demanded to be heard. As my understanding of Alzheimer's grew, I knew that I had discovered skills that would help victims and caregivers through the painful devastation of the illness. I have also been proactive in negotiating the terms of my own death. My views have been the subject of several local television newscasts. In addition, I've been quoted in articles that appeared in recent editions of the Wall Street Journal and San Diego Magazine. Please enjoy your stay.

Saturday, February 7, 2009

29 - My Drummer's March

My Drummer's March


There are times when I find that marching to a different drummer…living as I see my life…not relenting…not weakening…can be misinterpreted as to who I really am and what I am facing. Today I must acknowledge that my strength is my weakness and that those who care about me my fail to understand where my differences take me.

My condition is no longer simply a matter of being able to handle pain or physical weakness or facing approaching death without fear. I am actively determined that I remain who I am in soul, if not in body. I believe that doing so allows all the good that comes into my life. So when those who come to visit arrive my thoughts go into a place of pleasure at their being with me. I’m more concerned about them than about me. I enjoy the camaraderie and I delight in their presence. I move into a new place and stay there until they leave. I find that sitting with my oxygen is better than walking, so I sit.

Is my present condition alarming? No, but it is there and only visible to those who spend much time with me in my home. Most of the time I can only walk short distances without causing palpitations, shortness of breath and light-headedness. It seems that body movements create physical disturbances. I have chronic headaches that change in degrees of severity, jaw pain, eye impairment which may result in migraine auras, back pain caused by fractured vertebrae from the base of my skull to the coccyx bone at the end of my spine. My physical symptoms are also the result of osteoporosis, arthritis and scoliosis, but I don’t give them great concern. My brain is still there and working just fine, or so says the drums of my Drummer.

There is, however, a flaw in the way I’ve been handling everything. The flaw became apparent when the Hospice nurse informed me that I had become stable so she would no longer need to see me weekly but every other week. I didn’t object to the change but I couldn’t understand. With more pain and more recovery time after eating, all intensified and new, what she said didn’t make sense. I related her statement to my daughter and closest friend. They came up with what makes perfect sense. They asked if I had ever complained. The answer was no. They asked if I had been honest about what was happening to me. Again the answer was no. Then they asked me how anyone could know what was really going on with me if I didn’t tell them. To that I had no answer.

They were right, of course. I’ve been too proud to become a complainer. It’s not like me to burden others with my problems, not even my very special doctor and friend, Even with him I’m not completely honest. I gloss over my discomforts so I don’t appear to be an old women in his sight. I realize that I need to change my behavior. But the truth is that I don’t know if I can do that. I’m afraid of not letting things remain just as they are so that I can continue to enjoy my life, my family and my friends, just as I do now.

Wait! My Drummer is playing. I forgot to take my morning meds, but that’s only sign of old age.

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