Quality of life

A friend said to me yesterday, ‘You are alive’ when I responded to her query of how I was with the words ‘so-so’. But is just being alive all or do we need something else. We talk about quality of life when people are seriously ill and also when people are very poor. So what do we mean by quality of life?

I have a roof over my head and enough money, if I am careful, to eat, buy clothes and other things. But I am in constant pain and not very mobile so I am reliant on others to take me out to shop or go places. This is fine and I am grateful for these friends who help but there are things missing in my life that would make it more enjoyable. So for me, my quality of life is not what it used to be.

What do you feel is important to your quality of life? Is it or should it be enough to just be alive? Or do we need more? Do we need material things to make our life better? Or is it the friendship and companionship of others that do this? I would love to hear you views on this as I feel it could make a very interesting discussion.


1 thought on “Quality of life

  1. There was a time when I was young that I understand must have been excruciatingly painful. My mother miscarried my twin at the end of the first trimester in the doctors office. He put her in hospital to clean her uterus only to find she was still pregnant with the twin. All the specialists called in told her that I would not be born and if I was then I would be very damaged. But she would not let them take away a chance for her to give birth. The night I was born my mother was in a near fatal car crash as she passed out behind the wheel and rammed into a truck hauling huge steel building bolsters that pinned her neck to the car seat. And, so it was time to be born, early but alive. I cried and I cried and only my grandmother could comfort me. So, thinking I was spoiled by her constant rocking and homemade formula my parents took me far away to another state. And, I cried and I cried and then my grandparents came and I was okay again. I would only eat 3 foods and I was so white that the doctor first thought I might be albino. As my blue eyes opened they knew I was not albino. Being more than half Native American Indian one great grandmother on each side full blood Cherokee I did not look as expected. I never crawled, had no sign of hair until age 2 and did not get my first tooth come through until age 2. At 10 months the doctors removed an adrenal gland with a grapefruit size tumor from my left kidney. Cause determined as rocking by mother whose hips bumped that area which every rock of the chair. But Granny was a short, chubby, soft little Irish woman and so comfortable that when she rocked me I did not cry. Then it was time to go to school and I had no vaccines, so I got them all at once and then reacted. In hospital my parents were told I would be gone within 3 days, just like my mothers sister in infancy, kidney failure. But, I did not die. I hovered and watched as they drew blood and more blood. I always got exceptional grades but never talked unless required. I was evaluated and said to be academically gifted and socially inept. What does that mean. I wanted to know, so I studied and learned all the medical languages. My father became a doctor and I read all the books in the medical library and spent hours copying the text. If I copied it I could remember it ‘ver batim’. Now, they call it Aspergers. That’s about as helpful as saying someone wears glasses. Like most infants who go through trauma the nervous system develops much stronger and larger nerves so many things cause sensory overload. The immune system of the autistic spectrum person is at war with the reproductive system. Until menopause. Then the fight really begins. I was bedridden for 7 years, in so much pain I screamed for hours and the doctors, one after the other in country after country could not find the answer. Then in the Middle East the dermatologist and gastroenterologist found the cause of the unending pain that felt like my skin was being peeled away by a knife over every inch of my body, every minute of every day. A very rare condition, not contagious, called subcorneal pusticular dermatitis. The treatment costs 10 cents a tablet but it is not worth producing, no profit margin. So, it is only available in India, Pakistan and Cambodia. Where it is used to treat acne and leprosy. I came here 2 years ago and took the medicine, the skin cleared, my bald head grew hair. My skin looks like I have been clawed by a jaguar over every inch but I don’t care because I am alive. My beautiful husband stayed with me not knowing if he would ever have a wife again. I am an Educational psychologist, well published, author of two books on autism and when I was ill and undiagnosed I prayed for death. My GP, generally useless, was asked for a sick leave note based on my two week hospital stay and investigation of cause of anemia – which they did not find. She said she could not write the sick note unless she checked my blood, the blood was drawn and a couple hours later she called to say I had to go to the hospital right then to have a transfusion and I said no. She said if I did not go I would die, my blood count was 7. I told her I am an Indian, it is a good day to die. She sent an ambulance and I ha to go for transfusion of be placed on the psych ward and still get the transfusion. So, I went. But, she did not look for the cause of the anemia, they had already looked and could not find a cause. So, I am grateful that my husband took me from country to country until we found a doctor who wanted to know and it took him a year to find the cause, So, today as the rains poured and the school flooded and I was on lunchtime supervision with wet children wading water to their knees we were singing It’s raining, it’s pouring the old man is snoring and Rain Rain Go Away and I only want to see you dancing in the purple rain as parents came to pick up their sweet little children. And, my Dad is retired now. He’s 80. He has adopted 75 boys, all said to be incorrigible juveniles, many brought by their parole officers. The last one is just turning 18. Most are rich now, only one is in institution. One has been an attaché diplomat to Lebanon for a year and to Yemen for a year. One has made the Forbes 500 list before he retired. At times all of them wished they were dead.
    I learned a lot about what is important and I believe that it is that we are all one and as long as one is in pain, we are all in pain. So, my prayers and love are sent for you tonight. I hope to meet you in my dreams and you can share my guides and healers and ask for peaceful sleep, healing and protection.
    Little wolf

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