the 11th chromosomePosted by Lamaro Schoenleber Thu, June 25, 2015 22:16:51
In previous times, people readily accepted that life is not perfect. Belief in a Supreme Deity was also more prevalent, making it clear that even the human being was not perfect. As such, people were content to make the best of their lives and be happy with that.
In many parts of the world, belief in a Supreme Deity has ebbed, and many people are convinced that the human being has reached the highest level of development ever. With it comes the pressure to live the 100% life: -100% achievement, 100% enjoyment, 100% possibility.
This may even be possible for some people for a while, until the effects of disease, aging and other adverse factors set in.
However, for a large number of people, the 100% life was out of reach in the first place, and remains so. This could be due to poverty, lack of education, or disease.
For those born with a chronic disease such as sickle cell anemia or who may develop a chronic disease in the course of their lives - such as depression or multiple sclerosis - the 100% life is a dream that is out of reach.
Instead of spending time mourning a quality or possibility of life that can never be, it makes far more sense to grab your 50% and run with it.
Enjoy your 50%. Love it. Live it. Invest in it. Make the most of it.
It is all you have, or may ever have, for now.
This is a lesson many people have to learn in old age anyway. Even if one has had the perfect life, old age and disease will reduce this percentage with time.
One will not be able to eat everything one wants because of acquired food allergies, ulcers, diabetes or gout. One cannot go everywhere one wants because of joint and skeletal problems. Many who suffer from old age poverty must downsize their lives due to financial constriants.
In short, the 100% life is largely an illusion, and even when it does exist, it is very fragile.
All the more reason why a chronically ill person does well to learn quickly what every human has to learn one day anyway: use what you have, start where you are and do the best you can with what you have. After all, you are in a majority club.
Fifty percent, or even less, used to the full, can still yield great dividends.
the 11th chromosomePosted by Lamaro Schoenleber Thu, June 25, 2015 21:02:02
One of the things I started to think about as I started to reflect more on sickle cell anemia and how to live with it, is how we measure success.
In a world where we all live by different value systems, everyone measures success in different ways - money, possessions, career success, family happiness, or fame and fortune.
For a sickler, life's greatest success is life itself.
The greatest measure of success for a sickler is one's own life - the fact that one is still alive.
Sickle cell anemia is a disease that kills its sufferers very young: before the age of five, between the ages of 9 and 10, in the mid-teenage years, between the ages of 18 and 19, at around the age of 22-23 and at the age of 25-26.
Whoever survives this first quarter of a century might usually live decidely longer. But sicklers in their middle-age are still are minority.
So, when I wake up in the morning, I am first of all glad and grateful that I am still alive, before I count my money (or my debts), or my achievements (or lack thereof), or my blessings.
And should I get forget to be thankful, as I often do, there are enough people to remind me. (Recently, my sister's friend remarked to her, somewhat astonished:"Your sister, she is still alive, isn't she ???!!!)
Which, in my considered opinion, is not a bad thing. Maybe what we should all always remember - first and foremost - is that being alive at all, is the greatest success of all.
And since we could not do it without divine help, we should be thankful. And a life well-lived is long enough.
the 11th chromosomePosted by Lamaro Schoenleber Thu, June 25, 2015 00:12:42
I felt unusually bereft and deeply saddened by this death. It brought home to me the full tragedy of the millions of sickle-cell sufferers who quietly lost their fights everyday - some despite having invested a lot of effort, emotion and education into living a normal life.
I myself had reached an age with my sickle cell anemia, where every doctor or specialist I went to told me, 'You are mid-way through your fourth decade - what more do you expect?'
Implying that there was no more that science could do for me - I had reached and surpassed the prescribed life expectancy of a sickler. I was living in extra time.
It had never really bothered me what the doctors had said, but when I started reading more about what other people had to say about sickle cell anemia and life with sickle cell anemia, and noticed that in most online forums, there were maybe two or three participants as old as I was or older, that got me thinking.
That and the death of the unknown girl.
And one of the things that got me thinking was that there are a lot of positive things to say about sickle cell anemia and living with it, not just negative ones.
Everyone could learn something from every adult sickler who is still alive.
the 11th chromosomePosted by Lamaro Schoenleber Wed, June 24, 2015 23:59:46
Valerie's death shook me to the depths of my being. I had known her since she was a little girl - a frail, little person who was constantly ill and mostly sat quiet and exhausted in a corner. Nobody expected her to live.
Valerie had the sweet, innocent smile of someone who was expected to die very young, and a sweet, innocent character. Valerie survived all the usual sickler traps in teenage, and lived to finish high school. She grew into a beautiful young lady, with a soft, pale skin and delightful form, despite her pronounced limp. She had just begun a course, before her sudden, no-longer-expected death. We had just got used to the idea that she would live; then she died unexpectedly.
Valerie's death hung around me like a pall for days. I felt lamed and shaken inside. But it did not move me to start speaking and writing for and about sicklers.
It was the death of an unknown young girl which finally jolted me out of my lethargy.
I was looking for information on the worldwide web, when, by chance, I came across a memorial page about her. She had just recently updated her webpage, with a lovely photo of herself in a high-quality, well-made blue silk dress, which waved gently high across her slim legs as she enjoyed the view from a ferry.
She had been a well-educated girl, with a good job and a creative outlet. She had seen something of the world, which accounted for her excellent taste and grooming. And just as it looked like she had left the dangerous times behind her - the dangerous ages which most sicklers do not outlive - just when it looked like she would now live to die of old age, she had had a severe crisis and died.
the 11th chromosomePosted by Lamaro Schoenleber Wed, June 24, 2015 22:39:39
I have never been a full-time sickler. I never really wanted to write about or talk about or think about sickle cell anemia. I wanted to think and talk aboout everything else, except that I was a sickle cell sufferer.
And that did not change for a long time. Not even when ten-year-old Alina died - suddenly - in hospital.
I knew her family well, and I had known Alina since she was a little girl. Alina's parents were not poor. They were a middle-class Ugandan family, with both parents holding good, permanent jobs. So I had assumed that Alina would live to adulthood, because her parents had the means and the will to take the best care of her.
They could afford to buy her protein-rich food, and medicine, and make sure she had her own room (sicklers need plenty of fresh air) and employ a house helper so that she would be spared every exertion. They could take her to private health care, and the best schools.
Since her birth, Alina's older sister had always said, (when her mother was out of earshot) "Sicklers die sometime, anyway."
Alina was the youngest of three children. She and her brother had the bright, almond-shaped eyes of their mother, as well as her pleasing, nimble form. Her sister, the oldest, had inherited the nondescript looks of their kindly, pleasant-tempered, ageing father, and hair that would not grow. Her mother's relief at having a daughter who looked like herself, was compounded by the natural involved care needed to sustain a young sickler - the youngest child at that. No wonder her sister felt banned into unimportance.
Alina's death shocked and hurt me, but it did not move me to activism.
It was not unusual that one heard of sicklers who had lost the fight against the disease.