Mitchie died on Saturday. He was playing in the house and after a while his mother thought that he was too quiet. She went to check and as she couldn’t find him in the house, she ran outside. Both gates were open and she found him drowned in the pool.

The Smiths were the first parents of a child with Cerebral Palsy we met after Loren was born. I personally never spoke to them after that, but in that one visit they said such a lot of valuable things that I will never forget them. They never pretended that life with Mitchell’s problems (non-verbal and although he could walk he had serious movement issues) was easy, but their love for their two boys was clear. They are devoted Christians and they managed to juggle life with a child with Cerebral Palsy very well. I know that Mitchell attended a main stream playschool at some stage. Celeste wrote a book about their experiences and it was recently launched.

A series of small miracles, was how his mother described Mitchell’s life. So many times, they rushed to the emergency room with him. He was an enterprising young man and managed to get himself into some very dangerous situations on a couple of occasions. I.e. he was pure boy. But somehow he always pulled through. Why Saturday? How did he manage to get the gates open? Why now, after fighting for his life for such a long time? (He must have been around nine years old.) My questions and maybe even some of theirs. But it isn’t something there are answers to, is it? I just know that my heart bleeds for them.

What will I tell them, if I can?

That it is like having a limb amputated. You’ll feel it, even after it is gone.

We were entering the grocery store. Marco was pushing a cart, Magnus sat on my arm. And suddenly I reached out to find Loren’s hand so that he doesn’t get lost or doesn’t run off.

We sat in front of the fire. I’d closed the door to keep the heat in and Magnus crawled to it, standing up against it. I ran forward to haul him away from the door, because any minute now Loren was going to run through the door and knock him over.

Some blankets were left on my bed after Magnus had taken a nap. And I found myself tiptoeing to not wake Loren as the jumbled blankets turned into the shape of a sleeping child.

Mitchell had blue eyes and blond hair and when I met him he had just learned the sign for AGAIN!
Mitchell will always be loved.

I’m tired and there’s dirt under my fingernails from digging in the soil. Even though it is winter the neglected garden needed weeding. Most of the boxes have been unpacked and except for a few things (like three gilt frames, some spoons and the washing pegs) everything has been accounted for. Our stuff fits into this old house like it has been built just for us. The views from the dining room and our bedrooms are spectacular. The days are warm and I got a lot done with my mother here. The children seems calm and even though Dirk works twelve-hour days and we only see him at mealtimes, he seems cheerful and upbeat.

Ever since the books have been unpacked, one in particular has been calling me: Roadmap by Jennifer Graf Groneberg. I received it a day or so before we were due to move from the city into the countryside and despite the urgency of getting everything sorted out, I started reading it. But I couldn’t finish it, of course. When I finally did finish it, I was at a loss for words. I needed to mull it over.

I remember reading something by Jennifer back when I returned to work from maternity leave with Loren. Everything was so uncertain and I felt so deeply wounded. So, when I read about her house at the end of a gravel road in Montana where she closed the gates after getting home with the twins, something stirred inside me. And then, a couple of months later I read another column written by her and I re-read it, simply because it was so musical. I immediately searched for anything written by her and spend almost a full day reading and re-reading everything I could find. I stuffed myself with the beauty of her words and I cried like I haven’t been able to for months. I think what ultimately grabbed me, aside from the beauty of her writing was that I sensed in her the kind of peace that I knew I was lacking. An acceptance of a son whom I didn’t know I needed in my life.

Peace roams only where it is invited. And maybe Jennifer’s book is telling this story more than anything.

What was my first awareness of Down syndrome? Mythical heaven’s children – perpetually smiling. A TV program with a young actor with Down syndrome. Later a childhood friend whose first child had Down syndrome. The grandparents were devastated. At that stage this seemed a normal reaction to me. But this lovely young mother was so proud of her son’s achievements and she was such an advocate for Down syndrome that I was left with a sense of delighted surprise. What her attitude brought home to me was that a child with Down syndrome will do most things other kids do eventually. He or she may just get to it at a different pace. But I didn’t see that the parent of a child with Down syndrome also evolve along the way. That sometimes, children are far better teachers than adults. And that children are each gifted in their own way. That every child brings something to this world that this world desperately needs.

Infertility made me realize that nothing is a given. If my body could fail me at something as basic as reproduction, it could also give me a child other than the norm. And then there was my realization while pregnant with Marco that I wanted nothing to do with prenatal testing. That I would welcome my child no matter what. Though imperfect as yet, all of these things paved the way for Loren. When Loren was born, there was no doubt in my mind that I would look after him forever if necessary. That he was mine and that I wanted him with me. But, I didn’t know how to forgive myself and just enjoy my child.

“We don’t know what his intellectual capacity will be” the less-than-kindly doctor said. “He may be like a little Downs kid (sic) or he may never even recognize you or say Mama.” And I thought, I can live with Down syndrome. Please, God, let him be like a child with Down syndrome.

I wanted so desperately to be sure of something. To label. To understand. The richness of the experience of being a parent was still only half known to me. Whether Loren had Down syndrome or CP or was physically and/or intellectually disabled, didn’t matter in the end. Nobody could tell me that he’d always know me and that he would love me. Despite all the things he needed to forgive me for. Nobody could tell me that love would be the main emotion I would experience.

And then Jennifer and Jodi and all the other parents with children with Down syndrome, liver disease, Cerebral Palsy, autism and a myriad other things exploded into my life and I knew that this new life of mine was doable. Loren showed me the way, when I finally allowed him to. But there to hold my hand with shared experiences were all these parents and their wonderful, miraculous, sweet, naughty, problematic, stubborn, fighting, laughing children.

And this, for me, is the basic message of Jennifer’s book. Life is to be embraced. Children are there to be loved and if you allow them to love you right back, everything will be fine.

“Ahluvyou”

I read a few passages from the book to my mother and we sat huddled together, crying softly. We cried, I think, about forgiveness and miracles and the incredible privilege of being mothers, but mostly about the sheer beauty of it all.

Not for the first time and neither for the last time, thank you Jennifer.

I owe Laura a post to list six random things about myself.
The rules are:
*Link to the person who tagged you.
*Post the rules on your blog .
*Write six random things about yourself.
*Tag six random people at the end of your post by linking to their blogs.
*Let each person know they have been tagged by leaving a comment at their blog.
*Let your tagger know when your entry is up.At first I thought I’d post pictures, but suddenly the task seems too daunting. So, a simple listing will have to do. Here goes:

1.My toenails are usually painted. I rather like dark colours like a deep red or a rust on my toes.
2.I love cats. I think they are the most elegant creatures in the world. This, of course includes the big cats like lions, cheetahs and leopards. But I prefer to admire those from a distance, thank you.
3.I don’t have a favourite colour. That changes sometimes from moment to moment. I do prefer warmer-toned versions of colours. though.
4.Feathers fascinate me. We have a framed photograph of a collage of feathers done by one of our previous neighbours, Thomas Vermeulen and it is one of my favourite things to look at. I like paisley - which is a stylized version of feathers.
5.My hands are nicely formed – with long, slim fingers. But I love digging in the soil and I have never really had long, groomed fingernails. At the moment the condition of my hands are shocking. My sister – who always have long nails and who look after her hands particularly well -usually just shakes her head in disgust when she sees the mess my hands are in. And then she gives me a manicure. I love my sister.
6.I’m a dreamer and I often procrastinate. It’s a very bad thing.

I’m not going to tag anybody else, because I’m sure by now everybody has been tagged! But if you want to respond to this, you are welcome!

This weekend we tackled the contents of the medicine cupboard. We’ve both been avoiding doing this as it is one of those places where such a lot of memories lurk. Being confronted by Master L Vercuil on label after label, finding his spare PEG - even finding the first positive pregnancy test. 5 March 2005 - a day of such joy.

I don’t do medicine well anyway. It pushes every wrong button I possess.
“Chuck it away. Just chuck it away. We don’t need it!” I gritted on a number of occasions, while Dirk was trying to see the expiry date before making a decision. The hated Phenobarbitone landed in the disposal bin. I saw it go with venom. It really had had no good effects on him. The Zantac that he had to get 0.003ml of, for heaven’s sake, was also chucked.

At least we dealt with one ghost.

The pain medication prescribed to him just before he died was a highly scheduled medicine and, even used correctly, had the ability to repress respiration. Used incorrectly, it would have been lethal. He really needed it, though. I was too afraid to check how much of it remained in the bottle, but unreasonable and unfounded fears remained at the back of my mind. I know that I personally only gave it to him on three occasions (not on the day he died), using the prescribed two drops. Anna had strict instructions to phone me if she thought there was a need to give it to him. So, most of it should have been left. Dirk and I measured it off into a measuring cup and found to our relief that the bottle would have been almost full. His death remains a mystery, but at least nobody was directly responsible. Closure to some extent. One less thing to haunt me at night and taint relationships and memories. I’m so sorry for even thinking it.

We kept some of the syringes. Everything concerned with his suctioning machine we found incredibly hard to get rid of. We’ve been approached by people to sell it, but I’ve not been able to. I’ve come to see it as an extension of Loren.

I couldn’t help thinking that Loren was pure joy. That day I had the positive pregnancy test was a prediction of the little boy that was to follow. The hard part was the compromise. Giving him things I knew to be bad for him in the long run. Doing things to him that I knew must have been unpleasant if not painful. All in an effort to keep him alive. Interventions cascading into more interventions.

I wish I had the knowledge I possessed at the end of his life right at the beginning. Stopping the first unnecessary interventions. Choosing wisely. Doing the therapies I now know would have benefited him more right from the start. Not listening to stupid advice coming from people who knew nothing and didn’t care enough anyway. Or who felt as helpless as I did. But life doesn’t work that way, does it? And dwelling on it is pointless.

Last night Marco was entertaining Magnus while Dirk and I were trying to unpack the groceries and getting supper ready.

At one point Magnus was laughing so hard that I was laughing with both of them. As I settled Marco with his supper, I said, “Thank you for being such a kind big brother. Magnus thinks you’re the best big brother in the whole world, just like Loren did.”

And Marco traced the edge of his plate with his finger absentmindedly, completely silent. Then he said quietly, “Yes, my Loren. I touched Loren’s nose like this.”

He’s so small, he will likely forget most things. And once again I’m not sure of how much I should remind him. There’s no handbook and even if there was, I now know nobody really knows the answers. But I want him to remember one thing. The one thing that could never hurt him. The one thing that should never be a compromise.

Love.

If you are the person I think you are, I want to thank you for helping somebody whom I’ve developed a great deal of respect for. If I’m not right about your identity, thanks for responding anyway.

The issue here isn’t that I deny that being a medical professional can be extremely difficult. That is why I became a librarian and not a doctor. :-)You chose medicine, knowing that you were choosing a tough field to work in. Therefore I will acknowledge your problems without feeling the need to sympathize much. No, I haven’t really worked with the general public. Also a choice I made, given my lack of patience. But I can imagine your frustrations. My hat off to you. Of course medical professionals are humans first. And I think therein lies a big part of the problem, as you would probably fully agree. Doctors are human and make human mistakes yet many people are in a disadvantaged situation intellectually dealing with doctors. This impacts on their perception of doctors and doctors’ powers. And it places so much pressure on already overworked individuals. Expectations are so high, as you rightly say. (Some doctors don’t do much to dispel the myth that doctors are always right though. Or at the very least they act extremely defensive if they are questioned. )

Look at what you are mentioning as the ideal of care:

Of course we learn and practice communication skills, wholistic health care, non-conventional medicine, patient-centered practice and a whole endless host of other things to try and do better in some of the areas you mentioned in your posting.

What you are talking about in terms of holistic and patient-based practice is not reality. It is what doctors should aspire to. I’d love to hear what you consider holistic care. I think that, whatever our respective definitions, we would agree that the time spent with the patient and getting to know the patient would impact on how well this works. Maybe where you are, in Australia, you come closer to the ideal. Certainly not here, where a GP will spend 15 minutes per patient, if that. Admittedly, some would spend more, if they feel there’s a need, but I cannot conceive of anybody who wouldn’t be unnerved by a whole waiting room full of people waiting to be seen - thus being less effective. State hospital care is even worse in terms of time. As evidenced by Anna, our childminder, going off to the state hospital once a month at 5:00 in the morning and only getting helped at 15:00 - without getting huge questions marks concerning her health adequately addressed - there is no question of holistic care..We suspect that she is diabetic. No sign of diet being addressed. Having the same first language as your patient would help. Here that is not a given as we have 11 official languages. English not being my first language, I feel at a complete disadvantage walking into a consulting room seeing somebody from a different language group. And my English isn’t bad. (English being the chosen lingua franca in South Africa. So the person I see may be Zulu-speaking and we’re both using a language different from our own.)

Look at the words you use: endeavours desire try… Striving for something does not mean this is what happens. Or even that all doctors remotely share your concerns. I hasten to add that I’m glad that you, at least, try.

I’ll admit to having an ax to grind with doctors because of their attitude towards Loren. Lunch? Mothering? Other patients? Good grief, do you think I would be this bitter, this sad if it was that? I’m talking face to face refusal and/or inability to help my child. Not being able to ever find an appointment for him with some doctors and yet easily finding one for my typical child. First thing mentioned a DNR order. How would you feel if this was your family member? Your child even?

Actually I have started looking critically at medical care and allopathic medicine long before Loren was born. 10 years ago at least. My feelings of anger and sadness about what happened is not clouding my mind about what I’ve been seeing happening for years before.

I could spend pages upon pages on debating some of the things you wrote, but I’m not going to. I’ve already written too much. If you care to continue this conversation, you are welcome to indicate that I can e-mail you and I will.

On a lighter note, I’m relieved to learn that you’re not a thief, think you’re God’s gift to humankind or operate under the influence of an inflated ego. Good for you. And yes, sorry, I was out of line with those remarks!

We’ve got to move in 23 days and I’m still waiting for a quotation from the moving company. (Edited to add: received it and it isn’t nearly as expensive as I thought! Yay!) We’ve started sorting out things. The four hot spots in the house are the study, the laundry, the store room and the medicine cupboard.

Dirk tackled the study this weekend and I tried to clear the top cupboard in the spare room. We’re both not nearly done, but at least we’ve made some headway. Our stuff falls into roughly two categories:

Things we thought were lost and have now gleefully found.
Things we weren’t really looking for and are now very sorry we found.

Into the first category fall things like Loren’s ultrasound printouts, a lucky packet version of Speed MacQueen (lost for over a year and with typical toddler singlemindedness never forgotten) and my embroidery frame. The latter consists of stacks of magazines, music tapes and unlabelled video tapes, unfinished needlework projects and baby clothes that Magnus has just outgrown. Not to mention boxes full of paperwork that we have to keep according to law.

Keeping toys under control is an ongoing battle. My father made us a cupboard of three meters long that contained the toys for a while. After that too started overflowing, I bought large plastic boxes with lids and sorted the toys into them. All art materials go into one, all Lego blocks in another, dinky cars are separated from bath toys etc. While I was on maternity leave I kept this in some order. I allowed one box at a time out of the cupboard and it had to be replaced before another one could be taken out. I’m by no means a perfectionist – not like a friend of mine who counts the pieces of her child’s pegboard before it gets stored! But this seems to work as Marco can see at a glance what is there, he learns to do one thing at a time (and will hopefully not unearth a half-knitted jersey 10 years after he started it, like his mother…)

Ever since I returned to work I’ve spent a chunk of every weekend fishing crayons from the puzzle box, returning caps to pens, digging too small Lego blocks from the baby toy box and looking for pieces of a puzzle all over the house. I gripe and get angry, but by Monday I’ve cooled down enough to completely forget about it again. Occasionally I’ll drop hints and get ignored like a stop street. I’m not proposing that they do all the cleaning up after Marco all by themselves. He’s old enough to learn to look after his things. But a four-year-old is certainly not going to do it without some adult guidance.

I realize that South Africans are very lucky in that they can afford staff. In fact, this is one of the main things many South Africans living overseas seem to miss. Here even relatively poor people have somebody come in to clean and do the washing.

We are extremely fortunate to have people like Anna and Jenny work for us. They are honest and hardworking and they really care about us. They’ve been with us through the most difficult periods of our lives and they have been nothing but supportive. But as with anybody working closely together, familiarity breeds contempt eventually. Irritations include the sugar bowl that gets emptied and is left for Dirk to refill since he’s the only one of us taking sugar in his coffee. Or the outside sitting areas that seem to have become no man’s land since they are never cleaned. Dirty nappies that are not noticed, causing sore bums. Marco being dressed in Magnus’ pants, because they were his and three years down the line they are expected to still fit him. Dirt above eye level getting ignored. Milk spilt in the microwave left for me to clean up. Small things, yes, but IRRITATING THE HELL OUT OF US.

And on their side I can only guess at the many many things that I’m sure annoys them about us. Like Marco being sassy, cleaning the same surfaces day after day, being picked up late to go to the taxi. Like doing something very kind and I’m too absorbed to notice…

Maybe we do need to go our separate ways, sad though it may be.

We’ve found work for Jenny, but are still looking for Anna. She went for an interview with the CP Association last week for a job at a special needs school as a physiotherapist’s assistant. She didn’t get the job, but I suspect that she blew the interview. For the following reasons:
1. It is only a half day job, paying less than she currently earns monthly. But working it out on an hourly rate, it actually pays far better. Plus she would have had school holidays and weekends during which she could have freelanced.
2. She is supposed to work in pants, which her husband doesn’t like. (!)
3. She would have had to start next week leaving us without a child minder for two weeks on Tuesdays only. Which was no problem as far as I’m concerned. We would have made a plan.
Even though I really wanted her to get the job, I have to accept that it is, after all, her choice where she wants to work. I just don’t want to think of her battling financially, that’s all.

In a fit of lunacy, or maybe nesting, which is actually one and the same thing, ask any husband, I painted one wall of my office at work a couple of years back. Of course I didn’t want to spend money on paint and so I took the only paint I had – which is something we used to paint display boards with. The minute I started painting, however, I fell in love with the colour. And I remained firmly in love with it ever since. It is so nice, I want to eat it.

The colour is a strange bluish gray – not my thing at all ordinarily due to the fact that I prefer warm colours. Yet I perceive it as a warm colour. And teamed with chocolate brown, it looks divine.

My work here – which is slowly coming to an end – has in part been to look after very old building plans. Old by South African standards, that is. The oldest one I’m aware of is of a school built during 1865. And my favourite, which is of a building in our city, was done during the Anglo-Boer war which started in 1899. This is an artwork in itself. Beautifully drawn on linen – almost the same colour as the paint I mentioned – and meticulously watercoloured at the back to let the colour through as you hold the drawing up against the light.

I leave you with a few photographs that I’ve taken of details of the 1899 drawing. Enjoy!

P.S. I guess I’m a little sad.

A comment over at TerriblePalsy sparked some thoughts. About the practice of medicine, healthcare providers and a discerning consumer culture. I have quite a lot to say so I’m not going to edit it as thoroughly as I usually do.

I can’t speak for other countries in the world, but reading other people’s blogs I gather that things are the same, no matter where you go.

In South Africa we ostensibly have some of the best doctors in the world. South Africa was where the first heart was transplanted, because of our problems with HIV/AIDS we have done a lot of research on this particular issue and overseas doctors have told me that they come to South Africa to practice in hospitals like our local Edendale hospital because here you’ll find the most unusual diseases and build up the most knowledge. Mmmm…

Something you may not know about me is that I’m a specialist librarian. I currently work in an architecture and engineering library. But somewhere at the beginning of my career, I worked at Edendale hospital as a medical librarian. My job was to help put together a decent medical library and help out with information queries from doctors and nurses.

The medical field was very interesting. I picked up the jargon quickly. If you have an aptitude for languages, you do, for most medical terms derive from classical languages like Latin and Greek. The research part is easy if you are a trained information specialist. No rocket science there. In fact, I suspect that even rocket science isn’t rocket science if you have an aptitude for it, remains interested in it and have been trained in it.

My problem was not the subject field, but the attitude of the professionals.

All professional people have a certain attitude. Most architects are a bit arty-farty. Engineers are factual – and probably the easiest group to work with. Quantity surveyors are anal. In the best possible way. Attorneys can be difficult (sorry Dirk and Jacqui!) Town Planners are workaholics and usually very reserved. And so on.

But doctors! I could write pages upon pages of my time at Edendale, helping out at Addington and computerizing Kind Edward VIII and Wentworth medical libraries. Let me just say that I hated working with doctors.

These doctors thought they were God’s gift to mankind. They came from South Africa and most other parts of the world. Most of them could not speak their patients’ language. And when they came to ask for research, they could barely explain themselves or pronounce the conditions or diseases they were looking for in English. That was the overseas doctors. The South African doctors were just… assholian? One guy, an elderly South African, regularly visited the library. He would take the latest copy of the British Medical Journal, sit down in the most comfy armchair and promptly go to sleep with the journal draped over his face. He was a specialist and worked office hours only – in case you thought the poor guy worked nights and had no sleep. I’m not saying that these doctors weren’t good and there for the best of reasons. I’m merely saying that I often had my doubts about their efficacy- given the great divide between them and their patients and what I know of Zulu culture. And that their bedside manner probably didn’t matter, given the fact that their patients could not understand them and that their go-betweens could barely speak English too.

All of them were shameless thieves as far as books and journals are concerned. But that was the least of my worries.

So, as far as professional attitude goes, doctors tend to be a most unattractive bunch in my opinion and I had no time or interest in either fawning over them to feed their gigantic egos or becoming a world class bitch myself. Which was probably the only way to deal with them effectively. So, I was only too glad when a permanent post was created and I could once again work amongst decent people.

Let’s talk facts though.

Allopathic medicine is only one type of medicine practiced in the world. There are a whole lot of others, often scathingly referred to as “alternative” meaning tie-die and incantations without any scientific backing. In fact, most alternatives make a whole lot more sense than allopathic.

Prove it, you ask?

Think logically.

Think about what disease is. Disease is the body’s way of saying: “Something is not right.” Of course bacteria or viruses or fungi or whatever cause disease. But given a healthy strong body these things probably will not be able to overcome the body.

Fact. Pests such as insects and weeds only attack diseased or malnourished plants.

Most of our crops are planted with the bare minimum of nutrients they need in the soil. Most farmers only give two or three nutrients at most and plant the same crops year after year, depleting the soil from the nutrients the plants need. So, pests attack the plants, farmers spray poison, consumers ingest poison (also from many other sources such as preservatives, plastics etc.) which build up in their systems and ultimately needs to get out of the system or it will kill the system. We eat refined foods and don’t drink enough pure water and so the body’s elimination mechanism does not work fully. The body responds by trying to get rid of the poison as a last resort by getting sick e.g. getting a cold at the very least (all that mucus is trying to achieve something) or even growing cancer – which could be the body’s way of trying to filter blood.

So, what does allopathic medicine do? It tries to dry up the mucus or it bombards the body with radiation or chemotherapy to destroy the cancer cells. The effect of radiation and chemo is well-known.

The cancer cells may be destroyed, but what does the body do? There are in all likelihood more chemicals and poisons in the body now. Of course, it grows back the cancer, eventually. More aggressively.

What happens with a child with the type of CP Loren had?

Firstly, his muscle tone all over his body is low. Not just his superficial muscles – which actually turn spastic to compensate for his overall low muscle tone, but his organs as well.

Breathing becomes a problem, exacerbated by the inability to swallow. Which is caused by structural problems as well as low and high muscle tone. So, his oxygen saturation is below par often.
Digestion is problematic. He does not absorb nutrients the same way as any other child. He cannot eliminate waste as effectively as other kids do. And because of our refined Western diet most kids don’t eliminate waste effectively to start with.
He does not move as much or sweat effectively to get rid of waste.
His body becomes acidic.
His immune system is compromised.
His head is compressed because of low smooth muscle volume and so he suffers from neurological short-circuits called seizures

What does allopathic medicine propose?

Laxatives
Anti-seizure medication
Pain-killers
Anti-acids
Aggressive surgery
Injecting poisons into muscles to relax them

All of these things have sometimes horrific side-effects. But keep in mind that, once again, these medicines are not going to be absorbed and work in the in same way as in somebody without brain damage. Which makes their potential harmful effects all the more frightening.

Because allopathic medicines “work” fast and because the parent feels helpless and afraid of losing their child, they use allopathic doctors and medicine indiscriminately. We did. Everything I believed and learned went out the door the moment I thought that I would lose Loren. To his detriment.

Doctors know that very few of their “treatments” work on kids with CP. They know CP cannot be “cured”. So, they feel helpless too. Instead of admitting that they need to think out of the box on this one, they bumble along. Actually causing more harm in the process.

Doctors are just as vulnerable as other people. They are just people, after all. And the same prejudices concerning disability plague them too. Because they feel helpless in the face of disability, many, maybe most of them tend to dismiss a person with a disability as beyond help. And beyond help=not worthy of help eventually.

That is why the first thing they wanted to discuss with us when we brought Loren to them was a DNR order. That is why they are so afraid of genetic deviation. Anything that deviates from normal renders them ineffective.

Doctors are revered. They seem to take on a glimmer of “magical”. “Healer”. Medicine man. Muti man. Traditional healers. All the same thing.

People talk about “my doctor”. You don’t hear people say “my plumber” or “my electrician” or my mechanic” or “my attorney” do you? Children might say “my teacher”, yes. Think about the implication of that for a moment and hold that thought. We’ll get back to that later.

One day I was talking to a friend, complaining about something some stupid doctor said or had done. And she ever so gently suggested that maybe I had a problem with doctors. Maybe I was being a tad excessive in my dislike of them. (Choosing an unassisted homebirth kind of puts me in the realm of the slightly mad.) Because you see, doctors are good people who just want to help. Who wouldn’t trust “ their” doctor?

For a moment I was stunned. But then my brain started working again. And I thought. Hell, yes, she’s right! I DO HAVE A PROBLEM WITH DOCTORS. Revelation!

I have a problem with doctors. AS I HAVE EVERY RIGHT TO HAVE.

Let’s put it very plainly.

Doctors charge money in exchange for a service rendered. Lots of money. And, unlike a plumber or an electrician or even an attorney there are no guarantees of success. Medical science is actually not a science at all. It is a very loosely defined matter of trial and error. And then you bury your errors.

A friend once told me the beautiful and unfortunately true story of being a soldier in the South African Bush war in the eighties. They had the most advanced weapons and teamed up with another African organization in order to fight the “bad guys”. The South African soldiers were tasked with training the other soldiers in using the South African weapons. They took them out at night and told them to all aim for a star. This would help them to shoot parallel and not shoot each other. The order to fire was given. All hell broke loose. Each soldier had aimed for a different star and they nearly shot each other to smithereens. Medical science is kinda like that. If you don’t get killed by the disease, you just might get killed by the cure. Especially if it is used without much thought.

So, to get back to basics, nobody is doing anybody a favour here. Doctors charge sometimes exorbitant fees in return for…what? Health? Healing? Life? If you believe that doctors can give or guarantee any of those things you probably also still believe in Father Christmas.

So, if you ask money to deliver a service which I have no guarantee of to begin with I have every right to be fussy about that service. Especially when it is something that has a life-or-death influence.

Notwithstanding the fact that medical science gave us disasters before and are still caught with a biting-their-bottom-lip-oops-we-screwed-up attitude on a regular basis, people still tend to believe everything the doctor says. That was the first thing people wanted to know: “What does the doctor say about Loren? Will he walk? Will he talk?” Whatever the doctor’s said became the ultimate judgement on Loren’s life. In fact, the doctors knew just as much as we did in the beginning. And in the end, they knew a great deal less than we did about Loren.

It is, of course not only the doctor’s fault. Healthcare users are overall the most mindless bunch of people ever to populate this earth. And never fear, I am one of those. The same people who act responsibly and thoughtfully in all matters from their own professions to parenting, change into simpering idiots the moment they step through the front door of a hospital or doctor’s consulting room. They blindly follow “doctor’s orders”. Even the word is insulting. How can one adult – who isn’t even your boss – order any other adult to do anything?

Healthcare users live any way they want. And then expect miracles from the doctor. I usually just roll my eyes when somebody complains that they’ve been to this or that doctor and he wouldn’t even give them an antibiotic for their cold. So, he’s not as good as doctor X who gave them the antibiotic. But, by the way, they are still sick – a whole week after getting the cold! Must be a really bad bug. Maybe they should go back to the doctor to get another course of antibiotic. And then the second course “cures” the cold. Right around the time the virus would have worked its way out of their systems anyway….

I better end this before I get really angry. I dislike doctors as a group, withstanding the grudging respect I have for one or two individuals. I dislike all they stand for. I think allopathic medicine has greater potential to harm than to cure. And if any doctor feels slighted by this, he/she is welcome to it. I meant it as such. If you want to give yourself out as a toffee, you’ll get chewed. And your medical degree is no protection.

As for the rest of us: I think it is time that we start to think for ourselves.

Marco and I went to the last Toptots session for this term. His last ever. I would have felt more sentimental and tearful about it if he wasn’t so completely revolting the whole time we were there.

To make a list of his misdemeanors would take too long. I consider it sufficient to say that, even if there were more sessions to go to, I would seriously consider dropping out after today.

For posterity I wish to leave you with the two moments he was actually behaving and co-operating.

And with the image of his brother: Watching and learning….