Chocolachillie

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. Keep reading →

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….

Golden children dancing
To the sound of your amusement, your pride
Beautiful, talented, clever

Where his face belongs is an open space on your wall
Emptiness in your wallet where his image should be
Empty as your memory is filled with one word
Damaged

You were shamed, scandalized, wronged
This only happens to other people
Less worthy

And so you went missing.
Missing out on his love.

You couldn’t give acceptance, support,
Wouldn’t watch. It offended.
You had no interest in learning,
And so you never saw that he wanted to make you proud.

What the people said or thought was so loud that it drowned out
The language of his eyes.

You say you were worried. You said that you prayed from afar.
Thank you. I suppose.

I know you were too busy:
Condemning
Denying hope
Negative
Negative
Death

Keep your silver pieces. They never meant much anyway.

We have a set of a few steps in our passage going down to the level of our bedroom. When we moved into the house I griped about the steps and the stupid people who would put steps in the middle of a passage. (Sorry Mr. McCormack. I know there was no other way.) Non-stop.

And indeed, I fell down those steps in the middle of the night going to the bathroom with monotonous regularity. Once even while I was pregnant.

One day I complained about the stupid three steps in our passage to a good friend of mine. She looked at me with a slight smile.

“Nelba,” she said, “there are four steps.”

I counted them and yes, sure, there were four. My perception and the reality were two different things. Different enough to trip me up. My problem was not the steps, but my perception of them.

Guess what? Ever since that day, I’ve never fallen down the steps again

There is nothing that depletes joy as quickly as the misconception that perfection exists.

As a child I envied my friends their sense of security. Perceptive from the start, I knew that I was different. And I thought that the difference was that they were happy and I was not. I was right, incidentally. But what I didn’t realize was that happiness is a choice.

This became a pattern throughout my life. I would rush through life towards the next thing that I thought would make me happy. Work, marriage, parenthood.

My love for Marco was tainted with always falling short of my own expectations as a mother. Loren would be my chance to get things perfect.

And then Loren wasn’t perfect, despite/ because of my best efforts.

The hardest learning curve of my life, started.

I’m not quite sure when the turning point came. But one day I realized that life isn’t perfect. Never. Imperfection is normal. And that wishing for an unattainable ideal was robbing me of the moment:

Being loved for being Mama. Not for being perfect.