Thursday, July 11, 2013

Some conversations, a couple should never have to have...

It was a private conversation , so we can only imagine what was said, based upon our knowledge of the events discussed and the personalities of the pair.

Marjorie, always a bit of a coquette , never more than when she has news like this, came in to talk to Henry just before New Year's Eve 1940 :

"I've been to see the doctor and..." a teasing, girlish lilt leaves the sentence unfinished.

Henry has a more subdued personality while also being much more intense. With a ready wit.

A dry,wry ,sardonic sort of wit, very much in the scottish presbyterian style.

So typically he simply says, in a quiet throwaway voice:

"...And so have I..."

Marjorie, the flow of her expected storytelling interrupted, reacts with surprise :

"Why Henry, whatever for ?!"

(Because after all, Henry himself was a highly regarded medical doctor.)

"No. Marjorie, you go first."

Marjorie proceeds to tell Henry the hardly unexpected news, given her obvious manner : they are to have a new baby, in September or October of next year.

It will be their third - a late child, because their others (Shirley and Keith) were born in 1928 and 1930.

Marjorie will be almost 38 when the baby is born, Henry just turned 45.

But parents their age are much more likely to immediately start calculating just how old they will be when baby is in some expensive university.

No couples more so than the Dawsons, themselves both were educators and very well (and very expensively) educated.

Both are likely to be retired by the time this third baby finishes its first of several degrees.

Yet it was already looking like they won't have enough money to provide a good education to their two existing children.

In fact it was the only issue the two ever fought about.

"You're always helping other people's children - isn't past due time you started helping your own children ? By opening a downtown private practise like all your friends ?"

Part of the problem was that a post-graduate education takes time and money and so Henry was 33 before he had his first steady job, and that at the very bottom of the academic hierarchy.

He had only gotten tenure as a professor four years earlier, at the last possible opportunity : obviously then he was not one set for the fast advancement lane.

His real problem - if there was one - was he lived only for his science work and had no aptitude for well paid medical administration or making lots of money working with well-to-do private patients.

Marjorie had a job but it was low paying and her obviously good education and drive had to be set against the fact she had a severe congenital hip defect, which despite many childhood operation hadn't been able to be set right.

She needed a cane sometimes, and a special driving license, and the problem was only going to get worse with time.

But enough about the good news.

There was no way to sugarcoat Dawson's news and he wasn't inclined to either over-dramatitize it or lie about it.

(To his wife anyway, his children needn't have this hanging over their crucial teenage years.)

"You remember the odd way my eyes and face have been looking the last month ?"

Marjorie had .

But she had put it down to Henry trying to do his day job and be a good father and husband --- while simultaneously completing the editing of the big book, deal with his father's recent death and above all, by throwing himself headfirst into his latest scientific project.

Oh the Project ! Above all, Henry's unilateral snap decision to advance its pace by about three months : the straw that broke the camel's back, in Marjorie's mind.

Marjorie was not alone in thinking he should have gone slow on his latest project , at least until the big book was back from the printers and in the subscribers' hands.

But Henry had been unmoved, saying death couldn't wait until the beginning of the next semester.

So now this.

"Well", said Henry, "I read a little." " On the possible causes of those - unusual  - set of facial features, because I had never seen anything like them before as a doctor."

"After just a bit of reading, I quickly went to see a specialist - a neurologist."


"It is early days and there be another explanation , or it might only be a minor version of these diseases - but it is starting to look like either a brain tumour or MG : Myasthenia Gravis..."

A quiet, in-drawing, "oh" from Marjorie.

But Henry wasn't quite finished:

"...and I hope to God, its a brain tumour."

A much louder "OH!" this time from Marjorie, because what could be worse than brain tumours ?

Brain tumours, with their intensely painful headaches and their usual quick deaths, possible operation or not.

But what is MG - or rather more importantly, what was MG as seen from the point of view of 1940?

In 1940, it is now certain that many people had mild cases of MG but never saw the inside of a hospital about it . They never knew they had it and generally as long a life as anyone else.

It was not easy to diagnose this autoimmune disease in 1940.

We now know that it happens when our own body creates antibodies that inadvertently interrupts the chemical process that sends signals along our nerves.

But we still don't know what agent triggers the body to create such antibodies in the first place.

It is easiest to detect when it involves the nerves of the eyes and the face : the combination of a flattened smile, distinct facial sagging and drooping eyes is pretty unique.

Repeated use of these nerves and muscles appears to 'tire them', though what is actually happening is a build-up of the antibodies at the nerve interceptors.

Frequent rest periods will stop this process and restore these nerves and muscles' function and the face will appear normal looking --- for a while, until the build-up occurs again.

But often the mouth muscles are involved and then we see a nasal voice and uncontrollable drooling.

It is hard to get a good cough and it becomes difficult to swallow water or food successfully.

Despite this, there is no loss of reflexes, no lack of the senses mental or physical ,no lack of coordination and above all no generalized sense of fatigue.

The disease is not 'progressive' itself ,(progressively getting worse over time), and seems to go away after these localized tired muscles are rested.

So why did a Canadian study, published at the time of Dawson's disease ,discover that on average MG patients lived only four and a half years and had a miserable and painful life over that period ?

The key word is "patient" : only those with severe enough symptoms to become hospital MG patients were counted in those statistics and these patients almost all had bulbar muscle and sometimes even respiratory muscle involvement, in addition to eye and facial issues.

The bulbar muscle affects above all that complicated dance we must all do, all the time, whenever we attempt to swallow and breath at the same time.

Mess it up and food and water end up our nose or in our lungs and we become prone to death by pneumonia either from bacteria or from faulty aspiration of solids into our lungs.

Call this death from the top of the lung.

Some patients even have reduced function of the various 'outside' muscles that support lung function : the muscles of the diaphragm, thoracic and upper airway. Call this death from the bottom of the lung.

By 1940, most patients that were diagnosed with the severe forms of MG and who lived very near good medical care survived the first few of what were called immediately life-threatening "MG Crisis." (Basically a breathing crisis.)

But each crisis left damage to lung and heart and so while the disease itself wasn't really "progressively getting worse", one still died a painfully slow death from the side affects, as each repeated crisis left one more vulnerable to the next one.

By 1940, there was a drug that helped, but its side affects were bad enough ,particularly as correct dosage was in an early stage , to make many patients wish for the quick,quiet release of death instead.

Also by 1940, there was treatment in iron lungs - only decades later was it realized this made the condition fatally worse ,not better, because the air pressure process was moving in the wrong direction (it was negative not positive.)

Unfortunately, this single simple change (a flick of a switch) came too late to save thousands; not arriving at his Henry's own Presbyterian Columbia hospital, for example, until 1962.

Finally by 1940 a brand new surgery process showed a cure for about a half of the severe cases - the other unaffected half were mostly men in Henry's age bracket, for whom it did nothing and only left them further weakened by a major operation.

Still in 1940, there was a flicker of hope, for even the most severe examples of MG.

It was the simple fact that drug, iron lung treatment and surgery were all literally brand new and could only be expected to improve dramatically over time and perhaps spur even better ideas.

If 1940 MG patients could totally change their lifestyle, they might live long enough to be around for the better treatments when they arrived.

But when Marjorie asked Henry what did a patient need to avoid to be spared the worst of MG, she had to cry out in anger.

The things be avoided were all the things that Henry liked to do in excess !

Always had, always would :

Repetitious eye and muscle use, such as reading medical journals, peering into microscopes or talking with patients to get detailed patient histories.

Working long hours into the evenings, weekends and holidays, without proper food ,water or rest, in hot chemical-filled atmospheres.

Working in environments where virulent throat and lung bacteria are common.

Emotional work-related stress. 

"Henry, you just have to stop all your involvement in this project - leave it to someone else - think of your children, above all the new baby."

"I don't want to be raising three kids on my own in four and a half years , not on my tiny salary and this bad hip."

Marjorie was entirely typical of people all around the world in 1940 and it was people like Henry who were - Thank God ! -  the lonely exception.

She cared, truly cared, for example, about all people starving in the French and later Greek famines.

But she was like Henry's colleagues who admired his moral sense but decried his lack of a sense of proportion , of knowing when to stop.

"You've made your point - and it is a good one - but now it is time to move on."

Henry was willing, even eager, to move on - or even more likely not to have gotten involved in the first place - if only there was someone else to do the job right.

For Henry Dawson was no volunteer, no charismatic leader at the front line, spurring others on.

But he was of a type, a not un-common type : a 'stepper into breaches' -------- but only when he was needed.

"If I stepped back, you know that this part of the project would die."

"Sorry, bad choice of words - those young lads in Ward G-East would die."

"I do care about my family and friends, but someone in this darned world has to also care about strangers too."

So, with eyes badly drooping but jaw firmly set, Henry wearily got up.

He had a needle to give ; a very special needle of his very special new home grown drug.

The needle won't contain much of the drug despite months of unremitting hard work and it probably won't save this particular patient.

But it offered the negro lad hope and shown him at least someone cared .

After he gave the youth his needle, Dawson would sit for him a while - not just to see if it had an effect , though that is what he told his colleagues.

He would sit with him because the young man was all alone and he was dying and because it was New Year's Eve.

The young man would be all alone and dying and all around him he could hear the sounds of young student nurses and young student doctors merrily celebrating new beginnings and the New Year.

So Dawson would sit with him through the celebrations and talk with him, maybe share a little something with him.

And do so with dignity : because now he , too, would grow to know what a re-occurring ever-worsening fatal disease feels like.

From the inside.

So there they sat, in the dark of New Year's Morning, January 1st 1941 : dead men , waiting .....

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