Motley Moose – Archive

Since 2008 – Progress Through Politics

An Incommunicable Disease

A very brief diary, partly because my word’s can’t match that of my subject – and also because I find this too painful to write too much.

Tony Judt, a British Historian and Professor of History at NYU, was diagnosed with Lou Gehrig’s disease in September 2008. There’s a quite incredible unsentimental and unsparing piece about living with the illness in the current issue of The New York Review of Books. Just to give you a harrowing sample…

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs-since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable…

But then comes the night. I leave bedtime until the last possible moment compatible with my nurse’s need for sleep. Once I have been “prepared” for bed I am rolled into the bedroom in the wheelchair where I have spent the past eighteen hours… I am sat upright at an angle of some 110° and wedged into place with folded towels and pillows, my left leg in particular turned out ballet-like to compensate for its propensity to collapse inward. This process requires considerable concentration. If I allow a stray limb to be mis-placed, or fail to insist on having my midriff carefully aligned with legs and head, I shall suffer the agonies of the damned later in the night.

…and there I lie: trussed, myopic, and motionless like a modern-day mummy, alone in my corporeal prison, accompanied for the rest of the night only by my thoughts

.

This is one of the few personal essays I’ve ever read from Tony who has always been shy to talk about himself. He has mainly used the stabilisation of his illness to return to the fray and as I’ve mentioned before on this blog, has recently given a vitally important lecture on the value of social democracy for the new generation, and fighting back against the 30 dominance of the right. You can find the text published by the NYRB here and a video of his lecture here.

Finally, for those who want to know more about Tony’s work, there have been a couple of profiles in the last few days: one in The Guardian, and another in the Chronicle of Higher Education, The Trials of Tony Judt.

(In the latter, check out the comments section, where some Likudniks say Tony’s disease is what he deserves because, even though he served in the IDF, Tony is “self hating Jew” because he criticises Israeli foreign policy)

Tony calls his disease “incommunicable”. He knows what he’s talking about, so I guess he’s right. But I amazed at his capacity to think, talk, memorise and describe the indescribable with such a clear and compassionate eye. And I can’t help thinking about Anna Akhmatova’s Requiem: Instead of a Preface.

In the terrible years of the Yezhov terror, I spent seventeen months in the prison lines of Leningrad.

    Once, someone “recognized” me. Then a woman with bluish lips standing behind me, who l of course, had never heard me called by name before, woke up from the stupor to which everyone had succumbed and whispered in my ear (everyone spoke in whispers there):

    “Can you describe this?”

    And I answered, “Yes, I can.”

 


6 comments

  1. My mother was diagnosed with ALS when she was 80 years old. In the beginning, I would go over and help her in whatever way I could. I lived across the street and could, without much trouble, go over in the middle of the night to replace a burnt out lightbulb or to check some noise that had alarmed her. As the disease got worse, I took over more and more of her daily chores and started cooking her meals and eating with her every evening. She had the illusion of independence, but it couldn’t last. I ended up moving in with her for the last year of her life, essentially becoming a 24 hour caregiver. Watching her slowly get worse each day was one of the hardest things I’ve ever done.

    She had a less common variant of ALS. Her first symptoms were slurred speech and difficulty swallowing. The disease starts in the mouth and throat and progresses from there. She lost the ability to speak and eventually had to be fitted with a feeding tube. In the end, she became so weak that her body couldn’t fight off other illness. Eventually, she succumbed to pneumonia.

    Like many caregivers, I fell into depression after she died. The main focus of my life was changed in the instant she died. I was a caregiver. That was what defined me. Now, I had to discover a new purpose. It wasn’t easy. Especially since I found myself in the same situation less than 3 years later. I’m still struggling with it.

    I hope, with every bit of my being, that this disease is wiped out in my lifetime.  

  2. sricki

    so hard for you, Brit — but thank you for posting about it. It is giving people like me an opportunity to learn about a brilliant, fascinating man, and that is always appreciated. Best wishes.

     

Comments are closed.