An open letter to my wife, following David Bowie's death.

Dear Linda,

They are still marvelling at Bowie’s death; how well he looked in his sharp suit, what a masterpiece it was.

As you know, I agree. You may never be able to view it, but I have tried to convey to you what a profoundly shocking experience Bowie’s last video “Lazarus” is. It is difficult - being limited to so few words, that must be spoken quietly, softly, with as little body movement as possible.

Even then things are infinitely fragile. The wrong information, conveyed at the wrong moment, in the wrong tone, being far too much to take in and comprehend, is likely to throw you into excruciating, paralytic agony, ruin the day, the week or longer, cause hours of suffering torment.

Last night, late, the pain radiating from your slumped body was tangible. I didn’t need to look into your dark, sunken, seared eyes, to feel it as something malicious , alive, unspeakable, jagged, gut-tearing. “I can’t bear it anymore”, that soft cry, after twenty three years of non-stop physical torment, is impossibly hard to bear.

Bowie’s well dressed, sharp-suited , dancing, famous death, contrasts so much with your unknown struggle to get through each moment. You hear it mentioned how Severe ME compares to terminal Cancer. My love, we know how it is much, much worse.

I bet Bowie wasn’t left, as you are, with no medical expertise, intervention or input. What do you think, did they ever couch his suffering in terms of “fatigue”, as everyone does these days with your disease ?

I struggle, terribly, Linda, to live with the knowing that my decades of struggle and activism have done nothing to prevent your illness being taken over and finally buried.

We have both said it, there is no “ME” anymore only “CFS”. The Oxford Criteria are dead, long live the DePaul Questionnaires, of this fatigue-focused, fucked-up world. How many people with ME are going to be killed by investing in the likes of Rituximab ?

In 20 years I will be 80, will the world have come to its senses by then ? Can your body bear the hopeless wait my love ?

Lazarus was a street person, like you, Linda, he existed, somehow, on the far edge, on crumbs.

Likewise, any help, assistance or aids, we have managed to get for you has been done “on the side”, cast-off bath aids that badly hurt you, well-know clinicians who did immense harm, in their ignorance of Severe ME; you have still not recovered, all these years later and likely never will.

“How many people lie, instead of standing tall ?”, Bowie asks.

Your disease is soaked in lies, your life has been ruined by spin and deliberate cover-up.

Yet through it all, you have stood tall, a rock to me and countless others, the world over.

The other Lazarus, the one that Jesus rose from the dead, the one Jesus wept for -tears of compassion, tears of anger, that is me, in the mystery of our marriage and the power of our love, more alive than ever, never giving up.


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