Haibun/Lament

Today is the last day of winter as the meteorological office measures these things. The cold air from Russia is being pushed back (finally) by the warm air from Spain. As we’re much (much) closer to Spain than we are to Siberia, the effects are almost immediate, with the first snow of the year falling as the two fronts battle it out.

Today is also Rare Diseases Day. The two, cold and rare disease, go hand in hand for me. I have a rare disease, an orphan disease, known to its friends as Cold Agglutinin Disease, the workings of which are too complicated for me to have really delved into. Not a lack of curiosity, more a resignation that there’s nothing to be done about it so why waste time working out how it works. Even the spellchecker doesn’t recognize it as a real word. As one specialist told me, ‘You’re not dead yet so it can’t be that serious’. Thanks a bunch.

It went undiagnosed for fourteen years, nine of them spent in the worst possible place for this condition—the north east of France, where the winters are long and bitter. By the time I found a doctor who actually knew what I was suffering from, we had moved down south out of an instinct for survival, and my health was picking up. I hate and fear the cold, even very mild cold, because it turns toes and fingers red and painfull, and eventually black and dead at the tips, because my red blood cells die, because my chronic anemia deepens, and because I get mortally tired and depressed.

I am lucky though. I have this condition all on its own. The vast majority of sufferers have it as a sideline to something more important. Most sufferers get very ill. I don’t. My CAD came out of the blue and doesn’t seem to have dragged any other ailments with it. As long as I’m warm/hot, I’m fine. But I hate the winter, hate the cold, and feel so very sorry for anyone and anything that doesn’t have a warm place to curl up in.

 

Grey sky tosses snow

a bitter rain falling—realm

of hunger and cold.

 

 

 

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