I have got to know other people in the strange club of the chronically ill. I have friends I talk to on the phone but have never met; friends who are at home during the day, at home, in fact, nearly all of the time. Like me, they had a life before that has been lost; now they wander in the twilight zone where doctors diagnose but cannot cure, and the faint miasma of societal suspicion, never attached to those with cancer, or with heart disease, hangs about them, that somehow it must all be psychosomatic, or that at a deep level they actually want to be ill.
How did we find each other? Bizarrely, the European Union is mostly responsible: its plan for a compulsory switch to compact fluorescent light bulbs in homes and offices—in fact, everywhere—causes deep concern among people with a range of health conditions who find these bulbs give them painful and severe reactions. (Not everyone with a particular condition is affected this way—nothing so elegant, helpful or uncomplicated—just a subset, in each case.) Trying to find out what is happening, discussing how to influence UK MPs (mostly lovely and supportive) and the European Commission (the equivalent, it will sadly turn out, of smashing your face against granite), and sharing information about possible alternatives that may not be banned, I speak to people with ME and lupus and other conditions, and we put each other in touch with more.
With some, I just talk about light bulbs, and that is the end of the matter. With others, I start off talking about light bulbs, and we end up talking about our shared experience of falling away from the normal, about books and families and politics and ideas; we keep on talking.
My telephone friends speak of pain, debility and nausea, of fatigue and fog in the brain—but in absolute terms, their activities, unfouled by the darkness, are less restricted than my own.
Down the telephone wires my friends give me massive transfusions of life. I come off the phone, every time, more cheerful than before.