Relapse

Sunday 19 February

“Relapse”. It grabs the throat. Bad news, yes, oh yes.  I’d hoped to have “Leukemia” relegated to the past; where it remains safely distant yet discernable to enhance the present and the future. The disease is back and it sucks. But remember, it remains treatable! It is a nasty disease and the options are not limitless; but it is a relapse, not a sentence without appeal.

I go into this with the accumulated fears of 2011; details wrapped in nightmares that are only sometimes identifiable. Sometimes I think intelligence and awareness are a curse; ignorance, denial or mental incapacity maybe blessings. This time, I go with conscious knowledge of what I need to face.  Can I prepare myself psychologically and psychically?

Mornings cause the most anxiety. I’m constitutionally against all unnecessary medications and mood-altering chemicals; but half a Xanax in the morning mitigates the panic. Exercise during the day helps to tire me, so I sleep.

I shiver at the start of every weekend: No regular staff; nurses are not always available. Insistence on a doctor when something truly feels wrong meets with resistance at best, scorn or absolute refusal after repeated pleas for attention. And when the intern-on-guard finally arrives, facile explanation, if any, is  proffered for what one’s own body and accumulated experience warns is not normal and portents a real problem. Rule number one on survival: no emergencies on weekends or the middle of the night.

My general  list of lessons learned include: keep  the control I can keep and push-for in an institution designed to control you, infantilize or diminish you in order to keep their order, schedule and sense of power. Speak up and ask all the questions that the staff may not want to deal with. Maintain the boundaries with staff, other patients or patients’ families who may consciously or unconsciously gnaw away at your privacy, dignity or last reserves of autonomy. Definitely keep the staff on my good side by using all the courtesy and respect that is correct; but remember it is my life, including my inner life, my health. Practice daily meditations that heal and keep mental equilibrium. Watch or listen-to anything funny and startle staff  with a black sense of humor. It displaces fear.

Find the small things that can make my reduced, cubbyhole existence easier to bear. Listen to books, TV, read the Herald Tribune - word jumbles included - use earphones when the doctors talk to the other patient so that it doesn’t upset me; devour individual portions of Haagen Dazs that they won’t take away, microwave ethnic (and therefore safe) dinners; keep as much view of the window as possible to experience the weather and season.

Contact with family and friends is THE lifeline. Without them, I certainly would not have made it. They give me the hope, strength, courage, humour, energy and will to make it.  And Toine most of all. My love, comrade in arms-since our very first war zone, mischievous companion. And sometimes he needs freedom and to escape from all of this.