Claude Cueni suffers 24/7: “Self-pity is a waste of time”

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I can’t remember when in the last 13 years I lived 24 hours without pain. I am a full-time and long-term patient in the cell replacement outpatient clinic of hematology, pneumology, neurology, urology, dermatology, cardiology and eye hospital.

My daily medication list contains 14 items. Some pills trigger day and night muscle cramps, sometimes a part of the tooth breaks. My wife, Dina, and I relieve jaw cramps with humor while we eat and brush our teeth. It looks very strange. This is my life, there is no other.

Self-pity is a waste of time and only adds to the pain. I cannot cure my diseases, but I can change my attitude towards them. I’ve always had a sporty attitude towards life and I’ve accepted that I live in overtime. I focus on what makes me happy: family, work, nature.

When I have bouts of pain, I often sing 1970s hits to challenge. Singing is good for my soul but also good for my lungs, with up to 37 percent of them rejected after a leukemia-related bone marrow transplant. It was then said that it was irreversible. Nothing in my life has motivated me more than being told that something is impossible. After years of homeschooling and optimum care at Basel University Hospital, I reached 50 percent again for the first time in April.

Painkiller

According to statistics, I should have died a long time ago. My doctor says it’s unusual and probably due to Dina’s care. Martyrdom under the sword of Damocles requires the right partner. After my first wife died of cancer, Dina brought the Philippine sun into my life. Dina is in pain, but she doesn’t feel sorry for me. She can feel that I’m in pain. We don’t talk about it. He winks at me and says Spartacus. The noise in our latitudes is alien to him. In the Philippines, people do not constantly feel sad, depressed, overwhelmed and uncomfortable with every trivial thing.

Cramps usually wake me up at two in the morning. Dina helps me stand up, I hold her arm, we walk in the apartment, we’re like Bonnie & Clyde but not violent. When I’m online at night, readers sometimes report: Can’t you sleep too? Do you also have this pain? Many people carry a much heavier backpack.

All my life I have been interested in everyday life in other eras. Pain and suffering are part of life. You can suppress the pain with medication, but I fall asleep in front of the computer at the dose I need. Diet and exercise can help, but you can’t escape the pain.

Meanwhile, the polyneuropathy also damaged nerves in the feet and hands as a late result of successful chemotherapy and radiation, which are the cost of survival. Man is stronger than he thinks, but everyone has a red streak. The fact that euthanasia is possible at any time helps to endure the pain. Because you can finish any time. But you keep changing the red line because life is still wonderful. Get it for Dinas Pancit, a Filipino noodle dish.

Claude Cueni is a writer and Blick columnist. He lives in Basel. Hotel California, a life guide for her granddaughter, is published by Nagel & Kimche.

Source : Blick