MIKAEL'S LAST SUMMER - how to choose the end

This story is the first part of a longterm project on how we face death. It was done in collaboration with World Press Photo and NOOR and is presented here in a shortened version. For publishing requests please get in touch here. (Full story is available in Danish, English and French)

 

Mikael, a former sailor and warehouse worker, lives in a remote corner of Denmark, Lolland, a low-income and high-unemployment area with deep social challenges. Mikael however moved here because the housing prices here were his chance to get a house with a garden, like he always wanted. Mikael is also diagnosed with terminal cancer, and his doctors have given him a year to live.

This story follows Mikael and his family from the day of his diagnosis to the final farewell. It is a story of Mikael and his choices - and what it means to have these choices. Ultimately it is a personal story of waiting for the end to arrive.

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  Mikael at home, in his couch

Mikael at home, in his couch

69-year-old Mikael knows what he wants. It is how his brain has always been wired. He wants to be in control and he bends the world around his views. And you can like it or not - he wouldn’t really care. So when Mikael in December 2016 starts sensing something is off in his body, he flat out refuses it as a sign of something serious. Only after his wife Sigrid demands that he sees the doctor, does he go. Reluctantly and under protest of course!


January goes by with test after test. In February Mikael is called to the hospital to get the final results. The news is not good. There is a 13 cm. big tumour on his esophagus, just above the stomach. It is inoperable and Mikael is given 12 months to live. Mikael’s need for control is challenged and he gets angry. Very angry! “DAMN IT” he screams, slamming his fist on the doctor’s table before he leaves.

 

During the next eight weeks Mikael is starting a life-prolonging treatment of chemotherapy that the hospital is recommending. The drugs are strong and painful. Everything feels worse inside Mikael and he is not getting better. But in the middle of hair loss, vomiting and tiredness he sees a chance to take back the control he has lost. He does not want to go on living just for the sake of staying alive. He wants to live full and good, even if only for a short time. By the end of March, Mikael chooses to stop the life-prolonging treatment, and his last summer begins.

 

     Martin, Mikael's youngest son, welcomes Mikael in the summerhouse

 Martin, Mikael's youngest son, welcomes Mikael in the summerhouse

  Coffee-time on the patio with three generations around the old plastic table. It’s a happy and laid back atmosphere. In the doorway wet clothes are drying from the latest water-fight between Martin and Mathilde, Mikael’s granddaughter. 

Coffee-time on the patio with three generations around the old plastic table. It’s a happy and laid back atmosphere. In the doorway wet clothes are drying from the latest water-fight between Martin and Mathilde, Mikael’s granddaughter. 

  Mathilde, is enjoying a bath in a small plastic box from the kitchen, splashing water everywhere.

Mathilde, is enjoying a bath in a small plastic box from the kitchen, splashing water everywhere.

  Mikael and his daughter-in-law, Rina, share a quiet moment outside the summerhouse, while waiting for the coffee to be ready.

Mikael and his daughter-in-law, Rina, share a quiet moment outside the summerhouse, while waiting for the coffee to be ready.

  Photo-albums lie on the table in Mikael’s home. The open page is from a trip in Sweden when Jakob, Mikael’s son, was a young boy. Mikael and Jakob discuss where they had gone for this trip. But no-one remembers anymore.

Photo-albums lie on the table in Mikael’s home. The open page is from a trip in Sweden when Jakob, Mikael’s son, was a young boy. Mikael and Jakob discuss where they had gone for this trip. But no-one remembers anymore.

   Mikael sitting like most days at home now: in his couch. He’s flanked by his wife Sigrid, his dog Ida and his eldest son Jakob. 

 Mikael sitting like most days at home now: in his couch. He’s flanked by his wife Sigrid, his dog Ida and his eldest son Jakob. 

  Early morning in Mikael’s house, everybody is slowly waking up. Mornings are the hardest for Mikael, he sleeps very poorly and have pains during the night.

Early morning in Mikael’s house, everybody is slowly waking up. Mornings are the hardest for Mikael, he sleeps very poorly and have pains during the night.

  Mikael’s condition is worsening. He is loosing weight at a rate of 1 kg. per week. He has asked his palliative team to go to a nearby hospice for two weeks to stabilise the situation.

Mikael’s condition is worsening. He is loosing weight at a rate of 1 kg. per week. He has asked his palliative team to go to a nearby hospice for two weeks to stabilise the situation.

  Strawberries with cream: pure and distilled summer in Denmark.

Strawberries with cream: pure and distilled summer in Denmark.

  Mikael sitting in his room in Svanevig Hospice, Bandholm, Lolland. Tour the France is in full swing and Mikael goes to and from the screen, restless by the quietness in the building. 

Mikael sitting in his room in Svanevig Hospice, Bandholm, Lolland. Tour the France is in full swing and Mikael goes to and from the screen, restless by the quietness in the building. 

  Martin, Mikael’s son, comes by for a visit in the hospice. Before leaving he massages his dad and applies a special skin soothing cream to his back.

Martin, Mikael’s son, comes by for a visit in the hospice. Before leaving he massages his dad and applies a special skin soothing cream to his back.

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  Mikael takes a walk in the halls of the hospice  

Mikael takes a walk in the halls of the hospice 

  Mikael is home! His health starts declining rapidly, but the peace of home matters more to him. Here his enjoying a slow morning in the couch.

Mikael is home! His health starts declining rapidly, but the peace of home matters more to him. Here his enjoying a slow morning in the couch.

  With great effort Mikael has made his way upstairs to shave and get dressed. Shortly after he returns to the comfort of his couch downstairs.

With great effort Mikael has made his way upstairs to shave and get dressed. Shortly after he returns to the comfort of his couch downstairs.

Summer ends

  Mikael has passed away. Shortly before his death a hospital bed has been installed in the livingroom as he no longer had the strength to climb the stairs.

Mikael has passed away. Shortly before his death a hospital bed has been installed in the livingroom as he no longer had the strength to climb the stairs.

  A photo of Mikael as a boy stands on the dining table next to a flag on half mast. It is a quiet reminder to the family as they gather in Mikael’s house before heading to the chapel for a last goodbye.

A photo of Mikael as a boy stands on the dining table next to a flag on half mast. It is a quiet reminder to the family as they gather in Mikael’s house before heading to the chapel for a last goodbye.

  Sigrid, Mikael’s wife, and their dog Ida walking in the garden on a beautiful summer evening a month after Mikael’s death. She still finds herself asking Mikael what he would like for lunch or dinner, until she checks the couch, realising it is empty and Mikael is gone.

Sigrid, Mikael’s wife, and their dog Ida walking in the garden on a beautiful summer evening a month after Mikael’s death. She still finds herself asking Mikael what he would like for lunch or dinner, until she checks the couch, realising it is empty and Mikael is gone.