Photos from Estonia

"Resilience is the common attitude towards life of the main characters from this short documentary. They are from Estonia and they live with multiple sclerosis (MS). Despite the obstacles, they believe they are now better people than before having MS."

Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • Harry Kestlane visits his father, Lilo Kestlane, as often as possible, taking advantage of the chance to enjoy the garden even when the weather is poor. MS changed many things about Harry’s life, both physically and economically; but he is grateful to friends and family who stay engaged socially. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • Harry Kestlane sits quietly at the table, coffee mug within reach but unable to extend his arm to pick it up. MS played a role in the end of Harry’s first marriage and now he meets his daughter very rarely. Because his disability pension is so low – about 300 euros per month – Harry’s current partner, Kaia Nolvak, needs to work. The State argues that his family should take responsibility for his needs and refuses to provide a personal carer. Harry passes most days in exactly the

Tallinn, Estonia, 11/2011 • In 1998, Harry Kestlane’s left eye went black. Six months later, individual letters started to disappear from the texts his read and Harry was sent to the hospital for tests. One some days he could count the buttons on his neighbour’s pajamas; on others, he could barely make out the round spots. In the end, people approaching his bed were just bodies without legs or heads. Then everything faded to grey. As though a thick fluid covers his eyes, Harry now “sees” only pink. Despite

Tallinn, Estonia, 11/2011 • Harry Kestlane relies on his partner Kaia Nolvak to help him with the morning routine of getting out of bed, dressing and having breakfast. Before leaving for work, Kaia settles Harry into his wheelchair. Unless someone comes to visit, he will be waiting in the same place when she comes home. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • MS has left Harry Kestlane both blind and paraplegic. Although he passes many hours alone, he uses the time to train his memory by visualising the placement of things in the room around him. When friends and former co-workers come by to visit and help out, Harry now recognises them by the sound of their footsteps. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • Chess is like a constant companion for Harry Kestlane; he spends hours each day, challenging himself or mentally analysing games of the great masters. The game also helps keep his mind clear; he feels better able to express his thoughts to other people and tell them about the “world” in which he lives as a PwMS. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • Krista Tiitsen comes by almost daily to help Harry Kestlane get out of the apartment, which has no elevator. After hoisting Harry on her hip, Krista must carefully balance his weight against her own while advancing step-by-step down three flights of stairs. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 •“I always want to come up with extraordinary, positive surprises for my friends and relatives and people I meet,” says Harry Kestlane. Through MS, he has discovered the amazing reality that many people are good and kind and willing to be helpful. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • Chess has been vital in helping Harry Kestlane adjust to living with MS. Mentally mapping each move has honed his agility in critical thinking and analysis while playing in tournaments provides a chance to establish friendships with healthy people and makes him feel like an equal member of society. Credit: Lurdes R. Basolí

Tallinn, Estonia, 11/2011 • When Harry Kestlane first noticed he could no longer see letters printed on a page, he had something of a panic attack and rushed to the window to look at the trees. He still loves to be outdoors, but now relies on other senses to experience nature. Harry now “sees” only pink, as though a thick fluid has covered his eyes. Credit: Lurdes R. Basolí

Juri, Estonia, 11/2011 • The hardest part of having MS, says Reet Kiveste, is not being able to move quickly enough to help others. “When I hear someone arguing in the distance, I want to go and help them make amends, to solve the problem. But I can’t. I’m stuck where I am and I can’t express myself.” Credit: Lurdes R. Basolí

Juri, Estonia, 11/2011 • Reet Kiveste was diagnosed in the 1980s when Estonia was behind the Iron Curtain and medical therapy was extremely limited. This made it hard for her husband to receive treatment for a mental illness, and Reet took the difficult decision to raise her two children alone, even as her own condition declined. Estonia has been slow to approve recent MS therapies from which Reet and many others may have benefited. Although the situation is much improved, Tysabri is still unavailable, six

Juri, Estonia, 11/2011 • Reet Kiveste relies on young neighbours to carry her down the stairs, where friends wait to drive her to church on Sunday mornings. Most weeks, this is her only chance to get out. Reet would like social services to help her find a ground-floor apartment, but holds little hope that any action will be taken. Credit: Lurdes R. Basolí

Juri, Estonia, 11/2011 • Reet Kiveste braces her arms on a stable wooden chair to lift herself from the floor and transfer her weight to her wheelchair. If she doesn’t manage this move in the first few tries, continued effort exhausts her. Here, she finally gives up and takes a rest, while guests go to kitchen and make coffee. Reet is deeply sad that MS robbed her of the chance to be a gracious host. Credit: Lurdes R. Basolí

Juri, Estonia, 11/2011 • Faith is central to Reet Kiveste’s daily existence. She draws much joy and inspiration from the young people who have welcomed her into their church and also believes deeply in the power of science to find a cure for MS. Credit: Lurdes R. Basolí

Laagri, Estonia, 11/2011 • An adult-sized tricycle lets Piret-Karin Sula carry out errands such as shopping or going to the bank. Credit: Lurdes R. Basolí

Laagri, Estonia, 11/2011 • Both of Piret-Karin’s children were born after she was diagnosed. Like many women with MS, she felt well during her pregnancies and didn't suffer afterwards. She feels both children are sensitive to her condition, and instinctively know when she is having an attack. They take on more chores and understand her need to rest. Credit: Lurdes R. Basolí

Laagri, Estonia, 11/2011 • Today, Piret-Karin’s main symptoms are stiffness in her legs and loss of sensitivity in her fingertips. She had adverse side effects, but is now on a treatment that seems to keep her condition in check. Credit: Lurdes R. Basolí

Laagri, Estonia, 11/2011 • “It feels like I have no fingertips at all,” says Piret-Karin Sula. “It’s basically like an empty place. So if I want to pick up a spoon or a needle, the only way I know that I’m holding something is through my sight.” Piret-Karin’s first relapses led to loss of vision and a strange loss of speech; she could pronounce all the letters of the alphabet, but not say any words. Now, she is more likely to suffer fatigue. Credit: Lurdes R. Basolí

Laagri, Estonia, 11/2011 • An adult-sized tricycle allows Piret-Karin Sula to enjoy an evening walk with her children, Alexandra-Elisabeth and Toomas-Gustav, or to carry out errands such as shopping or going to the bank. Credit: Lurdes R. Basolí

Photographer:

Lurdes R. Basolí

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