video: Martina is missing something.

"I spent four full days with Martina. During this time, some of my prejudices about how it is like to live with multiple sclerosis proved to be untrue, one after another. Martina is a joyful girl who faces her daily challenges with tenacity and perseverance. Besides fulfilling her working obligations as any other person, Martina lives a normal life, made a bit hard sometimes by her walking difficulties. During the time I spent in San Quirico d'Orcia, the protection for people with multiple sclerosis seemed fairly high in the area, although there are still a downsides in terms of architectural barriers and general awareness of the needs of people with restricted mobility. It has been a transforming experience for me, and I hope I was able to present it exactly the way I lived it."

Carlos Spottorno

San Quirico D'Orcia, Italy, 02/2012 • Diagnosed in 2004 at 18 years of age, Martina Vagini went on to complete a university degree but then hit a low point. With each relapse, she felt she had to “accept” MS all over again. She lost her confidence, felt angry and fell into a deep depression, often thinking about how MS would affect her dreams – particularly to have children. Joining the Italian MS Society was a turning point: as she learns more about the disease, she finds new ways to cope with it. Now work
San Quirico D'Orcia, Italy, 02/2012 • Martina Vagini steps out of the toilet in a local bar. Because she suffers bladder dysfunction associated with MS, she is always conscious of access to facilities. Few public spaces in her town have installed access ramps and many doors are too narrow for a wheelchair. Martina constantly encounters architectural barriers that make it difficult for her to move around; they would be impossible for someone in a worse condition. Credit: Carlos Spottorno
San Quirico D'Orcia, Italy, 02/2012 • Martina Vagini stands in front of sign indicating a spot for disabled parking, which has been used to dump a small mountain of snow from the rest of the lot. While Italian law protects the disabled, Martina has become used to this kind of disregard on the part of both the public and public authorities. Lack of awareness leaves people somewhat unconscious of how their behaviour affects the rights of PwMS or other disabilities. Credit: Carlos Spottorno
bbadia San Salvatore, Italy, 02/2012 • Lack of balance and foot drag (right leg) make it necessary for Martina Vagini to use two canes when walking, particularly in winter. While cars with automatic gear mechanisms are rare in Europe, Martina counts this as her most important tool in maintaining a high degree of independence. Credit: Carlos Spottorno
Bagno Vignoni, Italy, 02/2012 • Working in reception at a luxury hotel and spa is a good fit for Martina Vagini, who admits that previously being unemployed contributed to a severe depression. Now she has opportunity to use her training as an interpreter and meets many interesting people. Her colleagues and boss are supportive, and the pace of the work is manageable: she can set her crutches aside for long periods of the day. Credit: Carlos Spottorno
Buonconvento, Italy, 02/2012 • Like many PwMS, Martina Vagini loves swimming: it makes her feel light and healthy and, for a time, she can forget about balance and gait problems. But the closest pool is in the village of Buonconvento, several kilometres from where she lives in San Quirico d’Orcia. Although psychologically uplifting, the work-out leaves her physically exhausted. To support Martina’s fitness plan, the local MS Society provides a volunteer who goes along to the pool and then drives her home.
San Quirico D'Orcia, Italy, 02/2012 • Martina Vagini has balance problems; in addition to using canes, she takes the trouble to go to the side of a wide staircase to be close to the railing. In a country like Italy, disability and history create a difficult barrier: laws that encourage (or even mandate) public buildings to improve accessibility often collide with laws that protect artistic heritage. Italy ranks fifth in the world as a tourist destination: in difficult economic times, beauty for the visitor
Abbadia San Salvatore, Italy, 02/2012 • Martina Vagini feels very attached to her nephew, Artico, and would like very much to have her own children. Artico seems to accept her naturally, without any particular reaction to her MS. At 28, she is starting to worry more about how the disease might affect her chances of finding a life partner. Credit: Carlos Spottorno
Nuoro, Italy, 03/2012 • Until recently, Anita Meini operated a gift shop with a partner. Her daughter now manages the store and Anita looks after her granddaughter several afternoons per week. Keeping pace with an active 5-year-old is tiring for Anita, but she enjoys the lively energy it brings into her home. Credit: Carlos Spottorno
Nuoro, Italy, 03/2012 • Anita Meini still has good use of her hands; she knits while watching TV, works on the computer when volunteering for the Associazione italiana di Sclerosi Multipla and carries out many tasks around the house. Twice per week, Anita takes care of her 5-year-old granddaughter; it is tiring but she enjoys how it makes her home come alive. Credit: Carlos Spottorno
Aversa, Italy, 03/2012 • When her first symptom hit, Stefania Salzillo was the classic, textbook case for MS: female, 28 years old and – completely without warning – almost blind in one eye, with pain on the same side of her face. Once registered in emergency at the local hospital, the neurologist immediately orchestrated the full range of tests, including a lumbar puncture and magnetic resonance imaging. Three days later, the diagnosis was confirmed. Credit: Walter Astrada
Aversa, Italy, 03/2012 • Stefania Salzillo smiles as her boyfriend, Ernesto Lodice, plays with her niece, Maddalena. Stefania and Ernesto plan to marry in the near future, and hope to start a family shortly after. They feel well informed of the risks. Women with MS need to discontinue DMD treatment while trying to conceive, which may induce a relapse. Hormonal changes during pregnancy often leave them feeling well, but the sudden change in hormones after birth is also a potential trigger. ...
Aversa, Italy, 03/2012 • Stefania Salzillo walks down the stairs at the local Court of Justice. The analytical training she received in law school has helped her cope with being diagnosed with MS. “The first thing I did was just cry; then I had a strong sense of fear,” she says. “But afterwards I started thinking that having MS does not mean I will have all of the symptoms. So I just asked myself ‘What are my symptoms? What is Stefania’s MS?’ In this way, I try to react just to the present.”
Aversa, Italy, 03/2012 • Stefania Salzillo is both physically and socially active; her family and friends, including Edvige Paone, accept that MS has not changed who she is. “After being diagnosed, I felt that my perspective on life changed. I had to think differently and establish new objectives that were consistent with my disease.” Ultimately, she felt that she had to choose to “live better” to effectively manage living with MS. Credit: Walter Astrada
Aversa, Italy, 03/2012 • “At present, I have no problems in terms of getting around: I can drive, I can walk and I can work,” says Stefania Salzillo. “But I can see that if this changes, everything will take more effort. So, I think this should be an important objective of government policies – to raise awareness of these difficulties and sharpen the focus on solving these problems. Every citizen should be given the same opportunities to live.” Credit: Walter Astrada
Capua, Italy, 03/2012 • Six years after being diagnosed, Stefania Salzillo’s main symptoms are still related to eyesight, which complicates the fact that she is short-sighted anyway. “If I try to look at things with just one eye, I get a blurred vision – there is a sort of veil that I see,” says Stefania. “That creates problems for my work, especially when I have to write or write numbers. When I have to read, I have to have the documents very close to my eyes.” Understanding “the fine print” ...
Aversa, Italy, 03/2012 • Like many PwMS, Stefania Salzillo finds it difficult to cope with the daily injections of Interferon-b. Her boyfriend, Ernesto Lodice, helps out providing both practical and emotional support. But access to medication was relatively quick: she received her first prescription within two months of being diagnosed. The cost of DMDs in Italy is 100% covered by the national health plan. Credit: Walter Astrada
Aversa, Italy, 03/2012 • Stefania Salzillo embraces her boyfriend, Ernesto Lodice, in the kitchen of parent’s home. “We think of a life together in the future, we think of having children, we think of our old age together – one supporting the other,” she says. “And when I say ‘supporting’, I don’t mean only to care-giving because of MS, but just living together every single event of life whether it is good or bad.” Credit: Walter Astrada
Napoli, Italy, 03/2012 • At present, Stefania Salzillo has no mobility problems; but she can see how poor infrastructure affects people who are more disabled. “There are very few parking lots for disabled, and most public and private buildings do not have the appropriate access facilities,” she says, leaving the Court of Justice in Napoli. “This forces disabled people to isolate themselves: they stop working, they give up their social life and even sports.” Credit: Walter Astrada
Aversa, Italy, 03/2012 • Aside from vision problems, Stefania Salzillo sometimes experiences numbness in her spine or her limbs and finds that she tires rather quickly. Since being diagnosed, she takes much more care to live well, exercising more and strictly following a Mediterranean diet of pasta, vegetables and fish, with regular snacks throughout the day to keep her body fuelled. She listens to her body, and rests when she feels fatigued. Credit: Walter Astrada
Photographer: 
Carlos Spottorno
Walter Astrada

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