Maria's Story

by Robin Barratt

  Maria was told she wouldn’t be needed the following day, as most of the work would be in the workshop working on the casts and sockets. Maria had taken a week off from the streets and was pleased that she could spend the day with her son who was staying with Lydmilla. Maria arranged to meet Anton and Lydmilla back at her room in Lunevo. Andrey arranged with a driver to take her back to the train station and they all kissed and hugged as she left.

  That evening Jamie took Inna to dinner at a small restaurant opposite the Moscow

  Tchaikovsky Conservatory. As they sat and ate and discussed the day, they watched as Muscovites filed past the pillared entrance into one of the popular concert halls in Russia. Founded in 1866 by world famous pianist and conductor Nikolay Rubinstein, the Moscow Conservatory, with over 1000 undergraduate students, is said to be one of the finest and most famous schools of music in the world.

  It was a great end to a great day. Jamie settled the bill. Inna felt guilt but there was nothing she could do. She had no money, certainly not enough to eat out and our benefactor had refused to pay any of their expenses, so Jamie paid from his own pocket both that night, and throughout the rest of that week. Inna saw Jamie back to Olga’s apartment and then took the metro and minibus all the way back to Zelenograd, finally getting to bed, totally exhausted, just after 1am.

  Five hours later Inna’s alarm rang and she struggled out of bed and back to Jamie’s apartment. Inna knew Moscow and understood what could happen to foreigners; how easily they are targeted by both police and criminals. She also knew how difficult travelling on the metro could be for someone who spoke no Russian. Although Jamie had travelled the world she felt responsible for him while he was in Moscow and so made sure she met him at his apartment every morning and made sure he got back to the apartment safely every night. He later said to her that she would make a good mother, always protective and caring and aware of what could happen.

  They then caught the yellow metro line to Novogireevo, at the very end of the line, where Andrey met them and drove them to Reutov. That day Inna spent translating backwards and forwards between Jamie, Andrey and the rest of the team. As Jamie started work on Maria’s legs, the degree of her hip flexion contractures and spinal curving became more apparent. Because Maria had spent many years on her wooden platform, the residue limbs had set at an angle of 30 degrees, which meant she could not, in fact, straighten her legs from the pelvis. This was greater than they had originally thought. The team, along with a medical doctor, sat down and discussed what could be done. This was going to be tricky as a 30 degree angle was one of the biggest they had come across. They decided to compromise with a 15 degree alignment which would give Maria just enough hip flexion to be comfortable, while reducing the strain on her lower back. At 15 degrees the cosmetic shape of the prosthetic would also be maintained. They filled the plaster models at that degree of flexion and carried out the required modification. Before proceeding to the definitive sockets, transparent sockets were used to allow confirmation of the socket fit and to assess comfort. Although Inna’s voice was becoming hoarser by the minute, surprisingly everything was all going to plan and the legs were slowly taking shape.

  Andrey’s driver picked Maria up at 9am on day three. She was cheerful and worked happily with Jamie and Andrey as they fitted the left and right sockets. A small weight-bearing jig was set up and Maria was carefully placed onto it to assess comfort and fit of the two sockets. At first each socket was tested individually, and then both together. Maria was told that because these sockets were completely, new they would feel different and unusual and so it was vitally important for Jamie to have constant feedback from Maria, and Maria worked hard responding on her feelings of comfort and sensations. After initial difficulty with the left limb, both sockets were eventually shown to be a good fit, in terms of comfort and control, although further slight adjustments would probably still be needed prior to the manufacture of the definitive sockets. Jamie finally showed Maria his prosthetic.

  “I want one just like that,” she said.

  “You will have.” he replied. Maria was back to her normal self, charming everyone around her.

  For Andrey and Jamie day four was the longest and hardest. Inna had been given the day off and Andrey had found another interpreter. Andrey spoke little English and so an interpreter was essential for them to communicate effectively and efficiently. Both the provisional sockets were filled with plaster and the required adjustments made. To trap the moisture within the plaster models, the casts were sealed with lacquer. The casts were then draped with a soft plastic and the residual third was cut away, leaving a collar would improve sitting comfort and cosmesis. The locks were positioned and secured by the first lamination. The adapter that would connect the socket to the remainder of the limb was positioned and secured by the second lamination. The new sockets were almost ready to be connected to Maria’s existing prosthetics.

  At 10pm Jamie called Inna from the workshop to ask her to ask Maria to be at the station at 10am the following day. Everything was set. Tomorrow Maria would take her first proper comfortable step in almost 19 years.

  Because of the traffic Maria had been waiting outside the train station for almost an hour.

  “He’s coming,” Inna said two or three times as she kept calling Maria telling her not to worry, that Andrey was on his way. Moscow traffic on a Friday morning is as bad as in any other major city around the world. It was a bad start to what was going to be a difficult day. Finally Andrey tooted the horn and Maria wheeled herself over to his car. Andrey jumped out and lifted Maria into the front seat throwing her platform into the back. They sped off.

  Maria wore her best clothes that day, and had especially done her hair and applied a little makeup. She wanted to feel good on this eventful day. She hadn’t slept much the previous night, tossing and turning and laying staring up at the ceiling wondering what was going to happen and where her life was eventually going to take her. Would she actually be walking comfortably by the end of that day? Was she really going to stand amongst the rest of the team, at their level, no longer having to look up to them and them looking down at her?

  Finally, and almost two hours late, Andrey arrived at the workshop. That morning both sockets were trimmed and prepared for the final fitting. The new sockets were different to Maria’s old sockets; they would be a lot more comfortable. More modern techniques of manufacture were now being used since her old sockets were originally made in Russia a few years earlier. Also, the material differed slightly as a soft plastic was now going to be included in the manufacturing process. This was because, in Maria’s case, a lot of the time would be spent sitting when wearing her new prosthetics and so sitting comfort was a focus. Plastic allows the thigh to move a lot more freely than a non-flexible material. However, the sockets were now bigger than her old original sockets. Maria looked at her sockets horrified.

  ”I am not wearing those,” she screamed. “Look what you have done to me.” Jamie and the team stood, shocked.

  Jamie, with Inna translating, sat next to Maria and, through her tears, explained that the new sockets were different because of the 15 degrees of flexion that had been built in to support her hip. She knew that she had a very bad curvature of the spine and these new sockets would help prevent it getting worse. If she continued on her platform her spine would eventually disintegrate. Then she would be unable to go anywhere or do anything, she would be paralyzed. Jamie said that her long term health was more important than the size of the sockets, and anyway, he said, she hasn’t tried them on yet.

  “But they look horrible,” she cried. Maria wanted to look good and she couldn’t see beyond the initial outward appearance of the new sockets. “I am not wearing them.” Like many people with diseases or illnesses they somehow felt they knew more about their illness than the doctors treating them, Maria felt the same. She had been disabled almost all her life and felt that she knew what
was best for her and her condition.

  “All right,” Andrey said, “We will leave you here for a while on your own. You can play around with the components. Try them on, see how you feel.”

  Jamie, Andrey and Inna left the room and went across the hallway to the kitchenette and made themselves some tea. A few minutes later the door burst open and Maria wheeled herself in crying hysterically. She couldn’t even put them on; the whole week was a waste. She will never trust anyone again. Everything was a waste.

  Jamie and Inna stood and watched as Andrey ushered Maria back into the room from where she came, looking down at the sockets and components discarded and scattered on the floor. Inna and Jamie sat silently in the kitchenette, sipping tea, not knowing what to do or what to say, listening to the hysterical sobs of Maria in the other room. Slowly the sobs dissolved and then there was silence. They sat looking at each other.

  “Guys,” Andrey called “Come here.”

  Inna and Jamie jumped up and rushed across the hall and into the room. Maria stood there, smiling.

  The new sockets were amazing. They fitted perfectly. Jamie took a mirror and walked around Maria as she looked at herself at every angle. There was no apparent ugly rim; it was impossible to see that she had artificial legs under the short skirt she was wearing. She giggled and laughed like a child who at first rejects something and then realizes what they initially rejected was actually quite wonderful. Maria was a child, but a child they had all come to love.

  Supporting herself with full-length crutches she slowly got used to her new legs. She was walking comfortably for the first time in her life. Amazingly, after ten or 15 minutes walking around the workshop, she asked for shorter elbow crutches. Jamie and Andrey were uncertain, saying it was far too early, but she insisted. They reluctantly handed her a pair and watched nervously as she gingerly supported herself and slowly started to walk. It was unbelievable.

  The week was coming to an end. Jamie explained the exercises and training Maria would have to do over the next few months, and then, if all goes well, Jamie would come back and fit brand new components.

  Jamie, Inna and Andrey took Maria to the train station where her helper was waiting. They kissed and hugged and said their emotional farewells and watched Maria through the window smiling and waving as the train pulled away.

  That evening they celebrated.

  After a day with Jamie sightseeing, Inna flew back to the UK early Sunday morning and an exhausted Jamie returned to England Sunday afternoon.

  Chapter Twelve

  The book

  On the 5 October 2004 I wrote to our benefactor asking if I could interview her for the book. I wanted to talk in detail about her charity and describe the work that she had done with other disabled people around the world. I honestly and genuinely wanted to show that, despite everything, and despite what we still felt were her unfulfilled promises, there was a compassionate and caring side to her. I had already agreed to give half my royalties from the sale of this book to Maria; the money would eventually go towards helping her start a new life off the streets, but I also made a promise to our benefactor to donate some of my royalties to her charity. Three weeks after I had written to her she replied saying that she rarely does interviews as things are hardly ever written as discussed plus it would take up too much time.

  “Having said that”, she said, “when a writer gives her the headline, photo and a copy for approval before publication”, she might, occasionally, consider interviews. But, she said, the problem was her publicist; it would be more work for her as she would have to check everything. She also said that because we would make little or no money from my book anyway, the money I promised to donate to her charity would be irrelevant.

  On the 2 December 2004 I wrote to her again, asking if she could at least write a Forward to the book, in that way her publicist would not have any ‘extra work,’ On the 15 December, her Personal Assistant replied telling me that our benefactor was up to her eyes in work, but would I like to write the Forward from her myself, which would have to be approved before publication. Of course I declined.

  So it seemed to Inna and me that after everything, our benefactor just didn’t want to know after all. We felt that all those initial promises of helping all she could meant absolutely nothing; she couldn’t even be bothered to give me an hour of her time - it simply wasn’t worth it to her as, in her own words, I will make no profit from the book and my promises of donating to her charity were ‘irrelevant.’

  Epilogue

  Maria worked hard practicing walking, using her new legs and a few weeks later she and Anton spent a few hours just walking around Moscow city centre. She says that one of the most amazing things she has experienced while wearing her new legs is that she can now look at people at eye level. With legs nobody stares down at her, no longer demeaning her, degrading her. She is on the same level - socially, psychologically and physically - with everyone else around her. A few weeks after that Maria went to see Andrey to be assessed for new sockets, as her limbs had changed shape slightly since the sockets were first fitted. Andrey stood amazed as Maria walked around the clinic on her prosthetics but without any help from her crutches. He had never seen anything like it. It is virtually unheard of for someone with that kind of disability to walk unaided.

  The next stage was that Jamie was scheduled to return to Moscow in the summer of 2005 and replace the refurbished Russian legs with new modern Össur legs. The legs would then have to have the cosmesis coverings fitted to make her legs so life-like, and Maria could once again strand proud amongst others around her. However, this never happened. Our benefactor, who had promised us everything, did nothing else and we never heard from her again, aside from threats of legal action against us publishing this book. Hence we have removed her name. Sadly time passed and we had no way of raising the funds needed to finish the project we so proudly started.

  Someone called us in February 2014, they had seen Maria in Moscow, back on her wooden platform, hand outstretched, begging at the entrance to a squalid metro.

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