- A day at "high speed"
- Child like from a book
- They asked: don't quit!
- Ah … You are in a wheelchair …?
- Cure for sickness
- Wow, Aneta, you can do this …
- To make it as before 2013
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The more mud sticks to the fenders, bumpers and sides, the better. This is a sign that the mighty high-wheeled car has just finished another off-road rally. Between lumps of sand, pine needles and leaves mixed with water - sticker. It's dirty, but you can see a figure in a wheelchair climbing uphill. And the inscription: NO BARRIERS. Because there are no barriers for a member of the off-road team, Aneta Olkowska, who suffers from spinal muscular atrophy (SMA).
A day at "high speed"
Aneta starts her day at 6:45. It takes about 1.5 hours to get out of bed, wash, dress, eat your first breakfast and prepare your second breakfast. Four times a week, at 8:30 am, a taxi or a car from Warsaw transport for people with disabilities comes to Aneta's house. They take her to work at the AKTYWIZACJA Foundation.
Aneta's work day - expert in personnel consulting, plenipotentiary of the board of the foundation for discrimination and mobbing, career counselor, psychologist, trainer in the field of adapting workplaces to the needs of people with disabilities - is tightly filled. Meetings, meetings, workshops, consultations, work on new projects, phone calls, replying to e-mails. Everyday work of an active woman.
Aneta comes home around 5:00 pm. On the way, he does quick shopping, then eats lunch and goes to rehabilitation, or waits for a physiotherapist at his place. Stress, stretching, passive and active exercises, with and without weight, and finally massages. In total, all of them last about 1.5 hours. Twice a year Aneta goes on rehabilitation stays. All this is needed for Aneta's SMA (spinal muscular atrophy) remedy to work and make Aneta more fit.
Child like from a book
Up to the age of 4, little Anetka develops in a textbook manner. She was 10 months old when she started walking. Then her left leg began to "run" inside, and when the girl fell, it took longer than the other children to get up. She also had to support herself with both hands and with her legs. Aneta's older brother died when he was 3 years old of spinal muscular atrophy of type I. The upset parents, knowing that SMA was a genetic disease, started a "journey to the doctors" to see if their daughterhas the same illness.
It was 1981 and Aneta was 5 years old when the diagnosis of SMA II / III was made after a biopsy of a muscle fragment. The form of the disease is not the most severe, with much better prognosis than SMA I, but also with the prospect that Aneta will live to be no more than 18 years old. Medicine? There is no. With intensive rehabilitation until the end of life, you can only slow down the development of the disease, so that it does not damage the body too quickly.
Little Anetka did not want to exercise. It was blinking as much as it could. When her parents left her in the children's ward of the hospital in Konstant near Warsaw, she ran away from the facility right after them. Another door. It lasted the longest there for 5 weeks. Every day crying with longing.
The Olkowski family lived then in the small town of Rzechowo-Gać near Maków Mazowiecki. Aneta was still in school in grades 1-3. After that, her parents had nothing to deliver to her. Mum won an individual course of study for Aneta. Aneta completed grades 4 to 8 at home. Almost completely isolated from school life. She waited impatiently for academies and Christmas tree parties to experience him at least a little. Fortunately, she had the company of her younger brother and friends from her village. They took Aneta carefully on their bikes. Aneta still has this attraction of good people to this day.
They asked: don't quit!
Aneta "left the house" when she was 14 years old. From under one lampshade it was placed under the other. At home, she didn't have to worry about anything - unless she wanted to. Mom tried to do everything. In a vocational school (and then a high school) in the education and rehabilitation center for people with disabilities in Konstant, where Aneta learned to use hand knitting, she also had almost everything under her nose. She would probably have become more independent in life earlier if - as she originally intended - she went to study at one of the economic high schools in Wrocław or Przemyśl adapted to the needs of people with disabilities. But my parents weren't persuaded.
The university that Aneta chose was already far from home. It was 1999. The magnificent, centuries-old buildings of the University of Warsaw and the department of psychology there were not friendly to Aneta. She often had to ask colleagues to bring her stroller to high floors. And more than once, while driving down the corridor, she saw them looking away from her. If only she wouldn't "catch" them. She did not have any resentment towards them. However, she and her stroller are quite a burden - it was felt especially when you had to climb the 4th floor via wooden stairs.
Aneta lives in a student house. She had to organize the day herself, get food, clothes, textbooks andtransport. After 5 months of such a life, she felt that "her wings are starting to drop", although she passed the first session very well. She was seriously considering quitting and going home. But as soon as she began to ponder it out loud, people who were sincerely devoted to her appeared and began to dissuade her from it. She emphasizes that she did not give up only because of them.
Ah … You are in a wheelchair …?
Aneta got into a wheelchair when she was 18 years old. Manual. In order not to become lazy. Before the age of 18, she used it from time to time, but knew that someday she would have to change to it permanently. Well, what else to know, and what else to experience … I don't want to talk about it.
Aneta appreciates, however, that she switched to a wheelchair when she was still at the center in Konstancin, among other people with disabilities. She appreciates the fact that thanks to the stroller she is more mobile, independent and that while moving on it, she can wear airy dresses, skirts and … high heels. When she walked, she put on clothes that did not restrict her movements as she often fell over.
Your wheelchair psychologist underestimated the labor market. For the first year after graduation, Aneta was unemployed. She wanted to find a job in a psychological and pedagogical counseling center, make diagnoses for children and make development plans for them. She did not get the job.Because how will you handle the children in this pram?- she heard. Other employers apparently had a similar opinion. When Aneta wrote in her CV information that she was a wheelchair user, no one invited her to an interview. In turn, when she omitted it - on one interview the qualification procedure ended for her.
Aneta, however, insisted on staying in Warsaw. Financial troubles overshadowed the joy that she got an apartment in this city. She decided that she could no longer adhere to her plans to work in her first profession: clinical psychologist, and that she needed to acquire a new qualification. She completed postgraduate studies in career counseling. It has come to the "golden age" for Polish non-governmental organizations working for people with disabilities. In 2003, the European Year of People with Disabilities, the European Union began allocating huge funds for the development of all initiatives in the field of professional and social integration of people with disabilities. Aneta has not had any break from work since 2005.
Cure for sickness
The powerlessness came suddenly with a strong relapse of SMA in 2013. Stress, everyday problems. Aneta started to lose strength, she had more and more problems with breathing, high heart rate, fast heartbeat. The kidneys and the thyroid gland toobegan to fail. Within six months, Aneta became dependent. Mom came to her and stayed with her. To help Aneta. When transferring to a cart, dressing, or cooking more.
In 2022, in Poland, there was more and more talk about the drug for SMA, which inhibits the development of the disease, improves the condition of the affected muscles, and prevents it from attacking other muscles. The only and most expensive drug. One dose administered directly to the spinal cord costs EUR 90,000 (list price)! Special programs have emerged in Europe where children with SMA, and then adults, start getting the drug for free. Many Polish families either traveled from one country to another where the drug was available, or even settled abroad permanently.
In Poland, there was a struggle for drug reimbursement for SMA. Aneta joined her, collecting signatures for a petition to the Ministry of He alth from the SMA Foundation. She cried with happiness when the he alth department reached an agreement with the manufacturer of the drug, and then began to cover the cost of its purchase and administration. Aneta thought:how good it is that the kids won't be going through the same things as me . The drug's effects were best seen in children who started taking it shortly after birth and diagnosis. They got a chance not only for development, but also for an ordinary and long life. But in adults with SMA, the drug also worked. So Aneta started to figure out how to use the drug abroad, or how to earn PLN 1 million every year to buy a drug for herself in Poland. She didn't have time to think of anything. A program was implemented in the country, thanks to which the drug was also available to her.
Wow, Aneta, you can do this …
In January 2022, Aneta collected documents and entered the SMA patient registry. She waited fearfully for the decision to qualify for the drug program. The neurologist who looked at the results of her research from 1981 stated that … it does not appear that Aneta had SMA. - So I live so many years with a disease that I don't have? Aneta thought. However, repeated tests confirmed the original diagnosis.
The first dose of Aneta was given on August 12, 2022. She knew the procedure. She knew that the drug was administered during a lumbar puncture into the spinal cord. But she was afraid that she would be able to puncture her spine, which had been disfigured by scoliosis. It worked without problems, both for the first time and for the next 3 doses. After two doses, Aneta did not know yet if the drug was really working or if she wanted it so much.
After the next - as she calls them: golden shots, after careful observations of the body, and then after research and evaluationphysiotherapist already knew that nothing seemed to her. Aneta's muscle mass has increased. Her physical endurance has also increased. She used to be able to exercise only for half an hour, and now for 1.5 hours. In the car, he no longer needs to use the headrest. The neck muscles hold her head tight.
Every day Aneta discovers a new activity, during which she says to herself with admiration: see, you can do it … She couldn't spread melted cheese on a slice of bread, and now she does it without any problem. She used to set up a structure made of books to put her hand on them and turn on the light, and now her hand reaches to the switch itself. Aneta is also trying to sit down and get off the stroller, and her fingers run faster on the computer keyboard or wind the yarn on the crochet hook.
To make it as before 2013
This is Aneta's goal. To achieve it, he must take the drug every 4 months for the rest of his life. When the body does not receive the drug, the effects of rehabilitation worsen, and the he alth of patients with SMA deteriorates. The drug will be reimbursed in Poland until December 2022. The SMA Foundation and Aneta are already fighting to extend the program so that as many people with disabilities as possible become more independent. On February 1, 2022, the SMA Foundation issued a message that, according to its information, there are no plans to stop reimbursing the drug.
Aneta doesn't take failure into account either. The illness taught her that if plan A does not work out, plan B must be implemented. She also taught her humility, patience, good organization and creativity in finding solutions. When Aneta was unable to look into the pot to check how the food was cooking in it, she asked to install a mirror above the stove. When she couldn't open the window by herself - she helped herself with a clothes hanger.
Aneta loves air and everything related to it. She was already jumping with a parachute, she flew in the tunnel. 10 years ago she also joined the off-road team as a pilot. Rallying with 4-wheel drive vehicles through wilderness, gorges and swamps is her second hobby. In admiration for her fortitude, colleagues prepared a special car sticker for her: a figure in a wheelchair riding uphill and the inscription: NO BARRIERS.
This is Aneta's motto. He remembers them every day. Especially when she drives in a wheelchair through the gate of the University of Warsaw, which was once not friendly to her and which she wanted to give up, and then takes the elevator to the first floor of the lecture hall. This time as a lecturer.About the authorMagdalena Gajda A specialist in obesity disease and obesity discrimination of people with diseases. President of the OD-WAGA Foundation of People Suffering from Obesity, Social Ombudsman for People's RightsPeople with Obesity in Poland and Poland's representative in the European Coalition for People Living with Obesity. By profession - a journalist specializing in he alth issues, as well as a PR, social communication, storytelling and CSR specialist. Privately - obesity since childhood, after bariatric surgery in 2010. Starting weight - 136 kg, current weight - 78 kg.