Marta Pantůčková: Barriers are mainly in one’s head

Marta Pantůčková

The life of Marta Pantůčková was first turned upside down at the age of 21, when the mother of then three-year-old Jakub was diagnosed with lymph node cancer. She says, “It started in the neck. After the node removal, I got my histology report. The doctor told me it was an inflammation and sent me to ‘Žluťák’ (Masaryk Memorial Cancer Institute on Žlutý kopec, or Yellow Hill, in Brno). Of course, my immediate reaction was that people don’t get sent to Žluťák with inflammations.“ That was in 1989, shortly before the Velvet Revolution, and those were different times when such diagnosis would not be shared with the patient bluntly and openly. Public awareness was virtually nonexistent. „At home, I opened the envelope and translated my diagnosis using a dictionary of foreign terms: a malignant lymph node tumour. I was scheduled to be hospitalized the following week, and I really thought I would not be coming home. When I was saying goodbye to my son, I told my husband in the doorway that he had to find Jakub a good mom.“

Against all the odds, a chance at recuperation

At the hospital, Marta met a doctor who saved her life. “He was young, fresh out of school, full of energy and optimism. I was bent on refusing treatment until I got to know what my condition, procedures and prognosis were. This doctor patiently answered all of my questions and I began fighting – my son was my greatest motivation,” Marta recalls. She began undergoing powerful chemotherapy, complemented by radiation therapy. She did not lose faith despite having stage III cancer. The scale for measuring the severity of oncological diseases only comprises four stages.

In the early phases of treatment, Marta had to deal with another calamity. After hospitalization at Žlutý kopec, she found out she was two months pregnant. “I was really wishing for baby girl. Unfortunately, my treatment could not wait any longer. I had no choice. For years and years, I could not talk about it.”

Art as therapy

Right from the first hospitalization, Marta, who had always been artistically inclined, immersed herself in drawing and painting. „It helped me cope immensely. At first, I had no ambition to showcase my art, but soon I was painting for my friends and acquaintances. Then it occurred to me to offer my paintings for sale at the Zelný trh Christmas market.“ During one of the afternoons she spent selling her pictures there, her stall was chanced upon by her doctor. „I was standing there in the freezing cold at a time when I was supposed to be resting and avoid catching a cold at all costs. Suddenly, I felt someone’s gaze on me and looked in that direction. And there he was in a huddle, my doctor shaking his head in disbelief,“ Marta remarks with a laugh.

No time to rest

After about a year, Marta finished her oncological treatment and was getting back to normal rapidly. She started her own real estate agency, her full-time occupation for the next 17 years. “It was a high-stress period of my life, full of making appointments, contracts and mortgages. But I enjoyed it a lot because I am the type of person energized and driven by crunch time.” It might have been the stress of a hectic lifestyle that were behind the next major turning point. In 2003, she began having trouble walking.

From crutches to wheelchair

Once again, she had to get on the carousel of medical examinations. “For long, they could not figure out what was wrong with me. It kept getting worse, so I started doing rehabilitation exercises. My neurologist opined that exercising would not help because the problem was neurological, not muscular. But exercise did help, so I ignored him. I regularly used to spend a quarter of a year at the rehabilitation center in Kladruby and always made notable progress,” recalls Marta. Although exercising made her feel better, her walking ability continued to decline. “My condition deteriorated little by little but abruptly too. At first, I had some trouble walking and next, I could not do without crutches. That was in 2012. When it became clear that there was no other choice but to use a wheelchair, I paid from my own pocket for a pair of extremely expensive carbon-fiber shoe orthoses, clinging to the hope that I could somehow retain the ability to walk. I was fighting tooth and nail against the inevitable.” Eventually, Marta had to throw in the towel.

Life in the fast lane

Marta admits that for a while, she felt embarrassed by the wheelchair. Refusing to socialize, she preferred to stay home. Gradually, she was encouraged by her friends to come out of her shell. Like many others suffering the same fate, she was also deserted by a number of fair-weather friends. “The wheelchair caused quite a purge. All in all, I am glad – the true friends stayed,” she says with a smile.

“Reminiscing about it all, I realize that I always lived really fast. I gave birth to my son at age 18 and started work soon after. The lymph node cancer at such a young age should have been enough of a warning sign to calm down. But I didn’t pay attention. I kept rushing and pushing forward. So I had to get another hard wake-up call to finally take the hint.” Today, she accepts her illness, as well as the paralysis of her lower limbs associated with it, as a gift. Marta’s spinal lesion is actually an effect of the radiation she underwent in her youth. “A few people asked me why I had not sued my doctors for leaving me crippled. I replied, ’How could I? Their treatment saved my life.’” She knows that if it had not been for the doctors, she would not have raised her son Jakub and could not see her grandchildren grow up. She continues, “I never asked, ‘Why me?’ I tried to figure out what happened to me and why, and what kind of signal life was sending to me. It was a price for making it out alive. That’s what a doctor once told me, and that’s how I take it.”

In fact, Marta suffers from one more ailment which resulted from the drastic oncological treatment: a rare nutrient malabsorption syndrome. Again, she learnt to cope. “The doctors actually saved me twice. First at Žluťák, then at the Bohunice hospital when they figured out what had been behind my gastrointestinal problems. Before my operation, I weighed 44 kilos (97 lbs) and could only suck on hard candy. Nowadays, I am on a very restrictive diet and have to stay away from a lot of foods. Nonetheless, it is a huge improvement, compared to what I went through before. I am grateful to them.”

Glass always half full

Marta is an optimist by nature, trying to live her life to the fullest. She competed in curling while she was still able to walk. In a wheelchair, she has explored all kinds of options – she took up photography, archery and athletics. She rides horses and regularly models at fashion shows. She has been making tinned jewelry since 2009. She has recently joined the team of the HandMedia project, aiming to map barrier-free public spaces and promote them among wheelchair users. “My long-term mission is to further the integration of wheelchair users. My dearest wish is for the walking population to treat us as equals. We want to live the same lives; in spite of the limitations we face.”

Her wheelchair is a part of her now, Marta says. Barrier-free accessibility is increasingly discussed and the conditions for people with disabilities or reduced mobility are improving, so it’s not a great obstacle anymore. She concludes, “A stair is not a barrier. Barriers are primarily in our heads.”

ParaCENTRUM Fenix, z. s.

Netroufalky 787/3
625 00 Brno

T: +420 733 589 567
E: info@pcfenix.cz
www.pcfenix.cz

Copyright © ParaCENTRUM Fenix 2020