Introducing you to Agnieszka Palyska, travelling from Poland to feature in the ‘HOW DO YOU C ME NOW?’ exhibition series. As you read Agnieszka’s inspirational story, you will understand why the Caring Matters Now Board of Trustees are so grateful to Agnieszka for her involvement in this very special and unique photographic series.
Agnieszka Palyska (32), lives in Warsaw, Poland. Agnieszka was born with Congenital Melanocytic Naevus, covering approx. 50-60% of her body, including her neck, chest, back and left arm to shoulder. Agnieszka also has a large number of smaller CMN marks covering the rest of her body. When Agnieszka was younger she had a number of removal surgeries, including a skin graft and excision of smaller CMN marks from her face, arms and legs. Those operations left visible scars.
Growing up in a loving family with her brother and sister she had a happy childhood, commenting “My parents have always been understanding, supporting, loving, protective, ready to talk, share and explain. It appears that there is no difference if I was born with CMN or if I would be born without it.”
Reflecting on her first few years of life, Agnieszka comments, “My parents were lost at the beginning and were not sure exactly how to cope with the care of such a different child, especially in the context of the times in Poland when I was born. However, I do have a deep conviction that they came to it in a very mature and conscious way, giving me a normal and happy childhood and preparing for life in a society.”
At school Agnieszka remembers experiencing some challenges. During her Physical Education lessons, getting dressed in-front of other children was problematic due to her peers looking (pretending not to look) and then gossiping. In addition, some children were not allowed to play with her because she was ‘different’.
Agnieszka has also been subject to people asking question and staring, commenting, “The staring was mostly looks of curiosity and astonishment. Some people seemed to feel sorry, some were disturbed or touched. People asked different questions, mostly resulting from their lack of knowledge, such as if I was burned, is it an untypical huge scar, is it contagious or painful, is it an exotic disease, etc. There were also situations when people were looking but were too shy to ask.”
When Agnieszka was 22 she wanted to be a blood donor. She had been through the initial blood tests and accepted for donation. However, at the medical station after an interview with the doctor, she was disqualified because of her CMN.
At the age of 26, Agnieszka had a small lump removed which turned out to be a melanoma. Detailed examination showed it was a primary source of cancer and there was no metastasis, so there was no need for further treatment.
Agnieszka’s family, friends and life experiences have helped her to build self-awareness, confidence and self-acceptance which is an ongoing journey, stating “I have learnt how to deal with countless comments, criticism of my appearance and overreactions. Also, it has taught me how to respond with a smile to other people’s questions and looks, and basically, I have learnt to keep my self-confidence. CMN is just a visual aspect of my appearance but not the essence of my life.”
Agnieszka came across the charity Caring Matters Now when she was researching CMN on the internet. She states the breakthrough moment in her life 8 years ago when she discovered the international CMN support groups. Agnieszka started attending conferences and meeting people from all over the world with the same condition. She hadn’t met anyone with giant CMN until she was 24.
When talking about the work of Caring Matters Now Agnieszka comments, “It is because of the charity that I now have better access to the medical sources and information, latest research, contact with medical staff and experts, and can stay in touch with the CMN community.”
‘It is extremely important to me both from a practical (scientific, medical) and a psychological perspective. I did not have this support before finding Caring Matters Now since the condition is very rare. There are very few doctors or experts who have any reliable knowledge on the treatment of CMN and on where to look for support.’
When asked about Agnieszka’s involvement in the ‘HOW DO YOU C ME NOW?’ exhibition series, she says, “it’s a great opportunity for a social rehabilitation, raising awareness, making people familiar with differences in general and with CMN as a condition.”
Agnieszka concludes, “I am proud of myself that I have gone through the long process of being shy by covering my CMN with a scarf and hiding it from nosy looks, to the point when I am ready to satisfy people’s curiosity by exposing my naked skin to the world so that everyone might look at me closely, taking their time, scanning every detail of my skin without feeling guilty or ashamed of their interest.”
Agnieszka’s stunningly-striking portrait image has been selected to appear on all major ‘HOW DO YOU C ME NOW?’ publicity materials in the buildup to the exhibition launch in March 2019. For more information please click here.