Spotlight: “When I’m working with polymer clay I can forget for a while about the pain…” ~Alexa-K
Today’s spotlight feature is about a very special woman, with an inspiring story.
Alexa Kazashinskaya is originally from Russia, and now lives in Belgium where she receives medical care for a rare and painful condition known as Dystrophic Epidermolysis Bullosa.
What is remarkable about Alexa’s story is, even though there are many obstacles that could keep her from working with polymer clay (lack of supplies, no other clayers around, a very painful disability), she continues on with her art. Learning new techniques. Improving all the time.
I am extremely impressed with her, as I know you will be too, when you read what she has to say.
Related links for today’s Spotlight: 1) Variegated Rose Beads; and
2) Torn Paper Watercolor Technique
Since English is a second language for Alexa, she said it would be easier for her if I sent a list of questions that she could respond to. So, here is the result of our fun little Internet Interview…
CINDY: The Web does a wonderful job of connecting polymer clay artists from all around the world. Please share a little about yourself and where you are from.
ALEXA: I’m from Russia but live in Belgium now. I have a disease called Dystrophic EB. I live in Antwerp but I was born in Uzbekistan in Tashkent city. I came to Belgium for my disease. Here is much better for my care.
CINDY: Do you have polymer clay friends in Belgium and Russia that you communicate with or meet with on a regular basis?
ALEXA: I have a home nurse and she is also working with polymer clay. And sometimes she comes to me to do something together. I do not know anyone else who does polymer clay.
CINDY: What challenges do you experience in obtaining the polymer clay tools and supplies you need for you projects?
ALEXA: Polymer clay in Belgium is not popular. That’s why it is very difficulty to find different types of clay or tools here. In a normal store can you only get Fimo and no other brands. Otherwise you must order from another country.
CINDY: What got you started working with polymer clay?
ALEXA: I’ve seen Polymer clay work on the internet and I wanted to try.
CINDY: What inspires you the most about polymer clay?
ALEXA: You can do anything with polymer clay. And certainly jewelry.
CINDY: Have the video tutorials at the members library and the articles at the community blog been helpful for you in learning about new polymer clay techniques?
ALEXA: Yes of course. I’ve learned a lot from your videos. Thank you so much for that. I appreciate what you doing!! You give people the chance to learn and be creative with polymer clay! I can read a book, but it is not the same. Your videos are very instructive and inspired for me. I’ve made a few roses from Volume 013. And I love them. They are so beautiful. I send you some pictures of them and of my other projects. The photos are not so well. And the color of the roses is not the same as in real life.
CINDY: What mistakes have you made and how did you learn from them?
ALEXA: I’ve made many mistakes and I still make them. I am now almost one years working with polymer clay and I’m still learning. I have not made much jewelry. Because sometimes I do not feel well and can last for months.
CINDY: You have told me that you have a disability which is called Dystrophic Epidermolysis Bullosa. I had not heard of it before. If you could share a bit of information about this medical condition, that would help to raise some awareness in a positive way.
ALEXA: Yes I have Dystrophic EB. Here is some information. Epidermolysis bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. This condition is not contagious. An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally. All forms of EB are hereditary and most types of EB we now know the gene responsible for the ‘wrong’. This genetic “error” means that the skin cells layer or layers of the epidermis is not sufficient to attach together. This skin is extremely vulnerable weakened, and may in the slightest pressure or friction loosening, with continuous blistering as a result, the typical feature of EB. Pain is always present in EB, but varies depending on the type of EB. Everyone knows about the pain caused by a blister, eg with new shoes. Imagine that you discover each day a new blister, the whole body, just by the pressure of clothing, or a related shift. EB-patients often also suffer from chronic itching in places of healing wounds.
CINDY: How has your disability affected the way you work with polymer clay?
ALEXA: I can not open bottles or do a Clay Extruder use because I get painful blisters on my hands. But there is so much stuff that I can do. And of course everything takes me much longer to do something than to other people.
CINDY: Polymer Clay has been used by many others as a form of art therapy in helping to cope with various disabilities. Has this been the case for you too?
ALEXA: When I’m working with polymer clay I can forget for a while about the pain and itching. But sometimes by the violent pain I can’t working with polymer clay it is very frustrating.
CINDY: What are your future plans for working with polymer clay? Do you feel it is something that you will work with long term?
ALEXA: I don’t know. As long as I can and enjoy it, I certainly go work with polymer clay. But I don’t now my future.
 |
 |
 |
 |
 |
 |
Isn’t Alexa’s work just beautiful! I love how she did the watercolor technique with the translucent and gold leaf in the top layer. Very stunning effect!
Alexa I am very proud of you! I would be happy to be your Tutor for as long as you want to keep learning. You are truly an inspiration to us all!
As well as giving Alexa some feedback about her beads, if anyone else has stories about how polymer clay has played a role in helping to deal with other types of adversities or disabilities, please do post your thoughts in the comments section below. You may just end up sharing an idea, or words of encouragement, that could touch someone in a very positive and profound way.
** If you have been inspired by my teachings and would like to be featured in an upcoming Spotlight Article, then please do write up something creative and email it to me along with a selection of your project pics. Make sure to send me high resolution photos that I’ll be able to zoom in on to show the details of your work. If you don’t already have my email address, simply leave a comment below and I will get it to you right away.
Alexa you have made me cry, your work is a credit to you and i think the shear determination that you show is amazing, keep up the good work you put me to shame when i complain about my pain, and all the very best for the future.
Alexa – I would like to let you know that I have a supply of most clays (Premo, Kato, Sculpey III, Fimo) and many tools (more arriving all the time) – and because I am so delighted that polymer clay gives you such relief would like to offer you 10% discount on anything you buy together will discounted postage , for as long as you wish to buy from ClayAround.
These stories make me realise that life simply isn’t fair!
Penny
Alex your work is fantastic, you are so brave to have to put up with all that pain. I’ll think of you every time I go to complain. Keep up the good work.
Josie
Thank you so much everyone for your support!!!
I am very happy I can share my story with you all.
@ Penny thank you so much for the discount !!!!!!!!!!!!!!!
I’m so glad I can finally try is Premo.
Next year I will definitely order from Premo and other stuf you shop. This year I have enough Fimo in the closet.
I have already register for the newsletters.
And I certainly want to thank Cindy for posting my story!
Alexa, I would really like to send you some extruded clay so you can do use the slice mod canes and extruded flower canes.
Cindy – could you send Alexa my email address so I can talk with her directly about this. Thanks.
ADDED NOTE BY CINDY: What a nice gesture Anna! I just sent an email so the two of you can connect directly. Would love to hear about how this all turns out. All the best! ~Cindy-L
I can’t imagine doing such beautiful work when you have so much pain from blisters. I admire you. You give us all inspiration.
Alexa your work is beautiful, I love your butterfly. You’re an inspiration to all of us. It’s so nice to meet you via Cindy’s blog, please keep us posted on how you are doing, I would love to see additional pictures when you complete another project. I will be thinking of you.
Alexa, your work is beautiful – I particularly like the watercolour beads!
To think you have made such wonderful pieces when you are facing such challenges is truly inspirational. I hope we see more of your work!!
Alexa: You are an inspiration, thank you for sharing your story with us. I also am disabled and use my art as therapy not only for the physical aspects but the emotional ones. My husband is very ill with a rare disease and recently was diagnosed with kidney cancer. He has been playing with clay for the past year. We amaze ourselves daily with how the clay can be an escape from all that goes with being ill. Most of all it has changed how we look at the world. We now see form and color in a different way and it makes each day a special exploration. Thank you Cindy for sharing Alexa’s story with us. I hope she knows that with her story we will be with her in spirit as she walks her path. Namaste to all.
Alexa it is amazing how you can make such beautiful things with such a great amount of pain. As I wipe the tears away, I wish we could take that pain away from you and I pray that they can come up with a treatment that will help you! Your watercolor beads are spectacular, and I absolutely love that butterfly. I know how hard it is to work when you’re in pain – sometimes I can’t even sit at my table to work on my clay. You are truly an inspiration!!
~Lisa
Oh, Alexa, these are such amazingly beautiful things you’ve made!! I’m a newbie to Polymer clay and I simply cannot imagine making such wonderful things within my next year.
I suffer from Post-Polio Sequelae, Myofascial Pain Syndrome, Fibromyalgia, Osteoarthritis, Cervical & Lumbosacral Radiculopathy, Polyneuropathy, Severe Central Apnea…and now Diabetes, which was diagnosed last month. It’s been a struggle–I have to stick myself 4 times a day to test my blood sugar, and because of my other health problems, it’s usually hours before the pain subsides from the stick.
Two years ago my condition had worsened to the point that I couldn’t do any of the crafts I’d worked with since childhood. I was so depressed…and then someone suggested beading, which I can do because the beads are so light. I’ve been making little boxes since then, but a couple of months ago became entranced with polymer clay. Because of extreme muscle weakness, I am only able to play with Sculpey III, and I’d be unable to work at all without my wonderful pasta machine.
Obviously, it takes me a great deal longer to accomplish even the simplest things, but it’s a wonderful distraction to pain, and when I can’t work, I can cruise the internet with the fabulous computer setup my boys built for me, which I can direct from bed. Even then, I have many long days where I must be still, but even thinking about polymer possibilities provides much needed distraction.
My wonderful aide Lorna is now excited about learning to make beautiful jewelry (which is new to me, and would be impossible without my loving daughter-in-law to do wire work and other things that are beyond me).
I’m so grateful, Cindy, for your sharing so much of your talent and expertise, and for spotlighting amazing individuals like Alexa. It really inspires me to keep struggling on. Thank you!
Alexa, Your jewelry is just beautiful, I can not imagine the pain you are in. I do know that polymer clay is a wonderful escape to ease pain, not only physical, but emotional as well. My husband passed away recently and because of his believing in me, I use polymer clay as a kind of therapy to help ease the pain. I hope it does help with your pain. You are in my prayers and keep making your beautiful jewelry.
Alexa your work is fantastic! The watercolor beads are fabulous! I love that idea.
Your story is so inspiring! Thank you so much for sharing. You are truly strong and brave!
Dear Alexa, just wanted to give you a hug!!! I’m so glad clay can let you forget!! CY at SaSSy & Co :-)
Alexa: Your work is beautiful! You are doing much better than me and I’ve been at it much longer. I can only imagine the pain you are going thru with your condtion. But you are managing to do the things you love. That is what we all must do. Do the things we love and keep doing it!! You’re an inspiration
Carrie K: I somewhat relate to you. I also have PPS, fibromyalgia and osteo and apnea! There are many days I cannot even face doing beading or claying. But like you said…at least I can go online and look at all the great info here and other sites to keep my creative juices flowing until I feel up to working again!
Cindy: Bet you did not have any idea how many people with disabilities you are keeping interested in doing something other than sitting around doing nothing…keep up the good work!! Thanks!
Alexa, sharing your story has inspired so many today, what strength of spirit you have! So many have mentioned this already – you have such gorgeous pieces. All the styles are so unique. Love how the watercolor beads have a soft glow. The butterfly is amazing and I love how you’ve designed the hanging pendant beside it as well.
It must have been a difficult thing to invite us into to your personal struggle, thank-you for sharing that courage. You are in my thoughts…I’m hoping you have only days of comfort ahead.
You are an inspiration to us all, Alexa. Your work is beautiful, and I pray you are able to keep making your pieces for a very long time.
Wow Alexa, what lovely pieces! I especially like the butterfly, it’s beautiful.
I’m currently suffering from clinical depression. I’ve had depression before which was much worse and I worked hard to overcome it and got better, so I know I can beat this depression too, it will just take some time.
I also have fibromyalgia which makes me constantly tired and affects my memory and concentration, disturbs my sleep patterns and gives me muscle pain (I’m always at best uncomfortable). I know I’m not as bad as some people, but I’m not able to work at the moment, even part-time.
Claying is something I can do, especially since I got a pasta machine so I don’t hurt my hands conditioning clay, and a rock tumbler for sanding. It’s physically easy and my lack of concentration doesn’t seem to matter – I think creative stuff uses a different part of the brain to remembering to clean the bathroom or pick up milk at the shop!
When you have any kind of disability I think it’s important to find something you can do, something to give you that sense of achievement, because it’s easy to just think you can’t do anything at all.
Alexa, your work is beautiful! I never would have thought to use translucent clay and gold leaf in the watercolor beads! I very much admire your creativity, courage, and determination! Good Luck to you!
Thank you so much everyone!!!!!!!!!!!!!!!!!
Your support means a lot to me!!
The butterfly is the symbol of my disease.
Alexa, your work is just beautiful. You are the Greatest!!!!!! I don’t know how you do it????? Don’t ever give up. With all of that great talent you’ll do wonderful things. All of my other friends from this blog, WOW. Inever thought we all had so much in common. I have clinical depression, fibromyalgia, osteo, tinitus, and on the 22nd of this month i will be going in for back surgury. I have a plate in my neck and now I’ll have a plate in my back. Pain is constant and polymer clay is the only thing that helps, except for pills. Just look at all the great things your doing to help so many people, Cindy. You should be proud!!!! Love Ya All, Honey
Alexa my heart goes out to you and I will put you in my prayers. I’m not sure why but for some reason the only picture that has come up for me is your beautiful butterfly. My wish for you is a cure for your disease. I have fought with a list of illnesses in total of 7 years currently my fibromyalgia and chronic fatigue syndrom have been causing much trouble for me. I had a total remission from both of them for over a year and a half I was so grateful and pray for another remission every day. My last flare up has lasted over 3 years with a med list a junky would love 3 of them being very strong narcotics. But because of the narcotics I have some days I can work with my clay and the feeling is like being in another world where you can just think of how soothing and comforting it is if just for 5 minutes or a half hour. But if I get to tired or sore I can always cover it up and come back to it later that day if I am blessed enough or maybe even the next day. My wonderful husband helps me whenever I need so he knows all to well how to handle the clay and put it away till I am ready for it again. And I agree with all of you Cindy has made this blog and her videos a wonderful place to go when you get down and want a pick me up.
Enough about me back to you Alexa with my fibro I have brain fog and because of this I have some tools that I have purchased more than once. If you would allow Cindy to give me your address I would love to send some of them to you. They just take up room that I need more of in my craft room. So you would be helping me out also.
One thing we both and so many others have in common. We just want and need a hug so much only we know it will bring so much pain we don’t ask for one. So for today I am sending you the kind of hugs my grandchildren so often have to give me it just comes with sound and a beautiful sound it is.
Uuuuggggggs for you, Peggy
@Peggy – what a very kind gesture you have made to Alexa. I emailed her with your contact info and cc’d you, so that two of you can communicate directly with each other.
I am truly touched to see the level of support and kindness that ALL of you have shown towards Alexa. And I’m amazed to learn that so many of you are also dealing with your own pains and illnesses… but I’m so happy to hear that polymer clay is playing a part in bringing some level of relief and comfort in your lives. You are all such a positive, supportive and non-complaining bunch, that I had no idea.
I am very impressed and proud of you all! Taking an adversity and turning it into as positive of an experience as you can. I love having you all here. You make this a wonderful community to be part of! Thank you! Thank you! Thank you!
Alexa do you mind telling us how you textured your red, black and white necklace?? Very nice!
Hi Peggy,
Thank you so much !!!!!!!!!!
(I received your e-mail)
About the texture of the red, black and white necklace. I just rolled them in sugar and then baked. After baking, I put them in warm water so the sugar melts. And I have varnished them. And that’s it.
It vas my first necklace I made.
Alexa: your work is beautiful!! You are such an inspiration to us all. You encourage us to overcome whatever it is that might be holding us back in not only our art, but our lives. Thank you for being willing to share yourself with us. Please keep us posted on your life and your clay/bead work.
Laurel
Hello Alexa, For some reason I missed the blog on Dec. 11th. Today the beginning of a new year, my wishes for you and all the wonderful clay family members are beyond words. I’ll try by wishing you everything that is good for you, physically and emotionally; painless minutes, hours, days and as long as it can happen. The comfort of knowing that you have inspired someone (probably many someones) in sharing your story. That many have taken courage and will try something that they thought was impossible and will find great satisfaction in that effort. Success such as yours, Alexa, is contagious and we will all benefit from it. I hope you have many, many days when you can enjoy your clay and we will enjoy seeing more of your work again. You are truly a blessing to our community. Thank you again for sharing. I love all your pieces but the butterfly is special. Using sugar to texture the red, white and black beads is simply ingenius. You really made all the techniques your own.
Thank you for your concern Cindy! I am now able to access the videos and am really enjoyed them. I am a right hand amputee but hang in there with that darn clay because it is just so fun!!! People like you make it really fun. Thank you for sharing your expertise. Just going to roll that clay now.