On Becoming a Designer….
Becoming a Designer was not a straightforward path for me, but more of a calling from within. I was born in Sri Lanka, but adopted to Sweden when I was two months old. So, I guess you could say I am a mix of eastern and western cultures, even though it is a very cliché way of defining oneself.
I was raised in an industrial city called Malmö, located in the south of Sweden. Fashion and designing was not something that anyone did around me when I grew up, but it somehow always attracted me. Many years later I found out that my biological Mother was a designer for Saaris in Sri Lanka. So, in some ways her creative gift was passed down to me, which I am very grateful for; And everything I design sort of stems from her. Even if I never had the pleasure of meeting her after my adoption, I am happy she lives on through my creative work.
I was never attracted the branding obsession of this industry, but more towards the art of illustration, and the craft and artistry of designing itself. I still consider myself to be an introvert artist, that would prefer to sit alone with my art and let others deal with the outside world. But that rarely happens anymore, as life gets in the way.
When I was 17, my design career began after a quite traumatic experience. I became paralyzed in my entire left side at the age of 16. I was then diagnosed with MS (Multiple Sclerosis). This was a wake-up call to not take life for granted, nore the time I have left on this planet. So, I changed academic course from science to fashion, and I have never regretted that decision.
During my early twenties I was privileged to work in many countries like Italy; UK; Greece; and Cyprus, with Fashion and Entertainment. I had daytime jobs in the industry, and freelanced on the side. I struggled with my identity and whom I wanted to be in this world. My upbringing could be described as quite dark, but it did program me with values. Human values.
When working in the fashion industry, I found myself biting my tongue and compromising on who I was, and my values; just to be able to work with what I loved. I also had to hide my MS, as I knew that nobody would hire me if they knew back then. It was very challenging on many levels, and in the end, I could just not be a part of this industry anymore.
An industry that replaces humans after wearing them down like an old garment; An industry that for years have not taken any responsibility in the environmental impact that its production processes has had on this planet; An Industry that treats human lives in the factories that produces their garments as caged animals. What is there to love about that? I just did not want to benefit or be a part of that evil wheel anymore, so I left.
On deciding to come back…
I started a family in my early thirties, and got two beautiful boys that were later diagnosed with ASD/ADHD spectrum diagnoses, as well as beeing very gifted. Later on, I understood that I had been blessed with two wonderful children with 2e (Twice Exceptional) diagnoses, and still struggle to this day to find a school that fits their needs. I quickly became aware of how truly awful this world can be that I had brought them into. I feared the challenges they would face when I was no longer here to help them, if the world didn’t change into a more understanding and inclusive place. So, I decided to make my legacy to them greater than what I was currently leaving behind; and affect the world best positive way I could. I decided I would use what was in my power to make society more inclusive; I just did not know exactly how at the time.
I went back to the University and got a degree in English and Linguistics. I built and designed my own house with the children’s father, and settled down. But in the process of building our house, I realized how much I missed designing and the creative processes that it involves. I had no desire to go back to the industry I left behind at that time. I realized that it would be hard to teach an old dog how to sit, and I didn’t want to surround myself with people in a workplace, whom did not share my values on inclusion. It would just drain me with energy. But was there another way?
So, instead of trying to change the current industry, I decided to create a sub-world when creating Storiebank. Since it is a new world, there are no old norms molding the creative output. But, it is a world where everyone is welcome that shares the creative vision on Inclusion;Multidimensional beauty; and Social Sustainability beeing the keys that will move us all forward. It is fully understandable that far from everybody is ready for such a change. But, I am tired of raising children in a world that is turning colder by the day. I am tired of seeing dreams shattered in the most creative and amazing minds because socially constructed knowledges and prejudice minds have decided that some don’t belong.
I say we all do. Representation matters, and Storiebank here to offer a new path, and a creative haven, to breathe and exist in.
On health setbacks…
Storiebank has taken form in my mind since 2011, when my first son was born. But as many know, the first years with children are tough and leaves very little room for anything. After giving birth, my MS and general health deteriorated. I had trouble walking and my fatigue was draining me. The stressful life of being a Special-Needs Mom, with all that such involves, did not help.
Eventually, my legs gave up completely, and I ended up semi confined to a wheelchair. I was able to walk 80m in 3 min on a good day, and some days nothing at all. The dream of designing again was far away from the reality I was living. I was unable to dress myself; eat;or take care of my hygiene. I was in need of a Carer for both me and the kids, but the government refused to provide us with one. The situation was dark, and I remember some days literally crawling out of bed to make breakfast for the kids. I was at the bottom of life, and tossed around in the health care system where nobody understood how bad things were or cared. I was terrified to lose the kids. But I was starting to prepare for death, as life was slipping though my fingers and I was not sure how much longer I could hold on.
But then I decided I had to try to do something radical, so my kids would know I did everything I could to change the situation. In 2017 I decided after having waited unsuccessfully and in vain for years in Sweden to qualify into a HSCT/Stemcell treatment, to get one done abroad.
I was strongly advised to not to go by the Neurologists in Sweden, and I sadly heard various prejudice and harsh comments about treatments abroad. However, being stubborn and trusting my inner voice, I found an HSCT treatment (Stemcell) at Clinica Ruiz in Mexico (hsctmexico.com) that specializes in HSCT for MS, and decided to go anyway. In October 2017 I left for Mexico, not knowing if I would ever return. In my head I though it was better to die on the other side of the world trying to get better, than to slowly fade away in front of my childrens eyes. Although, once in Mexico I changed that thought; and the day I die in the future I would want my loved ones near. Luckily it was not my time to go.
After a month of intense chemotherapy treatment that figuratively speaking wiped out my harddrive, followed by a stemcell injection (derived from my own blood) I was reborn.
I was able to go home and hug my children again. I swore to never leave them again, and since then I have stayed by their side. I am lucky to have a fully functional life with them today, with very little MS Symptoms compared to before.
The treatment is meant to only halt the MS, but mine was reversed which luckily happens in some cases. I started out on an EDSS scale (1-10) of 5.5 and Secondary Progressive MS Pre-treatment, and went down to an EDSS 3 after six months, and EDSS O after a year post-treatment. I have been lucky to remain at an EDSS 0, with very little to none MS symptoms to this day.
I could walk again which was a miracle, and all my pain was gone (I used to also have Fibromyalgia and Arthritis pains 24h/day parallel to MS). Although the treatment was one of the worst things I had ever experienced, it saved my life.
A year after the treatment, I discovered when studying MRI images and Neurolinguistics at the University, that I also had a PVL (Periventricular) Stroke lesion, that occurred at the same time as my aggressive MS; and was present during my HSCT treatment. This is currently beeing legally processed in Sweden, weather it was misdiagnosed and neglected or not. So, I have waited until my medical case was reopened by Clinica Ruiz in 2019 before I went public with my recovery. I wanted to make it clear to myself and the MS and Neuro community what I had recovered from, which was MS. Due to the lack of scientific research on Stroke and HSCT, my case so far has been unable to help or initiate any further clinical studies on Stroke and HSCT. However, I can only state that I suffer from none of the symptoms today from eigther diagnoses; But that is entirely my own personal opinion.
My lesions in the brain have remained the same as before the treatment (just no longer active). Lesions are like little scars on the brain that never goes away, and are caused by small bleeding’s in the brain, due to the MS. At this point I am lucky they have remained passive. So, the result of the treatment is that it has halted the MS, and improved my health significantly. I got a second chance at life, and I am so very grateful for that.
Although, in this story, I do wish to highlight that this recovery is not a universal result for everyone whom undergoes HSCT. The treatment is meant to halt the MS, and improvements are to be considered as bonuses. It is a very tough treatment, so I would advise anyone whom considers doing it in Mexico to carefully study the procedure, and to consult Clinica Ruiz (hsctmexico.com) to find out if you are eligible for the treatment. Some people die of Sepsis post treatment, and some have to abort the treatment halfway through because the body is to weak from the chemo. It is important to know the risks as well as the benefits, as everyone reacts to the treatment differently. I was lucky, and fortunate in so many ways. I was fortunate to have the financial ability to get the treatment done as well. I really wish everyone with MS would get the opportunity to choose. It is a cruel illness that takes away everything from a person. I am praying that this will be offered to everyone with MS in all major hospitals in a near future.
In the chemotherapy room in Mexico, I spent hours with an IV stuck in my arm while the chemo was slowly killing every cell in my body. Everyone had their loved ones there by their side in that room. I was alone. The children’s father had to take care of the kids back home, as we had nobody to help us watch them for a month, or even for a day. The government denied us any help, so it was us against the world.
I felt alone and weak. I slipped further and further into a dark place in my mind. But then I remembered something that had always been with me and never left me, and that was my creativity. I was no longer alone in that room. So, I began to design and draft in the chemo room. I started drafting on a fashion show in my laptop, and I said if I get out of here alive, I will produce this show. It kept me alive and not vomiting constantly, or having a nervous mental breakdown.
During the first year I did a lot of physiotherapy, and my PT Anders Nilsson, at (www.sund-rehab.se)had never seen any recovery like this before. I was so fortunate to have him by my side to help me in my recovery. We set up an exercise goal for me that in one year I would try to play Handball again (if only, for two minutes). I used to do this before my MS broke out at the age of 17, so I always felt I wanted to go back to finish it. I had more to give, and I loved the game even if I am rubbish at it. So, in one year I started to play senior amateur Handball, and two of my old teammates from my teenage years joined me. And after one season I played my first game in twenty years. So, I guess you could say I got my revenge on my MS!
Post HSCT life…
I am now at the beginning of a new journey in my life, where I give birth to Storiebank. I wanted you all to know my story, and where my designs stem from. Also, from where I began and where I wish to go. Even if it ends with one collection, it is not the success that drives me. I am not scared of failing, instead I am so grateful that I get to do this again. The joy is greater than the fear.
I want to give more people the chance to be a part of this journey in the future, regardless or Age; Religion; Gender; Race; Sexuality;Disability or if you have Children with Disabilities/Special-Needs. I, if anyone, understands that such situations requires flexibility to be able to work, and I wish for Storiebank to grow, so we can hopefully be that place where we make room for new creative talents; that would otherwise be stuck inside brilliant individuals.
If anything, etleast I rose from darkness and death and came into the light. Stronger, and as a better person. The mere attempt to start Storiebank will be a legacy to my children. They will know I stood for something, and that my love for them is greater than life.