Five years ago Sari’s world was turned upside down when she was diagnosed with Guillian Barre Syndrome. Within just a few short weeks she went from being a healthy woman living in Manhattan to lying in a hospital bed paralysed from her head to her toes.
Despite everything she has been through Sari – who also suffers from extreme chronic fatigue syndrome and has full feeling, just not movement in all her limbs – musters the strength to not only engage her 9,300 followers with her skincare posts every day but she refuses to let her illness define her.
‘It’s been the hardest and the most challenging time of my life’
“Prior to life with paralysis and living in London where I am now, I had been living in Manhattan for 16-years,” Sari explains. “I initially went to study my undergraduate and masters degree in art and shoe design. Something which now seems a lifetime away since I can no longer draw or write. I stayed in New York to work until I became sick on New Years Day 2014.”
‘I was paralysed head to toe’
“I was 35 years old. I went into hospital with pneumonia and contracted hospital borne campylobacter, a type of bacterial food poisoning. Three weeks later while I was feeling better the doctors asked me to get out of bed and walk down the hallway. While getting up, I collapsed to the ground and rapidly felt my body giving way. I tried to move but I couldn’t. Within 24 hours I was paralysed head to toe, my speech was affected and my eyes were paralysed too.”
Sari was diagnosed with Guillan Barre Syndrome – an autoimmune disease which can be triggered by infections such as food poisoning – but she still had hope she would recover.
“Doctors told me there was an 85% success rate and with vigorous rehab, I should recover within 18 months,” Sari says. “I was transported back to the UK where I spent a total of 10 months in hospital. But by month four, we knew I wouldn’t fully recover so the focus was on making the best use of my limbs that did work.
‘Life as I knew it was gone’
“I can now move my arms and upper body but unfortunately never regained full function in my hands. I also needed a lot of mental help since I was in a deep depression and felt very suicidal. Life as I knew it was gone.”
While fighting to come to terms with her illness she also developed grade 3 cystic acne, a serious type of acne where stubborn and painful cysts develop under the skin, and it was this which turned her to Instagram and the start of her skincare journey.
‘I am sure that I am going to learn more as my journey continues’
“I wanted to to learn more about skincare, meet other acne sufferers and share my skin story. After some time, I realised with my dermatologist that my acne was related to my illness so it was something that was going to come and go for the foreseeable future. I needed to find good skincare to support my skin and subsequently supplements.
“Acne is very emotional and Instagram allowed me to air my emotions without being judged. At the same time, I began to talk to about my paralysis and much to my surprise, I was met with the most overwhelming support. The skincare community on Instagram is very unique and it’s filled with the most genuine, kind hearted people that make it an easy audience to open up to.”
‘Life is full of challenges’
While building her community and her confidence Sari also bravely began taking more photos, writing reviews of products and making helpful skin care tutorials which garnered overwhelming support.
Although she needs a team of people round the clock to help her since she can not walk or stand she was determined to take her beauty regime into her own hands.
“The one thing I’ve mastered on my own is my skincare routine (although sometimes I have to get mask jars opened for me cause those things are b****),” she says showing her humorous side. “But I made a real effort to be able to do my routine on my own, since I need and want that time to myself each day.
‘Throughout the process I must remember to smile’
“I love learning first and foremost and Instagram is a wonderful platform to learn. I’ve made great connections with likeminded people that I really value so much. It allows me not to dwell on my paralysis (I don’t do this so much now but I certainly used to dwell on my issues a lot and it was a great escape).”
And learn she really has. Sari has an incredibly knowledge of skincare and we most definitely wanted to get her expert take on her favourite beauty products and trends.
“I have so many favourites but in truth I really love a good cleanser! My 20-30 minutes at the end of the day where I get to spend the time taking off the days grime and pollution, the best part for me is cleansing. It’s functional but sensory at the same time and there are countless good ones out there. I’m also drawn to a very good mask.”
‘Lumity has helped my energy phenomenally’
We were thrilled that Sari also discovered the benefits of Lumity Day and Night Supplements for her hair loss and fatigue too, especially since she was a self confessed ‘sceptic.‘
“I have certainly read a lot of studies that supplements don’t do much, just eat a balanced diet and you will get the same benefits. But I was going through a very stressful period late last year and my hair loss was quite scary. Within two weeks of take Lumity it halved which was miraculous. I obviously need help showering with my paralysis and my carer couldn’t believe it either. I bought her some too and it’s the same thing!
“But more than anything the help with my energy has just been phenomenal. Insomnia is a huge battle for me and while they haven’t cured it for me, they definitely assist and I’ll take whatever help I can get!”
‘I wish home microneedling would go away’
When it comes to beauty trends Sari has some views about which ones will come and go and which ones she wishes would vanish.
“I think there will be a continuation of antioxidant therapy, whether that’s topically, in supplements or injected via mesotherapy. People are still just realising the importance of antioxidants not just for beauty but health too and brands are tapping into that.
“I don’t think we’ve seen the end of cannabis beauty, and more at home gadgets either. For example, this year we will see a rise in home LED treatments.
“I wish home microneedling would go away though. This really should be left to the professionals who are trained to do it. “The regular person isn’t, opening them up to the opportunity for staph infections and wounding their skin.”
‘I have a tough time with the concept of beauty’
It’s clear that no matter what life throws at Sari she will fight it and her passion for skincare is only growing but because she is confined to a wheelchair she admits she still struggles with beauty being empowering.
“I have personally had a very tough time with the concept of beauty since I became wheelchair bound. I still battle with the idea that someone can look at me and find me beautiful in the chair and I’m not sure how I can get over that. I know it’s not true because I see other wheelchair bound people that I find stunning but it’s my own personal battle. That’s why I never let people take photos of me in my chair, only waist up. I hope for that to change and to feel empowered by it one day.”
For now Sari will continue her fight. She says she would love to use her voice to help newly young paralysed people see there is hope and insists that while it is often not easy to smile or be happy she will do her very best to try.
‘The power to change my life resides in me’
“Life is full of challenges, whether physical or mental,” she says. “I choose not to be defined by those challenges or my illness. Instead, it is what I do with these challenges that will define me and strengthen me. Throughout the process I must remember to smile. I often forget this and can let my anxiety get in the way of things, I am trying to work on this.
“It’s not always easy to be happy, trust me, I know this. There are days where it takes a lot of hard work, inside I’m kicking, screaming and swearing, and happiness seems near impossible. But inherently, I believe the power to change my life and create happiness ultimately resides in me and by surrounding myself with positive people who lift my spirits up.”
If Sari’s story has inspired you then you might also like to read why Georgia Van Cuylenburg says losing her hair was the best thing to happen to her and the determined grandmother of seven who won’t give up on fitness just because she’s almost 80.