Thursday, 14 November 2019

Interview with ME activist Jessica Taylor-Bearman

Jessica Taylor-Bearman spent her entire teenage years hospitalized, bedridden, unable to move, speak, eat or interact. 

and at the age of 15, she was hospitalized with the most severe form of Myalgic Encephalomyelitis (M.E) 

Jess would not give up and was determined not to let her illness stop her. Having always enjoyed writing, but she couldn't even speak let alone write yet she made a conscious decision to write using her mind.  When again finally able to speak Jess began using an audio diary named "bug" to express her stories & thoughts. 



In 2009, Jess realised that through balancing a paintbrush in her hand, whilst laughing it would cause the paintbrush to create movement.

This created a completely new art form that she later went on to call a 'Laugh-O-Gram'. All of Jessica's laugh-o-grams have been exhibited, her first being in Canterbury's Art Festival back in 2009. 

Having realized how lonely & isolating it can be to be a young person suffering an illness she established the charity "Share a star" to help put a smile on seriously unwell youngsters faces & make them forget about their troubles for a while.

Share a star It is now a registered charity that Jess has continued, whilst also inspiring millions of online followers with her blog titled "The World of One Room" she has also created a YouTube video that reached tens of thousands of people in multiple countries and has been featured in a film called Unrest a documentary about raising awareness for chronic fatigue syndrome. 



Jess's lifelong ambition was to one day become an author which she finally achieved on the 3rd of July 2018 when her memoir "A girl behind dark glasses" was published. Jessica is currently writing a sequel to her first book about life outside the hospital, her wedding & newest addition to her family little baby Felicity. 

Jess was kind enough to take the time out of her busy schedule to let me ask her some questions about her life living with M.E which I am so grateful for & I hope you all appreciate the effort she went to in order to do this. Here are her replies I hope you enjoy reading through them as much as I did. 



Q1: What's the main thing you hope people will be able to take away from reading your book? 


A: I really want people to see the human spirit overcoming adversity. There is so much suffering, but there is also so much hope that was instrumental into me being able to write my book.


Q2: How helpful do you think social media Is at raising awareness for M.E & other misunderstood conditions? 


A: Social media has been an absolute necessity for me. At first, it enabled me to speak to other sufferers, and then when I started my activism through my YouTube video The World of One Room and a Facebook page with the same name, I found it really raised awareness and helped us to be heard.


Q3: The average age to be diagnosed with ME is from your early 20s to mid-40s do you think more could be done for young people suffering with ME? 


A: There needs to be so much more done for young people suffering from ME. When you are an adult, you have more scope to make decisions for yourself. When you are a child, the first ‘help’ I received was a truancy officer who came to make sure that I was really ill. To start off with such a mistrust of the medical profession is not good and leads to so many problems.


Q4: What is one thing you wish people understood about ME? 



A: I wish that people understood that M.E. sufferers are really suffering. It affects every aspect of living. Most people are doing everything to survive and some are just existing.


Q5: What one wish do you have for people suffering from ME? 


A: I really wish that there is biomedical research into M.E. that would give hope of treatment for M.E. sufferers.




Q6: After finding art was a good tool for distraction do you think art therapy should be recommended to ME patients? 


A: I definitely think that art therapy should be used for M.E. patients but I particularly like laughter art therapy. Being able to create something that is universal and doesn’t require any skills. I mean I was not an artist before I tried painting! I think that Laugh -O- Gram workshops is something I will look to do more of.



Q7: How important do you think it is for documentaries like unrest to be made & showcased? 

A: it is essential that there are documentaries like Unrest and Voices from the Shadows to depict the full level of suffering that M.E. patients go through. It is instrumental to promote change.



Q8: How was your experience with education after being diagnosed with ME? 


A: Sadly, my experience of education was poor after being diagnosed with M.E. I had to stop going to school pretty quickly and the hospital school only started to take notice when it was too late and I was unable to speak or move. I desperately want to learn but it is hard. I started a degree but could never finish it. I am now a 28 year old with no qualifications...



Q9: A lot of people with ME feel lonely or isolated do think doing charity work has helped you feel less alone? 

A: M.E. is a very lonely disease. You are isolated from society in a way that doesn’t happen with any other disease. I find being able to talk and support other families facing problems with health, makes me feel like I’m achieving something and I’m connecting with people, which is important.

Q10: What is one piece of advice you would give to any parents who have been diagnosed with me? 

A: The one piece of advice I would give to parents is to listen to your child’s body. Always remember that you know your child best. 




Links: 
Jess's website: http://www.jaytay.co.uk/










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