Suffering to Thrill: Interview with Myra Ali

A couple of weeks ago, I had the opportunity to meet celebrity interviewer and motivational speaker, Myra Ali. Although she has had the chance to interview top celebrities, like Timothée Chalamet and Spider-Man actor, Tom Holland, it was now my time to interview her.

Myra Ali Epidermolysis Bullosa

 

How did you get into interviewing high profile personalities?

It started off when the charity I work with, Debra UK, gave me the opportunity to interview celebrity chef Jason Atherton. During this event a photographer, who happened to be Tom Holland’s mom, saw I was good and asked whether I wanted to interview Tom. I, of course, jumped at the opportunity and then other outlets started to get interested. My most recent interviews have been on the red carpet at the London Film Festival.  

 

When it comes to your condition, Epidermolysis Bullosa or EB, do you think that has played a role in the opportunities you have received?

Yes, but to an extent. First you have to be a good interviewer and enjoy what you do. Having EB adds to me being a unique interviewer for a publication that normally wouldn’t have anyone with disabilities before. There are advantages - I got to interview Timothée Chalamet at the London Film Festival. He wasn’t going to go to the press section but his publicist saw me and we made eye contact. He approached me and asked if I would like to join them in a different area so I could interview him.

I think being known because of your condition is good as long as it empowers and liberates you from your day-to-day suffering. I have gone through life suffering and now this career gives me joy and thrill. By getting to do something that I love, I don’t think about the possibility that I could get skin cancer, a common occurrence among people diagnosed with EB. This experience alone omits the negative aspects of my skin condition.

Myra Ali Interviewing 

Tell me about your experience with EB:

I was born in Birmingham,UK and I am lucky that I was because one of the only and best EB treatment centers in the UK is there. My parents were very resilient; they had to learn how to clean blisters and change bandages, a huge learning curve for them as no one in my family has ever had EB before.

EB is unpredictable. It doesn’t stop. One day you can wake up with blisters in the cornea of your eye, and another day you can get blisters in your throat and not be able to eat. It is more than just a skin condition. I sometimes can relate to burn survivors more than I can relate to some mild cases of EB because I have had to get skin grafts and operations regularly because of the blisters.

Growing up I had a lot of acquaintances but not that many close friends. I always knew I was different because from a young age, I had an assistant that would come to school with me. After school, I went to Birmingham University where I studied History. I then fell on a solid route when after graduation I landed a job with the NHS, the UK’s National Health Service. I quickly realized that a solid route didn’t mean that I would be happy. I felt quite a bit of depression as I started thinking a lot about my future. I started to think “what if I don’t get married?”


Why was the marriage question important?

My family is from Pakistan. When you come from an ethnic culture like mine, there is a lot of emphasis in marriage. I became very preoccupied with whether I would find the right person. Similar to Orthodox Jews, in the Muslim culture we use matchmakers. I started to realize that that would not be the path for me because I know that disability is not really talked about in my culture, just having a birthmark can be a big deal, let alone someone with severe burns like me. Now that my focus is on my career, getting married is less of a concern for me- not that I do not want to, it’s just not my main focus. I think when a woman has something to focus on and not think she has to rely on a man for happiness, that is true empowerment. 

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