Just this week, I was hanging out with my niece and nephew, and before I left, my nephew was telling my niece “You’re going to die someday” which was followed by her sternly saying, “Excuse me?!” but I was more affected than she was about hearing that. My nephew happens to have a compromised immune system and every trip/checkup at the hospital concerns me as well as his parents. Even though he’s brightly optimistic about everything, the thought of him not living long enough scares even me and I try to make his life as interesting as I can. While he can’t take too many adventures outside of home or the country for that matter, I do what I can to be the weird cool uncle. He has the spirit of my deceased best friend, Robert Ariel Wellman along with one of his nicknames (Ari) and some of his interests. Robert was also pretty optimisitc and friendly and daring even with all the health concerns he had, but I’ll probably have a more detailed tale about him another day. It just pains me how he was taken too soon and I really don’t want to lose another Ari just like how I lost 2 Tom’s, 4 grandparents, and a couple classmates due to natural causes. The point is, life is short, which is probably why I take every opportunity I can and try to make my life as interesting as possible, yet keep it on the down-low, most of the time.
There are lots of fun opportunities in life. But there are some people who can’t get the opportunity to follow their dream before they’re taken away too soon. This is about the children who are sick and don’t get to live long. So it’s important to give them a fulfilling life. Nothing captured one of the greatest moments in life for so many of these children other than what happened in Matter of Time, by Matt Finlin. Over in Seattle a while back, there was a concert where all of the proceeds went into research for curing EB, which stands for Epidermolysis Bullosa, where the skin gets altered by mutation in DNA. The skin gets really fragile and leads to an infection that spreads and reddens. The treatment requires a lot of bandages and bleach baths. But it gets worse, the condition gets into the digestive system and makes everything else more difficult in living. All the medical details made me nervous hearing about this, but much to my relief, research is being done for EB and great strides are being made as hopefully those who have it will heal quickly. The concert was hosted by Eddie Vedder of Pearl Jam while the attendants were patients, doctors, along with their families and friends. Eddie says he was only going to do something like that once but the truth is he keeps raising awareness of this disease because he truly cares. A lot of people get the impression that celebrities secretly don’t care about their audience and just do a facade when it comes to big fans, but you can tell just how much Eddie cares when he takes a drawing from a young fan named Eli Meyer with EB and hangs it in his studio.
But it’s not only about Eddie and his concert, or even the explanation of EB. The documentary dives into way more saying how research and technology seems to be bringing an instant cure. With interviews featuring Jean Tang and Michael Hund who have dedicated their medical careers to solving skin problems like this. The documentary also focuses on some of the children who have EB and are taking trips all the way to Seattle from Colorado, Ontario, and lots of other places. Parents share their stories, what it was raising and adopting their children and how having children with EB has been a nightmare but makes them a special person anyhow. Even I felt uncomfortable learning all these stories, but the fact that people are working hard towards a cure brings hope to my heart. Some of the people featured included Deanna who has become an adult with EB, and despite her condition and being unable to grip anything, she overcame her personal obstacles to learn how to be a painter and makeup artist. And what about the family where two medical parents (Kevin and Trisha Knuth) adopted children with EB and give all the love and care they can to make sure Charlie and Meili have a life of adventure no matter how short? Eli’s story was a bit much with what I heard at first, but I enjoyed seeing how he manages now. It was very sweet and heartwarming to hear that Eddie Vedder called Eli his teacher and even wrote a song about him. I’m going to suggest people take his sister Lily’s advice and greet everyone with respect.
A great way to spread awareness about a disease you may never have heard of, Matter of Time is something you ought to watch and learn about this condition as it’ll take a matter of time to do so, and you may want to be more aware and also provide support in any way you can, whether it be a donation to research or just making friends with someone with EB, because they deserve acceptance. This I can relate to, because as someone with autism, I was classified as weird at a young age, and even my own mother was skeptical about me at first. But if people could figure out how to describe autism as a wide range of colours, then Matt Finlin’s documentary is the perfect way to explain EB and get more people to try and know more about it before it becomes more commonly known. Maybe with our newfound knowledge, we can continue to fight for a possible cure that will save people from having skin that hurts. This was beautifully put together, and if it can amplify a message with this content, then I can also hope the healing for EB can strengthen even more itself. Progress impresses me.
Matter of Time has a Canadian premiere at CIFF. Check out the screenings September 26 & 28