Archive for February, 2017

Rare Disease Day 2017: Reaction to EDS Video by AJ+

Tuesday, February 28th, 2017

February 28 is rare disease day. Well okay, technically February 29 is rare disease day, but as we members of the rare disease community aim to be noticed more than once every four years, it is usually observed on the 28th). Usually this is a day for both reflection and awareness, during which people like me – a 30-year-old disabled man with the connective tissue disorder Ehlers-Danlos Syndrome (EDS) – can enjoy some much-needed attention to our generally overlooked cause. On this Rare Disease Day, however, I was confronted with a devastating video created by the website AJ+, a site which claims a mission to “share human struggles.” Instead of promoting understanding and solidarity, however, this video instead contained an eerie sense of voyeuristic aspiration.

“DISABILITY OR SUPERABILITY?” the video grandly opens, then proceeds to show various impressive contortionist feats performed by people with EDS. And although the video does eventually discuss the horrific state of chronic pain and injury that are all-too familiar to us EDS patients, the overall clear message of this video, with its myriad of amazing circus stunts, is: “Wouldn’t this disease be so cool to have??”

I would have cried from anger if I hadn’t already been crying from pain. The way I have cried every day for nearly half my life.

Yes, we EDSers can often dislocate our joints at will – though more often they dislocate on their own with no help from us – but when they do, it hurts every bit as much as it would hurt you. Have you ever seen those movie scenes where someone (usually Mel Gibson) dislocates his shoulder, and he screams in agony? That is what our lives look like every day. It is not a fun trick: it is quite literally hell.

In spotlighting and glorifying these acts of contortion, the video also inherently promotes these acts, which are in fact grossly dangerous for most EDS patients to attempt as they can lead to permanent injury and/or accelerate the degenerative pathology of the disease. In other words, fellow EDSers: do NOT try this at home!

But the video got one thing right: we ARE superheroes. Not because we can contort ourselves, but because we wake up every single day determined to try again. Because in spite of our monumental struggles, we try to live a live filled with meaning and any hint of normalcy we can attain. The odds are stacked against us, but as people with a rare disease we have never been ones to place our faith in odds.

We pray for a cure, or at the very least for any medical advance that will make our lives more manageable. But this will never happen if the world thinks that our mutations turn us into the X-Men. Because at the end of the day, we are just people. We don’t need hero worship. We need understanding. We need support. And above all, we need love.

Thank you, from the bottom of my heart, to every single person who has given me those three things. In every sense of the word, I would not exist without you.

Christianity Demands the Acceptance of ALL Refugees, Not Just Christians

Monday, February 27th, 2017

I just heard a commercial on (of course) Conservative Radio that made me very sad. This is (approximately) what it said:

(Sad piano music. A soothing but emotional female voice speaks:)

“The refugee crisis in Syria has reached devastating levels, and it’s easy to feel overwhelmed and that there’s nothing you can do to help. But did you know there are CHRISTIAN Syrian refugees? These Christians have no home, and very often no food and no water. They are starving, and their children are starving. Please help us save these Christian Syrian refugees, to get them sustenance and safe passage to a better life.”

All I can think about is: why do they have to be Christian for Republicans to care? Can you imagine that same commercial running on their radio station to allow the starving Muslim children to have “safe passage to a better life”? No, that commercial would not exist on that station. I’ve heard the commercials they DO have about Muslim refugees, and there’s no sad piano music. It’s the psycho theme song as the “In A World” voice tells you to call your representative to keep these Muslim refugees the hell out of here, including babies and orphans.

Jesus said “love your fellow man as you love yourself.” He did NOT add “…but only if they are Christian.”

He said “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to them.” He did NOT add “…unless they also believe in Muhammad.”

“Be hospitable to strangers,” and “Welcome strangers the same way you would welcome Christ.” There is no addendum stating, “…unless you are afraid of them, and/or if you decide that the crimes of a few belong to the people who are FLEEING that few.”

This callous hatred and hypocrisy of too many Christians is exactly what Jesus came to preach against. If there actually is a Hell, and they end up there for this, maybe they will finally understand what it’s like to be a Muslim Syrian refugee.

Not Too Far From Here

Tuesday, February 21st, 2017

Like so many, I have been devastated to witness the recent uptick in incidents and words of hate against many groups of people. I believe it is crucial to stand up against such hatred. But I also believe, as Hippie-ish as it sounds, that the only thing that truly trumps hate is love. We can and must stand up to defend people from discrimination, but the only real way to counteract a hand raised in anger is to offer our own hands in peace, solidarity, help, and understanding.

In this spirit, I wanted to offer my performance and arrangement of my favorite song on this topic, ‘Not Too Far From Here.’ The introduction is a song I wrote called ‘Queen Esther,’ in memory of my grandmother, Esther Bates, who escaped the Holocaust and subsequently lived her life to help others. The great Lisa Willson was gracious enough to lend me her incomparable vocals, piano, and concert venue to perform this song.

I am not naïve enough to think that music on its own can create the kind of change the world most needs – but my hope and prayer is that it may provide an inspirational soundtrack for the loving deeds of true heroes.