When God Sins on a Sabbath

I have followed the work of Retina Foundation for many years now. At one point I accumulating several binders of articles on their progress on potential cures that I would print off of online publications. I did this until the organization got a Facebook presence which keeps followers very well updated. I never miss an update.

On a Thanksgiving day, their latest article hits my newsfeed, and I feel particularly grateful to these unrelenting soldiers of research especially because the world knows little about what they do. Their work is personal to me, my siblings and I having been raised by a mother with total blindness caused by Retinitis Pigmentosa (RP). My father has carried the light for both of them for well over four decades.

The Retina Foundation works to someday bring light to a darkened world, literally, by finding a cure for Retinitis Pigmentosa. RP is a rare genetic condition that progressively leads to total and hitherto irreversible blindness. The darkness creeps in over time like a narrowing tunnel as the retinal cells break down. The condition has a very low public profile because the percentage of those affected isn’t that large. But one person with RP is one person worth fighting for. Those living with RP are scattered across all continents.

I remember the Ice Bucket challenge that catapulted Lou Gehrig’s disease into global limelight, providing much needed funds for research into a little-known disease. I wish every silent soldier in unknown battles had their ice bucket moment.

The latest gains made in RP are in gene therapy, a controversial area that also presents a lot of hope, reminding me that no cures come without controversy. A biblical incident is recorded about the Pharisees plotting to kill Jesus for healing a man on a Sabbath. Imagine that. Our present-day attempts to alleviate human suffering are equally rife with attacks from pharisaic authorities that decide who lives, who dies, when anyone gets healing.

If half the population were blind and it served the authorities to have blind followers, said authorities would use all the power at their disposal to keep those followers blind. If gene therapy or stem cell research shows promise, they would shut it down on account of interfering with god’s creation. I do not do too well with theologies that parade cruel deities. Any god who makes a human being blind “for his glory” is not my friend. We’ve got to create better gods.

But we’re grateful for those who dare to carry out “Sabbath healings” that involve confrontation with established powers; those who choose to see the suffering of a minority as deserving of the greatest fight and inclusion into a world they’re often locked out of; those who refuse to say of a situation, “there is no cure”, and instead march on through countless days, months, years of research fueled by hope. We’re grateful to those who never see failure as a setback but as a block to build upon; and to those who keep funding struggles without counting the stumbles.

First posted on Thanksgiving Day, November, 17 2017

Leave a Reply

Your email address will not be published. Required fields are marked *