Fishing for Answers
January 8, 2013
by Mark Dunning
Here is something I wrote several years ago about a vacation with the family:
Taught the kids to fish yesterday. I didn't think they'd enjoy it, but they really did. I also thought that I would. I didn't. They spent five hours fishing. I spent five hours undoing tangles and pulling lures out of trees.
Here's a sample of how it went:
Bella nearly takes my nose off with her backswing then casts about six inches in to the water. Somehow in the process of casting to the edge of the dock she manages to tangle 375 feet of line. She looks like she's got a possum clinging to her rod. While I track down a machete to hack through the knot, Jack starts screaming excitedly that he's caught something. He has. It's a maple.
Fix the tangle. Catch and release the maple. Jack immediately goes double mocha latte with a shot of expresso bananas because he's caught something. He has. It's a rock about twenty feet from shore. Bella tangles her line again, this time netting the dog in the cocoon. With the rod strapped to her back the dog looks like a giant black caterpillar hanging from a twig.
Free the dog. Get the kayak and row out to catch and release the rock. While I fight with the line and curse under my breath, Bella bounces her lure off the kayak. Twice. I'm taking heavy fire. Fortunately her weapon jams when she tangles it again. I free Jack's line and he instantly reels it in while the lure is still in my hand. He goes triple Christmas morning with happiness because he's caught something. He has. It's my thumb.
Bella gets frustrated with my delays in fixing the tangle and insensitive bleeding. She decides to fix the tangle herself by shaking it really, really hard a few times. When she's finished it looks like she's holding a wad of cotton candy.
Row to shore. Administer first aid to myself. Take a quick blood transfusion then get to work on Bella's line. Jack casts and immediately begins to squeal with rapture. He thinks he's caught something. He has. It's my sweatshirt. Fix the tangle. Catch and release the Under Armor.
No luck with the lures. Try worms. Add the bobbers. Change the hooks. Jam on the wriggling, slimy worm. Jack coos over how cute the worm looks then launches him. Bella refuses to fish with that on her line. Remove the worm from Bella's hook. Remove the bobber. Replace the lure. Feel the slap of worm against my cheek as Jack winds up to cast again. Nearly lose an earlobe in the process.
After about a half hour of bonding with a soggy half dead worm, Jack is having second thoughts about using live bait. He starts to cry over the worms suffering. Catch and release the worm.
While Jack releases all the live bait in the woods, Bella finally has a strike. Pull the line in by hand because she's tangled the reel. It's a trout. It's little, but it's a fish. Bella thinks it gross. Jack thinks it's an injustice that he hasn't caught a fish and starts to cry. Catch and release the fish.
Bella throws gas on the fire by trying to make Jack feel better. Jack is red and soggy with jealousy. Then he gets a strike. Check the tree, the rock, the dog, my shirt, my thumb. Nope. It's a fish. It's really a fish. Reel in a bass. Jack beems. Remove the hook. Catch and release the fish. The kids bicker about which was bigger. Jack claims bass are better. Bella says she caught hers first. The sun goes down. Daddy doesn't cast once.
And they say fishing is relaxing...
By my count, there are no less than six critter references in this story. Not to mention the fact that it takes place in a cabin in Maine where bald eagles nest and deer bound across the driveway. Animals and wildlife play a big part in my life. I’m an animal lover. Always have been. I don’t hunt and, as you can tell by the story above, I don’t really fish. When I was little, I raised rabbits. For show, not for meat or fur. I sold the babies to loving homes. I had the best mini-lop in the country one year (that’s a type of rabbit and, yes, I am humiliated admitting it. Thanks for asking). Today, we count two dogs, two chinchillas, a love bird, and a mother-in-law (kidding) as part of the family.
So what has this got to do with Usher syndrome? Well, everything, really. You see, here are the steps to developing treatments for just about any disease, including Usher syndrome:
Laboratory
Animal Model
Human Trials
Accepted Treatment
It’s that second one that’s the sticky point. We learn a lot from animal models. In the case of Usher, the learning usually involves viewing the cells of the retina from an animal model under a microscope. I won’t sugar coat it. The animal doesn’t usually survive the procedure.
Sometimes these animals are slimy and gross like zebra fish. Sometimes they are cute and cuddly like baby mice. Or maybe you have a different view and mice are gross but fish are cute. Everyone draws a different line between vermin and huggable. You’ll recall from the story above of my then 7-year-old son wailing uncontrollably over half a worm. He named the one on his hook wormy before he scurried in to the woods to ‘free’ my $5 worth of bait.
Yet animal testing is critical to finding treatments for two reasons. First, the lab work is really just a hypothesis – “I think X might help stop the disease”. That hypothesis then needs to be tested and refined and the results documented in detail. Science is trial and error. Different drugs, different delivery methods, different doses need to be tested to eliminate those that don’t work. And most of them DON’T work. So you simply cannot ethically skip straight from the lab to humans because the vast majority of those tested would be at risk. We need an intermediary between the hypothesis and human subjects.
The second reason is even more ethically difficult. To know if a treatment works, especially cell specific treatments, you need to be able to remove those cells and examine them in minute detail. And not just one cell, but thousands of them. The sample size has to be large enough to ensure that the results are not simply a statistical anomaly. Surgery to retrieve the cells is not an option in most cases because it’s expensive, it’s dangerous for the animal (imagine eye surgery on a tiny fish), and it might leave the animal with a vastly diminished quality of life. And, yes, I am aware of the fact that many of these animals often already have that by nature of the testing. That’s the point, right? This is an ethical minefield. So, in the end, it is usually best to put down the animal to get the cells. You can’t do that with human subjects for obvious reasons. Just the thought is sickening.
Needless to say I’m torn on the whole animal testing thing. I like to think that the animals are treated as humanely as possible. There are federal guidelines on animal testing. Most institutions have further guidelines that researchers follow. And knowing the researchers I know, they would do everything they could to treat the animals humanely. But, like that line between vermin and huggable, what we each consider humane will differ.
Mostly I just hold my nose and pretend I don’t know what is going on, the same way I do when I buy a Perdue Oven Stuffer Roaster. I’m choosing the lesser of two evils. In one case I could starve, become a vegetarian who doesn’t like vegetables, or try to survive solely on Hot Pockets or some other ‘not really food’ food. In the other case, I could choose the life of mice or fish over the vision, and the life, of my daughter.
There is hope for the future when it comes to the animal testing dilemma. Stem cells hold the potential to allow researchers not only to create artificial human retinas in petri dishes, but to create human retinas tailor made with the genes of an individual. The possibility then exists that you would know almost precisely how your own retina would react to a given treatment. Not only would it not require animal testing, but the results could theoretically be more accurate. Of course depending on how they are acquired, stem cells are another moral quagmire and the ability to create the artificial retinas I described is decades away from fruition.
There are also computer models. Eventually we will know enough about how the disease works and the computer models will become sophisticated to the point that we could simply try the hypothesis virtually. But today we don’t even know for certain if having an Usher gene means you’ll have vision loss in the future. How could we possibly create a computer model that takes in to account every aspect of the disease when the information simply doesn’t exist?
So we’re stuck with animal testing as our only option for the foreseeable future. That gives us a few choices. One, abandon animal testing and wait for other technologies to catch up. I would estimate in that scenario we would have treatments sometime next century after we’re all dead and gone. Two, pretend animal testing isn’t happening or that it isn’t a moral conundrum. Or three, have a calm, rational discussion about it among those of us that benefit from it, the researchers who work with animals, and animal welfare groups.
Personally, I like option three which is why I was so heartened when I was recently contacted by an Usher researcher who was working with animal rights groups in Europe. It would be great if the debate on this issue was taken out of the hands of extremists on both sides. I suspect the majority are torn like me, hopeful to see the end of animal testing but willing to accept it in place of the even more distasteful alternatives.
In the end, all of this makes me long for a more simple life, like sitting on a quiet lake in the summer doing a little fishing.
Oh wait. Never mind. Nothing is ever that simple.
