patience is a virtue that i don’t have time for

you can read more about all this here:

Link to the pdf of the tool kit

And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…

Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.

And then, at some point, the people who left started coming back.

It was the children first. The March of Dimes and Saint Jude set up programs and my town would do spaghetti fundraisers and raffles and meal trains to support the family and send the child and one parent to a hospital in the city — and the children came home. Their hair grew back. They went back to school. We were all trained to think of them as the angelic lost and they were turning into asshole teens right in front of our eyes. What a miracle, what a gift, how lucky we are that the odds for several children are in our favor!

Adults started leaving for a specific program to treat their specific cancer at a specific hospital or a specific research group. They’d stay in that city for 6-12 months and then they’d come home. We fully expected that they were still dying — or they’d gotten one of the good cancers. What a gift this year is for them, we’d think. How lucky they are to be strong enough to ski and swim and run. And then they didn’t stop — two decades later they haven’t stopped. Not all of them, but most of them.

We bought those extra hours and months and years. We paid for time with our taxes. Scientists found ways for treatment to be less terrible, less poisonous, and a thousand times more effective.

And now, when a friend was diagnosed, the five year survival odds were 95%. My friend is alive, nearly five years later. Those kids who miraculously survived are alive. The adults who beat the odds are still alive. I grew up in a place small enough that you can see the losses. And now, the hospital in my tiny hometown can effectively treat many cancers. Most people don’t have to go away for treatment. They said we could never cure cancer, as it were, but we can cure a lot of cancers. We can diagnose a lot of cancers early enough to treat them with minor interventions. We can prevent a lot of cancers.

We could keep doing that. We could continue to fund research into other heartbreaks — into Long Covid and MCAS and psych meds with fewer side effects and dementia treatments. We could buy months and years, alleviate the suffering of our neighbors. That is what funding health research buys: time and ease.