Franklin Elieh is a long-time complete quad who uses a power chair. Nick Struthers is a walking quad who has regained nearly all function after an injury 15 years ago. Ability-wise they may be an odd couple, but they make a great team and together they are transforming the resources available to people with spinal cord injuries in Northern California.
Elieh and Struthers met five years ago at the Santa Clara Valley Medical Center where they both had gone for rehab years before. They were working as peer mentors and realized that they each were picking up on a distressing pattern.
“Over time, we just kept seeing the challenges the newly-injured were facing, especially due to the shortened amount of rehab time that they had,” says Elieh. “Just to give you an idea, I was injured 30 years ago, and my rehab stay was four months. Now, the average stay in Northern California is barely under four weeks.”
The impact of the shortened rehab stays was driven home further when Struthers returned to his native Scotland for Christmas in 2016. He got connected to Queen Elizabeth National Spinal Injuries Unit and soon realized just how much more post-injury support the United Kingdom government pays for.
“In most countries in the developed world, with the exception of the United States, we have systems in place to help individuals who have significant challenges, particularly paralysis,” says Struthers. “When you are discharged in Scotland, if you need any home modifications, the local authority will pay for that. If you need a caregiver, the National Health Service will pay for it. If you need transportation, you can use a transportation allowance to lease a brand-new vehicle and install the necessary hand controls that allow you to do that,” says Struthers.
“I realized quickly that there’s a huge gap here in the United States when people are discharged. Some people are able to work it out financially with their families, but a lot of people really struggle, and state or local authorities are not there for them,” he adds.
So Struthers and Elieh endeavoured to be there instead. They started a nonprofit called the Northern California Spinal Cord Injury Foundation to provide resources, information, grants, family support, donated medical equipment and mobile clinics for those living with SCI in Northern California. The organization also doubles as the Silicon Valley Chapter of United Spinal Association.
“We raised $100,000 last year, but that’s just a drop in the bucket compared to what’s needed,” says Struthers. “Obviously, our idea is to do much more, but we have to start somewhere. The first thing is education and letting people know what resources are available.”
Even though NorCal SCI is barely two years old, Elieh and Struthers have established a breadth of services that are unmatched locally. The duo’s contrasting backgrounds have also positioned them to offer unparalleled advice. While Elieh has been a complete quadriplegic for 30 years, Struthers only bruised and stretched his spinal cord after a bike accident and has regained all of his function — save for some weakness on his left side and some numbness on his right — after being completely paralyzed below the chest.
“I didn’t think I’d be much good at peer support because I don’t know what it’s like to live with a permanent disability. But what Franklin made me realize is that, either way, there is still a great life out there to be led with a lot of joy and fulfillment. Franklin and I may be on opposite ends of the spectrum in terms of return, but in terms of helping people enjoy life again, we’re both on the same page,” says Struthers.
What’s Up, Dock?
After hosting a day on the lake, Franklin Elieh tells the story of how he and Nick Struthers lobbied Santa Clara Valley politicians to make their local lake dock accessible.
“Almost exactly a year ago, we collaborated with Santa Clara Valley Medical Center for an event called ‘Day on the Lake’ to get individuals with physical disabilities into water-based activities, such as kayaking and canoeing. We had over 100 participants with disabilities and lots of volunteers, but the loading dock at the lake wasn’t accessible. We live in Silicon Valley, one of the richest areas in the whole world. It just didn’t seem right. After that, Nick and I met with the county parks management team and shared our concern that the dock wasn’t accessible. They agreed it should be, but it wasn’t an immediate priority. We then began meeting with local politicians. We didn’t demand accessibility. We just told them it was the right thing to do, and you know what? We did not get any resistance. Within three months of our initial meeting, the county voted to allocate $600,000 toward making the lake accessible.”
What Franklin Can’t Live Without:
Obviously my wheelchair. I have a Permobil C350 power wheelchair. But I know there’s this effort to claw back insurance plans that makes purchasing wheelchairs like mine harder.
Franklin’s Secret for Hiring Attendants:
Just be very clear in terms of your expectations and also don’t expect the perfect person. Unless there are significant lapses, let some things go.
Franklin’s Best Advice Post-Injury:
Learn how to identify early symptoms of pressure sores, UTIs and bowel impactions, and be proactive about preventing these secondary conditions.
Why We Joined United Spinal:
It gave us credibility as a foundation to be a chapter of United Spinal because no one had heard of us. Initially, a lot of United’s resources really helped us develop as an organization. Now, we’re finding our path, but those resources are still very useful.