Peer & Family Support Spotlight: Joel Vander Molen

Joel Vander Molen sees living 38 years with a high-level spinal cord injury as a unique experience from God. He was just three years old when he incurred a C2-3 complete injury from a 1985 car accident, leaving him unable to feel or control anything below his shoulders or breathe on his own.

“Living as a high-level quadriplegic, relying on mechanical ventilation, using a chin-controlled wheelchair and needing a caregiver for every physical need has its challenges, but it is all I’ve known,” says Vander Molen, who was born and raised in Iowa. “Yet I am able to live the life I have been given and continue to be active.”

Amazingly, much of his focus has been on helping others. About ten years ago, Vander Molen trained to be a Christopher & Dana Reeve Foundation Peer & Family Support Program mentor. He came across the need for mentors as he read blogs and used other resources on the Reeve Foundation website.

“I followed Christopher Reeve’s story because his C2-level injury and need for mechanical ventilation was similar to mine,” says Vander Molen. “Within a month of Christopher’s passing, about ten years after his injury, I hit the milestone of 20 years since my injury.”

Vander Molen has mentored about 20 people so far. Many are newly injured, and Vander Molen advises them on what changes to expect and how to cope with changes as they occur. He often uses Reeve Foundation resources to help answer questions.

“From spending a lifetime in a wheelchair, I have learned a lot about what works and what doesn’t work. I enjoy sharing what I’ve learned with others, but I also learn new things from the peers I speak with,” says Vander Molen.

Roughly a third of the peers he has spoken with have a high-level injury and require a ventilator. Many ask about his experience using a diaphragm pacemaker, which he had implanted in 2010. The device has two wires on each side of his diaphragm that connect to a port on the right side of his chest. An electrical stimulation from an external box causes his diaphragm to contract and triggers breathing every four seconds.

“I answer a lot of questions about what it is like and the process to get it,” says Vander Molen, who used a regular ventilator for 25 years before getting the implant. “Often, people on ventilators are not very active, and I try to encourage them to rethink their mindset from not being able to do anything to realize what they can do. Although there is a need to adapt, nearly anything is still possible.”

In 2003, Vander Molen started his own website development business, VMT, working with up to 40 clients annually. He uses a computer for everything and can type around 30 words per minute.

“There are several options now for people like me who have absolutely no hand movement,” says Vander Molen. “I have friends who use voice activation, but I guess I'm old school, and I use a mouth stick for everything. I set my computer up on a bedside table in front of me, either in bed or in my wheelchair, and that's all the adaptive items I need. I say, just because you can't move or breathe on your own is no excuse for not being able to be productive.”

Vander Molen has also given back as a volunteer counselor at CHAMP Camp for 16 years, where he was a camper as a child. Located in Martinsville, Indiana, the camp is for kids with tracheostomies and those requiring mechanical breathing assistance.