An interview with a Harvard professor in the early 2000s left a lasting mark on Rob. In it, the professor was asked “What do you think is the fundamental element that drives us as humans to learn?” To this, the professor responded, “the joy of discovery.” This was a message that Rob immediately connected with, and he has carried it as a banner of sorts ever since. Early in his life, he bounced between different interests that sparked that joy of discovery. He went to nursing school for 2.5 years before he and his girlfriend decided to pack up some backpacks and began camping for prolonged periods. They enjoyed it so much that they eventually followed the Mississippi from St. Louis to New Orleans, followed the coast to Key West, hitchhiking local roads and never sleeping indoors. Rob has worked as a bellhop, a rough framer, and a pastry chef, and eventually got a degree in computer science which started his career in high tech where he works to bring breaking-edge technology and people together.
Rob’s Journey with SCI
When Rob’s SCI occurred, his goals were very short-term. First, all his focus was on surviving his 3 weeks in ICU. After that, in rehab, he worked to get well enough to be off a ventilator. Then he aimed to be strong enough to feed himself. The earliest work he did in recovery-focused so much on the present, and renewed his use of “mindfulness,” a mental state achieved by focusing one’s awareness on the present moment. He learned how to acknowledge his feelings regarding his injury, accept them, and move on to things he could effectively change.
Rob sought to be the best version of himself that he could be and worked to dwell less on the life he had before SCI. Many doors were closed for him; he couldn’t ride a motorcycle anymore, or walk his daughter down the aisle, but he found new doors that still brought him a feeling of accomplishment and purpose. He found that he could volunteer for SCI studies that would go on to help others with their own recovery journeys.
Through his volunteer work, Rob discovered a community of passionate, intelligent people. Everyone was interested in helping him, and people like him, and that community of extraordinary positivity made him feel valued when it seemed that everything else worked to make him feel forsaken. In this community, he was able to feel the spark of discovery that had driven him his whole life. He signed up for every study he was qualified for, and after his first year of rehab was able to complete his morning routine on his own, and began to drive an adapted vehicle.
Why does Rob Want to be an Ambassador?
In December of 2021, Rob was diagnosed with throat cancer. Through aggressive treatment, Rob was able to finish his chemo/radiation, putting the cancer into remission. Near the end of treatment, he suffered a cardiac arrest and was put into a 2-day coma and 10-day ICU stay. His journey left him feeling as if he had to discover his purpose once more. He decided that with all his experiences, that perhaps he would have something to offer in the role of a mentor. He enrolled as a mentor in the Boston chapter of the United Spinal Association and regularly uses Model System literature to keep up on the newest information. Through the MS newsletter, he learned about the Ambassador Program and felt that the work done aligned with the work he hoped to do. He values how easily consumable the MSKTC resources are and how useful they will be to those starting their own journeys with SCI.
What does Rob think of the quality/usefulness of MSKTC resources?
MSKTC resources are superlative. They are the opposite of anecdotal. MSKTC resources are derived from peer-reviewed journals, but these are sources that ordinary people struggle to understand or even access. What MSKTC does is take those esteemed journals and translate them in a method that adheres to the myriad of different ways people learn and absorb new information. Rob hasn’t seen what MSKTC produces anywhere else. MSKTC is fulfilling a need in the community that has gone unanswered for far too long.
What has Rob Done as an Ambassador?
Rob has come up with an approach that emphasizes his credibility as an MSKTC Ambassador by being familiar with the MSKTC mission and content, which emphasizes outreach to SCI individuals. This emphasizes outreach to caregiving organizations not so familiar with the specifics of SCI issues and concerns. He has joined multiple SCI social media groups and looks for opportunities to share MSKTC content with individuals asking about specific issues. By doing so he helps the SCI individual immediately and informs the group at large about MSKTC content, and encourages anyone to reach out to him with any questions.