Talking nutrition and resilience with Tony Schmiesing, a quadriplegic adaptive extreme athlete for High Fives Foundation. Tony is the only adaptive athlete to have skied the X Games in Aspen Colorado, and the first adaptive athlete to ski the Superpipe in Squaw Valley. Tony is also a musician, filmmaker, graphic designer, and writer.
Getting yet another college degree
Tony is in the process of becoming a registered dietician, so he can specialize in nutritional support for people with disabilities. He wants to show other people with disabilities how they can improve their health by taking control of their diet and making it a priority. He has been a Quadriplegic since he was 16 years old.
I interviewed Tony about his amazing intuition with food as well as his amazing life. Tony has always been thin even though he is not able to physically active to the extent of an able-bodied person. Diet has been key for his health.
No food hang-ups for Tony
Tony had a head start with nutrition because he comes from a family where his mom was an early-adapter of healthy foods back in the ’70s, so he is used to eating natural foods like carob and brown rice.
Tony says on his about page at Faster Barnacle.
“Along with being breastfed until about the age of three, I’m weaned on peanut butter, carrot and raisin sandwiches. Not sure if you can see the potential in this last fact, but I think it demonstrates a certain gastronomic creativity that led to my open-mindedness in all things.”
Tony has never had any issues with overeating, and never developed the junk food addictions that most of us struggle with.
Cooking from bed
When I was working as a personal assistant for Tony I often helped him get breakfast together or get something going for lunch. There were always fresh fruits and vegetables in the fridge from the farmer’s market.
Tony has a way with food combinations and recipe creation on-the-fly. He would be lying in bed and could tell by the sound of something cooking or smell that it was ready to be turned over, or that the soup was ready to be stirred. He knew what was in the fridge and could guide me into making delicious concoctions from whatever was there.
One of my favorites was the almond milk and almond butter smoothie. this usually included a banana, some almond milk, or sesame milk that Tony made himself, natural protein powder, and a dash of honey. Tony eats a mostly plant-based diet using whole natural grains, fruits, veggies, nuts, and seeds with the occasional addition of fish, but he is concerned about the impact human fishing has on the planet so he does not buy fish often.
Making high-quality food a priority
As an Adaptive athlete, Tony prioritizes his funds so that he always has the highest quality organic, fresh food and he said this was one of the secrets to his fitness and longevity. He admits it is not easy for most people in his situation to eat well.
Folks with disabilities are often marginalized and unable to afford the more expensive items, so that makes it difficult to eat well. Many feel unable to control their own food destiny because they have other people shopping for them and preparing their food. But Tony hopes to empower people to take more control over their nutrition once he is a registered dietician.
“Stay away from hospital food!”
On his many stays in the hospital, Tony always made sure to have people bring him real food and steered clear of the overly processed hospital fare. Tony has had to have several surgeries over the years due to complications from his initial injury and optimal nutrition has been one of the things that have kept him alive and helped him recover rapidly.
Staying thin in a wheelchair is not easy for most people
Many people I have worked with struggle with their weight and this can cause more health problems and make transfers from bed to chair and back difficult. Tony has been able to hire smaller people because he is not that hard to lift. His pool of potential assistants over the years has been larger than people who are over-fat and need to hire people who are big enough to lift heavy people.
In great shape for a quadriplegic!
Tony is in his 50’s, and he is in great shape for someone who is mostly paralyzed from the neck down. He works out regularly on the track pushing his hand-driven chair and talking to the other regulars. He can get a lot more movement throughout his arms and shoulders than most C4-5 quads. He attributes his high level of mobility to his nutritional support.
Tony has to stay in shape for one of his passions, extreme sports. So he hits the track most days in his hand-push wheelchair to get ready for ski season.
Tony skis most winters with his partner Brian Sheckler guiding him through some terrifying almost vertical terrain. He has paraglided, heli-skied, and is always looking for thrilling new ways to “get vert” as he calls it.
Is this cheerfulness for real?
I found Tony on Craigslist over Christmas time one year, when so many people with disabilities are looking for caregivers and personal assistants because people go home for vacation or students transfer to different schools etc. Tony had an intriguing CL ad with a cool picture of him with his companion dog and a link to his blog.
This was like no other Craigslist ad I had seen from someone looking for assistance. Tony seemed to exude a sense of peace, genuine contentment, and happiness over the phone, on his blog, and in his ad. I just had to go and see for myself if this guy was for real.
Most ads on Craigslist seeking yet another assistant are filled with a weariness about having to interview more people and search for more helpers. That’s not surprising since it can be hard to find reliable help for short morning and evening shifts, especially with what In-Home Supportive Services (IHSS) is willing to pay.
Relying on assistants for your very life
Often folks with disabilities shell out extra money to make up for the low pay but they are often on a tight budget. It can be stressful to hire new people, especially when your life depends on other people helping you every single day.
But there was a twinkle in Tony’s eye that sparked my curiosity and made me want to work with this guy or at least meet him.
I had worked with many people with disabilities over the years first just out of high school in nursing homes where elderly people and profoundly disabled kids were warehoused. While in college I worked one on one with a quadriplegic student and later with a couple of young women who had MS and two men who had muscular dystrophy.
But Tony was very different. I met him, we clicked, and I got the job as his morning person for helping him get up and shower and dress on days he was able to get up. Tony really was a positive and empowered person, and this intrigued me. I wanted to know what made him tick.
He did not seem to have the low-grade depression and frustration that some of the other people I had worked with seemed to carry. Tony had a lot of physical pain from a condition called syringomyelia, a side effect of the original injury, but he still seemed incredibly in love with life. He was extremely social, had lots of friends that he had known for years, and was loved by just about everyone he met.
The ass is king
I worked with Tony in 2010 and he continued to have to stay in bed for many days for another 6 years. Because of pressure sores on one of his sit bones he was now staying in bed every other day and searching for a solution. He joked that his ass was more talked about than Jennifer Lopez’s ass because friends would call and ask how his ass was doing.
Tony was not miserable about his life. He carried on. On the days he was able to get up I helped him dress and set up his work area, so he could reach things.
On the days he had to rest his butt he had a projector that showed his computer screen on the ceiling, so he could work with his laptop. I helped him test his ceiling projector to make sure it was at the right angle, so he could use one hand to tap the mouse and use voice commands to control his laptop computer while he lay flat on his back.
Living your life from bed
Tony wrote, phoned, studied, and corresponded from the bed and was as productive on those days as he was on the days he got up.
Tony often told me he felt blessed by all the love in his life. His family was amazing, and he was very close to them. Though he had moved away from southern California to go to UC Berkeley and has been in the bay area most of his adult life he still had a close connection to his family.
After many years of being patient, he gathered the funding and found a specialist who makes the type of cushion he needs for his chair and body to be able to get up every day.
So now he is living large as an adaptive athlete for the High Fives Foundation. He had to go to Colorado and stay there for several days and made multiple trips to get the cushion made and tested and fitted specifically for his body.
When I interviewed Tony, I thought I was interested in how he was able to eat so well and be so active considering his disability. But there was so much more than his nutritional knowledge that I wanted to know about.
I sent him an email follow-up question: “So…. were you always so full of gratitude and peace or did you have to find it after the accident? Did it actually, in the long run, enhance your sense of peace and gratitude? You seem to be the most positive gratitude-filled person I have ever known, able-bodied or disable-bodied.”
“I mean, here’s the thing, I was a kid when I broke my neck and that’s a pretty significant thing to happen at that point in one’s life. So, as I always full of peace and gratitude? Yes and no. Insomuch as I don’t think I gave it a lot of thought. I always felt pretty happy and certainly took moments to be grateful intentionally, But, again, I was a teenager.
“The thing about the accident is that it was a true catalyst and wake up call, instead of seeing what I had lost, I was given the opportunity to be overwhelmed by what I was given (or what I had always had around me), and in turn able to see more clearly. It has only snowballed from there. It has a gravity and momentum unto itself that makes me laugh sometimes. So short answer, it definitely enhanced the sense of gratitude. That was the gift. And it taught me very quickly to ditch that myopic point of view of things being good or bad.”
The most beautiful thing
What Tony says about the accident on his blog,
“As catastrophic as it may seem, it’s the single most beautiful thing that’s ever happened to me. To understand this, you probably need to know me or my family and that’s part of its mystery.”
The thing about Tony is he is for real. This is not just “faking it and making the best of it”. He is really that serene and happy and full of love and compassion and an incredible sense of gratitude for his life.
My big takeaway from knowing Tony is that happiness comes from within and it can be chosen and cultivated by a disciplined mind.
A positive experience with family in early probably helps too! family can have an amazing impact on life and one’s ability to form bonds, friends, and community. This may seem obvious to everyone except me, but I come from the opposite experience, so I never valued family. Not having experienced it myself I did not really think I missed it. But Tony’s resilience taught me that relationships are everything when you are growing up and help you to be a more stable person.
But even without all of that support, Tony seems like the type of person who would have found a way to find family and be happy no matter what.