I was born and raised in rural northern New Jersey, not far from New York City. I grew up close to lakes and a large state park so I spent a lot of my childhood outside exploring nature. After high school I moved to Philadelphia to pursue a visual communications degree and a career in graphic and web design. After a few years I left the Philadelphia area and moved to around the country exploring and expanding my perspective. I kept going west. I ended up landing in the mountain wilderness of California in a very small town called Bear Valley and fell in love with it. I lived there for several years exploring the outdoor rugged lifestyle and enjoying the small community. Then in 2000 I broke a vertebra in my back and the sharp bone sliced my spinal cord. Because of the paralysis, I it was easier to move to a lower elevation with less snow where I could live independently. My dog Burton and I spent the next decade in the comunity of a small gold country wine town. Feeling a void from Burton’s passing I decided to move to Sacramento in 2013 to go back to school. Soon after the move, my health started taking a turn for the worse and my focus shifted to recovery and managing my health care. With determination I have found solutions to reclaim my health. I still live in Sacramento. I have built an amazing team around me that helped me recover all kinds of movement and heal the many traumas I’ve endured along the years. In 2022 I founded TheLionheart.Community, a 501c3 non-profit corporation to benefit people with SCI/D. I’m feeling stronger than ever and I look forward to what my future brings
My initial spinal cord injury happened in 2000. I took a 65-foot jump on a snowboard that threw me in a way that I was not expecting. I fell from 27 feet in the air to an abrupt stop on a 6% upslope, square onto my T-11 vertebrae. The impact was strong enough to break my vertebrae in half and the sharp edge of the bone cut my spinal cord clear across. At the hospital they inserted Herrington rods into my back to stabilize me from T-6 to L-1. In order to get a cage around the broken bone they had to make a second large incision across my left side.
Because of the cut, that side has been compromised and over time my spine started leaning towards the stronger side. In 2005, while kayaking, I acquired a pressure sore around an ischial. My local doctor referred me to a spine surgeon in the foothills for a prosthetic cushion. The surgeon ended up talking me into what was supposed to be a small simple rod extension surgery instead of a new cushion. The surgeon did not understand the complexity of my spine issues and made a few wrong calls. I came out of surgery much worse than when I went in. Consequentially the scoliosis increased drastically over the next years. I went to several surgeons post surgery and all of them said the extension could not be undone. The only fix was a pelvic fusion that would most likely leave me with a large loss of mobility and risked my independence. The surgeons recommended waiting for as long as possible before signing up for such a risky surgery.
Over the next six years I was hospitalized over a dozen times from issues stemming from the severe scoliosis. Internal hemotomas, drains, infections, skin breakdown, severe dysreflexia, digestion issues, bladder displacement, bladder surgery, compromised immune system, rotator cuff displacement, constant soft tissue repositioning and on and on. Two vertebrae completely ground into dust over time leaving my spine and pelvis detached from each other. My pelvis settled up in an unnatural spot to my right and caused most of my insides to migrate over to my left where they eventually protruded so far out I looked pregnant out my side. I lost more movement and feeling and my paralysis level went from T-11 to T-8.
I was trying to manage it all as best I could. Trying to stay strong with as much exercise as I could endure. Then in October of 2016 while working out some of the hardware bent and pulled out of my spine. It started scraping on my pelvic bone causing injury to it with almost every move I was making. At that point my body started filling itself with fluid, trying to protect itself from the trauma. It filled with so much fluid that I could not move without extreme discomfort and was bed bound for months. I revisited the surgeons I had previously found but they now said, I had waited too long. Too much damage had been done so there was too big of a risk that I wouldn’t grow bone around newly installed hardware, the risk of infection was very high with all the puss and bone damage and the risk of death was too great since all my organs had all been displaced.
Almost every hospital turned me down except for UCSF. After a relentless search, I found a surgeon that was willing to take on my very challenging conditions without any compromise! In late December 2016, a team opened me up, took the original hardware, removed a new boney spine my body started creating and cleaned out bunch of messy bone debris in my back. They then installed all new hardware fusing me from T-6 down into my pelvis. The risky 11 hour surgery was an amazing success! The loss of mobility was better than expected. I have grown bone around the cage so the fusion will hold successfully. I can still be independent with a few modifications and minimal help. I beat the odds!
I’ve spent the years after the surgery recovering and then reprogramming all my soft tissue to support my newly straightened spine. A strict regime of pilates, focused core work, cross fit, massage, and physical therapy, and clean nutritious eating. From all the exercise I became strong enough to complete the necessary strength requirement for the walking program at UC Davis. So in August 2017 I started walking again with braces after 17 years of paralysis! A year later I was able to walk 1/10 of a mile without rest using a waker and braces.
Then in September of 2018 a loose screw fell out of my front caster unbeknownst to me. The caster fell off and I was thrown out of my wheelchair. I landed on my knee and broke my right femur into four pieces. I opted to have surgery and hardware installed. Things seemed to be healing until I became violently ill at the end of December. I checked myself into the hospital on January 1 of 2019 and discovered that I had contracted MRSA from some hardware that was put in at the surgical site. I lived in the hospital for another two months on heavy IV antibiotics and went thru five more surgeries where they took out some of the hardware and kept cleaning out the damaged bone and tissue. Again the odd were against me and there was talk of amputating my leg but the surgeon was able to suppress the infection with very aggressive treatments.
It has taken me a year to get back up from when I first broke my femur. At my last appointment in August 2019 and the surgeon was quite surprised and impressed with the healing he saw. There was such a high risk of the MRSA coming back so I have been doing everything I can from a nutrition standpoint to keep my inflammation levels as low as possible and to stay active. The bone in now 80% healed and I am cleared to get back up and walking again.
So watch out world, it’s just straight up from here!
In 2005 I graduated from a peer mentor program Santa Clara Valley Medical Center had created. They placed experienced injuries with people who were newly injured to guide and support them through the first year of their injury. It was very successful and I was able to mentor two woman with similar injuries to mine. In 2014 I saw the need for a SCI support group in Sacramento and started one. It was effective and was attended regularly by locals. I would facilitate group talks about everything SCI or would bring in presenters to educate on current topics relevant to the community. I also started a website with the intent to connect people with SCI in northern California and provide them information on where they could find support and activities. At the end of 2016 my health fell apart and left me bed bound. I had to go through a major surgery with a large recovery time so I stopped organizing the group and the website with the hopes of starting it again once my health and schedule permitted. In 2020 I graduated from the Christopher and Dayna Reeve’s Foundation Peer Mentor Program and also went thru the Sutter Hospital Peer Training and Background check. In 2020 I had been visiting in patients with new SCI in the Greater Sacramento Area and supporting them at the hospital organized groups. When lockdown hit, they had to close the groups and reached out to peers in the community to start on online group. I know how important it is to connect so I founded what is now called TheLionheart.Community. We are a 501c3 who provides support, recreation and resources to people presented with SCI/D. If there is any way we can support you or a loved one please contact me at firstname.lastname@example.org.
Recently I have realized all the value in the things I have experienced since my SCI injury. I have become a professional patient, I am an expert at recovery, I have pushed through insurmountable odds, and inspire most of the people I come into contact with. A few years ago a good friend asked me to be a part of his art exhibition at Stanford University. We were in a room full of doctors and students and he asked me to tell my story. I didn’t have anything planned but I went for it. I found it so empowering to speak out and the response from the room was overwhelmingly positive. That launched my public speaking career. I have spoken at the Soroptimist of Calaveras county fundraiser. I also have attended the Nexus Summit the last two years to represent the patient perspective to the educators of the health care system. I was employed to sit in the classrooms and critique the curriculum, to share my stories with the attendees and also to give feedback and answer questions in a roundtable discussion. The feedback I have received has been outstanding so I hope to continue down this path of spreading the patient perspective, hope and inspiration. Please contact me at email@example.com if you have an opportunity for me to speak.
In 1990 I attended the Art Institute of Philadelphia and graduated with an Associates degree in Visual Communications. After school I worked as a Art Director for a local sports magazine called The Fan for five years. We turned what started out as a local newsletter into a national distributed 100+ page magazine during those years. After I left Philadelphia I worked for a few smaller graphic design firms until I branched out on my own and started a freelance company out of my home called Char Vine Design. Over the years I have designed a wide range of materials for a broad spectrum of companies including logos, t-shirts, car wraps, billboards, books, magazines, advertising, posters, clothing tags, websites, invitations, etc. If it can be printed, I’ve probably designed it at one time or another. In 2013 I wanted to up my skill in the web design field so I went back to school at American River College in Sacramento for another associates degree in Web Design. Currently I am more focused on passion projects. At the moment, I am working on a book with ZebraFish Neuro about facilitating recovery after spinal cord injury. I am designing the book and all the graphics inside. It’s been a really exciting and educational project. I can’t wait for the community to receive all the valuable information that it contains. If you have a design project feel free to reach out to me about it at firstname.lastname@example.org.