My spinal cord injury (SCI) happened in September 2015. I was a passenger in a truck that went through a stop sign at a T in the road. We hit a telephone pole going 60 mph, and the guy in the backseat was not wearing a seatbelt and flew forward into the back of me. He got a collarbone broken. I got a broken C1 vertebra and a spinal cord injury at C4. After a Life Flight ride, MetroHealth doctors put a titanium cage in my neck. After a few days, I got a trach, thanks to 2 collapsed lungs.
I was in the ICU for 3 weeks before being stable enough to be transferred to the MetroHealth Rehabilitation Institute of Ohio, where I spent the next 3 months. For the first month, I didn’t have any function of my arms whatsoever. During this time, I received excellent therapy and developed some use of my biceps and triceps. With the help of my mom, who showed up right by my side, we did a whole bunch of research on Skilled Nursing Facilities (SNF), Government Programs, along with a never-ending list of life-changing decisions that were now required to be made quickly.
A step-down, sub-acute facility was my next best step, but I knew my ultimate goal was to get back home. The SNF I went to had a reputation for good rehabilitation with neurological injuries. I was lucky enough to get an occupational therapist that previously worked at the MetroHealth Old Brooklyn Center, so I stuck it out for as long as I could. Receiving rehab is priceless, and I would not be able to receive it at home. Besides the friendship with some of the staff, every other aspect of spending a year in a nursing home was probably the worst part of the whole journey. I’ll leave it at that.
Before my SCI, I had built my house and started a business in technology in 2006 at 25 years old. I needed to get back to my own home, so 6 months into my stay at the SNF, I started ‘fighting’ Medicaid to get home and get caregivers to help me at home. With my support team, we could keep my business running through my time in the facilities. At first, it was me sitting in my room with my mom or an aide and would have to walk them through what to do on the computer to keep supporting my customers. I wasn’t functionally able to press the buttons, but I could direct whoever was helping me. Quickly I added the ability to control the computer by voice and eye tracking. I continued adjusting my business model to be able to reach my customers’ systems remotely.
My mom was instrumental during this time and a paper hound – she would travel back and forth from work to my facilities with a tote of paperwork every single day. Without an advocate, there is no way to address everything that needs attention as quickly as required. During this fight, I was told by Medicaid to get rid of all my assets. I had tried to stay on my private insurance for as long as possible, but with my level of injury, the social workers said Medicaid was a must.
So, after 6 months of fighting and a Medicaid attorney, I finally got home 15 months after my accident. Finding an attorney was crucial, as Jobs and Family Services did not want me to come home and live alone. Because of fundraisers by friends and family, I was able to afford legal advice that allowed me to keep my assets and get home. Through new programs, like Medicaid buy-in, I can own a business, make an income, and still have medical benefits.
My group of friends right away built a ramp on the front of my house for me and installed everything I needed. Because my line of work is with technology, after returning home, I began to modify my house to use every possible technology option I could find. I set up smart lights and smart outlets, built custom programming to control my TVs and my cameras, and built a custom computer setup using a quad stick controller. That allows me to control over 150 computers at the click of a button, stay connected with everything, and play video games.
Setting up the technology allowed me to live independently. Staff scheduling, nursing tasks, and household chore tasks are all scheduled through Google Calendar and shared with everybody involved. Google Drive handles all important documents. This keeps everything from service plans, medication renewals, insurance cards, and anything else needing to be referenced quickly. Everything has to be organized in order to keep things functioning and progressing.
Hear more about my technology setup in my MetroHealth Annual Spinal Cord Injury Forum Presentation, which can be found at www.usaneo.org/sciforum2022.
I recently just had surgery on a pressure sore that I have been dealing with for the past 5 years. It wouldn’t heal all the way while trying from home. Then, C-19 delayed being able to get surgery until just a month ago, and I am currently under a protocol where I have to lay completely flat 24/7 for a month. This is mainly the only medical issue I’ve struggled with since my injury in 2015.
My girlfriend, Jess, is a nurse and has helped me tremendously in caring for and learning my new body. She has helped me model my home setup with her knowledge and what I observed while in rehab. It took some time, but we finally created a documented pathway for independent providers to get signed up through Medicaid, guides on how to complete the required paperwork, and custom notes making documentation simple. All this allows me to live at home independently.
I made it home and am functioning with a great support group. My business has grown, and I’ve started working on a separate avenue in the business to help people with disabilities. I am working with clinicians at MetroHealth to set up an Assistive Technology (AT) clinic to provide examples of AT that can help individuals living with spinal cord injuries (and other disabilities) live a more independent life. I’m also in the process of starting a nonprofit to help cover the costs of home assistive technology to improve quality of life. The team working on the AT Clinic recognizes the expense these items have, and not everyone has the funds to purchase them. My hope with my nonprofit is to help cover some of those costs.
My biggest advice to somebody reading this and in a similar situation is just to keep digging for more information. You won’t get it all handed to you at once or from one place. It will come over time and from every direction. Keep asking questions.
