September is Spinal Cord Injury Awareness month. Many of you likely didn’t know that; if not for Tyler’s injury 11 years ago, I’m not sure I would. More often than not, those living with such injuries navigate life with such seeming ease that we don’t recognize or appreciate some of the daily challenges they’re presented with or the many work arounds they use to live in a world not built for them.
As a Hope4Hoog follower, you’ve probably noticed there have been few public updates in recent years. It certainly hasn’t been because Tyler’s been idle. Rather, it stems from the fact that what he’s done since his injury are the things many young people do as they leave high school.
After graduating, he spent four years in Chapel Hill and got his Bachelors’ degree in Communications from the University of North Carolina. He worked a couple of internships in Colorado and California,then was accepted into the University of Southern California’s film school where he earned is Master’s degree in Writing for Film and Television. Since then, he’s worked post-graduate jobs in the industry (Apple, Disney, Netflix, etc) and served as consultant on disability issues for shows. Most recently, he’s is working with various groups who advocate for those with disabilities.
Obviously, I’m proud of what he’s done since his injury, but I also take my cues from Tyler, and he views those things as what he is supposed to be doing and not things that merit special attention just because they were done from a wheelchair. Hence, the absence of updates.
So why today’s update?
Well, almost a year ago, Tyler’s body decided to take its normally minor interruptions and irritations to a whole new level. On a daily basis, he is having abnormal and adverse reactions to…well, we don’t know. The result has been severe spasms, recurring infections, low and high fevers, internalized itching, insomnia, more hospital stays and urgent care visits than I can even remember (three UC and one Hospital visit in a 24 hour period!).
He has been through so many tests, blood draws, X-rays, and healthcare regimen changes, that we can’t recall what his “normal” was used to be. And, even with all of those painfilled frustrations and interruptions, he just kept moving forward. Writing scripts, submitting finished products to studios, applying for jobs and internships and fellowships. But in the last few months, the symptoms are worsening, and now it’s interrupting his ability to work, to edit, to write, to collaborate, to relax, to interact, and that is affecting his happiness.
We are hoping to can give him something of a reset by getting him admitted to a spinal cord rehab facility similar to where he went following his accident so they can run extensive tests, figure out what’s at the heart of his worsening symptoms, take corrective steps to alleviate the cause and the symptoms and put ongoing physical and occupational plans in place. All with the goal of removing the recent obstacles so Tyler can get back to his path.
The problem? Because Tyler is so far out from injury, insurance won’t pay for the rehabilitation stay, nor any ongoing therapies (beyond 12 visits annually, which is clearly not enough).
In order to keep costs in line with what we can afford and in an effort to set aside resources for future therapies, we have reduced his care team’s work from four to three weeks a month. To cover the resulting gap in his care, I take a week off from work to be with Tyler and handle the care normally covered by his team…taking him to his doctor appointments, therapies, hospital, urgent care, etc visits, handling his morning/evening care, and serving as his assistant as he handles his daily work load.
I can’t do more than that, because then I’d lose my job, which pays for his insurance. But the insurance’s denial of coverage for what he needs to get back to his normal, is more than we can make up. We were feeling a little lost, a little sad, and a lot frustrated, when a friend suggested we do a GoFundMe.
And here we are. So many of you have been so gracious in your support of Tyler over the years, emotionally, financially and otherwise. We are eternally grateful for that support and I can tell you it has been instrumental in enabling to accomplish all that he’s accomplished over the past 11 years.
If you feel so moved to help, to donate to Tyler’s GoFundMe, all funds will be utilized for his rehabilitation stay and subsequent ongoing therapeutic plans as set forth by his care team. The funds themselves will be sent to his Hope for Hoog special needs trust, which is managed by a third party trustee who oversees the trust and ensures the funds are are directed toward his care.
With your help, Tyler can start 2023 off returning to the normal life he was enjoying and thriving in.
Thank you for taking the time to read and consider donating or sharing this!