Getting Back Up Turns 15

September is Spinal Cord Injury Awareness Month.

Obviously, those words carry more weight for me than most awareness-month proclamations. Spinal cord injury isn’t something I suddenly become aware of when September rolls around. I wake up with it every morning and go to bed with it every night. It has influenced nearly every part of my life for years.

But this September feels different.

This September also marks the 15th anniversary of Getting Back Up, the nonprofit organization I created to help individuals living with SCIs.

When I created GBU, I wasn’t thinking about what the organization might look like 15 years down the road. There was no elaborate master plan or roadmap hanging on a wall. I was thinking about helping people. And frankly, I was thinking about how ticked off I was over the games insurance companies play when denying people critical therapy, equipment and services at some of the most important moments in their recoveries.

I knew firsthand how dramatically life can change. I also knew there were people and families suddenly finding themselves in a world they never asked to enter and had absolutely no idea how to navigate.

An SCI doesn’t just change whether you can walk, scratch your nose or pet your dog. It changes how you work, travel, get dressed, go to the bathroom and handle countless things most people never think twice about. Then there are the challenges few people see: pressure sores, UTIs, equipment problems, insurance battles, endless paperwork and the fear of losing caregivers you depend on.

That was part of why I created Getting Back Up – a name that has always meant much more than physically standing again, because for many people that may never happen.

There are a thousand other ways to get back up.

You get back up when you figure out how to live independently again. When you go back to work. When you leave the house for the first time after your injury. When you travel, date, start a business, raise a family or pursue something you thought you had lost.

Sometimes getting back up is a huge accomplishment. Other times it’s simply getting through a particularly lousy day.

Both count.

I’ve lived with an SCI long enough to know that I don’t need to romanticize it. I don’t believe every terrible thing happens for some wonderful reason. I’m not going to tell someone who has just suffered a catastrophic injury that it is secretly a gift or that someday they’ll be thankful it happened.

Some things just suck.

But I do believe that eventually we have a choice about what we do with the circumstances we’re handed. Creating GBU was one of the things I chose to do with mine. Hopefully, the work we do helps give others more choices with theirs.

What started as an idea 15 years ago has grown into an organization that has raised more than a quarter of a million dollars to help individuals across more than 38 states move forward with their lives.

Sometimes that means helping someone obtain equipment they desperately need. Sometimes it means providing resources, support or access to possibilities they didn’t know existed. And sometimes it simply means showing someone with an SCI that his or her life is not over.

Because while we absolutely need greater awareness of SCIs – the medical complications, financial burdens, accessibility barriers and everyday challenges – we also need people to understand what remains possible.

People with SCI build careers. They start businesses. They fall in love. They raise families. They travel. They create. They compete. They advocate. They screw things up. They start over. They laugh. They struggle.

They live.

Spinal Cord Injury Awareness Month is a good time to remind people of that. Learn something you didn’t know before. Ask questions. Pay attention to accessibility. Listen to people who actually live with disabilities instead of assuming you understand their experiences.

I’m incredibly proud of what Getting Back Up has accomplished over the past 15 years, but I’m equally mindful of how much remains to be done. People still need equipment they cannot afford. Unnecessary barriers still exist. Insurance companies and bureaucracies still force people to fight battles they should never have to fight. And newly injured people are still waking up every day wondering what the rest of their lives are going to look like.

Awareness is a good place to start.

It just shouldn’t be where we stop.

At some point, awareness must become action.

Finally, my sincerest gratitude to everyone who has supported Getting Back Up over these past 15 years, and especially to those who have made that support part of their regular routine. You have helped make all of this possible.

Stand Strong!

Scott