What My Spinal Cord Injury Taught Me

I celebrated 16 years of having a disability on May 21st. I was going to edit the word “celebrated” and then decided that it was okay to use that word. There are many things to celebrate that have come out of the journey of the past 16 years. To be honest, most years this anniversary goes by without my even noticing. But this year I took note of it as a couple friends had significant events on that day and it dawned on me that it was a significant day for me too.

Over the next several days, I’m going to share 10 tips for overcoming challenges. These are things that I learned along the way and they apply to any challenge – health, work, family. To be set the stage and to honor my journey, I’m going to begin with a blog today to give an overview of what happened to me.

I’m not going to go into car accident details as I don’t choose to spend time rehashing that incident. I could make it all about what happened on May 21, 1994, but to me that is about being stuck in something that can’t be undone. No one but me was injured and it’s basically irrelevant. The journey of what happened after that day is more important. Here are a few relevant facts about what occurred:

• My first lumbar vertebrae (L1) burst apart. I had seven hours of surgery that combined picking out all the pieces that had burst from the spinal canal and creating a substitute L1 vertebrae. The substitute is a titanium cage filled with pulverized bone (they removed a rib). The cage is screwed to the vertebrae above and below.
• I spent about six weeks living at Marionjoy Rehabilitation Hospital in Wheaton, Illinois. I underwent all kinds of therapy- physical, occupational and psychological. During that time, I was told constantly to “take it one day at a time.” I thought at times that I might slap the next person who said this to me. I kept thinking “What the heck is that supposed to mean?”
• After release from living at Marionjoy, I continued to have full days of treatment but moved back into my parents’ home. This stage lasted four months. Finally, about seven months after the accident, I moved back into my own townhome and returned to work.
• We hoped that I would be able to walk without any aid. But that’s not what happened. I still need two canes to get around. And that’s okay. I would have liked more of a fairy tale ending but on the continuum, this ending is not as challenging as it could be.
There were so many “firsts” in the process of regaining strength. The first challenge was to regain enough strength to sit up in bed from a lying position, then to be able to transfer from a wheelchair to another chair (or a bed or a mat in the therapy gym). We take so much for granted of what encompasses “normal strength.” Even if you are in dismal shape, if you are up and about you have significant strength of which you are completely unaware.

At the beginning, we worked my upper body like crazy because you need extra arm strength. Initially, I was passive while my legs were stretched and exercised because nothing was going on at all with them. I always could feel my legs. I was lucky in that I always had sensation (not everyone with a spinal cord injury does and burning yourself with bath water is a common phenomena because of not being able to feel things). One of the first ways that I could move a leg was if a skate like device was attached to it so that it could remove some of the gravity while working out on a mat in therapy. Then suddenly I could do it without assistance. Next my therapist got me up at parallel bars, still later with a walker and then with canes. Ideally, I would have moved to one cane and then to none. But that didn’t happen for me. It stopped with being able to use two canes to walk.

It’s hard to explain the type of bond that forms between you and your therapists. Absolutely everyone was fabulous, but more core team of the two Julies (one PT and one OT) and Vince were stupendous. Thinking of their talent, dedication and compassion overwhelms me to this day. I remember being with them and thinking about how my coworkers and I would complain about our work at my office – and yet these people transformed lives daily and never showed their stress to their patients. My lead therapists were in their mid-twenties and proved to me that you didn’t necessarily need years of experience to have boundless talent.

While highlighting the positive, I don’t want to make you think that there weren’t awful moments. What were some of the worst things? Well, the first thing that happens with a spinal cord injury is you need to be catheterized. Yep, one of the big celebrations at the rehab hospital is when someone gets the ability to go to the bathroom back. For me, it happened about a month after the accident. For some people – even people who are able to walk- it may never come back. Let me tell you: going to the bathroom naturally is an event worthy of being listed daily in a gratitude journal for the rest of your life.

The second thing that was really annoying was the six months that I wore a TLSO – an orthotic device that looks like a turtle shell and protects your Thoracic, Lumbar and Sacral areas while you heal (hence the acronym). The only time I took it off was at bedtime and it was to be removed only while lying down. I even showered in the stupid thing-ugh.

One of the hardest things about an event like this is that no one can be totally certain of the outcome. So you have to work hard, pray hard and celebrate every success that happens – while allowing yourself to learn from the things that don’t happen in the way you planned. Hmmm. So how is that really different from the journey of life that each of us takes? It’s not. It’s just a very dramatic way to awaken to reality.

We like to think that we have a handle on everything and it’s all under control. Well, life is never totally under control. I think it’s important to plan and set goals. I just have learned that you better be able to go with the flow when you get surprised. Because you can do all the right things and still lose a job or a loved one or get impacted by a natural disaster. You can see the undeserving experience success while some people who work really hard just don’t get there. You can watch helplessly while wonderful people die too young.

Everything in life is a mystery. I wear some of my wounds from life on the outside while others may carry it all on the inside. I’m not sure which is harder- either way, we all have to learn to ask other people to help and support us. Because people have been asking me lately about what I’ve learned from my unique story, I decided to share my journey and I hope that it may help someone else on theirs.