***RADIO SILENCE***

Ok… hear me out… I know it is incredibly audacious of me to announce the start of a blog then allow several weeks… no, regretfully months… to pass without writing a single post. Of course, this was not my initial intention.

To be forthcoming, the past few months have not been easy for me. I have taken some time to try and reconcile my thoughts and feelings… and I’ve worked really hard to try and create some level of routine surrounding my injury. I was discharged from full-time rehab back in November and have been trying to maintain a regiment ever-since that keeps me motivated, engaged, and feeling positive. Some days are better than others. Secondly, and perhaps more notable, I am just physically tired… I have been so laser-focused on trying to monitor each minute gain in strength & movement I’ve made, that I hadn’t realized how desperately in need of a break I was. I took some time to rest and process these feelings. But as I learned during this time, there is never really a break from a spinal cord injury. It sort of just follows me like a stubborn shadow.

I am approaching 18 months since the date I was injured. During this time, I have spent nearly every waking moment dedicated to therapy and focused on improving my strength. During my downtime I researched studies about SCIs, worked with insurance, filed for grants, and tackled all the nuisance stuff that comes with healthcare in America. To make things even more difficult, I spent nearly every one of those days in distracting pain while pushing my body even harder than the day before. It has truly been a difficult year and a half… But the effort has paid back, quite a lot in fact, so I remain grateful and hopeful! 

During this time retracted from the public eye, I have traveled to Spain (more about that later). I started practicing walking with one-crutch (a significant gain since starting on crutches). I have acquired a modified vehicle (which allows me to drive again). I have regained more strength and sensation. I have picked up some passtime electrical projects to keep my mind sharp. I have been to several concerts & events, and learned to navigate the community with much greater ease. I am masterful in the wheelchair now. So despite all of the difficulty since my last post, I would consider all of these to be significant WINS for me. I’ll take it!

I have also discovered during this time that one of the strangest signatures of an SCI is how the symptoms balance carefully between illness and injury. 

The injury portion is pretty straight-forward:  It can impact a single vertebrae or perhaps several different areas. It is typically either a “compression fracture,” where just like it sounds: the spine is compressed. Or it can be a “burst fracture,” as is my case, where the vertebrae shatters causing damage to the spinal cord. Where and exactly how the damage occurs can change the outcomes of an SCI significantly. For one example: an injury to the side of the spinal cord can cause “Brown-Sequard Syndrome,” which can cause paralysis on the same side of the body as the injury site (below the level of damage) as well as impacting “pain and temperature sensation on the opposite side of the body.” Alternatively, an injury to the opposite side would have an exact opposite effect. The higher the injury is on the body, the more significant the damage can be. Higher injuries can result in quadriplegia whereas lower injuries usually result in paraplegia. (As is my case.) All of these details I had not dedicated a single thought about until I ended up in a wheelchair. Nevertheless, the injury portion of SCIs is pretty straight-forward to understand.

However… Unlike many other injuries, one doesn’t simply “heal” and fully recover. This is often the most frustrating question I am asked: “When will you be fully healed?” 

That leads me to the far more challenging side of SCI’s: the “illness” that the injury imposes. This can also vary greatly from person to person depending on the level and severity of the injury. This can result in intense neuropathy (numbness or total loss of feeling) to intense nerve pain (burning, tingling, etc.) Both of which I experience everyday.  It can significantly impact bowel and bladder function, as well as hunger and thirst as I have discovered. It can result in many secondary injuries like pressure wounds, etc. Another big challenge is the mental health portion. Many studies have shown that the spinal cord is essentially an extension of the brain itself. SCIs therefore, can result in impacts to mental health similar to how a TBI (Traumatic Brain Injury) might result. Fascinating stuff, indeed… or at least that is what I thought while learning as much as I could. 

On a final “scientific” note, it is also important to point out that “time is of the essence” when it comes to SCI’s. In the neuro-rehab world there is a phenomenon commonly referred to as “neural-plasticity.” The general principle behind this is that the human body has the ability to regain damaged or interrupted neuro-pathways provided those pathways generate a signal, indicating the need for further “input.” In regards to my injury, for this example, in order to regain nerve and muscular function, I need to actually utilize the nerves and muscles to allow them to send signals to my brain indicating the need for further input. This then allows the nerves to establish or strengthen a communication pathway. Essentially, I am teaching myself how to walk again. This is a bizarre conundrum when it comes to SCIs. Previously it was believed that the brain teaches your body how to move. On the contrary: your body teaches your brain the purpose of the movement & function. Your brain then coordinates those functions. (It is similar to how they train “AI” for computer learning… without providing AI with an input, it has nothing to go on.) 

You can imagine how frustrating it is to know how to walk PERFECTLY well, yet despite having that knowledge, having to “re-teach” your brain the basic functions of walking. During my therapy journey, I have been practicing walking and standing to continually provide the proper “inputs” so my brain understands that need & function and triggers the corresponding muscles to respond accordingly. Although neural-plasticity can theoretically last throughout your lifetime, it has been shown that the sooner and more vigorously these inputs are provided after an injury, the better the chances are that more neuro-recovery will be achievable. Because of this fact, every single day… basically every single moment aside from sleeping… I’ve been racing against the clock to try and reteach my brain everything about walking, climbing, balancing, etc. 

My apologies for going down the scientific “rabbit-hole” regarding SCIs. The purpose of this blog is not to delve too-deep into the science behind this injury. I don’t want to turn this into a medical journal. Instead, I want to focus more on the positive aspects of overcoming an injury like this and learning more about yourself when facing a tremendous challenge such as this. However, without providing a little more insight into the purpose of my therapy over the past year and a half, and without taking the time to thoroughly explain the nature of the injury itself, I found it would be really hard to write a blog about SCIs. I hope that by providing a basic, fundamental, understanding of the injury and the goals of my therapy, you might have a better idea of what this whole journey means for me, and by extension, other SCI survivors. 

Now that I have gotten the majority of this “hard to chew” stuff out of the way… I hope to shift towards some of the amazing experiences and connections I have made since my injury. And of course some of the stuff on the horizon. Please keep a lookout for my next post when I kick this off… starting with, drum roll, our trip to Barcelona, SPAIN!