Hope & Reason

Disclaimer: this blog entry contains one (1) single usage of the “F word”. If you know me well in real life, you know I can be a bit foul-mouthed at times. I typically don’t swear much in my weblog entries (that I post publicly, anyway), but there’s a first time for everything, I guess. I’ll leave it up to you to decide whether it was warranted or not. If it will offend you, please don’t read this.

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You’ve heard me say it; In fact, at this point, it has more or less become the symbol and mantra of my recovery from the car accident, spinal cord injury, and subsequent losses. I have hope: these three words (listed in order of importance) have been the theme of my recovery. However, I haven’t really written a whole lot about what this means to me. There are two prongs to hope related to healing as I see it: faith and science. You see, I was a Christian. Whoops, I meant, I AM a Christian. Hm. Still not quite right. Well, whatever I am at this point…that’s what I am. So maybe I’ll just say, “I AM”. Uhhhh, except that feels kinda like simultaneous plagiarism and blasphemy. Hm. On July 28, 2007, at about 3:00pm, I died. Ha! Ha! Just kidding! I almost died. By now you know what I’m referring to (since you’re reading this here), but to briefly sum it all up: I broke my neck. Onramp, Datsun, Koti, Truck, impact…silence. I’ve found myself in a place that blurs the lines, ever since the moment I woke up on the side of that road, just minutes after the collision. Before the accident, my faith was fairly easy to define. After that event, my perspective has been ever modulating as I have oscillated between despair and hope in an endless loop. Living in an ~85%ish paralyzed body is tough, of course, but what really makes it much worse is the neuropathy (nerve pain) that emanates throughout every part of my body that was paralyzed when my spinal cord was severely damaged. I’m in pain 24hrs a day, everywhere below my shoulders. It’s damn near impossible to focus, and maintain a steady pace when you feel like you’re burning alive. I have often written about the suffering I’ve endured both with humor and seriousness, but this pain I’m in is not funny. I’ve gotten by with the help of my physiatrist and pain specialist by taking prescribed narcotics and marijuana based medicine, but even with the help of these interventions I’m typically operating at about a 5 or 6 (out of 10) in terms of pain level. It’s pretty tough to endure.

When I was injured, I was 27. There’s never a “good” time in life to become paralyzed, that much I’ve realized, but I do believe this is definitely the best time in all of recorded human history to be living with a spinal cord injury. Medicine and technology have both advanced (and are advancing) rapidly in the time since Christopher Reeve brought spinal cord injury and tetraplegia to the forefront of our cultural consciousness so many years ago. Science and medicine has raced forward making what was once impossible now either a reality, or at least, probable. However, in the midst of exciting headlines indicating the immense progress in SCI related medical advancements, I have had more than a few people engage me with comments about how they’re certain (after reading a book and article or two hyping the technological singularity at hand) I can cheer up because Science is coming to my rescue; I’ll be walking again in ten years! At first I would humor them, and try and listen politely, but over time I grew weary of those well-meaning comments. I am on the Board of Directors of what is ostensibly our local chapter of The Christopher Reeve Foundation, and I am truly passionate about advocating for the prevention and treatment of SCI. I was as amazed as everyone else by his grit and resilience. However, one thing Chris Reeve brought about (which I struggle with) is the idea that there is a broadband “cure” for SCI coming. He proclaimed on many occasions that the “cure” or treatment for reversing SCI was just around the corner, and that if we could only put forth more funding for research it would become a reality within his lifetime, even! However, the truth is, every mainstream authority on the state of research into the “cure” has emphatically stated that not only are we not there yet, but that a true “cure” isn’t even close! In addition to that, very few people realize after reading related optimistic headlines about stem cell therapy, exoskeleton orthotics, etc. that osteoporosis in the lower extremities and scar tissue surrounding a damaged spinal cord would more or less prevent any such therapies or treatments from truly being effective reversals of paralysis. These facts have led The Chris Reeve Foundation to expand their focus beyond the “cure”, into advocating for all that is necessary to enable disabled people to adapt to life in a paralyzed body, rather than to defer living until science and medicine can catch up, and restore their bodies. So although the faith I had once regarded with far more certainty has evolved, I have not traded it in wholesale in the hopes that science and medicine will patch me up again like Humpty Dumpty (who was a dummy for sitting up that high to begin with).

All of these potentially forthcoming advances in medicine, and our understanding of SCI are great, but do you know what Christopher Reeve died from? It wasn’t something complex and rare. It wasn’t old age. Instead, in 2004, at the age of 52, Christopher Reeve, Superman, died of myocardial infarction (a heart attack) brought on by sepsis…from a bedsore. A BEDSORE. The more contemporary term is pressure sore or pressure ulcer (because they can be caused by lots of things and not just from laying in bed). Pressure sores are caused by pressure just as the name suggests. They occur commonly in a person who cannot feel certain parts of their body when they neglect to realize or notice that something has cut off blood flow to one of the paralyzed areas of their body, typically through prolonged exposure to moderate pressure from sitting or laying (but can also be caused in short time period with higher, more significant pressure). Yeah. It’s 2013, and science is awesome…but not quite as advanced in some very practical terms. I pay attention to the state of research related to SCI, and I’m ready to shut down anyone who tries to paint me a rosy picture of the men and women in lab coats who are coming to save me soon. As I said, every accepted, mainstream authority on SCI disagrees. But, wait a minute? I thought we were talking about hope? Well…we are. When I broke my neck, I had been a professional musician for about a decade. I had released two albums, and performed on one other album, as well as releasing a number of singles. I was just a working musician, no major fame or glory beyond a few hotspots on the West-coast. However, in the two years preceding my injury I had become a part-time music minister, having worked in various capacities as a music director, pastor, and band leader at numerous churches. Having a steady paycheck while doing something that I love was good for me in a lot of ways. I had been a sole proprietor as a musician, and had often played in church venues throughout my career, and since my faith was important to me, it was a natural thing for me to work as a church musician.

When I woke up on the side of the road there were two people who stood out to me. The first was a man named John who happened to be driving by and heard the crash. He ran over to assist and was one of three people who helped extricate me from my crushed Datsun. The second was a man named Phil who was the EMT who drove me to the hospital. Both of those men were there for me in what was my darkest hour. I asked both of them to pray for me because I believed I was going to meet my maker within minutes. However, in the past six years I have slowly stopped attending church (for a number of reason which I’ll get into some other time). God has become far more mysterious to me. The bible has ceased to make much sense to me, and my questions seem to echo back to me whenever I ask them. Somehow, despite the fact that I’m not sure how to precisely label where I am currently; I would not say I’ve become an atheist, nor would I identify myself as agnostic. In fact, I still believe in God and I still want him to believe in me. When I was first injured, thousands of people took up the cause of raising money and adapting the home that I have now lived in for the last six years. During that process of completing rehab and returning home, I had maintained an unusually hopeful and optimistic point of view. It was shocking and amazing to many people that a man who had just lost so much, and was merely beginning what would almost definitely be a life filled with suffering and pain could have such a positive attitude. It seemed supernatural. This was one reason why so many people volunteered to help me. Over time, my attitude has faded somewhat, but not in a bad way. You see, rehab was filled with information; it was a crash course in spinal cord injury. Over the years, I’ve also learned a lot more, but some of the most important facts I learned in rehab, which gave me the information I needed to temper my hope with reason. But lest you think I’m focusing only on the shortcomings of science, I have definitely had more than my fair share of weirdos who wanted to cover me with crystals or douse me in oil. Some wanted to scream in my ear while commanding the demons to depart from my corporeal being. One man even commanded me to “take up my mat and walk”. Right. Had I not been completely paralyzed, I would’ve knocked him the fuck out. But mostly, people of faith who knew me would just cry while they quietly said a prayer asking God to heal me in any way he so chooses. This was the first big issue of hope that I had to deal with: healing.

There are many Christians who believe that God is at work today, roaming the earth and actively, physically healing human beings in a supernatural way that defies science, as a part of his greater plan. At first, I wasn’t sure what to believe. Even though I heard many stories, I had never seen a miraculous healing with my own eyes, and I didn’t believe for a second any of the “healings” that I had seen on TV. However, I wasn’t entirely opposed to the idea; I just simply didn’t have any proof or reason to believe that God was (and is) indeed doing these things today. At one point, I had solicited my friends on Facebook to please share with me any evidence they had, either concrete or anecdotal, that could help prove that God is indeed granting miraculous healing to some people in need. I received a handful of responses, and all of them were unique and interesting. However, I didn’t get any hard evidence that wasn’t only anecdotal in nature. This spurred me on to search the web, YouTube, Google, etc. to try and find videos or x-rays that could easily prove a miracle had taken place. It wasn’t that I expected every single instance of healing to have been caught on tape, witnessed by dozens of people, or otherwise documented In the form of medical records, and the like. However, I reasoned that if indeed God is still actively healing people (whether it is frequent or a rarity), that in this day-and-age of social media and the Internet there must be at least one documented verifiable healing that I could find. I came up empty. Of course, I realized that God could be healing people in ways that could coincide with the natural healing that would have taken place had he not intervened…but that seemed silly, redundant, and unnecessary. Finally, I had to admit to myself that if God is indeed currently at work healing many people, I couldn’t seem to find even one provable, documented incident. This was a breaking point for me. It wasn’t that I needed for it to be true that God is in fact healing people today. Instead, I just wanted to find evidence, and my rationale was simply that if it is indeed occurring, there must be at least one example that can be found, of a documented and verifiable healing miracle, given the fact that even our phones have cameras now!

Spinal cord injury is complex and there are several major misunderstandings among laymen that I could identify which have led to some recoveries that have been labeled miraculous that definitely did not fit the bill in the sense that the prognosis for those individuals would have left no doubt in the mind of anyone who truly understands SCI to conclude that their recovery would have naturally occurred given the specific dynamics of their injuries. I would be specific and identify the stories, but I am hesitant to do so. Either way, while it’s certainly true that any given person’s story of recovery from SCI COULD be a healing miracle, I would assert that it is important to be able to identify the stories of healing from SCI that are natural, and non-miraculous, as such. It’s not that I want to take credit away from God, I have just simply heard too many stories of persons regaining feeling or function in paralyzed parts of their body after spinal cord injury that were claimed as miraculous, when the same thing typically happens in others who share an injury which falls in the same category (for more in-depth information, lookup: complete vs. incomplete SCI, spinal shock, ASIA levels). I could go on and on about this, but I haven’t the energy or the time. The bottom line is this: I am no longer where I was spiritually when I was first injured. This can be easily misunderstood as bitterness or anger towards God, or some other similar line of thinking, but it’s not true. I don’t blame God for my SCI, just as I don’t blame him for 9/11, or any other disaster, big or small.

However, my reasons for not believing that God is actively performing healing miracles have nothing to do with where I am in my faith. The two issues are not related. The truth is, I’m not even quite certain as to where I am, nor am I eager to identify where I am; I am wherever I am. I cannot change that, and I am not on a quest to change it. I will be ok. God will find me, and I don’t think he’s offended by my questions and doubt. I believe he is big enough to handle my doubts and uncertainty. Six years ago, if you would’ve asked me why I have hope, I would have given you a fairly defined answer. That is not the case today. My hope is no longer that God will come save me from this. However, the hope I DO have is not necessarily based completely in science, medicine, rational thought, logic, or reason either. In fact, I think hope is often quite UNreasonable, and I would even say my hope is often quite illogical. Yet, the type of hope which is not based in probability or reason can be dangerous. I had way too many well meaning people tell me they KNOW I’m going to walk, sing, and play again. It’s not a good idea to say that to someone who is struggling desperately to come to terms with, and accept the horror of their paralysis and loss. I would even call it unfair. It is quite acceptable to be encouraging, but I don’t think it did anything but hurt when I was approached with these kinds of comments. However, I do think it is important to be gracious, and understand that sometimes people will say things with the right intention, and yet end up being harmful simply because they don’t know what else to say. On the other hand, perhaps we should not say anything if we aren’t certain about what to say. But I digress. The nature of hope is mysterious to me today (as is the nature of God). Do I wish that God would reach down and undo what happened? To some extent, yes. But my hope stretches far beyond that kind of thing. I don’t believe God is on his way to rescue me. I believe he wants me to rescue myself, to prove that I am resilient, that I can persevere, that I am strong. I am just on of the billions of people on Earth, so why would God single me out for special healing? I struggle and trudge on like everyone else, making my choices as they come, often failing, often losing strength. When I’m weak, I lean on him, often in ways that aren’t very tangible. And even when I am almost certain that he’s not there, I still press on because I want to make my friends and family proud of me for fighting hard to regain the sense of purpose and passion that I used to have.

If you’re reading this and have a response, please understand that I’m in no way trying to convince anyone who disagrees with my methodology or findings. If you strongly disagree, and you’re certain that I’m wrong, then my opinions shouldn’t shake you. I’m not writing this in hopes of starting a dialogue or debate over God or his work. If you think science will have me walking in our lifetime, that’s fine. This is my blog, and my experience of suffering, pain, grief, and loss. I hope you can understand that this is where I am on this leg of a long journey. Oh, and don’t forget, I am a man who has battled the horror of paralysis and constant pain, yet both my soul and mind burn with hope. My hope is deeper than I first realized; it is astounding and compelling, just like my story so far. But there is a story yet to be written, one of successes, failures, trials, redemption, tragedy, despair, loss, pain, comfort, life, death, and, of course…hope. I still have it, even when I don’t know why. In 41 days it will have been 6 years since the accident that changed…me. I used to be a professional, recording, performing musician, a singer, violinist, and guitar player (among other things). Now, I live my life in a wheelchair, I can’t use my fingers, I can no longer sing, and I can’t walk.

I am 33, I live in constant pain, and even when I cannot explain or define it, I have hope…

I. Have. HOPE.

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