Summertime Nostalgia

“So what do I need for backpacking this weekend? It’s going to be a shorter trip but I still need food, clothes, and supplies for three full days and nights… And next Saturday I’m going on a river float all day with friends, should be so much fun! Oh and I have to remember to borrow my roommate’s water filter for the next camping trip coming up in a couple weeks. Don’t want to be stuck in the mountains without sipping the good stuff from the streams and rivers!”

These were the typical thoughts running through my head during the summer time a couple years ago. Having spent the previous numerous summers working in the travel industry and with little free time, I had come to appreciate having the freedom to explore the many outdoors opportunities that were at my footsteps in Northern California. Yosemite, Lake Tahoe, the giant Sequoia trees, Big Sur, the coastal redwoods, and many of the gorgeous peaks of the Sierra mountains were all less than a half day’s drive from my urban life in the middle of San Francisco. I had the unique opportunity to live in a dynamic and fast-moving city and yet have access to some of the most beautiful natural scenery around; a truly fortunate situation to be in and one for which I was continuous grateful.

Fast forward to now and some things haven’t changed. My friends are still going on those backpacking trips, they’re still hard at work seeking undiscovered lakes or less traveled trails to explore and planning fun adventures. The river floats are still happening as are the epic day long bike rides that customarily include a pastry and coffee jolt or a cold beer conclusion. The roaring campfires (and the stories and laughter that come with them) are still burning strong, and the miles and miles of the fun-filled drives crisscrossing the varied topography of the California that I love so dearly are still being driven, albeit in slightly nicer cars reflecting the improved career trajectories of my thirty-something social community.

The major difference, of course, is that I’m not there.

It’s like watching a movie you’ve seen a hundred times but with one of the major actors missing. It doesn’t feel right.

To say that I’m envious of my friends’ adventures is the understatement of the century. I would give anything to be tromping through the mountains with a backpack on my shoulders, laughing and chatting and admiring the grandeur of mother nature’s best offerings. And honestly, the one thing that may be harder than not being on those adventures, is hearing about them first-hand and masking my frustration and resentment with my attempts to conjure sincere excitement.

So what’s keeping me sane this summer? Pretty simple actually. My desire to reach my shorter-term goals of recovery, some of which are looming closer on the horizon, fuel me just as much as a summer adventure would. I know that the sense of accomplishment I would receive from standing up on my own or taking a few unassisted steps in a walker would fulfill me more than these adventures did in the past. I’ve worked so hard for so long that seeing the fruits of my labor would give me immense satisfaction. While my current summer adventure is a bit more lonely, and a lot less scenic than my former escapades, the rewards are, to say the least, tantalizing, validating and worthwhile.

Two years since, and still moving forward

Yesterday, July 8th, marked two years since my Spinal Cord Injury, since everything that I knew about the world, about myself, about my body, and my life was turned upside down in an instant and launched me on this whirlwind of a journey that is recovery.

I wasn’t entirely sure if I was going to post about this strange date as its relevance is quite insignificant to me now. I remember last year, as my one year anniversary approached, I was stressed out and anxious (read my posting here if you’d like). Because the traditional thinking in our medical system says that most or all of recovery from SCI will occur in the first year or, if you’re lucky, in two, it was disheartening to think about the magnitude of that date and all that it implied. Oh how so much has changed…

Shortly after that day, I stopped counting the months since my accident. The eighth of the month, which had always been so present in my day-to-day consciousness especially as the calendar changed and a new month would arrive, became irrelevant. For the last many months, I actually completely forgot about the eighth of the month as I realized how unimportant it was. I told myself from the beginning that I was going to engage on the path to full recovery and that I would give everything I had to achieve my goals. Therefore, why should an antiquated way of thinking – an outdated medical approach that has been proven wrong repeatedly by those around me, one that quells and limits the spirit of recovery instead of encouraging it to flourish – why should that define my recovery? It shouldn’t, and it won’t.

I fully believe, as I have since the day I was injured, that with perseverance, diligence, unwavering commitment and by keeping my dream alive within me, that I can and will get back on my feet, no matter how long it takes. Also, I can’t overlook that an exceptional amount of my healing and breakthroughs have occurred only in the last few months! Maybe my spinal cord and my body did need a longer period of time to process and accept that initial trauma, but what started as the weakest me that me has ever known, has transformed into a period of continuous recovery and accomplishments.
Although it has been two very hard years, more trying, devastating, arduous, and insurmountably difficult than most anyone can imagine, I have learned tremendously during this time. I have challenged myself to an extreme I could never imagine and I have witnessed how much love surrounds me on this fight of mine. For that, I’m grateful. For the opportunity to continue on the path to realize my dream of walking and running again, I am hopeful and I continue to fight.
So thank you two year anniversary, thank you meaningless calendar date, thank you for reminding me that the human potential is not defined by 12 month cycles or doctors’ prognoses. If the spirit to heal is present, then the healing will persist. And further forward I push, looking forward to the next breakthrough and the next stage of recovery.

My own little island

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.” 

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.” 

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.

http://www.change.org/petitions/healthcare-providers-medical-insurance-companies-provide-the-minimum-care-to-paralyzed-individuals

Something to look forward to

It’s easy to get overwhelmed with the slow pace of recovery following my Spinal Cord Injury (SCI). I have written about this before, about how challenging it is to work SO hard every day and focus so much of my energy on healing and recovery, yet accept that the changes and improvements come oh so slowly. (But the good news is that at least the improvements HAVE been occurring…).

Patience, as it turns out, is one of the most crucial factors for anyone wanting to recover from this devastating injury, and patience, as I’ve known my whole life, is absolutely NOT a quality that I embody.

Imagine living every day with no idea how soon your body will improve (if at all) and with no assurance that you’ll ever get to achieve your objectives. Imagine going through the majority of your day working towards a goal that may not be realized for a matter of months or years. That, in a nutshell, is what I mentally encounter and struggle with every morning when I wake up, and every night before I go to sleep. It’s enough to drive someone crazy, but thankfully I’ve maintained my sanity thus far. (Note: I will do my best to warn all of you with a cautionary blog post if I ever feel like I’m going over the edge…)

One tactic that has helped me maintain my focus and patience, is to always have something to look forward to.

This is something I’ve done my whole life actually, as a way of rewarding myself for completing a task or having the patience to get through a challenge, obstacle, adverse situation, or simply, a long wait. That said, it’s taken on a new precedence now as I use this tactic all the time to keep my concentration and focus on recovery intact, without getting overwhelmed by the daunting elements of time and uncertainty.

As long as I have something fun and positive to look forward to, it gives me a reason never to give up or lose patience of my ultimate goals. I tell myself that even though I may be frustrated or impatient right now, I gotta make it through to (insert event to look forward to here), and then I’ll reassess; no giving up before that. Once that event happens, I think of the next one and the process begins again.

I’m not necessarily referring to looking forward to huge, important moments or events. Most of the time, it’s as simple as a relaxed weekend brunch with my girlfriend, an upcoming meetup with friends, a trip to the swimming pool (one of my favorite therapies), or an afternoon in the park. It doesn’t take much. The beauty of this is that when there is a bigger thing to look forward to (i.e. a trip out of town), it motivates me even more and fuels me to keep working hard until I get to that moment.

I know it seems simple or obvious to point this out, but the fact that I’ve become so conscious of the importance of this tactic means to me that it’s worth acknowledging and appreciating.

100% Active mental effort

I want to attempt to explain one of the more nebulous and perplexing aspects of my recovery. I’ve been wrapping my head around this for a while now but I haven’t quite figured out how to put it all into words and hopefully make it understandable for people without a Spinal Cord Injury. There is a significant process that is noticeably more difficult for me now than before my accident: the monumental, almost overwhelming mental effort that I have to put into all of my rehab.

Every exercise, movement, or activity that I do involves a massive mental commitment from me. This is nothing like what most of us are used to doing when we lift a weight, take a step, hold a stretch or pedal a bike. As an able bodied person, those actions are performed subconsciously. You don’t have to tell yourself and instruct seven different parts of your arm how to curl a dumbbell… you just do it. You don’t have to close your eyes, channel your breathing, try to contract one muscle while relaxing another just to take a step when you’re on a run… you just place one foot in front of the other and continue on. Not so with a Spinal Cord Injury.

Everything I do involves me REALLY thinking about it, specifically when it comes to those parts of my body that are most damaged by my injury and not functioning properly. The nerve signals just aren’t getting through like they used to so it takes me that much more effort to try to engage a muscle that hasn’t effectively received the signal to engage. This is what makes an injury to the nervous system so debilitating. It’s not just a matter of effort. If it were, then the many hours a day I spend on my rehab would have much quicker results.

I think back to what it felt like to exercise before my accident and it all just seems so easy to me now! I didn’t really have to think THAT much about what I was doing. I would just DO things, perform movements, complete activities, and ultimately I’d get stronger and fitter. I was never mentally drained from going on a run or biking half the day because I could do that repetitive motion subconsciously and with little to no mental strain, all the while listening to my iPod or chatting with a friend. Nowadays, if I don’t give 100% of my mental attention and focus to the specific movement I’m doing, not only will I have little to no chance of effectively completing the movement, I will finish the activity without any sense of accomplishment.

Another way to put it is that those muscles that I’m trying so desperately to wake up and reestablish the connection with will only have the teeniest, tiniest chance to get that signal from my brain only if I try really, really hard to break through the neurological impasse that’s taken root in various parts of my nervous system. This whole process has educated me greatly on how incredibly electrical our bodies are. No matter how big or strong our muscles may be, nothing can happen unless the wiring that’s distributed throughout the body is functioning properly. As a result, I often have to close my eyes and remove all visual stimuli in order to be able to give sufficient mental awareness and energy to what I’m doing.

This may seem arduous and exhausting, and it was at first, but now I have to admit I kinda like it. It makes me very present in what I’m doing, it forces me to tune everything else out and focus fully on the task at hand and although I wish I could see the results more quickly than I do, I know that this tremendous effort is what will sustain my recovery and continue the healing that I so desperately strive for.

A few thoughts on independence

What does it mean to be independent? What kinds of actions or activities are essential to do ourselves in order to feel satisfied with our own abilities and without having to rely on others? What would be the functions you would have to do in order to feel like you have the most minimal sense of independence?

Often times, when strangers look at me, they see the wheelchair, they see me unwillingly sitting down amidst a sea of standing humans and they may think, “well that guy can’t walk at this moment, but otherwise he seems to be doing ok.” My friends often tell me something similar, that I don’t look like I’ve suffered a major trauma anymore, that I’ve gotten strong enough to the point where I simply look like a normal dude, who just happens to be sitting in a wheelchair.

One of the more unnoticed aspects of Spinal Cord Injury is the loss of independence. To go from being able to do nearly everything for yourself to suddenly have to rely on others for practically everything is an awful reality of this situation. Many times I’ve heard the belief that there is no such thing as full independence, that we are all dependent on others in some way. This may be true, but to have any of your independence taken away from you is incredibly humiliating, frustrating and devastating.

I absolutely hate the fact that I have to ask for help of any kind from other people, and that it happens so frequently. Before my accident, I was thrilled to be as independent as I was, to the point that one of the main reasons I chose to ride a bike as my primary form of transportation was so I wouldn’t have to rely on the potential complications of a car or the improbable and unreliable nature of public transportation. I wanted to be as self-reliant as possible. If there was anything about my life that I wasn’t satisfied with, it didn’t take me long to take initiative, come up with a plan and make a change. (Granted, I was – and still am – fortunate enough to live in a society and country where so much was available to me and I actually had the opportunities to make significant life changes…I don’t take this for granted).

Nowadays, I find myself frequently prioritizing the actions and situations that I most greatly wish I could do independently. To say that the loss of independence that has come with this injury is a blow to my pride is a massive understatement. It’s one of the things that bothers me multiple times a day, everyday. But at the same time, I’ve been able to appreciate the massive gains I’ve made while remaining focused and motivated to continue to improve.

So I want to end by acknowledging what made me write this post now. A friend, and fellow SCI survivor, recently made a short video emphasizing the next step in her quest for independence and watching it made me think about all of these questions and about how my own thoughts on independence have changed since my injury. So I’d like to encourage you to think about what it would be like if you instantly lost the ability to do most things for yourself, if you had to rely on others for those things that you used to do without any thought or consideration, and what things are most important to you, for your independence.

If you’re interested, here’s the link to the video:

http://www.youtube.com/watch?v=LTDZ7pZYqbg&feature=youtu.be

If you build it, will it come? And when? And how? And….

One of the most memorable movie quotes of my childhood was from “Field of Dreams” where Kevin Costner is told, “if you build it, he will come” in reference to building a baseball diamond in his cornfield which will summon his beloved baseball players from the past to come and play ball. A pretty straightforward cause and effect statement. Do this, and that will ensue.

I find myself thinking of this quote a lot recently, in the context of my recovery and dealing with all of the questions and doubt that arise and try to throw me off track. I’ve been “building it” for over a year now. This time last year is when I felt strong enough to ignore the lifestyle of adaptation and flat out laziness that the medical establishment was providing me, and took the initiative to start an aggressive routine of rehab, exercise and physical and mental hard work.

Up until my accident, I had always understood that the causal relationship between hard work and reward was reliable and relatively short-term, particularly with physical improvements (I wrote an entire post about this subject). Now, after a year of working so hard everyday, of literally channeling so much of my energy towards recovery and healing, I’m often left wondering…ok, can someone throw me a bone here? I need something to happen already!

Yes I’ve had improvements, yes my health and overall strength has improved, yes I can still wiggle my toe, yes I can sit taller, push further and continue to challenge my capabilities and improve upon them, but all of that said, I have to put this out there: I need a breakthrough.

I’m reminded of the conversations I’ve had with friends so many times about being single and wanting to find a girlfriend. Or of changing job paths and furiously job hunting and the advice we would always give each other when frustrations would hit new highs. “You’re looking too hard for it. Sometimes these things happen when we ease up on searching or expecting them, and then all of a sudden, boom! it happens.”

I have no doubt that this applies to my current situation. I want improvement badly. I want validation for all of this hard work I’ve done and I want it to be more than a toe I started wiggling nine months ago or gradual strength that I’ve built up over time. But I’m looking so hard for it! I wake up every morning and wonder if this will be the day that I’ll have that breakthrough. I’m trying not to expect it, but I expect it. And then I try to rid myself of the expecting of not expecting. And so it goes….

I wish this injury was more forgiving in this way. I wish there was a formula and even if I knew it would take a long time, I could find peace in knowing that the next breakthrough would indeed arrive. But that’s not the way this injury is. It rips you apart and takes away everything and leaves you with more doubt, uncertainty and ambiguity than you could ever imagine.

I can hear the advice from everyone already: Get rid of the expectations. Cultivate patience. Find peace with the situation. Make the most of the present moment without any consideration of the future and what it will bring. Life is too short so enjoy what you have right now and relish every moment.  I say, easier said than done. 

The funny thing is, I’ve actually been able to do all of these things but only to a certain extent. Much of my efforts recently have revolved around patience and letting go of expectations, and I’ve certainly gotten better at this. I have no choice but to continue doing these things and physically continuing to work as hard as possible but I still can’t help thinking that because I’m building it, it will come…

Defining myself

How do we define ourselves? By our occupations and interests? By our fundamental qualities and instincts? By the people around us and the communities that we build? Or by the events and occurrences that happen to us whether they’re in our control or not? Why am I even asking this question?

I think about this often. How I define myself is crucial to my overall attitude, outlook, and potential for recovery. As I move forward with my rehab, through various achievements and struggles, and as I encounter the many others who are somehow associated with this injury, the question I think about most often is this:

Am I defined by my injury or am I defining my injury?

One of the first posts I wrote on this blog had to do with the semantics and terminology used for those with Spinal Cord Injury (SCI), specifically the use of words like “quadriplegic  or paraplegic.” I explained how much I hated these terms and now I have a better understanding of why I still get frustrated whenever I hear them. It has to do with how I want to define myself after this injury.

When someone has cancer or HIV or Multiple Sclerosis or a stroke or a hip replacement or a number of other medical issues, they don’t start calling themselves something related to that affliction. There is no “hi I’m a cancerplegic or stroke-a-plegic” equivalent with these other situations. People instead say, I have cancer or I’ve had a stroke or I have a bad hip or whatever it may be. They are stating their medical condition as something that they have, instead of something that they are. As challenging as their respective struggles may be, they are not defining themselves by their injury.

A person may choose to define themselves in whatever way they want, as a teacher or construction worker or engineer, as a father or uncle or a Stanford alum or a tennis player or musician…. but I don’t believe that a medical condition has to be a part of that. Which brings me back to my continued frustration with SCI semantics. Why do people immediately want to define those with SCI as a quadriplegic or paraplegic? Why do most people so quickly accept this terminology and start using it?

There is a difference between saying that you suffer from quadriplegia instead of saying you are a quadriplegic. I take less issue with the former term but I refuse to use the latter. I know it may seem stubborn and trivial for me to be harping on these small differences in the way we talk, but I think it makes a world of difference.

Words matter. I truly believe that how we talk about something, specifically what words we use, has a huge impact on what we expect from it. If you repeatedly tell yourself that you’re going to have fun on your weekend trip, it means that’s what you expect, and I think it’s more likely that you will actually have fun. Conversely, if you tell yourself that something is negative and bad and you keep using those words to describe a situation (even if you’re using those words privately and not out loud), chances are that situation will prove to be negative. This relates to what is commonly known as the law of attraction. What you put out  to the world, is closely related to what you get from it.

How do I expect myself to get better and recover if I define myself by my injury? Why is Spinal Cord Injury unique from other medical problems in this regard? Is the common thinking that this injury is so debilitating and insurmountable that from day one, we need to start defining people with these funny sounding words?

I am perfectly comfortable stating that I have a Spinal Cord Injury. This is honest and accurate. But the moment I start using silly words to define myself, I do an injustice to my recovery. If you have a similar injury and are motivated and serious about getting back on your feet, I would suggest you avoid using those words and think about how you want to define yourself. I think we can all benefit from taking a moment to think about what defines us, what doesn’t, and why it matters.

Repetitions and rewards

As a lifelong athlete, I’ve always understood the benefits of working hard, challenging myself physically and realizing the results of my actions in a relatively short amount of time. I remember being nine years old and amidst my attempt to play every sport under the sun, I became more interested in soccer and decided to step up my game. Like any soccer player, I inherently wanted to ignore my left foot and exclusively use my dominant right foot to dribble, pass and shoot.

One day I was kicking the ball around with my father and he told me, “Son, you don’t want to play like a one-legged chicken. You have to use your left foot and train it to be as good as your right. Only then can you be a dominant soccer player.” It wasn’t easy at first, but I heeded my dad’s advice and forced myself to use my left foot as much as my right. After some time, and many repetitions, I began to notice a difference. My left foot had improved and while it could never be as good as my right, I had engrained a physical knowledge in my soccer skills for years to come. Up until the last time I played soccer, just two days before my accident, I was a right-footed player with a strong left foot.

Another example is when I decided to train for my first triathlon a few years ago. I was a strong enough cyclist and runner but I hadn’t swam since I was a kid and I was mortified at the thought of swimming a long distance. The first time I jumped in the pool and dusted off my freestyle stroke, I lasted maybe six minutes before I was panting and wheezing like a lifelong smoker who had just sprinted a mile. I was frustrated and disbelieving that I could be in good shape yet struggle so much with this new activity. Long story short, I kept at it and although the next few times were almost as painful as the first, I slowly but steadily got better. Soon I could swim ten minutes, then twelve, then twenty and before long, I was able to stay in the pool consistently swimming laps for over forty minutes. (Full disclosure: when it came time for my triathlon, I got in the water and embarrassingly swam so crooked that I ended up way off course, and needed the officials in the boat to catch me and send me back on track. I finished the swim nearly last, but at least I wasn’t out of breath. Thankfully I made up for my poor swimming during the bike ride and the run, and finished my first triathlon in the top ten of my age group.)

Now I’m still aggressively doing rehab for many hours a week and my exercise regimens have become more intensive and (hopefully) more beneficial. But I don’t realize those physical rewards as quickly as I’m used to and that becomes extraordinarily frustrating. So much of my therapy is based on repetition. The theory is that by repeating a motion or movement over and over, we can rewire and retrain the brain and spinal cord to relearn that movement again.

Also, in order to target muscles that I don’t have motor control of, I do exercises that essentially force these muscles to engage. For example, my abs are still too weak to do a situp and the neurological connection to them is still impaired (i.e. if someone punched me in the stomach, I couldn’t flex or tighten my abs). So I do assisted situps, using my arms to pull myself up and consequently forcing my abs to contract. Yes my arms are doing most of the work at first, but over time, those abs have gotten a bit stronger and I use less and less of my arms.

Over time. That’s the problem. I’m used to seeing results quickly. I’m used to hard work and effort trumping fatigue and being able to realistically overcome physical challenges and limitations. I’m used to stories of friends who had never run long distances being able to train themselves over a few months to run a marathon. But with a Spinal Cord Injury, it’s just not the same. I can work as hard as possible (I like to think that I do) and push myself to the absolute maximum every time I’m doing an exercise, but improvement and progress shows itself so, so slowly that it’s painful. I give every rep 120%. I close my eyes and I focus and visualize and push and pull and twist and lift and grimace until my muscles burn and my brain is tired, and I still try to keep going. But ask me if or how I’ve gotten stronger in the last week or two, and I usually won’t have a good response.

To end on a positive note, as difficult as this process is, the reality is that things have gotten better and stronger, it just takes so much time. I can’t imagine what this rehab would be like if I wasn’t already an athlete or if I didn’t have a good understanding of body awareness and how to challenge myself yet remain within my limits. At least with these things going for me, I trust that my body instinctively wants to become stronger and I fully believe that my body desperately wants to walk again, because that’s what is natural and what it’s done for so long. With that trust and knowledge, I will continue to work hard and notice improvements, slow as they may be…

Scared of stairs

One inch. That’s all it takes to stop me in my tracks, bring my wheelchair to an instant halt, and fling me forward and potentially face plant on the ground. In those first few weeks after my accident, while I was still in the hospital and learning how to maneuver myself in this rolling contraption that I hate so much, going over the smallest bump or gap would send shooting pain through my neck and spine. Just getting in and out of the elevator or the front door of the hospital to get some fresh air was an adventure as I could feel every jolt through my entire body and I would beg whoever was helping me to encounter these tiny bumps or rises as if I were off-roading over huge dirt mounds.

I’ve come a long way since then with my wheelchair as I no longer have much pain, but as I’ve gotten stronger and more able to go to new places, I’ve become more aware of where I walk…I mean….roll. Considering how much I already hate being shorter than everyone around me because I’m always sitting (see a previous post), it’s frustrating to  have to always keep my gaze at the ground and be on guard for any change in surface that will maintain my safety.

As a healthy and active person before my accident, I never thought twice about the entrances to homes, stores or restaurants. I lived on the top floor of an old San Francisco Victorian, with a bunch of stairs and no elevator. Many of my favorite restaurants and bars were situated at the top or bottom of a narrow flight of stairs. In a city where space is scarce and any kind of real estate costs a small fortune, there are few residences that are accommodating to someone in a wheelchair. As a result, to this day I can rarely visit my friends in their apartments or homes. “We’d love to have you over but we’re not sure if the stairs are doable” is something I hear frequently. To my friends’ credit, I have been able to bypass some seemingly sketchy entrances with some creative use of plywood ramps combined with some strong bodies pushing, pulling or even carrying me Cleopatra style.

I constantly fantasize about how monumental it will be for me to just make that first transition out of this wheelchair. Even if I have to use a walker or crutches, having the ability to go up a stair or two will open so many doors for me (literally and figuratively). I’m sick of always worrying about the smallest bump in the sidewalk or an elevated driveway or the unexpected stair and thinking how exactly my wheelchair and body would travel through the air if I were to encounter these foes without the utmost caution.

It is the biggest understatement when I say I can’t wait until I begin to get out of the wheelchair, which I refer to as my savior and worst enemy. I know I need it for now but I like to think that my hatred for it, combined with my love and driving desire to stand and walk, will lead to an imminent change in how I get around, and will lessen the feeling of being scared of stairs.