Stupid comments and positive outcomes

Recent conversation outside my local coffee shop. I’m sitting and chatting with my friend when a woman in her mid 40s, slightly disheveled but generally pretty normal looking, walks out of the café, stops in her tracks about ten feet away and addresses me:

 

Woman: Are you really in a wheelchair? Do you actually need it?

Me: Excuse me?

W: I’m just wondering if you’re actually paralyzed and if you need the chair or if you’re just using it, because…well…you know.

M: Um…do you really think I’d be in this damn wheelchair if I didn’t need to?

W: Well it’s just that you’re sitting with your legs sprawled open and you don’t look like you need to use that chair, so I’m wondering if you’re actually paralyzed.

M: Do you make it a habit of asking strangers such personal questions about their conditions?

W: Well, I know people who are actually paralyzed are usually very open about talking about these things and you just don’t look like you actually need a wheelchair. So, are you or not?

M: This conversation is over.

W: Well! I guess that answers that then, doesn’t it?!

M: You need to leave now lady.

 

She storms off, leaving me to wonder why she’s the one who’s agitated and exasperated.

***

In the time since my spinal cord injury, I have rarely, if ever, had any negative or insulting interactions with strangers in public. Initially, the fear of such an interaction terrified me. I was fearful of going anywhere in public, I was anxious about the looks I would get, the expressions of curiosity and bewilderment I would inevitably see on people’s revealing faces as they walked by me in the street, towering two feet above me.

But time and time again, I’ve been proven wrong. Ninety-eight percent of the time, I’m treated with civility, genuine greetings, and offers to hold the door open or move a chair out of the way to let me through. Of course, every single concession or accommodation that people make for me adds to my immense frustration at not yet being able to move freely on my feet, at eye level, where I want to be. Frustration aside, other than some confused, staring children who often don’t seem to know what to make of a guy in a wheelchair, I’ve become accustomed to cordiality and respect in public.

For that reason, I suppose I was due for a strange and unsettling interaction like this one.

I still hate everything about the wheelchair with the same passion and vitriol that I’ve had since day one. So naturally, I really dislike anyone noticing it or pointing something out about it. I continue to pray and hope for the day when it is a thing of the past and I won’t have to have this unwelcome companion with me at all times. That said, I’m not clueless, I realize that a society full of people who are upright and then a person who’s sitting down, rolling by is going to be noticed, but maybe because of the general progressiveness and open minded mentality of the people where I live, I don’t often have to worry about feeling too noticed for standing out, but of course this time it was different.

If the inappropriate and nosy questioning didn’t prove the nuttiness of this strange and sad woman, then my ensuing conversation with the cafe worker did. He came out, apologized for her behavior and said that she had ruffled some feathers with him as well when she purchased a pastry, ate some of it, complained about its price yet refused a refund, then continued to eat almost the entire pastry before returning to the counter and demanding a refund, which she was politely given. The point was proven: this person didn’t know how to interact with society and in the span of two minutes had angered a handful of people.

As she walked away, my friend (who has been a tremendous source of support and encouragement for me since my injury), instantly knew that I was on the verge of getting upset and deftly changed the course of my emotions. He told me that as crazy and weird as she had been, she was 100% right about one thing: I don’t look like I belong in a wheelchair. He said that he’s been noticing it for quite some time, that my overall health, confidence and increased strength make me look less and less like the vulnerable and weak person that I was not too long ago, and more and more like someone who’s about to jump out of the chair and start running down the street. He pointed out that I was sitting so unusually in the chair, scooted forward on the cushion with my feet on the ground and my legs comfortably spread apart, and the lady just didn’t know what to make of it.

I’m grateful for my friend for helping me take an awkward and potentially frustrating public interaction and treat it as a positive occurrence. In fact, within seconds of Mrs. Nuttipants’ departure, likely to annoy another self-respecting citizen or two, I had forgotten about the entire thing. I realize that had this conversation happened a year ago, I might have had a very different reaction but this time, I got the last laugh.

Standing in the Southwest

We all have sacred places, locations that have a strong link to our emotions and memories, that register some kind of greater meaning within us. One of my most sacred and favorite places in the world is the high desert plateaus and canyons of southern Utah and northern Arizona.

I first came to this region in 2005 when I was working as a trip leader for guests on biking and hiking tours and taking delight in seeing their faces when they experienced this truly special place, unlike any other in the world. It was always the same story, everyone signed up for the trip mostly because of the draw of the Grand Canyon. The other areas we would visit were usually more of an afterthought, an asterisk next to the statement of having seen one of the natural wonders of the world, or as us trip leaders would jokingly refer to it, “the biggest ditch in the world.”

The result was always the same. People usually hadn’t heard much about Bryce Canyon or Zion National Park (not to mention Red Canyon, the Kaibab plateau, Cedar Breaks and some of the other places we passed through), but once they saw all of it, they almost always admitted that the Grand Canyon was just a part of a truly spectacular area, and the other national parks would often cement their presence in their memories stronger than the big ditch.

I spent a good part of three summers in this area, visiting these parks over and over again yet I never got bored of the dramatic cliffs, canyons and geological formations. So it was only natural that when I found out that my fiancé had never been to any of these places, we decided to make a road trip out there. In order to make the long drive a little less painful, and to continue to explore our own state of California, we decided to throw in Death Valley National Park too, for good measure.

I wasn’t sure how I would react to visiting these places again after an eight year hiatus, and more importantly, now in a very different physical situation, where I wouldn’t be able to do the hikes I had done so many times or share my favorite peaks and viewpoints with Brita. What would it be like to visit my sacred place but without the physical ability to experience it as I remember? Was I setting myself up for disaster?

The answer, probably not surprisingly, was mixed. On the one hand, it was extremely difficult to be in beautiful and memorable locations yet constantly feel limited by where I couldn’t go, what I couldn’t see or relive again. On the other hand, I was able to share these places with Brita, to experience seeing them through her eyes and taking joy from that process. Not to mention that simply being in these places, with or without hiking and climbing up to the tops of the mountains, was soothing for my soul. At the end of the day, seeing the late afternoon sun shine on the massive, red, sandstone cliffs of Zion confirmed to me that I had made the right decision to come back.

For the last couple of months, I’ve been practicing standing up by myself, unassisted, in a walker and while it’s certainly not as effortless, long-lasting or smooth as I’d like it to be, it’s a measurable improvement from before. It was only natural then that throughout our road trip we would pull the walker out of the car, and I would rise to my feet and at least get a slightly higher view than from the wheelchair. While it wasn’t a replacement for the inability to go on a hike, and while I still long to climb back up to those peaks and descend into those canyons, it at least made it a tiny bit less painful and a whole lot more memorable. This sacred place remains sacred to me, and nothing that has happened to me physically can take that away from me.

Grand Canyon

Grand Canyon

Grand Canyon

Grand Canyon

 

 

 

 

 

 

 

 

Zion National Park

Zion National Park

My hips don’t lie

I’ve been back in Maui again, doing the incredible therapy that I’ve described in previous posts, and working on an entirely different set of objectives this time. I came here with a couple of ideas of where I wanted my efforts to go considering where I am physically right now. I’ll try to explain as clearly and concisely as possible, and it all begins with the hips.

Over the past few months, my exercises and efforts have involved more subtle aspects of my body development. Specifically, the stability of my hips and pelvis have been a central point of my ongoing therapy. In fact, I dramatically changed some of my exercises in recent months to eliminate detrimental compensatory patterns and to ensure that I was retraining my nervous system and muscles in the correct position, giving everything the best possible chance to succeed.

The reasons are simple: 1) Without hip stability, the rest of me is shaky and ineffective. Or put another way, how will the top floors of a four-story building be stable if the second story is swaying and shaky? [See my recent post about this to learn more] 2) Without proper hip positioning, I could be arching my back or compromising my spine which in turn could compress my spinal cord further (the last thing I need) and restrict the flow of nerve signals from my brain to my lower body. 3) It’s difficult to think about taking effective steps with my legs if the pelvis and hips are out of position or I’m trying to establish an entirely new pattern of movement that my brain, spinal cord and body aren’t accustomed to.

As a result, when I came to Maui on this trip, Alejandra and I discussed how best to move forward to achieve the next steps in my recovery. In her words, the human gait is incredibly complex. There are a variety of different muscles involved in different ways at different times in order to perform different objectives. While there are ways to overcome or compensate for some of these muscles being weak, there are others that just cannot be ignored or undeveloped, if one is to take effective steps and establish a sustainable walking pattern.

As a reminder to anyone who’s read my descriptions of Alejandra’s method and approach, muscles aren’t treated individually but as a system of muscle lines connected by the fascia, connective tissue that covers and connects every part of the body to the rest. But to make it easier to understand, there are two primary muscles that I’m working during this trip that are both essential to retraining myself to learn to walk.

The first is the medial gluteus on the side of the butt. I never realized how important this relatively small muscle was until now but it is crucial for the gait pattern. When you shift your weight to one leg in preparation to take a step, without a functioning medial glute, your opposite hip (the one taking the step) would drop down, throwing off your balance, straining your back and spine and making it harder to swing that leg through and take a step.

The second muscle is the psoas, which I went into a bit more in my last post so I’ll spare most of the details here. Needless to say that the psoas is the key component in actually flexing the hip off the ground and allowing you to swing it forward. Most of everything we’ve been doing in Maui has revolved around these two muscles, and how they interact with each other.

This video is a good example of both of these muscles working together. As I pull my leg forward, I’m working my psoas and as I extend back I’m using my medial glute.

In this second video, I’m standing on the Core Align, stabilizing my right leg through the medial glute (as well as quads and other muscles), which allows me to use the opposite medial glute to engage and kick my leg out to the side, all the while trying to keep my hips and pelvis aligned.

I’m not trying to downplay all of the other muscles involved in walking, but these two muscles, and the work I’ve been doing with them emphasize the importance of pelvic stability. As Shakira says, “my hips don’t lie.”

A repetition is an event

“Remember Ar-aaaash, make every repetition a separate event.”

These were the words, expressed in his slow, charming Alabama drawl, of one of my trainers a while back during a rather challenging exercise. He was a corky guy, eccentric yet affable, and I probably only worked with him a handful of times, but he had an eclectic knowledge of the body and liked to share his experience which was largely based on his years as a professional body builder.

He said that when it comes to many repetitive exercises, most people think only about completing the desired number of repetitions. Instead of that approach, he suggested that it’s not important whether you’re doing six, ten, or twenty repetitions but that you shift the focus from the completion of the entire set to an intense concentration on each repetition as its own end goal.

Clearly, the idea of “making each repetition count” wasn’t a new one at all, but the way he expressed it, his suggestion to think of each as an “event,” resonated with me.

The reason I’m thinking, and writing, about this now is that I’ve reached a point now in my rehabilitation where this advice is especially useful. In the last couple of months, much of what I’m working on has been extremely specific, focused and calculated exercises targeting small muscles and newly established and still weak neurological connections. These aren’t movements I can just complete unconsciously or with minimal attention. Now, I have to concentrate more than ever to turn on certain muscles, turn off other muscles that want to take over and dominate the movement and give every ounce of mental energy I have to try to strengthen a dormant or underutilized neurological connection.

After all this time, it’s still really hard for me to describe what it feels like to deal with a damaged neurological system.

It’s not like anything I ever experienced before my accident. It’s nothing like being on a long run or bike ride and battling complete exhaustion to fight through to the end. It’s not like being in a weight room and challenging a previous feat by adding a heavier weight, gritting your teeth and muscling through the movement. Nor is it like getting into a challenging yoga pose and trying to contort your body into a pretzel-shaped position.

I have to concentrate so much more on each specific aspect of my movement because I’m not only engaging the muscles that I do have control of, but I’m trying to reestablish those damaged connections. That’s why treating each repetition as a separate event is such great advice. It slows the entire process down, demands tremendous brainpower and forces me to prepare, complete and analyze each repetition with focus and determination. I also like that it can be applied to any repetitive movement or practice, not just physical exercise and it allows me not to take any practice for granted. Slowing down and treating each repetition as its own event can only benefit my continued recovery.

Levels upon levels and the big building of recovery

I’ve been thinking a lot recently about buildings. I’m no real estate mogul, and certainly no engineer, but I can’t stop thinking about a building and how it’s constructed from bottom up.

I think of a building in the midst of construction and the stages of development it goes through. More specifically, I think of the levels of a building. How they get built, one on top of the other, each level relying on those below it and the tallest level, stacked up on the rest, claiming the highest height for itself, until it’s replaced by the next level and it becomes a supporting member of the entire structure, just like its brethren below.

Whenever a new level is being built on a structure, be it a 2 story house or a multistory skyscraper, there is so much that goes into making sure everything below is secure before the next level can be completed. Under construction, a new level always looks so awkward, incomplete, and bare. It’s only once it’s finished that suddenly, everything looks right, it all makes sense again and pretty quickly, it’s hard to imagine that building without that added level.

I swear I’m going somewhere with this…

For the last few months, I’ve felt like a massive level has been under construction on my building of recovery. After a spring and summer where I had noticeable, small and large achievements on a seemingly consisten basis, it’s been a….how would I say it….interesting…time recently.

There haven’t been any major breakthroughs I can hang my hat on. I don’t have any big accomplishments to match some of the developments I had in the past, developments I could feed off of and rely upon to propel myself forward.

So I keep thinking of these levels being constructed in buildings and how crucial it is for everything below to be stable, strong and 100% reliable before the next level can be built. I figure that all of the hard work I’m doing now is laying the foundation (pun fully intended) for the next breakthrough. I tell myself that my upcoming accomplishment must be a good one, since it’s needing all of this extra time and attention in the construction phase before it can be completed and realized. I guess in my building metaphor, not all levels are created equal.

Some are constructed and completed soon after the previous ones, while others are those needy, complicated, annoying projects that need all of those extra materials and time before they’re ready to be finished.

I keep telling myself that I can’t stop now, that I’ve put too much time and effort over these last few months building and strengthening everything for the next major breakthrough, and that my hard work will be realized. I’m looking forward to that imminent moment, when the awkward looking phase is over, when the next level has been built and when I can look at the new construction and wonder how it could possibly have existed any other way. Yeah, I’m ready for that moment to come…

Drip drip drip

On a recent warm and sunny Indian Summer day, I was sitting outside when I noticed a dripping on my shoulder. There was no way it was coming from the cloudless sky above so it quickly became apparent that the sweat was dripping off my head, naturally moisturizing my neck and shoulder.

Early on after my injury, I wrote a post about the very first beads of sweat I experienced and how significant that had been so with this recent development, I figure it’s time to reexamine this vastly under appreciated bodily system.

One of the many, and I mean MANY, secondary complications of a Spinal Cord Injury (SCI) is the deficiency in body temperature regulation. Simply put, the nerves in the spinal cord that control perspiration to various parts of the body are damaged thus leading to a decrease or inability to perspire. Similarly, when a person with a SCI gets too cold, it may be very time consuming and challenging for them to warm back up. The comfortable range of temperature for someone with a SCI is a lot more limited than it used to be. As you could imagine, this can lead to many challenging situations and unanticipated planning.

In the 18 months since I wrote that last post, my ability to handle more extreme weather has dramatically improved. I remember my feet used to turn to ice blocks at night, even in warm settings, because of the lack of circulation. Sitting in the sun for more than a few minutes was just asking for hours of suffering, as my bone dry skin wouldn’t naturally cool down the rest of my body.

I can’t say that I’m anywhere near where I’d like to be but the sweating and the temperature regulation as a whole has improved dramatically. Strangely enough (or not so strange if you know a bit about the left-right imbalance that comes with SCI, stroke, and other neurological injuries), I sweat much more out of the right side of my body than my left. I no longer have to rely on a physically intense workout to get a decent sweat. If the weather is warm enough, the moisture will come out.

I have to credit swimming as one of the contributing factors to this. Getting in a pool a couple times a week and literally forcing my body to deal with a dramatic change in external temperature, only to transition again after getting out and showering, has made me more adept at regulating my body temperature. I haven’t yet been anywhere too cold so I don’t know if I feel as confident with that, but I’m sure I’ll discover that soon.

So the next time you sweat, don’t take it for granted. That extra layer of perspiration and body odor is what’s keeping your body functioning at its peak.