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…

Reflecting on my CORE Center experience

“Sit tall, stand tall, walk tall.” Those were the words of Taylor Isaacs, the kinesiology professor/exercise therapist/all around SCI and body movement master who has helped a number of people achieve significant recovery from devastating injuries. I was honored to spend a few days last week at CORE Center working and learning from someone who takes a different approach to recovery than the traditional methods I’ve become accustomed to. It’s not easy to sum up Taylor’s approach but if I had to start with one word, it would be holistic.

Upon arriving to Southern California and creating an instantaneous bond with Taylor, Aaron Baker, Laquita and the CORE Center family (see my last post for a background of these amazing people), Taylor asked me questions. LOTS of questions. He wanted to know every detail about my accident, every detail of my regimen since then, my diet, my sleep patterns, my energy levels, my specific progress and how I had measured it, my psychological state, and as I conjured up the answers to the many questions, he took meticulous notes and responded in his easing South African accent, “brilliant, excellent, brilliant.”

I didn’t know what to expect from Taylor but within seconds of meeting him, I knew I could trust him, and that I would. After all, this guy was an expert among experts about how the body moves and had spent years applying his previous knowledge and varied experience with everyone from high level athletes to everyday people to those of us suffering from injuries like SCI. What I saw in Taylor and what made me so excited to work with him was an attitude of possibility and capabilityThese are words not commonly spoken to someone who has suffered a SCI; after all, we’re always being reminded of our disability and told to adapt to the circumstances, instead of trying to tackle the circumstances head on and bring about change.

The time I spent with Taylor was incredibly fruitful. After a couple days of meticulously testing different muscles and assessing my current condition, I was a bit surprised that the exercise regimen he sent me home with didn’t involve standing or leg exercises or weights or really anything complicated. It was a 20 minute daily regimen that he called Postural Reprogramming, meant to correct my posture, strengthen my abdominal and back muscles and get me sitting taller, which would lead to standing and walking taller.

Of course there are no guarantees from any therapist or practitioner and Taylor did not prognosticate anything. But what I learned from his approach was to look at the body as a whole, and understand that before I could take a step or stand up on my own, I would need to get my body into the right position for it to do what it wants to do: to move as efficiently as possible or put another way, to use the least amount of effort and energy to perform a movement. According to Taylor, “by doing this, we’re going to take those blocked neural pathways, we’re going to flood them with neural energy and turn them into neural superhighways!”

I’m including a couple of quick videos that are examples of the simple, yet challenging movements that are a part of my Postural Reprogramming regimen:

 

As I wrote about in my last post, the other main reason I was excited for this trip was to meet Aaron Baker, a true hero in my eyes and someone who consistently inspires me. I felt a kinship with Aaron the moment I met him. Of course, he has been through this injury and achieved outstanding recovery but it went beyond that. Through many hours of conversation, we were able to share our perspectives on our injuries, our lives and the world as a whole. Aaron’s mindfulness, focus and intention emanated from him and inspired me further. It was clear to me that despite his astounding recovery, this injury was still a huge part of him, and it always would be, but he had found peace, something I still have trouble doing. It was an honor to share this time with these amazing people and I’m already looking forward to my next visit to CORE Center. Until then, I’ll be reprogramming my posture…

CORE Family

One in a million and a trip to SoCal

One in a million. Those were the odds that were given to Aaron Baker for his chances to ever feed himself again. Aaron suffered a Spinal Cord Injury similar to mine 14 years ago and these were the words that his doctor told his mother. Nothing about walking, nothing about standing up on his own, or even pushing himself in a wheelchair, but just simply his chances for feeding himself.

In my last post I shared the new page on my blog highlighting the stories that are inspirational to me and front and center among those is Aaron’s story. Through years of hard work and unwavering determination, not to mention incredible support from his mother and community, Aaron slowly regained control of his body and was able to fight his way back to his feet, and to his bike! A formerly sponsored motocross racer, he traded his motorized dirt bike for a road bike and ended up crossing the country twice, riding over 6,000 miles to share his story and raise awareness about SCI. Now he has opened a rehab gym north of Los Angeles with the intention to help as many other people with SCI and other injuries as possible.

I bring this up not only because of the continued inspiration I get from Aaron’s story but also because after speaking to him on the phone and learning more about the methods that he used for his recovery and his amazing, one-of-a-kind therapist Taylor (a kinesiology mastermind who now runs the therapy program at Aaron’s gym), I’ve decided to take a short break from my typical schedule and come to Southern California for a few days to mix things up again. I’ve mentioned how helpful it is for me to change my patterns, go somewhere new, meet new people and have different people work with me so that’s what has brought me here.

I could not be more grateful for this opportunity to come and meet people who in my eyes are like superheroes. I see people like Aaron, Laquita (his mother), and Taylor as beacons of shining light amidst a pervasive darkness in the SCI recovery world. For every one like them there are too many other people who say that to not get used to this “disabled” reality is to do yourself an injustice and to put “unrealistic” dreams of recovery to the side and move on with life. I’m honored to have this opportunity to meet these incredible individuals and I’m looking forward to sharing my experience with them in my next post.

Sharing what inspires me

I’ve had the great fortune of being told that my blog is inspiring to people. I started this blog simply as a means of communicating the challenges and triumphs of my recovery from this devastating injury in an efficient and interesting way. So whenever someone tells me that my words are inspiring, I’m honored, flattered and overwhelmed with gratitude. In that same spirit, I want to take a moment and share some of the resources, stories, and people out there who have inspired me throughout my journey of recovery.

One of the initial (and perpetual) challenges of Spinal Cord Injury is the lack of information and resources. In the hospital, they gave me a book that probably every person with a SCI receives upon leaving their inpatient rehab facility. The front cover has a smiling guy sitting in his wheelchair with an almost sadistically grinning child in his lap and alongside him is an attractive woman and a creepily friendly-looking German Shepherd, with the title: “Yes, you can! A guide to self-care for persons with Spinal Cord Injury.”

Instead of sharing the inspirational stories of others with SCI who have recovered, of those who have challenged their condition and come out victorious, they want you to accept your fate as a “disabled” person and start getting used to your “new” life. Complete with a smiling child and a menacing dog.

That’s exactly why I decided to create a new page on my blog entitled, “Inspiration & SCI Resources.” After over a year of living with this injury and countless hours of research, reading and internet searches, I have collected quite a bit of information on SCI and the people it has affected.

Now I want to share those stories that have most inspired me, those people who I’ve learned about who motivate me to keep fighting and to keep working hard towards my goal. We live in a society that emphasizes individuality and independence, but the reality is that none of us can achieve our objectives without the help or presence of others. I feel like it’s essential for me to recognize the inspirational stories that have most helped me through my recovery thus far, and hopefully serve as a resource for anyone looking for either an inspirational story or more information on SCI.

On a final and slightly unrelated note, my friends recently organized a fundraising event in which I gave a speech about the importance of words and why specific words matter so much to my recovery, and thanks to a generous friend who photographed and recorded the whole event, we have a video of the talk which I’d like to share here. It’s more than a couple minutes long so I don’t expect everyone to watch, but if you do and want to share your thoughts, you know how to find me.

http://steinbergimagery.info/arash-bayatmakou-words-matter/

Traveling with SCI

This past week I did something that I hadn’t yet done since my accident. I got on a plane and traveled to a destination, wheelchair and all. I had legitimate fears and questions with the process of air travel: How long would it take to get through security? How would I get on the plane? Where would the wheelchair go? How sore and tired would I feel after hours of sitting in one place?

Having traveled for work and pleasure for a number of years and having logged hundreds of thousands of miles flying, I was well aware of the physical challenges that come with air travel, albeit for a healthy person. I remembered how good it felt to get up in the middle of a long flight and stretch my legs (not to mention do stretching and pseudo-yoga poses in the aisle amidst the strange looks and glances of the other passengers). I knew that sitting for that long didn’t bother me so much because I would often be out for a run within only a few hours of landing. How would all of this work now?

My trip was a modest but still significant 3 1/2 hour flight from San Francisco to Minneapolis to visit my girlfriend’s family, something she insisted had to happen in the warm summer months so as to avoid the harsh Minnesota climate of the other nine months of the year. It was either now or next summer, and I didn’t want to wait that long. So off we went…

In a nutshell, most things weren’t as bad as I expected. The check in, security, and pretty much everything at the airport were smooth. Boarding the plane was hilarious as I had to transfer from my wheelchair to a tiny wheelchair that could easily fit down the narrow aisle. Never mind that even my skinny ass barely fit on the seat as they strapped my arms and legs like I was in a straight jacket and tumbled me down the aisle of the empty plane before everyone else boarded.

The one thing that was as painful and frustrating as I expected was sitting in that airplane seat for the whole time without being able to move my legs around or stand up. Thankfully I was able to sit on my cushion from my wheelchair which eased the pain a bit (and raised me up in my seat so I looked like I was about seven feet tall) but at the end of the day, sitting still for so long and feeling my blood circulation struggle and my feet and ankles swell wasn’t ideal.

All in all, I’m happy I overcame this minor obstacle of air travel, especially since I had such a great reason to make this trip. I was grateful to have my girlfriend there to help me through this process and we had a great weekend together. I can’t say I’m ready for a longer flight anytime soon, but I’m looking forward to the next travel adventure.

Stone Arch Bridge - Minneapolis

A word on nutrition

I recently found an old memento from my early days in the hospital last year. Less than a week after massive spinal surgery, I was completely immobile, laying in bed and the nurse brought me my lunch tray. On it was this:

"Health" shake

I was too weak to take a deep enough breath to laugh, yet I couldn’t help but smile, cringe and awkwardly chuckle to myself. “This? Am I really meant to drink THIS?” I know picking on hospital food is an easy target as no one expects it to be tasty, and to be totally fair, most of the actual food was not as bad as I expected. There were plenty of somewhat healthy options and they gave me a choice of what to eat instead of just arbitrarily shoving microwave hamburgers and canned peaches in my face. But this was surprising to me, especially given the circumstances.

….

Health Shake 2

Once I read the ingredient list, I couldn’t help but wonder….Aren’t I in a hospital, where I’m meant to get better? Shouldn’t I be avoiding a bunch of chemicals and synthetic additives? Isn’t it counterintuitive to ingest a bunch of processed artificialness when I’m in such a volatile state and my body only needs what’s essential and healthy? And that’s when I had an epiphanic moment and the reason why I asked my mom not to throw this carton away. I wanted to hang onto it because I knew this moment now would come and I could look back at the sardonic tragedy of this glimpse into our healthcare system.

It also seemed strangely comedic that I was being given no less than five different laxatives and medicines to help move things through my body (due to the fact that I was laying in bed for ten days) yet the food I was being served contained probably a quarter of the amount of daily fiber that a normal person would need. Why not ease up on the laxatives and feed me some extra broccoli or kale? Wouldn’t a fruit smoothie replace the need for all that medicine, not to mention that it would taste a lot better than this “fortified” strangeness?

I can laugh about this now because these days, I have the fortune of being able to eat a healthy diet of my choosing, but the reality of this paradox in our healthcare system still saddens me. We make all these gains, research and develop incredible technologies that improve the health of many, yet amidst this vast knowledge, hospitals are still serving synthetic chocolate milkshakes with “health” on the front, that look like they’re straight out of the 60′s?!

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.

Wonders of the internet

The internet really blows me away sometimes. I know I’m stating the obvious and sounding pretty cliche so let me say this instead: I can’t imagine what this injury would be like 10, 20 or 30 years ago, specifically in regards to the difference in social connectivity then vs. now.

Last week a friend posted my Al Jazeera video at Ekso Bionics on Upworthy.com, a site that I didn’t know much about previously. Within minutes, I had emails, blog comments, Facebook messages, and all kinds of communication from people all over the world who had seen the story and felt inspired enough to read my blog and to contact me personally. I was blown away. I have had a couple of big social media days since I started writing this blog but this broke all the records. The communication kept flooding in over the weekend and I’m still barely catching up to all of it.

As a result of just this recent wave of traffic, I’ve made new contacts, connected with people who have the same injury as me to swap stories, received extraordinarily generous offers of help and support from complete strangers, and read sincere, kind messages of love, positivity and encouragement from people I don’t know. I make it a frequent point on this blog to share my gratitude and always recognize those things I do have despite all of the adversity that life has thrown me with this injury, so I have to take a moment to express my thanks to everyone who has read my blog whether you’ve been following me from the beginning or just recently joining me on my path to recovery.

We live in a time where I’m fortunate enough to click a button and upload a video that instantly goes global and motivates people to send me their words of support. There are websites out there specifically to help people raise money or organize events to give themselves a better shot at improving their condition. By connecting with some of the readers and visitors of my blog, I’ve learned about cutting edge treatments for spinal cord injury (SCI), brand new devices and equipment, and read about prolific research that is paving the way for a better understanding of how the spinal cord heals. I can’t imagine how different it would be if I didn’t have access to such forms of communication and (I have to admit) I wonder if or how much my recovery would have suffered if I didn’t live in an age where so much information is so incredibly accessible.

Last year, when I was still in the hospital, I had my first conversation with Grant Korgan (a fellow survivor of SCI and an incredible and inspiring person) and the first thing he said to me as I wheezed and forced out a barely audible sentence was, “bro, there is SO much love out there, just waiting for you.” I’m feeling grateful to be able to realize this every day, and in novel and interesting ways. Thank you all for giving me so much continued inspiration and for keeping me on my path to recovery.