Finally finding exhaustion

I want to be exhausted. I want to push myself beyond what I thought was imaginable and then push more. I want that feeling of satisfaction that comes with knowing that I have absolutely nothing left in the tank. And, until recently, I hadn’t found this feeling for years.

I’ve mentioned fatigue quite a bit throughout my posts and it’s always something I struggle to describe clearly. The conversations are often like this:

Them: “How long do you do that exercise before you get tired?”

Me: “It’s hard to say. There are so many factors that go into how I’m doing on a particular day that it’s not always easy to know why my body reacts in certain ways. Some days, I’ll be really tight and it will be hard to move because of that. Other days I just might not connect to the muscles that I want.”

Them: “So you’re just tired from the beginning? Or from something you did the day before?”

Me: “Um… kinda… but not really. It’s not tired, it’s just that I may not have the ability to get the neurological connection to make the movement.”

Them: “You mean like you’re sore?  Your muscles just don’t respond?”

Me: “Yeah sorta like the responding. It’s not soreness. I haven’t felt sore at all in years. At least not in my legs. I’m always sore in my shoulders, neck and arms, like, all the time. But with my legs it’s just… I don’t know… it’s hard to describe.”

And that’s usually where I give up.

In my last post, I talked about neurological fatigue, that unique sensation that best describes that sensation of not being able to connect to a movement or to specific muscles in my lower body. Recently, on my most recent trip to visit Alejandra and applying the lessons of her one-0f-a-kind Neurokinetic Pilates method, I finally found exhaustion. And not the esoteric neurological kind that I have a hard time describing. Just good ol’ fashioned “I want to collapse and lay down and not move” exhaustion. And it felt amazing.

I’ve written extensively about how Alejandra is always able to find and make new connections within my body, and this time was no exception. On the first day I see her, she always asks me what my objective is for the time I’m with her. This time, I repeated the same exact thing I told her last year: that I want to get the connection for hip flexion, that is, to pick up one foot and take a step already…

Unlike last year when she told me that she didn’t think I was ready for that yet and I needed to work on a bunch of other movements in order to get myself strong enough to even be able to attempt hip flexion, this trip was a different story. Alejandra agreed that it was the right time that I try to start tackling this immense challenge for me: going against gravity to lift a foot off the ground step it in front of the other. Sounds simple, but not for me.

Alejandra did what she always does, she took the exercises I was doing (which I shared with videos in my last post), and pushed me much further beyond my comfort zone. The result was that for the first time in years, I was actually 100% physically and mentally tired and exhausted after each day of working with her. She was able to find the limits of both my physical fatigue as well as my neurological fatigue, crush them both and push me much further into an entirely new realm of exhaustion.

My videos are below. The significant thing to understand is that until I saw her, I was doing similar exercises always facing forwards on the CoreAlign machine, with the comfort and security of the ladder in front of me and with both arms bracing me. With her, we turned everything sideways, so that there was literally nothing in front of my knees and I could only hold on with one arm. To say that it pushed my boundaries is a massive understatement and now I have the satisfaction of knowing that in just a couple of weeks, she was able to dramatically push my limits and get me to work in that sweet spot of struggle, abject fear that I may collapse, and the ensuing accomplishment.

And I can finally remember, and relive, the feeling of exhaustion.

 

 

Staying upright and reviving the Running Man

With a new year comes new accomplishments and new objectives in my journey of recovery. The last few months of 2016 brought with them the ability for me to work harder and longer in a standing position, relying greatly on the Core Align, the piece of Pilates equipment with sliding carts under my feet and a wooden ladder in front of me that has become the most fundamental tool for my rehab.

Only a few months ago, standing and exercising at the Core Align would end with exhaustion after no more than thirty minutes. More than physical or muscle fatigue (which people always ask me about) the thing that would get me the most would be what I refer to as neurological fatigue.

It’s difficult to describe exactly what this feels like but suffice it to say that getting my body into positions that challenge my flexibility, balance, and endurance and then trying to connect to a new movement and push myself as much as possible results in my entire neurological system feeling tired. I’ve been flooding my lower body with so many signals from my brain and telling it to move using the limited pathways of my damaged spinal cord that after a while, the signals just don’t get through as efficiently or successfully as before. It’s as if you have two lanes of fast moving traffic (the signal from my brain) with cars, buses and trucks flying down the roadway and after some time, the two lanes turn into one and the one lane turns into a narrow street which only a car can pass. By the end of it, the traffic can still get through and provide the message to the other side, but it’s much slower.

Much of the work I’m doing now is finding new exercises and movements that tread the line of being so challenging that they seem nearly impossible, and then doing so many repetitions and working through them so hard that I reach neurological fatigue, and then pushing just a bit more. Through this process, the line of exhaustion keeps getting pushed further, my strength improves and I’m able to maintain the connections I’ve made in a standing position more effectively and for a longer duration.

The videos below – aside from showing my first foray into wearing spandex, a necessary item during these chilly winter mornings – indicate just how far I’ve come in the second half of 2016. In each video, I’m working on one specific aspect of the walking and gait cycle that will each contribute to being able to take steps. The shaking in my legs that sometimes occurs (which I’ve written about previously) is a clear indication of reaching that point of neurological fatigue. So without any further ado, let’s get into it:

Video 1

Working on holding my front knee bent and strong while pulling forward with the back leg also bent. It wasn’t that long ago that I was unable to hold my weight in one leg bent for any amount of time; now it’s longer and stronger and more effortless.

 

Video 2

“The Running Man” Anyone who grew up in the early 90s remembers MC Hammer, his baggy pants and the ubiquitous and memorable dance move that he made famous. Now I’m doing my own version of the Running Man by alternating lunges back and forth on both legs, trying to become faster at sending those neurological signals from my brain and telling my body to switch left and right while maintaining good alignment and body position.

 

 

Video 3

Holding a lunge, then rotating open and finding space and flexibility in my ribcage and thoracic spine. Again, only a few weeks before, I couldn’t conceive of staying in a lunge and doing any other kind of movement. It just would have been too much for my neurological system to handle; now it’s become more manageable.

 

Hopefully this gives a little taste of where I’m at and where I’m moving towards in this new year. More updates to come very soon.

A gander through Bali & Lombok

One thing became very clear within minutes of driving out from the swanky, sparkling international airport in Bali: this was NOT going to be an accessible place for a wheelchair.

While I’ve learned to transfer into and out of most cars relatively comfortably – Hummers and massive pickup trucks aside – the minivans that taxis in Bali preferred (that looked like a Dodge Caravan that had been squished on both ends, making it taller and more compact) were a challenge to say the least. The sidewalks were narrow, potholed, bumpy, and their frequent stone steps made them completely unusable. Almost every single store or restaurant had at least a couple of tall, stone steps to enter. And all four of our lodging options – despite my meticulous review of online photos and numerous phone calls and emails confirming the lack of steps, obstacles or other impediments – indeed presented us with unexpected challenges.

But amidst all of these day-to-day struggles and unforeseen hiccups, we were blessed with incredibly helpful people who were always eager to help. I want to steer clear of the exhausted and overused trope I’ve read in so much travel writing and speak about the “friendliness of the locals” but I know no other way to admit just how helpful the locals were at all times. They were fantastic, never once approaching me in an uncooperative way or with confusion about how I enter or exit a particular building or car or storefront. We were consistently greeted with collaborative attitudes and helpful smiles. Yes we were tourists paying for their services, but I’ve traveled enough to know that simply paying someone for their work doesn’t necessarily result in sincere warmth and cooperation.

Even at the airport, as we were waiting on the tarmac to board our little plane that would make the 30-minute hop over to Lombok, Bali’s much quieter and less developed neighboring island, once the airport staff finally realized what we had repeatedly told them (that I would need assistance getting up the steep steps into the plane), they only scratched their heads in confusion for a couple of seconds before they sprang into action and one unfortunate baggage handler had the pleasure of piggybacking me up the stairs, inside the plane, and into the seat.

In fact, the only sideways stares and resentful glances I got were from the other tourists. The locals always treated me with respect but it was the European and North American travelers who made me feel the most uncomfortable. At one point, I practically had to hold Brita back from unleashing a verbal tirade upon an elderly French couple who seemed to go out of their way to be unhelpful and rude every time I was near them.

It was a wonderfully relaxing trip and allowed Brita and I to have some much needed downtime. I had never taken such a long break from my rehab and exercise but it became very clear that my body desperately needed this time to unwind, rest and relax. Every time I got antsy about my nonexistent exercise regimen, I reminded myself that after four years of going going going and working as hard as I had been, I was due to give myself a break.

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On the snorkeling boat to Menjangan Island

One of the highlights of the trip was doing an all-day snorkeling venture in what many people considered to be one of the best snorkeling places in Indonesia, if not all of Southeast Asia.

It took some friendly boat workers to help me on and off the rickety motor boat, but once I strapped on the snorkel and got in the water, I was in my element, loving every weightless moment and appreciating the opportunity to do a unique and memorable activity in a comfortable physical state, outside of the wheelchair and free of the confines of gravity.

While there were certainly some frustrations – not being able to explore as much as I wanted, physical pain and discomfort, and a steady flow of logistical challenges – Brita kept asking me if it was all worth it. If the long travel and the unfamiliar terrain and the different cultural attitudes and the physical struggles were all worth the effort?

After years of craving to go abroad and finally having the opportunity to feed my desire for international travel and novel explorations, my unequivocal and repeated response was YES.

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A slightly less lonely passport

Brazil. Nepal. Slovakia. India. Finland. The Hashemite Kingdom of Jordan (yes that’s the official name). Tunisia. Laos. Egypt. New Zealand. Norway. Peru.

Between 2003 and 2012, my passport filled with stamps from the many places I had the extraordinary privilege of traveling to. As a trip leader for a company with biking, hiking and multi-sport vacations all over the world, I had the incredible opportunity to live and work in a number of different countries, getting to know the cultures more intimately and having the chance to explore some of the less traveled paths. As a result, my time off from work while I was in these places allowed me to continue to travel and explore on my own, often times with little to no expectation or planning. It was as simple as finding a cheap flight and a fun destination and off I went.

A last minute schedule change to give me a week off from a long stretch of work in Tuscany allowed me to hop on a cheap flight to Romania and check out the land of Dracula. Killing time on a layover in Lima resulted in a chance stroll past a ticket counter advertising bargain flights to Buenos Aires so I had no choice but to pull out the credit card and book a flight for later in the summer. When my mom told me that she was going on a work trip to Sweden and I was on biking tours in Spain, I decided that it made perfect sense to squeeze in a trip up to northern Europe before continuing my schedule on the Iberian peninsula.

And so it went again and again and I was able to spend my twenties seeing much of the world and developing an insatiable desire to continue exploring and becoming exposed to different cultures, peoples, and ways of life. In 2008 I had to get extra pages added into my passport to accommodate the flow of visas and stamps I was accumulating and that’s when I came up with a simple life goal for myself: to have the number of countries I’ve visited always be a higher number than my age.

The last international trip before my injury was in January 2012 when I went to Colombia with one of my closest friends. Because it was the 37th country I had visited at that point, I knew I had a few years buffer before my age would catch up but for a long time, my severely weakened physical state as well as the daunting logistical challenges involved in traveling abroad prevented me from fulfilling my ever-present urge to get out into the world. This was the case until recently when Brita and I decided that enough was enough.

After four and a half years of not leaving the good ol’ U S of A, and countless experiences of hiding my envy and jealousy of my friends and family as they regaled me with their stories of travel, the two of us decided to fly almost as far away as possible and spend two weeks in Indonesia.

After allowing my passport to expire three years ago – a virtually unthinkable prospect back in my heyday of globetrotting – I had to trade in my trusty, wrinkled, beat up version with its haphazard stamps and sewn in extra pages for a blank, lonely new passport. When it arrived, I flipped through its empty pages, wondering if and when I could fill it with more country names (recognizing these as gross oversimplified symbols of novel trips) before readying it to get christened on this first adventure.

Gone were the days of stuffing some items into a backpack and carelessly jumping onto a plane with little planning or preparation, knowing that everything would inevitably work out. Nowadays anywhere I go, even if it’s for one night, requires that I meticulously go through a long list of essential items for my health and comfort. Add on to that the unpredictability of where we were going and how easy or difficult every single thing would be, and my packing list was just a little bit more complicated than it used to be, to say the least.

But pack we did, and I grabbed my lonely, blank, rigid passport and smiled at the thought of this new chapter as we headed out…

Next post: A summary and reflection of our trip 

Two wild horses

Recently, more and more time in each session of my rehab has been dedicated to doing a variety of exercises in a standing position. This is following on the work I’ve done using the Neuro Kinetic Pilates method that I’ve learned in Maui and almost always using the Core Align, an amazing piece of Pilates equipment that allows me to push my limits in a standing position while remaining safe and secure and minimizing the risk of falling. (See this previous link to remember what I’m referring to)

By finding new ways to establish movement through my lower body, I’ve encountered a new challenge. I call it the shakes. Put simply, my legs start to shake… and shake… and shake… and just when I think I may be done, my legs shake more. The video below is a perfect example of what I’m talking about and it occurs after some 15-20 minutes of doing squats or lunges or any of the other exercises I’ve been doing recently to target my quads and improve my standing stability.

It took me a while to really understand what this was. At first, when I would tell some people experienced with SCI, they would shrug it off and say that it’s simply clonus and just another typical example of the cervical level injury that I suffered. Clonus is defined as “involuntary and rhythmic muscle contractions” and it is commonly seen in many people with spinal cord injuries. But, like the doctor testing your reflex by tapping your knee with a hammer, clonus is also a reflexive result and can be tested for and replicated by a practitioner. After doing these tests with me, the PT scratched her head in confusion and confirmed that I definitely didn’t have signs of clonus.

So what’s with the shakes?

As with nearly everything else in my path of recovery from SCI, I’ve had to figure it out myself.

To put it as simply as possible, until recently, the controlled movements that I had in my legs were all based on a single movement pattern. Since I was first able to start bridging and standing up independently with a walker, I’ve contracted my leg muscles using a specific pattern of engaging them and it’s gotten me really far.

But since I started doing some new standing exercises a few months ago that target completely different muscles, I’ve established a new pattern of movement and carved out a new neurological pathway. Muscles that haven’t really contracted or have only had minor contractions and been overpowered by other dominant muscles are finally being forced to contract. And since my spinal cord can’t manage the communication between my brain and my legs as effectively as possible, those muscles start freaking out and shaking like crazy. It often feels like I’m trying to stand on two wild horses hell-bent on roaming the countryside.

It takes an extraordinary amount of mental effort for me to keep working these new patterns and strengthening these new neurological connections but it’s a great sign that I’m able to gain new movement and work underutilized muscles that are being forced to step up to the plate and show their stuff.

While I get annoyed with the shaking since it forces me to slow down and struggle through the movements, I still take it as a positive thing. If establishing new neurological connections, gaining strength in previously underperforming muscles and finding new ways of movement mean that I have to deal with two wild horses shaking like crazy, then so be it.

Dimming the muscle switch

With the arrival of 2016, and with it the continued realization that time passes faster and faster every year, it makes me reflect back on the goals and objectives that I set for my recovery last year, to the unfinished goals that I will carry over into the new year and to new objectives I will set for my continued path of spinal cord injury recovery.

I can confidently say that my body has changed significantly in the past year. In the last couple of weeks especially, I’ve been doing a lot more work in standing positions and my trainer has challenged me and in turn pushed the limits of the Pilates equipment (which have probably never been used for some of the exercises we do…) by coming up with novel ways of strengthening my current abilities and building off of those to challenge my body to find the next steps of function.

As a result, my endurance to stay standing – while much less than I would like – is noticeably better than it was even a month or so ago. I’ll share a video below to show one of the recent exercises I’ve been working on and one that went from needing a lot of assistance a couple of months ago, to now being able to control everything relatively smoothly on my own.

So where do I go from here?

One of my main goals for 2016 will be what I’m calling “dimming the switch.” I use the analogy of a light switch because it applies quite well to what I’m referring to.

Right now, the engagement that I get to the muscles of my lower body generally works like a light switch, meaning when I turn a certain set of muscles on or perform a particular movement, those muscles are on 100%, working hard, contracting strongly. When I decide to change positions or turn off, everything just kinda releases all at once. So I’m stuck with a light switch; on or off; 0 or 100%, with not much control of the in between.

For example, in the video above, if I were to try to bend my knees or do that same exercise in a light squat (which I must admit would be rather challenging for anyone), I would crumple to the ground, unable to dim that switch and maintain control of my stance. I either have to stay with legs locked straight or I get nothing at all.

You see where I’m going with this right?

The dimmer switch is essential to any kind of functional movement that I’m working to regain. I have to be able to control some muscles at 50 or 70% and not just 100%. Not only that, but I also have to relearn and retrain myself on how to differentiate one side of the body from the other. In other words, if I’m going to be able to successfully take steps, my left leg must be able to bear weight and be at 80 or 90 or 100% contraction while the right leg is lifted in the air and taking a step. It utterly blows my mind to think about how a healthy body and spinal cord can so naturally manage a movement pattern like walking that may seem simple, but is actually startlingly complex as it’s a consistent dimming up and down of different muscles at all times.

Like so much of what I have understood since my injury, our bodies and our movements are incredible and should not be taken for granted. It’s easy to underestimate just how much is involved with a seemingly simple set of movements, until you’re faced with an entirely different body that doesn’t react the same way.

So I will dedicate 2016 to finding that dimmer switch and being able to control my lower body movements more fluidly and effortlessly.

Grateful for more than the gobble gobble

I started writing this blog just over three years ago today, on the eve of this all-encompassing American holiday, and now I look back to the third blog post I wrote, just before Thanksgiving where I listed the reasons why I was thankful despite the horrific nature of my situation and being only four months out from my spinal cord injury. Fortunately, every reason for gratitude I listed on that day still applies to my life today, with some notable additions of course, and it makes for a good opportunity for me to recognize one particular thing for which I’m recently very grateful.

I’ve shared my experiences at length about the unique therapy I’ve done in Maui and its incredible contribution to my recovery but one of the biggest challenges I always had after coming back home from Maui was the struggle to find ways to continue doing that Pilates-based therapy. I always felt like I would make these huge gains in Maui, only to return and have that momentum of improvement stall. Luckily, that isn’t an issue anymore.

Absolute Center is a busy, successful and well-regarded Pilates studio a short drive from where I live and in recent months, it has become my primary place for rehab and wellness. When I met the owners of the studio, I don’t think any of us expected our encounter to lead to the establishment of a legitimate program geared towards people with spinal cord injuries completely different from their usual offerings, but that’s what has happened. There are scores of Pilates studios all around the country and the world but it took the curiosity, progressiveness, and forward thinking of the studio owners to recognize that there was an opportunity to provide this population with a viable option for this kind of Pilates based therapy.

My last few months of training and being able to continue working with the same principles and techniques that I learned in Maui have been invaluable for my recovery. I’ve seen greater gains in a short amount of time by virtue of being able to consistently train in a supportive environment and amongst talented and knowledgable people who are committed to help me reach my short and long-term goals. Additionally, a number of other people with spinal cord injuries have been training there too and as a result, alternative and creative approaches to spinal cord injury recovery are being explored and pursued.

I am grateful for meeting these people and having the opportunity to maximize my recovery efforts and I’m excited see how a more persistent commitment to this therapy will show itself with the improvements in my body by the time I go back to Maui again.

While I must admit that I don’t love turkey or a lot of typical Thanksgiving fare (which is why we make a somewhat less traditional feast!), what I do love about this holiday is the notion of taking a moment to be grateful. Happy Thanksgiving to everyone.