Keeping My Covid Sanity

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These are unprecedented times. I don’t think there’s any question that none of us could have expected a few short months ago that our everyday existence, our livelihoods, our political, financial, and economic systems, and our humanity in general would be pushed to such extreme limits by the existence and spread of Covid19. In fact, when I think back to everything at the beginning of March, I almost can’t recognize myself and my own thinking compared to what it’s like now. How was I not washing my hands and sanitizing a dozen times a day? How is it that I didn’t know the difference between an N95, N100 and a disposable blue mask? What would the term “social distancing” mean to me before it had made a rapid and permanent entry into our everyday lexicon?

Life with a spinal cord injury is difficult enough. Add a pandemic on top of that and it’s quite a combo. For example, washing and sanitizing hands is important for everyone, but for me, even freshly washed hands can get exposed to the potential of Covid as soon as I touch the rims on the wheelchair in order to move. So not only do I have to keep my hands clean, I’m constantly wiping down the rims, handles, brakes and any other part of the chair that’s being exposed and touched frequently.

Another added challenge is that because of the nature of my cervical injury, my lungs and diaphragm aren’t innervated like normal. That means that when I need to cough, it’s much more difficult to do so. Clearing my throat or chest with a simple cough for a healthy body can translate to ten consecutive minutes of coughing for me just to get enough strength to clear out the obstruction. So… yeah, avoiding a virus that attacks your lungs and respiratory system is all the more important.

I’m keenly aware of my share of struggles with all that’s going on, but I want to write this post about some of the things I have been doing during this time, and how they have helped me weather not only the usual challenges of life with a spinal cord injury, but the added layers that have come with Covid.

Cooking

I’ve cooked for my entire life and and have always been one of those rare people that actually enjoys preparing food everyday. But Covid has presented unique challenges – and opportunities – to my food game. Irregular grocery shopping trips and the inability to get fresh produce all the time has resulted in some truly creative plates of food coming out of the kitchen. And because Brita and I are 95% plant-based these days, and since each meal I cook always lasts for at least 1-2 rounds of leftovers, making vegetable-driven food day in and day out has never been so satisfying, in more ways than one.

While I always make use of every part of an ingredient (stemming from my days cooking on a tiny budget as a student), even this effort has somehow improved. In the past, I might peek in the fridge and think that I have little to work with and come up with an excuse to go shopping or go an entirely different route. Nowadays, I might see a carrot, half of a zucchini, a few cilantro leaves and some frozen peas that are usually reserved for my 19-month-old daughter, and realize – Fried Rice! Boom! Or I might have a loose plan to make something (e.g. a South Indian Curry) and come across ingredients that I wouldn’t think could “go” with that dish. I’ll make a rash decision to just throw those things in and hope for the best, and this has yielded delicious results. I’ve learned that a small tweak (i.e. roast the broccoli in the oven and add it to the curry at the end, so it develops texture and doesn’t get soggy) or mixing ingredients from different cuisines (incorporating bok choy into a pasta toss as the bitterness is a natural component in regional Italian cooking) can allow me to stretch more out of what I have available.

Having lots of time on my hands has also resulted in me enjoying the slow and steady process of making something more time consuming that I ordinarily would avoid. For me, that means something like making my own wontons since I’m a huge fan of ANY kind of dumpling. The process of filling each individual wonton, delicately folding it, and sealing it closed with a dip of water, is not only relaxing, but also a great finger dexterity exercise – something I can always use more of.

A few very unprofessionally staged photos of my recent concoctions:

Mushroom & Eggplant Tacheen (Persian Saffron Rice)
Wonton Soup!
Crunchy Soba Stir Fry
Vegetarian Tortilla Soup
Lentil, Pickled Red Cabbage and Black Rice Grain Bowl

Mental Health and Exercise

Staying at home has also forced?/allowed? me to take extra time to do things for my mental clarity and health. I usually try to meditate everyday, but let’s be honest, it doesn’t always happen. Even though it’s not a massive time commitment, it’s something that is easy to keep putting off throughout the day, until hours go by and I realize I missed my chance. Not so during pandemic times! Why rush or skip a meditation when an entire day at home is what awaits me?! I can confidently say that not only have I increased the amount of time of my meditations, but I’ve rarely skipped a day in the last four months. Most importantly, for the first time, I can really appreciate the results. I notice that I have an extra layer of calm or gratitude or perspective as I go through the day, even if I’m encountering something stressful or reading about the devolving state of the world.

Something else that has kept me sane is a different writing practice that came out of nowhere. Very early in the lockdown, I knew I needed an additional creative outlet. Cooking is great, but there’s only so much food to make for two adults and a toddler. And being unable to do any of my regular exercise or physical activities left me with additional time and a greater need to do something intellectually productive. So one day, when my daughter was napping, I realized that several years from now, I would be explaining this truly surreal and crazy time to her.

I know that for me, hearing stories of my own migration around the world and my early childhood was impactful and informative. And so I decided that since these were such unprecedented times that we will all look back on with curiosity and amazement – to say the least – I would want to capture much of it to share with Yara when she’s old enough to understand. I also knew that while history would capture many of the primary happenings, it would be those little details or stories that might be the most memorable or interesting.

So I started writing a letter to Yara and adding to it everyday. Sometimes I would rant. Sometimes I would simply describe how we were passing the time. Sometimes I would recount the daily occurrences and the news. And sometimes, when I had writer’s block, I would simply look out my apartment window and jot down my observations of the urban landscape outside, or witness what people were doing in their apartments in the adjacent building. It’s all in one document, and I don’t plan to revise it or share it with anyone, but simply keep it as is. Maybe it’s nothing more than mental diarrhea and rantings of one goofy person’s thoughts, and maybe my daughter will think it’s boring, but I don’t care. It’s satisfying and fulfilling.

Joy in the Simple Things

As challenging as this time has been, I’ve greatly appreciated finding tremendous joy in things that I might ordinarily take for granted.

Before Covid, I’ve gone for a walk with Tortilla in my neighborhood dozens of times. But now, because that walk has been one of the only occasions for me to leave the house, I’ve savored everything about it. I’m lucky enough to live by a marina (albeit on the other side of a loud train track and a busy freeway) and my daily stroll down by the water, alongside the succulents and tall grasses, has truly kept me sane. An experience that would ordinarily mean little to me, was now the highlight of my day. And every little detail that might get overlooked (i.e. a cool house I’ve gone by and never noticed, a neighbor’s bountiful garden, the angle of the trees swaying in the ocean breeze) has now become a source of consistency and intrigue.

The same goes for family trips to the parks around us. Having a VERY energetic toddler has meant that getting outside and finding space for her to run around is essential. And while we’ve been to all the same parks and outdoor spaces before the pandemic, I’ve found a new and greater appreciation for these places. I’ve realized how fortunate we are to be in a climate that allows us to be outdoors all year around, and in a place where most people we encounter are respectful and adhering to the advice of public health officials, so that we genuinely feel like we’re all in this together.

*****

These are surreal times. I want to acknowledge how much hurt and suffering people are enduring right now. My heart goes out to all the families who have had to deal with the horrors of this virus. The thought of people dying alone in hospital beds, unable to see their loved ones as they take their last breath, is nothing short of horrifying.

I know that my own challenges with my injury, my body, and my persistent everyday challenges have taken on a new perspective as a result of everything that has happened. I’m trying to focus on those things that I do still have control of, even with a body that doesn’t respond to me the way I want it to. I’m trying to embrace swimming in the frigid ocean as my only means of exercise. I’m reminding myself to be grateful for my home, even though I sometimes want to smash through the walls and travel to the furthest reaches of the globe. I’m doing all I can to keep myself sane, calm, and mentally strong – all while surrendering to the reality of all the opposite emotions. And I’m doing my best to embrace it all.

Maybe the best highlight of the last few months was going back to Lake Tahoe, to the exact place where I stood up and proposed to Brita, this time with my larger family. So I’ll leave it there as I continue to navigate through this strange, strange world we’re living in…

Viva La Tortilla!

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I never had a dog in my life. I wasn’t ever asked to dog sit and I didn’t ever spend more than a couple of hours with dogs who belonged to friends or family. I felt certain that at some point in the future I would own a dog, but I never had a lifestyle that would justify having a dog. I didn’t have a predictable schedule, I traveled a lot, and spent many weekends away from home.

It was in the initial years after my injury that I first learned about service dogs and what they could do for people with spinal cord injuries. I met a few people with service dogs and only then did I start to comprehend just how amazing these pets were. Not only were they well-trained to perform a variety of tasks for their owners, they were also bred and raised to be docile, calm, and friendly to nearly every person (and other pet) they met. I found out that the primary organization raising these dogs — Canine Companions for Independence (CCI) — was based an hour north of my home. I did some research, found out that I would easily qualify, and I began the application process.

After many months of paperwork, phone calls, and an in-person interview, I was placed on the waitlist and told it would take two years to get my dog. During that time, I didn’t think much about the dog since I knew that it was a very long time to wait and I wanted to manage my expectations and delay the excitement until the opportunity finally arrived.

A couple of months ago, the long wait finally came to an end when I was invited to attend team training at CCI’s headquarters and get my dog. This would involve two full weeks of me living at their campus and spending entire days learning everything about these dogs in general, and how to work with my dog in particular.

As I began the two-week training I was simultaneously excited, yet nervous. I had spent all of the time since my spinal cord injury working towards improving my body while also learning how to move through the world and navigate through my day-to-day activities and I still had plenty of struggles and challenges.

And so I wondered, how would having a dog impact everything? Of course, it would help me in a number of ways, but how could I take care of another living thing when I could barely handle myself?

This is where I have to give huge credit to CCI and their program. From beginning to end, they had everything covered. They had informative lectures, plenty of hands-on training with the dogs, and a dedicated staff of dog trainers who were thorough, committed to ensuring our success, and willing to answer questions, of which I had many. The rooms and common areas they provided for us to live in were clean, well appointed, organized, and comfortable.

Most importantly, at the end of the two weeks, not only did I feel confident and capable of the many aspects of caring for my new companion, I was excited to bring home my dog and start a new chapter of life with a new friend.

Which brings me to Tortilla.

IMG_3342
Tort out
Tort Solo
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He’s awesome, and yes, that’s his name. Because they spend two years teaching them 40+ commands and meticulously training them using their names, CCI gives the dogs their name for life. Anyone who knows me will appreciate the fact that I got the one dog in the entire group that had a food related name, not to mention such a delicious item essential to a taco, burrito, enchilada, chimichanga, and many more. And it doesn’t hurt that he kinda looks like a tortilla…

So far it has been fantastic. I’ve surprised even myself with how quickly I’ve adapted to life with Tortilla and how much help, pleasure, and pure joy I get from having him with me. He charms everyone he meets and he even gets along with our sweet, yet temperamental, cat.

A huge thank you to Canine Companions for Independence for everything they did for me, not to mention the thousands of other lives they have helped over the years.

Body Language & Conversation Escapes

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We’ve all been there before. You’re at a party or social gathering and you find yourself cornered by someone who can’t stop talking. Escape seems impossible. You don’t want to be rude but it’s obvious that the person thinks what they’re saying is much more interesting than it actually is so you start to scheme an exit plan. The easiest excuses are usually the bathroom or the need to get a drink or food but sometimes it’s not quite so easy. At this point, whether conscious or not, your body language starts to indicate your immediate desire for an end to the conversation.

Maybe your eyes wander around the room, desperately seeking the welcoming face of a friend, or you start to lean or move away from the person, or your hands and body give some other cues that you’re simply not engaged in the conversation. One way or another, you finally make your way out and are grateful for the social freedom that seemed unobtainable just moments ago.

While scenarios like this are difficult enough, navigating them is even more challenging if you’re a wheelchair user.

I’ve written previously about the challenges of moving through the world two feet shorter than most others and how it impacts my mentality, but I’m long overdue to share a few thoughts on the differences of body language cues that I’ve encountered. I share these not only to express my perspective (and yes, to vent a little bit…) but hopefully to educate and raise awareness for others for when they’re talking to someone using a wheelchair or who simply can’t walk or move “normally”, particularly in crowds.

1) Just because I’m sitting and facing you doesn’t mean I’m interested in what you’re saying.

I know it’s blunt but I have to be 100% honest. This is my number one pet peeve and my most common body language struggle when it comes to social interactions.

Countless times, I’ve been stuck talking to someone (or, I should say, listening impatiently to them) and they’re clueless that for whatever reason, I’m not interested anymore. My theory is that because I’m sitting down and facing them and, yes, looking up at them, they think that I’m a captive audience. And I can understand some of the reasoning for that. I think it’s natural that if you’re standing above and talking down (literally, not figuratively) to people, you’re inclined to think that they are interested in listening to you. Think of a teacher in a classroom or a performer onstage or a speaker talking to a roomful of seated people.

But there have been too many times where I’ve tried to subtly express my disinterest in the conversation and only been met by the person continuing to talk at me. And because they’re standing right in front of me and blocking me from seeing most of the room, it’s hard for me to find an obvious excuse to cut the conversation short.

Like it or not, our respective physical presence has a huge impact on the way we interact. If a seven foot tall person is towering over you and talking, you’re more likely to listen than if it’s someone who’s much shorter than you. But if you’re the person with a larger physical presence, that presence can feel intimidating and cornering.

And that brings me to point number two…

2) Body language is muted when you’re not using your whole body

I’ve been in too many situations where I’ve needed to quickly leave a conversation (i.e. urgently need to use the restroom, wanting to catch someone before they leave, or just simply being in a rush to leave) and my body language cues are not being picked up by the person(s) I’m talking to. I can’t step back or lean to a side or fidget the way an able-bodied person could that would likely convey the need to let me out! On top of that, because I can’t see above people’s shoulders, it’s nearly impossible for me to look around the room and make eye contact with someone else to call out for a conversation rescue.

3) Being cornered or trapped in any way is very limiting and unpleasant

I think everyone can relate…. This situation has occurred to me the most frequently in restaurants or large mealtime gatherings. I’ll find myself at a table that’s difficult to get in and out of. Therefore, not only do I feel awkward having to ask people to move or bump into purses hanging off the back of a chair, I’m less inclined to want to use the restroom or simply get up and leave the table for any reason. And so I unwittingly accept that I’m stuck, and it’s not very fun.

I used to love parties and concerts, crowds and gatherings, and being in a big group of people. But often times now, these situations make me anxious and uncomfortable and so I avoid them. But I will say that I’ve become EXTREMELY grateful and appreciative of people when they DO recognize these physical challenges and go out of their way to pick up my cues or simply ask me what I need. It makes all the difference in the world.

So let’s all try to be more mindful of how we move through the world, how we converse with others, and the social and body language cues that we encounter. And if you see someone in a wheelchair or physically limited, be extra nice and considerate of them. You may think your story is super interesting, and there’s a chance that it is, but they may just be dying to have a bite of food or use the bathroom.  🙂

“Little Big Steps” has published!

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I could not be more thrilled, excited, proud (and relieved) to announce the publish of my book, “Little Big Steps – A Life-Changing Injury and the Inspirational Journey to Overcome the Odds.”

I’ve been working on it for almost three years and I have to credit all of you, readers of my blog and supporters of my recovery, for giving me the inspiration and motivation to take on this project.

If it weren’t for all the feedback and interest that I received about some of my early blog posts, I would not have known to dig into these stories, expand and explore the depth in each of them, and understand that I could actually be capable of turning them into a larger story. But here I am, a couple years later and with a book that I think can be interesting to all people, not just those dealing with a traumatic or life-changing event or adversity in their lives. Although the story of my injury and ensuing recovery is very unique to me, in writing this book I have selected the moments, perspectives, and experiences from my journey that are likely the most informative and relevant to readers.

So let this be my shameless plug. I ain’t no JK Rowling or Malcolm Gladwell, but with a strong wave of support and early sales of the book, especially in these initial days, I can make myself known to the bookselling gods, so please check it out! All the info and links to buy are on my book page. 

It’s available in print and all e-book formats (Kindle, Nook, Kobo, etc.) and for you listener/readers, the audiobook will be ready in just a few days. If you have enjoyed my writing and blog posts at any point, then the book is for you! Or maybe for a friend or family member? At the very least, an ornamental piece?

Thank you for all your support and for helping me make this happen.

Photo on 9-28-17 at 12.37 PM

 

Five Years On…

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I have a very vivid memory of the first day of school in fourth grade. I remember the begrudging acceptance that summer vacation was over, the yearning for just one more long day spent outside and out of the confines of school, and looking up at the calendar on the wall, next to the teacher’s desk, with SEPTEMBER folded open. I remember thinking to myself that it could literally be an eternity before all those ensuing months would pass, the calendar would flip to June and the liberation of summer would commence anew.

I don’t know about all of you but for the elementary school me, nine months felt like—and turned out to be—a very long time. By the time the following summer came, it seemed like I had been through endless glances at the calendar and a brutally long build up to the end of the school year.

We all know that as we get older, time does indeed move faster since a week, month, or year represents a smaller and smaller fraction of our full lives.

Today marks five years since my life was turned upside down by a spinal cord injury. Five years since everything I knew about my body and how I interacted with the world was broken, shattered, and left to be pieced back together (literally and figuratively).

Five years. 260 weeks. Half a decade. Has it felt like a long time? Or has it gone by fast? The answer, as you can probably imagine, is both.

On the one hand, five years have gone by surprisingly quickly. The weeks and months do seem to pass faster and faster every year. And I can very clearly remember my life before July 8, 2012 and it doesn’t seem like a long time ago at all. Maybe it’s because nearly every night in my dreams I walk, run, play sports and have more control over my body than I do in waking hours. Sometimes, in a lucid dream, I realize what’s happening and I tell myself to savor every second of it, knowing that I will inevitably wake up and go back to a very different reality.

But on the other hand, five years has also felt like a five-term life sentence in prison. To think that I’ve woken up 1825 days and encountered this body is still terrifying. To recognize how many singular moments of struggle, pain and discomfort I’ve experienced is mind-numbing and overwhelming. I can’t even conceptualize how many times I’ve had the wish, prayer and desire to somehow get rid of the impacts of this injury and go back to a day-to-day life that doesn’t need to be planned around managing pain and obsessively analyzing sidewalks, curbs, stairs, ramps and building access. Thousands of times? Millions? Possibly.

When it comes to the time frame of my injury—and especially when I’m approaching an anniversary—people often ask me two related questions:

1. Has living with this injury become easier at all?

2. Have I gotten used to it?

The short answer to both questions is an unequivocal NO.

I’m sorry if that’s not what people want to hear but it’s the truth. I’ve heard other people say, “oh you’ll get used to it” or “it’s not that bad once you figure things out.” In fact, I’ll never forget the hospital worker who told me—just days after my surgery—to look at the bright side: “At least when you go to a baseball game or crowded event you’ll have a comfortable chair to sit in and won’t have to stand in line!” (How or why the hospital employed and allowed that person to speak to people early after their injuries is still beyond me…)

I know of many people who’ve suffered spinal cord injuries who have said that things did get easier after a while, that they did get used to using a wheelchair and while I respect each person’s individual opinion and experience, that approach has not worked for me, and I’m not sure it ever will. I’ve been told I’m hard-headed (true); I’ve been told that my effort to improve my body and work on my recovery is simply delaying the inevitable; and I’ve been told that this injury can’t be beat, so the sooner I “accept my current condition”, the happier I’ll be.

Bullshit.

Yes this recovery hasn’t gone as fast as I would like. Yes I haven’t reached all of my physical or functional goals yet. And yes there is still a long ways to go. But if I had listened to those voices early on, there’s no way I could have stood up and asked Brita to marry me. There’s no way I could have gained enough strength in my abdominals, back and core to train for and complete a five-mile swim. And there’s no way I would have continued to gain physical breakthroughs and new neurological connections in my third, fourth, and fifth years after the injury, long after that two-year window when the doctors said the healing would surely stop.

The truth is that it’s because of, not in spite of, my commitment to my objectives and diligence that some things have gotten easier. But while certain challenges have lessened or been addressed with novel solutions, new challenges have always arisen.

Reducing pain or discomfort in one part of my body has resulted in new pain somewhere else. Because I have sensation all over my body, I am not disconnected from my lower body and know that being in any one position is uncomfortable and unwise. I still have to plan every single day around minimizing physical pain and how much time I spend in the wheelchair.

The psychological burden of dealing with this injury has become more manageable, but by no means would I say that it’s something I’ve become used to. The truth is that it sucked five years ago when I woke up in the hospital, and while many things have changed and improved, it still sucks today. Again, I’m sorry if this isn’t the narrative or story that people want to hear but I’ve only been sincere and genuine in this blog and so I share all of this with the utmost honesty.

One thing I admit I have learned and accepted is how to find joy and embrace moments of happiness despite all of my day-to-day challenges. For the first few years after my injury, I lived with a mindset that I could not and should not allow myself to feel happiness because that would somehow concede and accept defeat. I’ve learned—through the wisdom, love and support of my family, friends and most of all my incredible very-soon-to-be-wife Brita—to allow joy and happiness back into my life.

I no longer push away those experiences. I no longer think of joyful emotions as distractions from my commitment and pursuit of a healthier and stronger body and a more fulfilled life.

So where do all these ramblings leave me right now, on this five year anniversary and moving forward?

I am still working just as hard as ever on improving my condition. I refuse to live a life of perpetual discomfort and pain. I refuse to accept externally imposed limitations and societal and medical customs of what living with a disability should be like. I refuse to abide by a narrative that “it’s all ok now,” that “things aren’t so bad,” that time has healed all the wounds.

I will continue to listen to my body first and foremost. I will work hard and keep striving for new connections and improvements. I will push myself as long as the fire in me burns (and it’s burning as strong as ever now). I will rest when it is needed and beneficial and I will continue to carve out my own path to a better, healthier, more functional, more fulfilling life.

I am still bitter about the prognoses and outdated expectations that the medical establishment set for me. Instead of telling me that all the healing would occur in one year or two max, that after that I wouldn’t get better, I wonder where I would be now if they had provided more encouragement, support and validation for the potential to continue improving for many years to come. Although I never took them for their word or accepted their arbitrary prognostications, I know that those words impacted me profoundly.

In addition to the pursuit of my personal recovery objectives, I will continue to do everything I can to educate, inform, and alter the ubiquitous approach that our medical system still teaches and promotes to people dealing with spinal cord injuries. There is no place for a method that takes away hope and possibility from so many people in their most vulnerable time. This must change.

The human spirit is strong. The will to work towards something seemingly unachievable should not be discouraged or doubted. And our individual and subjective understanding of time, of what days and months and years mean to each of us, and what we each want to do with our limited time on this planet, should be explored and revered.

I never thought I could make it through five years of living with this injury, but I have. And I hope to continue on my path for another five, fifteen or fifty years to come.

Exciting News! – A book is coming….

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When I started writing this blog in November of 2012, just five months after I suffered a traumatic spinal cord injury, my intention was only to have an honest and unobtrusive way to keep my family and friends updated on the process of my recovery: the struggles, challenges, objectives, achievements, breakthroughs and thought processes behind this insane journey. I didn’t want to crowd everyone’s inbox with emails or spew out random thoughts or take to social media for these updates, so I figured I would write a blog and have it out there for whomever was interested in staying in the loop.

Little did I know where this would lead…

Thanks to all of you and your continued interest, support, encouragement and readership, the blog continued to grow and reach more people than I could ever imagine. Within a few months of me launching this website and sharing my story, I was getting readers and messages from all over the world. People were asking questions, seeking advice (for which I had very little to provide…), searching for perspective, and often times, relating some of the experiences I was sharing to their own respective experiences. I also learned that there were many people out there — with spinal cord injuries or other medical conditions or just life challenges — who could identify with some of the larger issues that I would sometimes raise.

I was flattered to have anyone outside of my personal social community care or read about my story and it wasn’t until many of you commented and told me that you wanted to know more about a specific story, that you were curious about something I had shared and asked me to delve more into it, that I got the idea for doing something bigger.

Well, I can now say that that bigger something is coming very soon.

For the better part of the last two years — and with increasing intensity, energy, time and commitment — I have been turning the story of my recovery into a book. And this book is coming to fruition now as I am in the final process of revisions and edits to get it ready to publish.

This blog has been so many positive things for me but I didn’t expect that it would spark the creative effort and undertaking of completing a full-on memoir of my experience. But alas, that’s where we are.

I will be posting more info very soon about the book — including a landing page where you can sign up to get updates and have access to an advance copy, as well as a specific timeline for the final publish (summer reading anyone???) — but for now, I want to thank all of you for the incredible support and commitment you’ve shown me in reading my blog, commenting, sharing your perspectives and launching this crazy little idea within me that will hopefully turn into something real and tangible very soon.

I always have, and still continue to read and respond to every single comment that has ever been posted on this blog and if it weren’t for the conversations that you have all initiated with me, this likely would not have happened. So thank you. I’m grateful to have this opportunity. And I’m excited to share the larger story very soon…

Finally finding exhaustion

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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

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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

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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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The Donner Party Swim

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7:30AM, East end beach, Donner Lake

The morning greeted us with a radiant sun rising up over the high Sierras, its rays cutting through the perfect blue sky and shining strong, reminding us that although fall was only a couple of weeks away, its summer warmth was still in store for the day.

The swimmers gathered on the shores of Donner, surveying the water, like a sheet of glass stretching almost three miles across the length of the lake. Some, like me, had trained for this day for months, convincing themselves that the frigid water and the 6,000 feet of altitude wouldn’t get the better of them in their attempt to push their limits and accomplish what had seemed previously unfathomable. Others had decided that they would get into the swimming spirit in any way, shape, or form and be out in the open water, itself a significant challenge and accomplishment. And finally, there were all of the friends and family who would cheer and support from a kayak, paddle board or from the dry, rocky, tree lined shore.

Starting the swim, water like glass

I had been worried that the powerful and relentless winds and waves that Brita and I had swam through when we had trained here a month earlier would challenge all of us and make this feat harder, possibly even impossible for me, but thankfully Mother Nature decided to prove me wrong.

The winds were pleasantly absent, the water was refreshingly cold yet beautifully clear, and the boundless energy and positive spirit of everyone permeated through the smiles and faces of all the swimmers and supporters alike. Even the orange swim caps with our non-profit’s name and logo plastered on the side (a last minute addition to the event that arrived just in time) looked perfect countouring everyone’s heads, marking us all a part of this magical experience which had all started as a crazy idea in my head nine months earlier.

Quick break to refuel and warm up!

And so it was that after weeks and months of planning and training and visualizing how this would all go down, September 10th was upon me, and this goal within my larger goal of recovery which had consumed and motivated and driven me for so long was now about to be realized…

I could write volumes about this day, I could share way too many details about everything, about the incredible community that gathered together, all the people who volunteered their time and efforts to make it a smooth and seamless experience, of the serenity of the water as each passing stroke of my arms cut through its stillness and propelled me forward, of the astounding sense of accomplishment I felt upon the completion of swimming those five miles around the lake…

Suffice it to say that it was one of the best days of my life, one that I will remember forever, and as I think of the collective energy of that wonderful community who showed up, who took the time to drive up to the mountains and be at part of this first of all firsts, I will draw strength and passion and hope for future accomplishments and conquered objectives. And it looks like there’s a good chance that we may do this all again next year…   🙂

Little video capturing some of the awesomeness:

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