Five Years On…

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….

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

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.

 

 

The Donner Party Swim

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: