Scared of stairs

Posted on May 9, 2013 by arashbayatmakou

One inch. That’s all it takes to stop me in my tracks, bring my wheelchair to an instant halt, and fling me forward and potentially face plant on the ground. In those first few weeks after my accident, while I was still in the hospital and learning how to maneuver myself in this rolling contraption that I hate so much, going over the smallest bump or gap would send shooting pain through my neck and spine. Just getting in and out of the elevator or the front door of the hospital to get some fresh air was an adventure as I could feel every jolt through my entire body and I would beg whoever was helping me to encounter these tiny bumps or rises as if I were off-roading over huge dirt mounds.

I’ve come a long way since then with my wheelchair as I no longer have much pain, but as I’ve gotten stronger and more able to go to new places, I’ve become more aware of where I walk…I mean….roll. Considering how much I already hate being shorter than everyone around me because I’m always sitting (see a previous post), it’s frustrating to have to always keep my gaze at the ground and be on guard for any change in surface that will maintain my safety.

As a healthy and active person before my accident, I never thought twice about the entrances to homes, stores or restaurants. I lived on the top floor of an old San Francisco Victorian, with a bunch of stairs and no elevator. Many of my favorite restaurants and bars were situated at the top or bottom of a narrow flight of stairs. In a city where space is scarce and any kind of real estate costs a small fortune, there are few residences that are accommodating to someone in a wheelchair. As a result, to this day I can rarely visit my friends in their apartments or homes. “We’d love to have you over but we’re not sure if the stairs are doable” is something I hear frequently. To my friends’ credit, I have been able to bypass some seemingly sketchy entrances with some creative use of plywood ramps combined with some strong bodies pushing, pulling or even carrying me Cleopatra style.

I constantly fantasize about how monumental it will be for me to just make that first transition out of this wheelchair. Even if I have to use a walker or crutches, having the ability to go up a stair or two will open so many doors for me (literally and figuratively). I’m sick of always worrying about the smallest bump in the sidewalk or an elevated driveway or the unexpected stair and thinking how exactly my wheelchair and body would travel through the air if I were to encounter these foes without the utmost caution.

It is the biggest understatement when I say I can’t wait until I begin to get out of the wheelchair, which I refer to as my savior and worst enemy. I know I need it for now but I like to think that my hatred for it, combined with my love and driving desire to stand and walk, will lead to an imminent change in how I get around, and will lessen the feeling of being scared of stairs.

Sacred places and the case against being a couch potato

Posted on April 29, 2013 by arashbayatmakou

Sometimes I wonder why this injury had to happen to me, why not some couch potato who could just as easily sit on a sofa (or now, a wheelchair), and spend hours watching TV or playing video games, and having little to no concern about the weather outside or their natural surroundings. My situation would probably be easier if I were like this. Being a sedentary, physically unmotivated person who wanted nothing more than to be passively entertained would translate quite well to the common prognosis of life post-Spinal Cord Injury: sit on your ass, get around in a wheelchair, abandon hope of regaining who you were prior to injury, gain weight, and do your best to deal with your “new” life. But as I’ve stated many times, I am the furthest thing from this type of person and so I have to accept that while the path of NOT being a couch potato may be extraordinarily harder for my recovery (I would think a couch potato may not even bother to try to recover), the potential reward of rediscovering any of the active things that I used to do is monumental and motivating to me to continue my fight.

I believe we all have places that are sacred to us, and many of my sacred places are associated with nature, the outdoors and the absolute sense of serenity, joy and fulfillment I get from visiting these places again and again. Over the last two weekends I had the pleasure of going to two of my sacred places: Yosemite National Park and the coastal areas of Marin County, north of San Francisco. On both occasions, generous friends opened up their homes and I was fortunate enough to share these experiences with incredible friends who treated me as I always had been, and recognized and respected how important these places were to me.

My earliest memories of Yosemite are as a child, grumblingly pitching a tent during a pouring thunderstorm, hiking underneath craggy peaks and swimming in its cold yet refreshing rivers, streams and lakes. I have explored many different corners of the park, which in more recent years has come in the form of finding solace from the large crowds by backpacking through its less-traveled trails and finding its more hidden treasures. I was nervous about coming back to this sacred place without the ability to hike and move as I used to. Honestly, I had avoided a trip to Yosemite since my accident specifically because I didn’t want my memories and nostalgia to overwhelm and upset me.

By contrast, I had spent a bit of time in the gorgeous coastal areas of Marin County as a teenager, but my deep appreciation for this sacred place developed in the last few years through my frequent road bike rides through this area. Living in San Francisco meant that I would often hop on my bike, cross the majestic Golden Gate Bridge and escape from the city to surround myself with coastal redwoods, rocky beaches and winding hilltop roads.

To be honest, it was excruciating at times to be in these sacred places in a wheelchair, unable to stand up or walk or go anywhere with uneven terrain. It pained me to conjure cherished memories of past experiences and to wonder if and when I would ever do those things again on my feet. I would be lying if I didn’t admit this, but to my surprise, I discovered that despite my physical limitations, it was fantastic to be in these places again. Those ethereal granite cliffs of Yosemite Valley haven’t changed much in hundreds of thousands of years, and there’s no reason for me not to continue to appreciate their beauty now. Sitting in the sun with friends, eating freshly shucked oysters and enjoying a beautiful afternoon was a bit more tedious because I was stuck in a wheelchair, but it wasn’t enough to take away from savoring that moment. I even figured out a way to lean my knees against a picnic table and stand up with the help of a couple friends.

The mixture of emotions that comes with going back to my sacred places, albeit in a very different physical state, is a difficult challenge, but at least now I’ve reopened the door to enjoying them and can use fresher memories of these places to fuel my continued recovery.

Getting towed by two black labs

Standing up!

Another dose of perspective: handling my hands

Posted on April 18, 2013 by arashbayatmakou

We all take our hands for granted. There. I said it, and I really mean it.

I have written about a lot of my different physical and mental challenges here, but I have yet to dedicate an entire post (or more) to one of the most devastating aspects of my Spinal Cord Injury: my hands. Take a moment and just think of the small, fine movements you use your hands for throughout the day. Examples:

Unscrewing a cap of toothpaste; splashing water on your face, squeezing shampoo into your hands, buttoning your shirt, zipping a jacket, tying your shoelaces, fastening your belt, unscrewing a jar, peeling open that annoying thin aluminum wrapper that always rips on a small container of yogurt, pouring milk into your coffee, eating with utensils in both hands, grabbing your keys, locking the door, turning on the ignition in your car, pulling a credit card out of your wallet, handling cash, signing a receipt, and on and on and on…

Every single one of the functions and movements I described above are significantly impaired for me because of weakness in my hands and fingers. Some of the things I listed are still nearly impossible for me (squeezing shampoo), a few have become easier and more routine (signing a receipt, unscrewing toothpaste), and some I can do decently, just more slowly and weakly than normal (tying my shoelaces, buttoning my shirt).

I have become entirely accustomed to not trusting my hands. I am constantly dropping things on the ground. I still can’t hold my laptop or a heavy book with one hand. I am patiently waiting for the day that I can hold a plate of food comfortably without feeling like I’m lifting a 100 pound dumbbell. Opening packaging or a wrapper on everything from a pack of gum to an envelope is still a massive challenge and I’m stuck asking for someone’s help much more frequently than I would ideally like. I have to sleep with a bulky splint on my hand to help my fingers extend and open and feel more limber the next day.

Now I’ve only discussed basic yet necessary tasks and movements for everyday function without even mentioning maybe the most disturbing and frustrating aspect of my injury and its effect on my hands. Put aside for a moment the obvious challenges of someone outdoorsy and active like me who cannot walk or run or hike or do any of the active things I love to do. Let’s accept how excruciating it is for me to be cooped up inside on a nice day when I’d normally be riding my bike or playing soccer in the park. The two “indoor” activities that I enjoy the most, activities that are just as important in defining who I am and what I love to with my time – playing guitar and cooking – have been taken away from me. When I tell people that this is the most humiliating and debilitating injury I can think of because of the number of ways it affects me, THIS is what I mean. Cooking a big dinner for friends or having a lively jam session were fundamental elements of my personality, and now I can’t even do these. This is why it feels like almost my entire identity has been crushed by my Spinal Cord Injury.

I have zero intention of turning my blog into a whinefest to complain to the world about my problems, so I’ll express the entire motivation and reason I’m writing this rant: I am extraordinarily lucky to have the function I have. Even I, in this state of constant frustration and recovery, feel incredibly fortunate for the strength and abilities I DO have in my hands.

Breaking my C5 and C6 vertebrae in my neck would typically mean that I have limited range of movement in my shoulders, weak biceps, floppy wrists with almost no strength to bend or extend them, little to no function in my fingers and hands, and significantly weakened triceps. Most of the other people I’ve met with my injury have had a much bigger struggle with their hand function. It’s one of the first things other SCI patients quickly recognize when they see me. “Dude, you’re a C5?? Your hands look pretty good…” No one knows exactly why my hands were spared some of the damage and it just continues to prove how mysterious and misunderstood this injury is.

Now if this isn’t amazing perspective, I don’t know what is. Every time I want to complain about not being able to strum my guitar, write music or chop onions as quickly and ably as I used to, I think of how much worse it could be and how lucky I am to at least have the function that I do have in my hands. I admit, I work extremely hard on my hands, at least 2-3 hours a day doing various stretches and exercises (like typing) that have helped me tremendously. To finish on a positive note, I want to recognize a few of the small accomplishments with my hands in the last few months: I can type at almost the same speed I used to, flossing is effortless, I can hold my chef knife and chop much better than before, and I’m trying to fulfill my musical desire by learning the piano. Here’s to continued improvement with my hands, to us all recognizing how amazing our hands are and not to take them for granted.

A much needed change of scenery

Posted on March 26, 2013 by arashbayatmakou

After months of the same routine, of going to the same places on the same days and feeling trapped in redundancy and “Groundhog Day” syndrome (you’ll have to see the movie if you don’t know what I’m referring to here), I decided to shake things up a bit. I’ve come to Salt Lake City, Utah for two weeks to try a different rehab center and to see what kinds of ideas, practices and exercises I can learn from their experienced team of therapists and SCI professionals.

I have to explain how important this change is for me. For years, I travelled frequently all around the world, mostly for work but also for pleasure and before I could get too bored or accustomed to any one place, I was on a plane to a different destination. Even when I was living in one place and leading a less itinerant lifestyle, I was constantly taking weekend trips to the mountains, camping, hiking and exploring the natural outdoors which I love so dearly. So adding to the long list of physical challenges from my accident is the challenge of routine and boredom from doing the same thing over and over.

Over the last few months, as so many of my friends travelled to different destinations and shared their excitement either directly to me or indirectly through Facebook and social media, I had to quietly hear them and fight the envy and jealousy I felt and battle the frustration of not being able to travel myself. In fact, before my accident, I had booked a trip to Lebanon and I’d tentatively scheduled a hiking trip to Patagonia. All of that went out the window. Now, while Utah isn’t a new place for me (I used to work here quite a bit), it’s the break from routine that I’ve been waiting for and I’ve come to Neuroworx to make the most of my experience.

Neuroworx is a non-profit founded by a man who suffered a bad cervical Spinal Cord Injury himself. He was a practicing doctor, with a family and a successful career and, as I know from my own experience, his entire life turned upside down in one instance. (You can read his story here, very inspirational) Although he had trampolines his entire life and had used them for years, his accident occurred on his trampoline in his own backyard. Being a physician, he knew almost immediately that he had suffered a Spinal Cord Injury and so began his own recovery.

Being told he would never walk again (sound familiar??) he teamed up with an incredible physical therapist who worked with him and helped him recover. Now, while he still deals with many of the challenges of SCI, he is walking and has recovered tremendously. That physical therapist became his partner and she is now the head PT at Neuroworx, coordinating the regimens of the many patients who come through their doors.

I’m excited for this change and will try to post a couple updates from here. Now it’s time to enjoy the mountains and the break from routine.

Video Update – Parallel Bars Walking

Posted on March 5, 2013 by arashbayatmakou

I’ve been using the parallel bars for quite some time now and just a few days ago I had a relatively small but significant breakthrough that I wanted to share. The following video (from March 1st) shows a great development in my walking exercises and reminds me that progress does occur, even when it doesn’t feel like it. As you watch, please keep the following things in mind:

Don’t be confused and think this is the big thing: I’m not walking on my own….YET. It’s hard to see but the therapist is holding my core steady with the strap around my waist and she’s also using her leg to lock out my plant knee because I can’t do that yet. That said, it’s still pretty cool.
I recently started doing this exercise without shoes because I can slide my feet with socks. Maybe it’s cheating a bit but it’s helped me initiate the movement from my hips and actually pull my leg through with more strength.
Previously, the therapist always had to move my legs for me but this was the first time I was able to shift, move and slide my legs forward on my own.
Yes I’m rocking a pink shirt. Real men wear pink. End of story.

Spurts and plateaus or a slow and steady climb?

Posted on February 20, 2013 by arashbayatmakou

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked: ”How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

Sharing the story of an inspiring friend

Video

I want to take a moment and give a shout out to a recent friend and his outstanding achievements after suffering a Spinal Cord Injury of his own. I was introduced to Grant Korgan just weeks after my accident while I was still in rehab at the hospital and I remember talking to him and instantly feeling better knowing that someone else out there could possibly understand what I was going through. “You have a new best friend bro, feel free to call me anytime you want” is what he told me. Grant suffered his accident almost three years ago and was given the same uninspiring prognoses from his doctors about his chances of recovery.

Despite the challenges he faced, he worked his way out of his wheelchair, became much stronger, started walking with canes, and became the first adaptive athlete to hand-ski to the South Pole in Antarctica. This effort was chronicled by a documentary film crew and Grant has also written an inspiring book about the first year of his life after his accident entitled, “Two Feet Back.” I read his book and highly recommend it to anyone interested in learning of a person who has approached his recovery with unwavering optimism and positivity.

I want to dedicate this post to sharing Grant’s talk at a recent TEDx event. Check out his video and if you only have a few minutes, feel free to skip to 16:08 and watch and listen to the song about his story and recovery. I am continuously inspired by him and discover so many similarities to my own recovery. Madluv to you Grant

TEDx Grant Korgan: The Goosebumps of Life

A six-month reflection

Posted on January 9, 2013 by arashbayatmakou

It has now been exactly six months since I suffered my Spinal Cord Injury. Six months in which everything I knew and did in my life dramatically changed, six months in which an outstanding community from near and far came to support me consistently and with arms wide open. I’m not sure exactly how I feel about this moment.

On the one hand it feels like an absolute eternity that I’ve had to live with a severe disability, unable to walk, unable to work, unable to do all the activities that contributed greatly to my mental and physical well-being, and battling everyday with the uncertainties of my injury. No one tells me if and when I will recover or how much. Doctors, physical therapists and medical practitioners seem so obsessed with liability, lawsuits and the fear of giving me false hope that they barely show excitement at my accomplishments. Of course for me, any major development (i.e. a wiggling toe) is a tiny step closer to my ultimate goal of full recovery, but all I hear from the medical establishment is to accept the current situation and “become as independent as possible”. They don’t push me to challenge my limits or boundaries, they don’t encourage me to take part in other therapies and treatments, they don’t encourage me to keep hope alive; I’ve done all this through my own will and volition. It definitely feels like I’m a lone fish swimming upstream against a relentless current that says to accept things the way they are.

On the other hand, in some ways it does feel like time has passed rather quickly. I’ve found a rhythm and schedule that work for me. No less than six days a week, I’m driving to different parts of the Bay Area to access the therapies and treatments that have contributed so much to my improvement thus far, and filled in the enormous hole that my medical insurance (and their approach) has left for me. I’m shocked by how quickly summer changed to fall and now to winter and the new year. I’m astonished that I’ve already been through so many mornings having woken up and been angry at not being able to jump out of bed and onto my feet. Or how many evenings I’ve endured with a sore butt from sitting in a chair all day.

I have purposely set my goals high, because I know that compromising how I set my goals compromises my potential accomplishments. So I will stick with my goal from the beginning, that on my birthday this August (over 13 months after my accident), I will be on my feet and walking. Everyday can and does often feel like a struggle, but if I’ve made it six months already and improved so much, I can only hope to exceed my expectations for the next six months.

Wiggle wiggle pinky toe!

Posted on January 3, 2013 by arashbayatmakou

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I’m laying in bed, slowly waking up and adjusting my eyes to the winter sunshine as I glance out the window, when I decide to do some visualization exercises with my legs and feet. I go through the usual exercises that I’ve been doing as frequently as possible in my free time: flex my feet, bend my knee, rotate my legs in and out. Since my accident, I don’t get any movement in my lower body when I do these exercises but I’ve stubbornly and consistently kept at it. The reason why everyone – from the nurses in the ICU to my spine surgeon to my acupuncturists – has emphasized the importance of visualization is the belief that there is enormous value in sending a signal from the brain to the lower body and by thinking and trying to move those limbs, one can repair the neural pathways and reestablish that damaged connection.

This time though, something feels different. I lift myself up to sitting with my legs straight ahead of me on the bed and I throw off the covers to get a better view. Something just feels different, like there’s movement and it’s not just a spasm or reflex (which I have frequently as well). I stare at my right foot and see that my pinky toe is slowly moving in and out. To make sure this isn’t a fluke, I stop and do nothing. Pinky toe doesn’t move. I try again and there it goes, immediately responding to the signal I’m sending. This can’t be right, it’s been months and months of having my legs and feet dangle lifelessly as I’ve dragged and lifted and bumped and dropped them from place to place in this strange new world of life post-Spinal Cord Injury.

I do it again, this time to confirm that what I thought I had been seeing could actually be real. “Wiggle little toe, wiggle”. Wiggle wiggle it says, as it dances back and forth, proving to me that for the first time in almost six months, I have regained motor control of a part of my lower body.

What a development for the new year, what a way to show me that 2013 really will be a special year, one in which I hope to achieve all of my recovery objectives and kick this damn injury’s ass! It’s only one pinky toe, on only one foot and it’s still a long ways to go I’m sure before I can move my legs around like I used to, but that pinky toe gave me so much hope for the future of my recovery. To go from feeling that moving any part of my lower body is the equivalent of moving a table with my mind, to then finally seeing a flicker of hope in a tiny little pinky toe is an indescribable moment. Now, I can move this toe 10,000 times if I have to until it leads to me being able to control my other toes and then my foot and then my ankle and then my legs… My fire of recovery has been fueled, my conviction has been confirmed and my dream to reach my ultimate goal has entered into the realm of reality.

Want proof? Here it is:

To a new year of new recovery

Posted on January 2, 2013 by arashbayatmakou

2012 was a bad year for me. While the first half of the year included a new job, a fantastic trip to Colombia, planning a move to a new and exciting house in SF, and some amazing hiking and camping trips with friends, everything came to a screeching halt on that fateful night in July when I suffered my Spinal Cord Injury. Paralysis is not a word I use very much to describe my condition because I hate the defeatist connotation of it, but I have to be honest about my situation after that accident: I was paralyzed, in more ways than one.

While my body was paralyzed from the chest down, so many other things had been paralyzed as well. I had been in peak physical condition before this accident and as a result of years of taking care of my body and consistently pushing myself athletically, I was in better shape as a 30-year-old than I was as a Division 1 college athlete, and sadly all of that was out the window. My new job at a renewable energy startup, and a potential springboard to a career in the field was suddenly stripped away from me. My summer plans of moving and setting up a new house, weekend camping trips in the mountains, and a vacation to Lebanon vanished right before my eyes. Everything that I knew, almost everything that made me who I am was turned on its head.

And now, almost six months after this horrendous incident, a new year is here. 2013 is the year that I walk. It’s a pretty significant task so it’s hard to call it a resolution, but the challenge of it means I will dedicate myself to it more than any resolution in the past. I will do all I can and work harder than I’ve worked to bring this to fruition. I’ve learned in the past few months about the incredible support of my community and I ask for your continued support in this next year, a year in which I plan to see all of you while standing on my own two feet. Happy new year to all.

Arash Recovery

My journey to get back on my feet

Category Archives: Motivation