10k Run = Success!

Posted on May 13, 2013 by arashbayatmakou

Well, I feel completely fortunate and grateful again for the amazing community of friends who turned out to support my recovery this past weekend by running 10km, either in person with us in San Francisco or in different places around the world. I had friends run in France, Canada, all over the US and even a brave friend who ran through the sweaty streets of Yangon, Myanmar despite the funny looks he got from locals.

Here in SF, we had over 100 people attend, many of whom trained hard and completed a personal goal by running these 10km or 6.2 miles. I didn’t go the whole way but I did push myself over 3 miles in the wheelchair (more than I had ever done) and, more importantly, I definitely broke a sweat as I high-fived the runners. The weather was warm and sunny, the Golden Gate Bridge emerged from the fog and there was so much positivity amongst everyone who attended. We had everyone from pregnant moms to young babies to an 87 year old in attendance but no matter what, people brought with them their smiles, energy and good wishes for my recovery. We were all rewarded with a variety of food and drinks afterwards, not to mention ice cream from a small, local producer who generously donated frozen goodness to everyone in attendance.

Thanks to the help from a couple of my rehab trainers, I was able to stand up in a walker and show all of my friends some of the progress I had made. I still have a long ways to go, but it felt great to stand up and look at everyone at eye level, without being wobbly or tipping over.

Thank you to everyone for participating and reminding me that I’m not alone in this fight and that I have the support of all of you to propel me forward in my recovery. Hopefully, the next time we have another event like this, I’ll be on my feet!

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.

Utah Rehab Update – Water Therapy

Posted on April 10, 2013 by arashbayatmakou

I wanted to send out another update from my therapy at Neuroworx in Utah. I’ve been interested in doing water therapy in a pool for quite some time now as I’ve heard from other SCI patients of how much they enjoy it and how much it’s helped them. While it’s possible to jump into a normal pool, the ideal therapeutic water therapy pools have the following elements:

A small pool (about the size of two hot tubs) that is relatively shallow (4-5 feet deep)
Jets for resistance and swimming exercises
Very warm temperature – almost like a hot tub since SCI patients have a hard time regulating body temperature, a traditional pool may be too cold
Floating devices and exercise equipment that is useful in the pool
Underwater parallel bars and treadmill
Physical Therapists and/or trained staff

Interestingly enough, I found a place not far from my home in California that has a therapeutic pool with all of these features but my pathetic excuse for health insurance has denied me for this therapy, even though my Rehab doctor and my PT referred me for it and said it would have many benefits for my recovery. My insurance states that because I can do land therapy (which they’re not providing or paying for either), there is “no medical need” for water therapy. As frustrating as that had been, I was thrilled when I found out that I was going to be able to experience water therapy during my time in Utah.

I ended up having water therapy every other day and I really enjoyed it. There is something fantastic about taking gravity out of the picture and feeling the weightlessness of my legs in the water. I did some exercises targeting my abs and core that were similar to movements that I would do on land, but the water allowed me to push my limits a bit more and not worry about falling face first into the ground.

Abdominal/core exercises – these are much harder to do for me than it may seem due to my weak abs. Also, notice the screen in front of me showing the underwater camera shots of my legs:

I also spent about 15 minutes just swimming against the jets in order to get a cardio workout and have full body exercise:

I hope this gives a good sense of some of the different therapies I’ve been doing and why I’m so grateful to have had the opportunity to do all of these things under one roof and under the eye of an incredibly talented and knowledgeable staff. My time at Neuroworx was very well spent and I’m excited about taking the lessons I learned back home and applying them to my continuing rehab.

Utah Rehab Update – The Lokomat

Posted on April 1, 2013 by arashbayatmakou

I wanted to send out a quick update on the rehab I’ve been doing here in Utah. I’ve had a great time here so far, meeting the inspirational founder of this facility and a fantastic group of physical therapists who are some of the most knowledgable and experienced professionals in the field of Spinal Cord Injury Rehab. It’s also been great to meet some other SCI patients, all at various stages of recovery and some even on their feet, walking independently.

I always said that I didn’t care if I never met anyone else with my level of injury who had recovered, because I would still push myself endlessly to reach my goal, but I must admit that it’s relieving, motivating and inspiring to meet other people who broke the same vertebrae as me and are back on their feet. That said, one of the things I’ve learned here is that no two SCI patients are the same. Even though I’ve met a number of people here with the “same” injury as me, there are many unexplained phenomena in terms of each person’s respective challenges and their prospective recoveries.

Ok so let’s get right to the fun stuff. I’ve been able to do some new exercises and use state of the art equipment that I had not previously tried which has been pretty fun.

You ever wonder what one $350,000 piece of equipment looks like??? Well let me introduce you to the Lokomat:

This is a revolutionary machine for SCI rehab as it’s adjusted to the exact length and size of my legs not to mention that everything – from the amount of weight I’m bearing through my legs to sensing how much effort and movement I’m giving to the walking – is precisely measured and captured in a computer. Nearly everything can be adjusted and tweaked to suit the particular person and well, it’s just pretty damn cool. Yes I do look a bit like Robocop walking but it feels amazing to stand upright and have such a natural stepping feeling for the first time since my accident.

One more video, just to show you a different perspective. Here you can see two important things: 1) the screen in front of me which is basically a virtual reality depiction of me walking and my movement is reflected in the digital game 2) the mirror below the screen, showing my legs walking:

There are only a handful of these Lokomats throughout the US so I’m very fortunate to have access to this one while I’m here in Utah. Stay tuned for another update soon…

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.

Flash Forwards

Posted on March 22, 2013 by arashbayatmakou

I’m boarding a train in a foreign country. As I scan my ticket to confirm my destination and its tricky spelling, I sling my backpack over my shoulder and step high up onto the train as it starts to rumble out of the station.

I’m walking through my old San Francisco neighborhood towards the tall trees of Golden Gate Park swaying in the gentle but persistent coastal breeze. I see my old neighbor on his way to work and wave at him as he walks on by and greets me from across the street. “Been a WHILE since I seen you man! How ya doing?”

I swing open the door to the restaurant and hurry excitedly up the narrow stairs. I enter into the dining room and see my friends gathered towards the back, ready for the birthday celebration. I can’t help but notice the tantalizing cocktails neatly handwritten on the chalkboard behind the bar. I decide that after months and months of preserving my recuperating nerve cells by avoiding alcohol, it’s time to order a drink…

We all know what flashbacks are, memories from the past of a specific moment that we remember clearly that are brought back into present consciousness. Similar to flashbacks, I have “flash forwards” that I’m sharing here now. Much like flashbacks (which we remember for certain reasons), my flash forwards are complex, rich in detail and as vivid as any memory. Thinking of them places me in those exact moments, my senses come alive with what I’m surrounded with and I feel as though I am experiencing that moment in real time. My smell (the sense that is most linked with memory) is heightened with the scents that I take in and I can realize the absolute realness of my flash forward.

Having studied psychology in university and always being interested in how the brain functions, I have read a lot about the damage and difficulty of painful flashbacks for some people. With or without a trigger, someone may relive a particularly challenging memory and become traumatized by the larger impact of that flashback. It’s not to say that all flashbacks are negative memories, far from it in fact, but I suppose I just don’t hear of many people talking about their flashbacks of positive memories very often.

My flash forwards are incredibly helpful for me. They fuel my recovery, they give me something specific to work towards, and they represent a light at the end of the tunnel in some ways. They show me what life can look like when I’m not on the dark side. They provide specific details of situations that I can’t presently experience. They remind me of what is most important to me and why I’m fighting so hard everyday to regain the physical abilities that I lost in my accident. Instead of trapping these experiences into history and saying that they’re a part of a past that I won’t ever see, I place them in front of me, in my future, with the utmost intention of realizing these flash forwards.

They are NOT wishes, they are NOT dreams, they are NOT aspirations or hopes. For these reasons, I can’t tweak them and change them around as I see fit. Much like memories which are based on facts of how things happened, flash forwards are structured the same way, as inherent truths, based on facts of how things WILL happen. That’s why they come to me organically and vividly and I have little control of how I see them. I just choose to accept them and see them as a glimpse into a definite future.

I’ll leave you with one more flash forward. As I have mentioned on this blog, just three days before my accident, I had one of the most amazing experiences of my life on a backpacking trip in the mountains with friends. For months, I have struggled many times wondering if I will ever have an experience like that again, if I’ll ever feel the joy of carrying all of my material needs on my back and venturing into the beauty of the high mountains…

The weight of my backpack feels heavier than it used to on previous trips but here I am again slowly hiking up the narrow trail surrounded by the majestic Sierra Nevada mountains of Eastern California. I’m definitely putting more weight on my hiking poles than I was expecting but I’m still stepping up the gravel path in anticipation of the alpine lake at the top. My steps are a bit crooked as it becomes apparent by looking at my footsteps that my left leg is still a bit weaker than my right, but I feel strong nevertheless. The air two miles high is thin and cool and I’m panting regularly but the sun radiates through my entire body, warming me through from the inside. I’m enjoying each step I take in my rugged hiking boots and I smile and realize I never knew that this moment would come again.

Compounding challenges of a cold

Posted on March 14, 2013 by arashbayatmakou

A cold is no fun for anyone. I recognize that. Who wants to have any portion of their day spent dealing with sniffling, sneezing, coughing, headaches, body aches, or joint aches? But living with a Spinal Cord Injury and having a cold just feels like a cruel joke from the universe. As if things aren’t challenging enough on a daily basis, having to deal with the added stress of even more physical obstacles is debilitating.

Before my accident, I almost didn’t know the meaning of getting sick. I might get a sniffle or two here and there but I can confidently say I pretty much never got sick. The last time I had the flu I was a 6th grader. Fevers were a long forgotten memory from childhood, when there was a bittersweet thrill in staying home from school, drinking endless glasses of orange juice and eating my mother’s home remedies of vegetable soup. Strep throat, mono, bronchitis, and anything that would have had me bedridden for more than a couple hours were completely foreign to me. To be honest, I was a bit unsympathetic towards people who were consistently missing large chunks of time from school or work due to minor sickness. Well, what a difference a traumatic accident makes…

Since I got out of the hospital, I’ve made a huge effort to be as healthy as I always was, if not more, so as to avoid getting sick and compounding my daily challenges with new ones. Thanks to those efforts I’ve been fortunate to avoid any illness despite the fact that I’m constantly working with different people who are around a lot of other sick people. The streak ended yesterday when I came home exhausted, achy and nursing a stubborn cough. Today was the first day of therapy in over eight months that I missed and it’s incredibly frustrating to think that even one day of rehab and exercise has to be compromised from my recovery due to something that’s out of my control. I take my rehab very seriously, and as anyone who knows me should recall, I don’t do anything that I care about half-assed.

So why is it especially challenging to deal with illness with a SCI? I’ll provide just a couple examples. My lung capacity is much less than it used to be before my accident. I remember one night in the hospital just days after my accident when I did not sleep the entire night because I had a tiny bit of phlegm in my chest but I was too weak to cough it up. I’ve gotten some of that lung capacity back but now I have a tiny scratch in my throat and I cough and cough and can’t clear it up. So I have to do the impossible, accept it and just deal with it. The other example is just how hard it is to do anything when my shoulders are achy and sore. I use my shoulders and arms for everything so even shifting positions in bed feels like a monumental task when my shoulders feel like heavy, painful clubs hanging off of my torso.

I realize that everyone gets sick and that my pseudo invincible previous self has to swallow his pride and accept that it’s ok to be under the weather a bit and that it’s temporary. But it doesn’t relieve my frustrations at having to deal with even more obstacles in an already challenging daily life.

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.

Arash Recovery

My journey to get back on my feet

Tag Archives: spinal cord injury