I want to attempt to explain one of the more nebulous and perplexing aspects of my recovery. I’ve been wrapping my head around this for a while now but I haven’t quite figured out how to put it all into words and hopefully make it understandable for people without a Spinal Cord Injury. There is a significant process that is noticeably more difficult for me now than before my accident: the monumental, almost overwhelming mental effort that I have to put into all of my rehab.
Every exercise, movement, or activity that I do involves a massive mental commitment from me. This is nothing like what most of us are used to doing when we lift a weight, take a step, hold a stretch or pedal a bike. As an able bodied person, those actions are performed subconsciously. You don’t have to tell yourself and instruct seven different parts of your arm how to curl a dumbbell… you just do it. You don’t have to close your eyes, channel your breathing, try to contract one muscle while relaxing another just to take a step when you’re on a run… you just place one foot in front of the other and continue on. Not so with a Spinal Cord Injury.
Everything I do involves me REALLY thinking about it, specifically when it comes to those parts of my body that are most damaged by my injury and not functioning properly. The nerve signals just aren’t getting through like they used to so it takes me that much more effort to try to engage a muscle that hasn’t effectively received the signal to engage. This is what makes an injury to the nervous system so debilitating. It’s not just a matter of effort. If it were, then the many hours a day I spend on my rehab would have much quicker results.
I think back to what it felt like to exercise before my accident and it all just seems so easy to me now! I didn’t really have to think THAT much about what I was doing. I would just DO things, perform movements, complete activities, and ultimately I’d get stronger and fitter. I was never mentally drained from going on a run or biking half the day because I could do that repetitive motion subconsciously and with little to no mental strain, all the while listening to my iPod or chatting with a friend. Nowadays, if I don’t give 100% of my mental attention and focus to the specific movement I’m doing, not only will I have little to no chance of effectively completing the movement, I will finish the activity without any sense of accomplishment.
Another way to put it is that those muscles that I’m trying so desperately to wake up and reestablish the connection with will only have the teeniest, tiniest chance to get that signal from my brain only if I try really, really hard to break through the neurological impasse that’s taken root in various parts of my nervous system. This whole process has educated me greatly on how incredibly electrical our bodies are. No matter how big or strong our muscles may be, nothing can happen unless the wiring that’s distributed throughout the body is functioning properly. As a result, I often have to close my eyes and remove all visual stimuli in order to be able to give sufficient mental awareness and energy to what I’m doing.
This may seem arduous and exhausting, and it was at first, but now I have to admit I kinda like it. It makes me very present in what I’m doing, it forces me to tune everything else out and focus fully on the task at hand and although I wish I could see the results more quickly than I do, I know that this tremendous effort is what will sustain my recovery and continue the healing that I so desperately strive for.
Arash Recovery 
Neurological injuries are multi-layered and the majority of people will see only the outer, visible effects… while the deeper damage remains unseen and often ignored by the outside world. Exhaustion from the effort taken to do simple things is both physical and mental.. and takes an emotional toll.
The invisible damage is often difficult to pinpoint and to explain and therefore remains unknown and unnoticed, or is misunderstood.
Yet, as you also say, the rewards are there, if not obvious. To be able to live in the moment, right now, and very aware is something many people never experience and it is through that ability that life becomes very vivid on many levels… not just the path of recovery, but in the ability to experience all aspects of it fully.
Although your injuries are different, I see many parallels between you and my son in the way you approach and deal with the journey you are taking. And I know how proud I am of my son 🙂
Yup, it’s that invisible damage that is so hard to understand, not just for outsiders but also for me since it many ways, I look and feel fine, but obviously things are damaged underneath the surface. I’m sure this is something you’re familiar with because of the struggles of your son and it’s a frustrating aspect of this injury. It definitely has taught me to enjoy the moment a bit more than I used to, and it has brought so much more consciousness and attention to my physical exercises. Continue to be proud of your son, I can only imagine what he’s going through. -AB
My son is doing just fine, Arash…annoying, insulting (in fun), funny, frustrating… your average son, really 🙂
But the invisible injuries are the hardest to deal with. many don’t even become apparent for a long time as the fight for recovery occupies attention.
But there are invisible benefits too, and those are the priceless realisations that you find along the way.
In Light,
Sue
I’m sending you and your son positive energy, always -AB
You are on the very right path!
Plz , don’t focus that much on the process of recovery while you are trying to make things work out , I guess it’s better to do everything without thinking and doubting , just do the things you are doing on their best … And while you’re working on that find something to get busy with, something that’s not done physically , and also doesn’t require that much of mental effort , it maybe a chance for you to figure great things out ..
Sending my best thoughts and positive energy 😊
You are a very great and positive person , great things are waiting for you !
Thanks for the words of advice. What you mention is one of the most challenging aspects of this recovery, working hard with a focused goal in mind, without becoming obsessed with every little step towards that goal. I’m definitely doing my best to get busy with other things in order to keep my mind a bit distracted and I will continue to do so. I appreciate your support and positivity. Hope you keep reading 🙂 -AB
I’m glad you wrote about this; as I wasn’t aware – didn’t fully understand about the electrical connections. I didn’t think about the fact that you are literally trying to rebuild that connection. It is amazingly complicated and I’m so glad you are sharing. Sending you good energy as you continue on your recovery!
There are so many aspects of this injury that people are less aware of so I don’t blame you. I know that people may generally only focus on the physical limitations that I face, without regard to how difficult some of the challenges are that are more under the surface. Thanks for the support as always -AB
Arash – Another inspiring and enlightening post. Keep up the hard work – you’re amazing. – Arthur
Thank you my brotha on the east coast 🙂 -AB
these are great reads, put lots into perspective…hope we can catch up live…bunch of guitar stuff going on here that you would enjoy, I think…persevere, brother…thanks, dan
Look forward to catching up with you soon Dan -AB
Arash, only last night I was thinking about you, hoping you were well and wondering when you would write your next post. As always you attitude, perspective and determination is so inspirational.
I was wondering if you are still fundraising and if there is a way to donate through a 501c3 (tax deductible entity). Especially as the end of the year approaches, that would open up options. Let me know. Either way, I would be honored to help fundraise. That is one concrete thing I know I can do and at times a third party makes it easier. If you would like to explore, email me anytime.
Be well Arash jan.
What a kind offer! Yeah I’m working on trying to get tax deductible status for fundraising but I’ll send you an email privately as well so we can be in touch. Thank you -AB
With all this mental effort and ability to focus on the most simple and basic, I imagine you would also become very good at meditation.
I can only imagine how mentally exhausted you must be after a ‘workout’.
Yes the workouts can be mentally exhausting. And no I’m not good at meditation at all yet! But I think I just haven’t learned enough yet -AB
Meditation is one of those things that takes a lot of practice, but once you’ve mastered it, you realise how easy & beneficial it really is.
I came across your blog via my cousin, who’s studying to become a physical therapist. It took me 14 years, 3 declared majors, 8 years in the Army, 4 distinct career paths and beating cancer twice to find what I was passionate about. On Tuesday, I’ll be graduating with my Health Educator and Advanced Neuromuscular Therapist certifications (yay!) and I seriously LOVE what I do.
Anyway, the reason I’m leaving a comment: Don’t feel discouraged about the immense mount of brain power it takes to do things… it’s totally normal for the brain to have to focus when forming new habits. You may have heard this 1,000 times, but many people go through their daily lives subcortically… they drive to/from work the same way every day and eventually find themselves wondering how they got from one place to another during their drive because their cortex started thinking about other stuff while the subcortex (brainstem, cerebellum and mid-brain) took over. When there’s an SCI, it’s like being a baby all over again (except being a bit tougher and with more drive). You have to build these nerve paths over and over again, until the brain and body can maintain them (aka they become habits). Do achieve this requires a lot of integration of sensory input resulting in motor output, including regulation/control over each movement. Which brings me to the next thing I wanted to mention: Hanna Somatics and/or Feldenkrais Somatic Education. They’re safe, gentle and pain-free approach to integrating the mind and body. Why pain-free? When in pain, the communication associated with pain is blocked by the hindbrain making it harder to illicit neuromuscular change. For example, when we feel “uncomfortable” or a “bad pain.” But, “interesting” or “good pain” is allowed to pass through the hindbrain and is directed to the appropriate part of the sensory cortex by the midbrain. Historically, and in my current practice, this approach is used to help people with chronic pain by bringing awareness to the area of the body and starting with very small and gentle movements, retraining the brain that this previously painful movement is no longer painful or uncomfortable. You can check out either, or both, methods via these links: http://hannasomatics.com/index.php/ and http://www.feldenkrais.com/
I know its a long comment, but like I said, I’m super passionate about what I do and I hope this is interesting and/or beneficial to you or someone else who reads this. I KNOW that you will continue doing amazing in your recovery and achieve your goals because you have heart, determination and a winning/positive attitude.
Keep Inspiring!
I’m so glad you reached out to me and thanks for reading and sharing your thoughts. Your story seems truly amazing, and congrats on your accomplishments. If I’m not mistaken, you graduated yesterday? I’ve heard of Feldenkrais but this is the first time I’m hearing about Hanna Somatics. I will look into them again and see if they can apply to my recovery and who is near me that could work with me on this. Your explanation on pain makes sense and thankfully for me, I don’t have much pain. For me, it’s the matter of doing everything I can to get as much function back and that involves expending this massive mental effort. If you know of anyone who uses either of these methods and has specific experience with SCI, I would be interested in contacting them. I like that you likened this process to being a baby and relearning everything, as that’s something I feel everyday while I’m doing rehab and trying to get function back. Thanks again for your comments and I look forward to remaining in contact. -AB
Thank you for the congratulations; it’s nice being graduated 🙂
As far as practitioners who do Feldenkrais and Hanna Somatics, one of my instructors studied under both of them and he practices in Santa Cruz and in Los Gatos. Are you looking for someone closer to SF or would the South Bay area be ok?
The amazing thing about pain is that we don’t always feel it. It can present as a feeling of something being “not quite right” or “uncomfortable” or even ticklish – the pain response is anything that will cause the body to block something in an effort to fight/flight something the brain deems as dangerous. Some good NMT bodywork may be beneficial in conjunction with either of the two styles of somatics and your existing training and treatment to encourage the building of the nerve paths (while letting you relax a bit more). Let me know if you’re interested – there’s an incredible practitioner in the Fremont area that does house calls and I would highly recommend her.
Hope you’re enjoying the graduated feeling. 🙂 I’m always open to learn about new opportunities, wherever they may be. If it was something that I would take up on a consistent basis, it would have to be closer to my home in Berkeley but I’d love to learn of any specific recommendations and I can always look into them. Feel free to email me too if you would prefer: abayat491@gmail.com Thanks! -AB
I need to echo Arthur Wooten. You (and he) are my heros and I am rooting for you every day!
Here’s to heroes! Thanks 🙂 -AB
I follow you often. There’s no way I can understand your frustration. But I can recognize it in your eloquent writing. I’m 67 and facing some physical limitations but feeling like a pussy when I read your post. Thank you for a burst of reality.
I’m always happy to be able to provide perspective to anyone reading the blog. That’s one of the things I hope to achieve by writing it. Thanks for reading -AB
Reminds me of what you said before the 10k, Arash. Inspires me yet again. Keep on. I wish I knew more to say, but sometimes words seem useless.
Thanks Jess. Your words mean plenty to me. 🙂 -AB
Arash. I have followed you from your first post. I have made a few suggestions for your road to recovery. I teach and train folks with disabilities, Multiple Sclerosis, Stroke, MS, MD, Spina Bifida, Motor Vehicle Trauma, etc. I constantly task them to mentally cue their movements. I know I don’t do it as well as you have stated in this post. May I pass this post along to some of my colleges and clients? And please keep up this great dialogue. I have played and coached soccer to under 16 boys for many years. I am 75 years old, in great health, married for 50 years. I had a bad car accident when I was 17. I came out with some serious injury that took me quite a few years to overcome. I remember the tremendous mental effort it took to gain the use of my limbs. I am strong and energetic today. My goal for next year is to begin training, strength and conditioning to young gymnasts’.
Vince.
PS. I’ll bet you could start something like this today.
Vince, of course I remember your posts! I’ve read, and reread your comments many times and appreciate your suggestions and thoughts. You are absolutely welcome to share my blog with whomever you wish. I’m honored and flattered you’re doing that. It’s nice to know a bit more about you. Sounds like you have done quite well for yourself to move past that injury and create a good life for yourself. It’s funny you mention coaching soccer because that’s something I absolutely want to do as well. I was a soccer player my whole life and want to coach at some point, no matter what condition I’m in. Nice to hear from you as always my friend -AB
Hello, Arash. You give an enlightening description of your efforts to reconnect your “wiring”. I really think what you are so eloquent in describing can be of great benefit to others who have neurological damage. They can get a very clear picture of what might help them overcome their injuries. It is so exciting to read articles about the newly discovered plasticity of the nervous system and to read your posts that give proof of that. You have a gift for explaining in a way that makes us get a clear picture of what you are working on and accomplishing. I admire your grit and positive outlook. My thoughts are with you often,and I look forward to your next post.
Jacqueline
Very kind words Jacqueline. Thank you for your supportive and encouraging comments. I’m happy if what I write can help others understand something better than they already do. I too am excited about the developments in neuroplasticity and what people are accomplishing with their mental and physical efforts. Thanks for reading -AB