Another toe wiggle (finally)

If you’ve been following my recovery and reading my blog for a while, you may remember the post I wrote about waking up one morning and being able to wiggle my pinky toe with full control. This happened six months after my injury and at the time, I thought it heralded the process of most every muscle in my body slowly but consistently coming back under my full control. I was wrong…

In the two and a half years since, I have worked harder towards my recovery than anything else in my life. My day to day life was, and is still, 100% focused on recovery and on working towards my all important goal of getting back on my feet and walking. But despite all of that hard work, I didn’t regain function the way I was expecting. It was more than a little disheartening to regain full control of a body part, expect it to continue, and then tick off the days and weeks that went by without any further recovery of function. I’ve obviously made a huge amount of progress since then, which I don’t want to discount, but there was something so satisfying about regaining absolute control of any body part in my lower body that I didn’t experience since then… until now.

It seems that the pinky toe wanted a friend, that it became lonely and wanted a companion to dance along with it on my right foot. We’ve all been in that situation at a party, work event, or gathering where we don’t know anyone, where we long for companionship, where we hit the apex of desperation for someone, just anyone, to come along and give us a reprieve from our isolation. (Ok I admit that’s a little over dramatic but just humor me…).

Well the wait is over for my pinky toe.

A couple of weeks ago, I noticed something different in my right foot and when I looked down, I saw the second toe, the Co-Captain of the toes (yes that’s a Seinfeld reference, enjoy), wanting to join the movement train. Unlike the pinky though, moving the second toe was very subtle at first. I had to try really hard to make it move. But once that pathway of communication to the toe was open, all I had to do was hammer it over and over and over. And everyday after that, it became stronger to the point where now I have 95% control of it.

Ok so you may be thinking, “What is so important about a toe? How does that help with the goal of walking?” Well the answer is simple. If all of my recovery was supposed to stop after one or two years, like the doctors predicted, then the fact that I’ve regained control of any part of my lower body confirms how bogus that thinking is. More importantly, it shows that a new communication pathway has been established from my brain, that a signal that previously couldn’t get through is now able to make its way to its destination. And if that’s possible, three years after my injury, then anything is possible from here on out. New pathways can be established, new muscles can be innervated, new movements can occur and the hope of regaining more function is very much alive.

It may just be a toe but it’s a validation, however small, that everything I’m working on is leading to results, and that more recovery is going to come.

56 thoughts on “Another toe wiggle (finally)

  1. Great news Arash! Never give up…. Dr’s don’t know everything, they told me my Dads issues would never resolve and he would die with them… They were wrong. Keep it up!

  2. You will be continue to bring hope to many and will help the science with your determination and discoveries. What a wonderful news!!

  3. Arash — It’s now about one year and 5 months since my husband’s accident; he is ASIA Grade B incompleteat the C3 level and has since progressed to ASIA Grade C. All of his muscles are working incredibly, but too weak to do anything so he is still essentially a quadriplegic. But his recovery has also been haphazard. His biceps/feet were first to move then they disappeared. Then they came back, along with his fingers and hands. His legs were getting stronger, but now they are getting weaker. The ups and downs are hard to take, but a good friend reminds me “Progress is not linear”. Your blog inspires me to keep trying especially when we hit a wall (which is often). Thank you for the inspiration.

    • I’m glad I can help in any way. Yes progress is far from linear, even though we tend to think of things in such a linear way and always want to understand them as such. Tell your husband to keep up the good work and changes will come. Life is change, therefore the rest of our lives should have change and improvements in them. Good luck to you -AB

  4. You’ve left me reflecting once again, of all we take for granted. Thanks for that, and you know my household has plenty of reminders as it is. I’m also thinking of a friend that lost all her toes from frostbite on a Himalayan climb, yet she still scales peaks. You have what she has, impressive determination and perseverance. You also have one thing she lost with her toes, HOPE…as your toes, like you, know of no limits. Here’s to more dance partners in the days ahead!

  5. Wonderful news Arash! A toe movement really is the beginning of new things for you. You are right…a signal is getting through. The pathway has started. Things are awakening. Opportunities are on the horizon! So happy for you, and as always a huge hug for all the hard work you show day in and day out! XXXOOO Denise

  6. What fantastic news. Never give up hope for it’s hope that makes the world go round – in your case, the road to walking freely. If we listened to all the ‘experts’ and never allowed our expertise over our own body to emerge to it’s full potential (despite injury), we may as well stopping living.

    Experts are experts within their own small field of experience and education, not over others.

    Look at how modern technology, science & medicine has produced new innovations that were totally unheard of and beyond man’s wildest imagination in even the last 50 years, let alone 500 years.

    That little toe may be small, but the improvement is gigantic.

    • Yeah I agree and I say that all the time. The medical establishment seems to operate on the assumption that what they know at that moment is the truth and they don’t seem to allow enough room for ambiguity and unpredictability. So much has changed in the medical field in the last 50, 10, even 5 years! This reinforces that. -AB

  7. So sweet, Arash…it’s also really interesting how late in the game this happened (in terms of ‘swelling dying down’) and I wonder if all your work is shown in your successfully getting signals down to the end of a fascial line. Who can ever know with the nervous system, but that’s a great, concrete bit of connection.

    • It could be time to question the swelling thing too Theo. I’ve heard of some crazy stories of other SCI’s who recovered a ton of function years and years after. I don’t think we should stay loyal to this paradigm that the swelling may have stopped or slowed down and it’s only through fascial lines now. Lots to think about… -AB

  8. If those once sleeping nerves can be woken up the rest of them probably can too. By keeping faith in yourself you are making progress. You should have a superman shirt with a big P on it for Perserverance. Thanks for sharing with is.

  9. Arash- that rocks! Your hard work does show. We are finding new information and discoveries about the abilities of the nerve and facial system every day and every year. I hear almost daily about how the 2 year rule is wrong and how those who are working persistently in their recovery are breathing the odds. A toe is a big deal!

  10. Damn, boy. This is awesome.

    There is never a shadow of a doubt in my mind…our dreams are coming true. But not just because you have dared to dream them, because you work your fucking ass off.

    Thank you for sharing your gift and the display of your most impressive perseverance.

    You are an inspiration to so many. I can’t wait to manage your book tour.

    >

  11. Arash,
    I am so pleased with this latest development. I have so much respect for you and how you have approached your recovery. Despite my serious injuries from the near fatal car accident I was in in March, my lower body is fully functional. A millimeter made a huge difference for my spinal chord, despite a broken neck and back. I am devoting my life at this time to a full recovery of my upper body and brain. I lab to go back to USF in January for the spring semester. I have skit of work to do.
    Continue wiggling those toes and motivating so many of us out here. Leslie

  12. It’s good advice to anyone to not listen too much to the ‘establishment’ and think for ourselves! Often there s is cost to this, which means that those around us may not welcome the difference, I have experienced this many times in my life.
    Struggling with a serious issue of discrimination presently due to ‘difference’ which I do feel to get the most from life… we have to be prepared to just be ourselves and be different.

    To a novice and someone who admittedly greatly struggle with his own issues “we all have our battles” I am struggling to comprehend fully your progress… and I am evidently not alone in this as you have defied the docs predictions. However please, you stood up to propose to your wonderful fiancé… girlfriend, although I heartened by your progress, and particularly I feel the message of ‘we must do what “we” think is right’ I had not realised you struggled with still use of your lower body to the same extent?

    The most important thing is I’ve taken something very positive from this.

    • Yeah it’s hard to explain about the standing. On the one hand, when I stand up, I have some control of some muscles in my legs, enough to stand after all, but at other times I don’t. The toe is a different story. It’s movement and control in any position. Which is why I get excited about it. -AB

      • Thanks… you see we are very ignorant of this. Well you are aware of my experiences, and people are here too. Often scares people.

        My email is seanwhite06@aol.com if there’s a chance you might contact myself please?

        There is a very important question I feel you may be able to assist with more than any other.

        It is something I have been personally wrestling with.

  13. Interesting too huh, that the whole structure of the body can not support itself without the help of the “lowly toes”. My man it’s been a while but I truly do appreciate your patience and persistence. It’s the stuff of legends…

    side note: I couldn’t help but think about the Kill Bill scene “wiggle your big toe…the hard part’s over, now let’s get these other piggies wiggling”

  14. That is utterly fantastic, Arash! I am so pleased for you. The medics only work on averages… nothing is impossible, even if it takes longer than our hopes would have it do 🙂

  15. Congratulations, Arash. I am so very happy to hear this news and the regenerated excitement in your “voice.” Your spirit is a force to reckon with the challenges you face every day. It is such a humbling reminder of mindfulness, and gratitude, and the power of believing in the truths that lie inside. I look forward to hearing about the next toe.

    • Thank you so much for the support. I’m happy to have found some excitement in this too. It’s a good achievement and I’m looking forward to the next -AB

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