Bridging a damaged connection

“My legs are responding well to me today.”

“C’mon quads, you’ve got enough strength in you for another few squats!”

“Usually it’s my right hip that is stronger but today my left hip is doing pretty well.”

Feeling a distinct separation between the upper and lower bodies is inevitable in Spinal Cord Injury. Obviously, the function of my hips and pelvis and legs and feet is very different from the function in my arms and chest and upper body. I recently starting noticing that my language had reflected this separation as well, that I was frequently talking about my legs as if they were a disconnected part of my body.

This was the result of progress after all. I had only recently started to feel more of a connection with my lower body because I had finally started to gain tiny traces of movement and control over parts of my legs, especially my quads. But with more progress comes greater expectations, at least for me. Since I had spent the better part of the last two or three months working on reestablishing that damaged yet still present connection to my legs by doing squats (like the ones I shared in a previous post), practicing standing with little assistance and modifying my walking exercises, I had started to expect more out of my legs.

I have written before about my belief of the importance of language and the power that words can have on healing and recovery. I’ve been conscious and careful about what words I use to describe myself or my body but somehow it took me a while to realize that referring to my legs as “they” and saying that “they’re responding well or not well to me” was falling into this trap that I had tried so desperately to avoid.

There is no “they” because it’s all “me”. And just because the signals getting through to my lower body are a bit weak doesn’t mean that they are cut off from the rest of me. So I will do my best to avoid this language misstep especially since I should be celebrating the fact that my legs are doing so much better and responding much more than they used to.

I’m always a bit hesitant to share videos of progress as I don’t ever want to give the wrong impression and lead people to think that I’m more healed than I actually am, but I decided it’s worth sharing the following two videos of my walking progress.

The main thing to notice in these videos (other than those incredibly fashionable leg braces that support my ankles) is that I’m locking out my own legs. In other words, my knees are not being held in place by the therapist (like they used to) and I’m able to initiate, establish and maintain one knee locked and stable while the other leg takes a step with assistance.

In the second video it’s harder to see the action of the knees but you can still see that the therapist is only helping me to complete the step forward. I’m doing most of the rest and if you pay attention to my right foot, you’ll see that I actually take a few steps with no assistance at all on that foot! It’s definitely sloppy, and it’s still a long ways to go, but it’s a start. I’ll take it.

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56 thoughts on “Bridging a damaged connection

  1. amazing! the progress on the steps on your right leg is incredible, and your left doesn’t look far behind. i’ve read your blog for most of the past year, and you are an incredible inspiration. i suffered complete hemiparesis due to an acute ms exacerbation almost a year ago (i found your blog shortly after, sobbing post brain biopsy, half paralyzed in my hospital bed, watching the video of you in the exoskeleton) and it took me a long while to get back to walking without assistance. our situations are admittedly extremely different, but i identify somewhat with your journey forward. one of the things that helped me the most was my physical therapist telling me that frustration is the mechanism that triggers the neuroplasticity of our brains. it’s only when we run up against that wall and find the typical path no longer works that our brains are triggered to find another way.

    anyhow, thank you for sharing your story with the world – you were a big part of what inspired me to start my own blog about my recovery (msnorakb.tumblr.com) and i follow your updates with bated breath – i can’t wait to see you back on your feet! you’ve got this. you’re amazing. thank you.

    1. I’m so honored that I could have that impact and help you with your recovery. Thanks for sharing your story with me and I’m glad to hear you’re back to walking now. That’s fantastic! I’m also impressed that your PT actually believes in neuroplasticity and is encouraging of it. My PT’s gave up on me a LONG time ago. I don’t even think they could utter the word neuroplasticity for fear of liability or providing false hope or something. Glad you’re blogging too. Keep me posted and happy to be in touch! -AB

  2. Amazing progress, especially……that right foot. When you think of where you started after the SCI and where you are today, you can definitely get a sense that walking on your own is not just a fantasy – it’s a dream that hedges on that world between sleeping and being fully awake.

    It’s a sort of awareness like……someone’s in the room with you, but you can’t see or hear them. You JUST KNOW that there’s someone hiding (waiting to be found).

    1. Honestly, I always knew that person was in the room. It may have been a huge room, like football field size, but I knew they were there. There was no way that I would ever abandon that hope and dream of getting back on my feet. This is a good development but only a small step to get to where I want to be. Thanks for the support as always. -AB

  3. You are Awesome !!!!! I appreciate your sharing your life with us all. Thank you. Please know that I think about you daily in a positive, healing way of wondering. Awaiting your next email. Sincerely, Debbie

    Date: Wed, 30 Apr 2014 02:38:20 +0000 To: dapril84@hotmail.com

  4. Absolutely amazing Arash!! “Barbie” and Dougie follow all of your posts up here in Calgary!! You are a true inspiration and FYI…your strength gives me strength as I navigate something as insignificant as a herniated disc in my neck. Keep writing and we will keep reading 🙂

  5. That is amazing! I’m glad that you shared the videos, I’ve really enjoyed watching your progress – but I’m so proud of you for recognizing your language and adjusting it so that you send positive energy out and keep your body as a whole unit! Sending you good energy as you continue on your path!

    1. Yes I agree with Kate. As I age and face a body not as responsive as it used to be, I’ll have to keep your example in mind. We’re all so proud of you of your progress and persistence.
      Marilyn

  6. Really well done! This looks like great progress – as you say a start! And that can be built on and progress will keep being made. Thank you so much for sharing! All good be with you. 🙂

  7. Awesome progress! Writing, saying and thinking positive things does make such an impact. Your resilient energy expedites your progress and motivates others with similar challenges. It also reminds me to be positive in my own personal life goals. Thanks so much for taking time out of your schedule to share these intimate facts about your journey. Wishing you my best!

    1. Glad you’re still reading and that my writing could have a good impact on you. Hope you’re doing well -AB

  8. argh, cannot remember password or user name..just wanted to let you know it is SO good to see your progress..keep up the good work! i’d give anything for Xander to have this much utility..so far, nothing..whaaa

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