Sharing what inspires me

I’ve had the great fortune of being told that my blog is inspiring to people. I started this blog simply as a means of communicating the challenges and triumphs of my recovery from this devastating injury in an efficient and interesting way. So whenever someone tells me that my words are inspiring, I’m honored, flattered and overwhelmed with gratitude. In that same spirit, I want to take a moment and share some of the resources, stories, and people out there who have inspired me throughout my journey of recovery.

One of the initial (and perpetual) challenges of Spinal Cord Injury is the lack of information and resources. In the hospital, they gave me a book that probably every person with a SCI receives upon leaving their inpatient rehab facility. The front cover has a smiling guy sitting in his wheelchair with an almost sadistically grinning child in his lap and alongside him is an attractive woman and a creepily friendly-looking German Shepherd, with the title: “Yes, you can! A guide to self-care for persons with Spinal Cord Injury.”

Instead of sharing the inspirational stories of others with SCI who have recovered, of those who have challenged their condition and come out victorious, they want you to accept your fate as a “disabled” person and start getting used to your “new” life. Complete with a smiling child and a menacing dog.

That’s exactly why I decided to create a new page on my blog entitled, “Inspiration & SCI Resources.” After over a year of living with this injury and countless hours of research, reading and internet searches, I have collected quite a bit of information on SCI and the people it has affected.

Now I want to share those stories that have most inspired me, those people who I’ve learned about who motivate me to keep fighting and to keep working hard towards my goal. We live in a society that emphasizes individuality and independence, but the reality is that none of us can achieve our objectives without the help or presence of others. I feel like it’s essential for me to recognize the inspirational stories that have most helped me through my recovery thus far, and hopefully serve as a resource for anyone looking for either an inspirational story or more information on SCI.

On a final and slightly unrelated note, my friends recently organized a fundraising event in which I gave a speech about the importance of words and why specific words matter so much to my recovery, and thanks to a generous friend who photographed and recorded the whole event, we have a video of the talk which I’d like to share here. It’s more than a couple minutes long so I don’t expect everyone to watch, but if you do and want to share your thoughts, you know how to find me.

http://steinbergimagery.info/arash-bayatmakou-words-matter/

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7 thoughts on “Sharing what inspires me

  1. What a great idea! Love that you are open and willing to share your resources and sites you have found helpful to others, so now you can inspire and help someone grow by providing the additional resources to them. How amazing! Sending you good energy as you continue forward on your journey!

  2. I have been reading your blog for a while but have refrained from commenting. I never read any sort of critical comments and I suppose this is a good thing. The first few years post SCI are in words of a man portrayed in the film Murderball “a real mind fuck”. I know this all too well because I was paralyzed 35 years ago. Rehab back then was long, arduous and primitive. My rehab was radically different from what you have experienced. This was the pre ADA era and people with a disability had no civil rights. In the absence of civil rights I was taught an extreme form of self sufficiency that has served me well. No one talked about walking again or the need to be inspired by others. We simply moved on with life and found the primary problem was not paralysis but a society that refused to accommodate our difference. Thus the people I know advocated for new laws and forced our way into school, universities, planes, buses, trains, etc. It was not easy and I am gratified to know people such as yourself new to disability do not encounter the same prejudice I did. This is a long way of suggesting you might want to rethink the “inspirational” rhetoric. Disability history is fascinating and you really should read the work of scholars such as Paul Longmore, Robert F. Murphy and others. I would also suggest you read about Ed Roberts too. Here I think you will find “inspiration” in the form of a vibrant disability rights movement you will never be exposed to in rehab culture. You could also read my blog Bad Cripple. I am an anthropologist by trade (PhD Columbia 1992) and now work within the fields of bioethics and disability studies.

    1. Thanks for reading and for sharing your thoughts. You’re absolutely right that the advances we’ve made as a society in terms of recognizing people with disabilities and their rights is a huge change. I can only imagine how different things were when you got injured and I know that we’ve come a long way. I appreciate your comment but I don’t think I’m going to rethink what inspires me. I’m inspired by what I’m inspired by and I don’t think that’s up to anyone else to decide. I share what I share merely as a way of expressing those things that are inspiring to me, not to say that they should be inspiring to anyone else. I appreciate and acknowledge the work of thinkers and people who have advanced the rights of people with disabilities and perhaps I don’t know as much about them as I should, and if and when I do find something else inspiring, I will share that too. I appreciate you reading the blog and thanks for the comment. Best to you -AB

      1. Thanks for your polite reply. Let me rephrase my suggestion r.e inspiration. You of course have the right to be inspired by whoever moves you. I did not mean to question this. I was trying to suggest that you become more aware of the larger history of people with a disability. It might put your experiences in social context and affect who inspires you. Unlike you and many others, I do not see people that post SCI put great effort into walking. Instead, I was inspired by my mentor at Columbia Robert Murphy. The other reason I make this suggestion is because I am sure it will never come up in a rehab setting. In fact disability history and disability studies scholarship is not discussed until one gets to university. Lastly, I also make the suggestion as it appears you frame inspiration firmly within a medical of disability. This makes sense. You are dealing with significant bodily change. The point here is be open to a social model of disability somewhere down the road as in the long run the real obstacles are social rather than physical. This is hard to imagine now I am sure. Good luck and best wishes.

      2. I understand better what you mean. Thanks for the suggestions. I’ll keep these ideas in mind as I move forward with my recovery and continue to educate myself. Thanks for your well wishes and I send you the best of mine too. Please stay in touch -AB

  3. That is for sure true that they say:, “1, maybe 2 years.” I’m gathering this is standard for many conditions of the nervous system. Head injuries, the prognosis is similar. (And keep up the spunk and rebellious attitude, it gives your story so much life and you and WE benefit.) Hm….back to what I mean. That statement is based on the past, perhaps some basic math to produce a statistic.

    What heals people is like the universe from a physics standpoint: there are more dimensions than meet the eye. Each person has vastly different circumstances. Our own stories. Not to mention our unique biochemistry. That we know so little about the world of neuroscience and how billions of tiny neurons make us who we are in this world.

    I guess what I’m trying to say is, with so many variables and factors to healing, it is quite difficult to calculate scientifically. So I say: keep moving. For all obstacles are matchless mysteries. In general, people should hear the message: be empowered, be life, be what matters to you. And with that, step into an uncertain future with direction and faith.

    1. Totally agree with you. People always want to document and calculate things scientifically, because I think as humans, we want to try to know the answer to everything and when we don’t, we want to get as close to knowing as people and speak about it confidently. But I don’t think that works all the time. There are too many factors that are not considered when people give prognoses and grandiose statements about one’s recovery potential. Thanks for the comments. -AB

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