Defining myself

How do we define ourselves? By our occupations and interests? By our fundamental qualities and instincts? By the people around us and the communities that we build? Or by the events and occurrences that happen to us whether they’re in our control or not? Why am I even asking this question?

I think about this often. How I define myself is crucial to my overall attitude, outlook, and potential for recovery. As I move forward with my rehab, through various achievements and struggles, and as I encounter the many others who are somehow associated with this injury, the question I think about most often is this:

Am I defined by my injury or am I defining my injury?

One of the first posts I wrote on this blog had to do with the semantics and terminology used for those with Spinal Cord Injury (SCI), specifically the use of words like “quadriplegic  or paraplegic.” I explained how much I hated these terms and now I have a better understanding of why I still get frustrated whenever I hear them. It has to do with how I want to define myself after this injury.

When someone has cancer or HIV or Multiple Sclerosis or a stroke or a hip replacement or a number of other medical issues, they don’t start calling themselves something related to that affliction. There is no “hi I’m a cancerplegic or stroke-a-plegic” equivalent with these other situations. People instead say, I have cancer or I’ve had a stroke or I have a bad hip or whatever it may be. They are stating their medical condition as something that they have, instead of something that they are. As challenging as their respective struggles may be, they are not defining themselves by their injury.

A person may choose to define themselves in whatever way they want, as a teacher or construction worker or engineer, as a father or uncle or a Stanford alum or a tennis player or musician…. but I don’t believe that a medical condition has to be a part of that. Which brings me back to my continued frustration with SCI semantics. Why do people immediately want to define those with SCI as a quadriplegic or paraplegic? Why do most people so quickly accept this terminology and start using it?

There is a difference between saying that you suffer from quadriplegia instead of saying you are a quadriplegic. I take less issue with the former term but I refuse to use the latter. I know it may seem stubborn and trivial for me to be harping on these small differences in the way we talk, but I think it makes a world of difference.

Words matter. I truly believe that how we talk about something, specifically what words we use, has a huge impact on what we expect from it. If you repeatedly tell yourself that you’re going to have fun on your weekend trip, it means that’s what you expect, and I think it’s more likely that you will actually have fun. Conversely, if you tell yourself that something is negative and bad and you keep using those words to describe a situation (even if you’re using those words privately and not out loud), chances are that situation will prove to be negative. This relates to what is commonly known as the law of attraction. What you put out  to the world, is closely related to what you get from it.

How do I expect myself to get better and recover if I define myself by my injury? Why is Spinal Cord Injury unique from other medical problems in this regard? Is the common thinking that this injury is so debilitating and insurmountable that from day one, we need to start defining people with these funny sounding words?

I am perfectly comfortable stating that I have a Spinal Cord Injury. This is honest and accurate. But the moment I start using silly words to define myself, I do an injustice to my recovery. If you have a similar injury and are motivated and serious about getting back on your feet, I would suggest you avoid using those words and think about how you want to define yourself. I think we can all benefit from taking a moment to think about what defines us, what doesn’t, and why it matters.

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37 thoughts on “Defining myself

  1. very accurate post! We are or become what we speak out! Why not speak positive and be open rather than negative and closed off to the possibilities that lie ahead!

  2. So very true! What you say, what you think – you put that out there and that is what comes back to you. We all should focus on only putting out the good so that all we receive back is good. No one should let others define us – they aren’t living my life, they don’t get to put labels on me. And when they do, I have to remember, their labels are not my life. I’m so proud of you for not letting your injury define you! Sending you good energy for continued healing!

  3. Bravo, Arash!
    As you may remember, my son ‘is’ brain injured…
    he has thrown that definition out, is to be married shortly and just announced he’s moving to Singapore…
    To hell with letting semantics, a medical condition or even the medical profession limit lives with definitions.. you define yourSelf.
    In Light,
    Sue

  4. Labels begin from day one. They are useless because then never DEFINE the person. And, you, my friend defy any definition. You are so special. You are my hero. I await your full recovery!

  5. Dear Arash,

    After seeing the Al jazeera report and reading your page, I came to believe that you were a confident and determined young man, who has a nice way with words and happens to have suffered SCI.

    I was not aware that the terms quadriplegia, paraplegia or diplegia were too commonly used by the general public! At least, not so much in the UK! I use to practice Orthotics and Prosthetics and we used this terminology as part of writing down a ‘patients history’ for the Sake of clarity in follow ups!

    You are very right in not wanting to be hindered by irrelevant terminology!

    Best of luck to you,
    Pouneh

    1. Hi Pouneh. I totally understand the medical need to use that terminology. It’s easy and quick. It’s just for labeling injured people like this that I don’t like this terminology. Glad you read my blog and thanks for the comment -AB

  6. As an occupational therapy student, you may be happy to hear that our professors emphasize “person first” language. In your case, you are a person who has paraplegia. Hopefully other students are learning the same language skills because… Words do matter!!
    Thank you for sharing your journey.

  7. Excellent post, Arash. I don’t like the words paraplegic or quadriplegic either. It implies that you can’t do anything much physically and that you may not even be able to use your brain 100%.

    I find people with serious injuries or illness seem to have enormous reserves of mental strength in particular. The often ‘think outside the box’, because they’ve had to adapt and learn how to live life and survive in a different way.

    Before I had to quit work due to chronic ill health & pain, I had become my illness, it consumed me – now I am no longer my illness, I am Me. I have an identity again.

    If people ask now, I say I’m a photographer (who happens to be retired due to chronic health issues) and since I take my DSLR & a couple of lenses nearly everywhere when I go outdoors, people actuality think I’m a ‘professional photographer’ (which I kind of rather like).

    1. That’s great to hear. I’m happy that you’ve refound your identity and are embracing that instead of the definition imposed on you. Thanks as always for your comments -AB

  8. I completely agree with you. It’s not who you are, it’s a part of what you are. A close friend often has a daughter with achondroplasia, (a form of dwarfism) and she, being only 8 years old doesn’t let that define who she is. I have learned so much from her because of that. I can only imagine what it must be like to have type of disability or illness, and I commend you for not letting it be what defines you as a person. I started following your blog after a friend often posted your story on Facebook. I watched the video of you trying the exoskeleton and thought, wow, here is a man with fire and determination in his spirit. You inspire me to be a better person! Keep up the positive energy!!

  9. I love this post! I had a teacher in grad school point this out once, and it truly changed the way I look at the world. I have a nephew who *has* autism. Calling him “autistic” is not the same thing. Like you said, it matters. Calling him autistic is negative. It sets up limits and puts him in a box of what he can and can’t do. That is wrong. Yes, there are some physical and mental limitations with someone who has autism, but they are not nearly what people expect.

    I truly cannot comprehend what it must feel like to be in your situation, so I will not try. However, I find your story and your message very uplifting. Although I try not to label people with the words I use, until I read this post I must admit that I had not carried over that thinking to someone with paraplegia or quadriplegia. I will do better. Thank you for pointing this out and for making us all better in the process!

    I’ll keep reading your posts for all the positivity that swarms off of them!

    1. Thanks for reading. You’re absolutely right about the imposing of limits on your nephew. Let’s let that person define themselves. He will figure out what he is capable to do or not, instead of conforming to definitions from the medical establishment. -AB

  10. Arash I so agree… we are not the “condition” that we are faced with … NO WAY! We are strong and determined warriors on a path to FULL RECOVERY… I always remind myself of this… the way we frame our thoughts – and use words is very powerful (in a good or not so good way) so this post is truly wonderful — helping everyone understand the energies that words can have… they need to teach this course in medical school!! I am on semi-leave my friend – time to meet with the surgeons again and see what the consensus is for my surgical options (or lack of) … I will remember your wisdom here… and promise to continue reading and posting when I can too. In the meantime – so much love your way ~ x Robyn

    1. You’re right, words do have their own energies. I hope you’re choosing your words well as you encounter these surgeons and that you hear of uplifting opportunities for yourself. I’m always sending much love and positive spirits your way. Looking forward to reading your posts and staying in touch when you’re back in action. Much love -AB

  11. Dear Arash, I am reading an amazing book at the moment called The Power of Now by Eckhart Tolle. He really goes in depth into this issue that you raise – our identity is only really a label and it changes throughout our lives and in death what was the point of having a strong identity – it has to be left behind. I would love you to read the book – I am 70% through it at the moment (on Kindle) and it is completely re-shaping the way I think of myself and life. He describes portals (means) of connecting to energy which is at the source of all of us and connects us all – so we are actually vast not just limited to this physical body and mind. For the first time I have read this point – he explains that our body is itself a portal and by focussing on it you can come to the inner energy body – I have tried it and it worked and I will be doing more – it was so peaceful and energising. I feel it would help you energise parts of you which you are not feeling now and so help healing. Just a suggestion – I would recommend anyone to read his book. My very best wishes,
    Melanie

    1. Thanks for sharing Melanie. I’ve actually listened to his book on audiobook and very much enjoyed it as well. Very inspiring and thought provoking. Thanks for thinking of me. Stay in touch -AB

  12. Hello Arash. I completely agree with your assessment and see this a lot in regards to diabetes. Many people with diabetes are referred to as “diabetic” and sometimes use that label themselves. I am working to change that. We are people first and foremost. I am sending you lots of positive energy from the Pacific NW, and will enjoy following your blog and hearing of your continued strength and recovery. Wishing you all the best. Peace, Love and Namaste.

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