A six-month reflection

It has now been exactly six months since I suffered my Spinal Cord Injury. Six months in which everything I knew and did in my life dramatically changed, six months in which an outstanding community from near and far came to support me consistently and with arms wide open. I’m not sure exactly how I feel about this moment.

On the one hand it feels like an absolute eternity that I’ve had to live with a severe disability, unable to walk, unable to work, unable to do all the activities that contributed greatly to my mental and physical well-being, and battling everyday with the uncertainties of my injury. No one tells me if and when I will recover or how much. Doctors, physical therapists and medical practitioners seem so obsessed with liability, lawsuits and the fear of giving me false hope that they barely show excitement at my accomplishments. Of course for me, any major development (i.e. a wiggling toe) is a tiny step closer to my ultimate goal of full recovery, but all I hear from the medical establishment is to accept the current situation and “become as independent as possible”. They don’t push me to challenge my limits or boundaries, they don’t encourage me to take part in other therapies and treatments, they don’t encourage me to keep hope alive; I’ve done all this through my own will and volition. It definitely feels like I’m a lone fish swimming upstream against a relentless current that says to accept things the way they are.

On the other hand, in some ways it does feel like time has passed rather quickly. I’ve found a rhythm and schedule that work for me. No less than six days a week, I’m driving to different parts of the Bay Area to access the therapies and treatments that have contributed so much to my improvement thus far, and filled in the enormous hole that my medical insurance (and their approach) has left for me. I’m shocked by how quickly summer changed to fall and now to winter and the new year. I’m astonished that I’ve already been through so many mornings having woken up and been angry at not being able to jump out of bed and onto my feet. Or how many evenings I’ve endured with a sore butt from sitting in a chair all day.

I have purposely set my goals high, because I know that compromising how I set my goals compromises my potential accomplishments. So I will stick with my goal from the beginning, that on my birthday this August (over 13 months after my accident), I will be on my feet and walking. Everyday can and does often feel like a struggle, but if I’ve made it six months already and improved so much, I can only hope to exceed my expectations for the next six months.

46 thoughts on “A six-month reflection

  1. This is fantastic to read today Arash. Your will is what you have and it is what will carry you over this enormous life obstacle. Your future is bright because the work you are doing will give you an expertise and advantage over all of us who take our mobility enormously for granted. You were briefly in my dream last night and you were ambulatory. This was not about the past, this was down the road. Your courage and your consistent capacity to share it here gives me pause and hope.

    • Love that I was in that dream! Hope to make that a reality and celebrate with you soon. I’ll keep pushing my will everyday, with the help of support of friends like you. Thank you Michael.

  2. Wow Arash,
    It’s not that you will recover completely, it’s that you are in the midst of it!
    You are on your way, everyday, even when you cannot see it.
    The natural state of the body is to heal and be well.
    Keep on keeping on, Arash.
    You are such a source of inspiration for so many.
    Thank you for that!
    SC

    • Love your point about the natural state of the body and I completely agree. I think not enough credit is given to the body’s desire to heal itself, and instead conventional medical practitioners take an all-too interventionist approach. I will certainly keep keeping on. Thank you for the continued support Sally! -AB

  3. “…but all I hear from the medical establishment is to accept the current situation and “become as independent as possible”. They don’t push me to challenge my limits or boundaries, they don’t encourage me to take part in other therapies and treatments, they don’t encourage me to keep hope alive; I’ve done all this through my own will and volition. It definitely feels like I’m a lone fish swimming upstream against a relentless current that says to accept things the way they are.”

    Arash — this statement hit me hard… I know ~ seems off that the medical community – the “healers” are the least encouraging of all lots of the time. Ok ~ so now that you have this concept down…. reframe it in your mind. It is “their own” fears and insecurities that keeps them from cheering you on hard. Seek encouragement from other sources if you must — friends, family, blog, even a great ‘life couch’ type counselor could be an amazing resource. You are not a lone fish – and you will go with the flow (not fight the current) ~ don’t let anyone break your spirit which is spectacular, and can be felt right through this computer screen. Keep those dreams of yours right in the forefront my friend – you are doing great — every little milestone you reach is another ‘gold metal’ ~ Love and Blessings ~ Robyn

    • Great point Robyn. You’re absolutely right that they’re stuck in their own fears and insecurities. In fact, I think one of the reasons why my physical therapist didn’t show that much excitement at my pinky toe wiggling was because she knows she did very little to bring that about, since all my therapy is coming from those other sources outside of the medical establishment. And you’re right, I’m certainly not alone as I have the support of many (like you!) and for that I’m grateful. Much love to you -AB

  4. Arash – I just discovered you and your journey from a tweet sent out by Robyn Lee. I just read everything…and wow…you are such an inspiration. So very sorry for your challenge but obviously, if anyone is up to “defying” what the traditional practitioners are saying, it’s you. I too had an event that happened in to me 2005, robbing me of my physical life. Biking, skiing, dancing! and even driving are “currently” out of the equations. But I’m determined to get better. But your situation puts mine in perspective and gives me encouragement. Keep up your beautiful spirit and you will be walking again. And running and climbing and biking and…
    Wishing you a healthy and balanced New Year!

    • Thanks Arthur. I’m sorry to hear of your struggles but I hope you’re staying motivated and positive too. And if you ever want to swap stories and perspective, I’m here. I look forward to doing all those things in the near future. Best to you -AB

      • And it goes both ways, Arash – swapping stories – I’m hear to listen. I’ve written a book about my traumatic brain injury which resulted in bilateral vestibular disease with oscillopsia. Would love to send you a copy if you’re up for reading it. My goal was to educate and inspire and if one person out there read it who is suffering from the same symptoms and discovered they were not alone, then my job was done. And the kind words coming in from all over the world saying that somehow I told “their” story, makes it all so rewarding and therefore inspiring for me, to keep on, keeping on, myself. alwooten411@yahoo.com

  5. I know the road to recovery (wherever that ends) can be difficult at times. What helped me was to form a solid team around me. One that helps you reach goals while staying sober enough to stay realistic.

    Start to do some other things in your life besides the recovery. If you focus too much on this, and it isn’t what you expected you may enter a deep depression, and you’ll be farther away from home. This isn’t some movie with an necesarily obligated happy ending. This ain’t like the movies hit me a couple of years in. Write your own story.

    The road to recovery is one of up and downs.

    It can be great to write things off you, but don’t forget to enjoy life. Life with a disability is not a lesser life. Just different that’s all. It sucks sometimes , on the other hand I live life more than I ever did. It takes time, but you will find peace in this eventually.
    You won’t even know better, really, it’s just the way you are.

    Maybe at some point publicize what worked for you, and then send this around the medical world, this way they can learn.

    Keep the faith, and wishing you much strength with the recovery process.
    Oh yeah, watching Rocky movies and other inspirational things can definitely help with training.

    • Thanks for your thoughts and suggestions. My intention isn’t to be too hard on medical people and you’re right, they’re just doing their jobs in a very broken system. I like your suggestion of just living life and I’m trying to do that as much as possible despite the injury. I’ll be happy to publicize and share my recovery with others in the medical world with the hopes of making a change in how they approach treatment for SCI. Thanks for reading and best to you -AB

  6. P.s.

    Don’t be too hard om medical people. They’re people too.
    If you think can do better then go ahead and do it. Then show them how it can be done differently. It may take decades, have the patience.

    This way the next person, can take it one little step further, and won’t have to go through the same thing.

    It’s a goal you can focus on.

    Keep going strong.

    Peace.

  7. Arash – wow! Keep the faith! Keep wiggling them visualisations! Believe in them! See yourself walking, the medics, therapists will be scared for you! I know I was a clinician, laugh as much as you can! Have you made contact with the British women who had a spinal injury and wrote a regular article in the times?
    Defy expectations…….x

      • She is an inspiration – connect! Here are her details and some background to put connection fire in your belly!
        Her name is Melanie Reid, in 2010 she broke her back and neck falling from a horse in 2010. Her prognosis was was grim! She writes a column ( irony, yes) in The Times. You can read her story so far from the 24 April 2010 till Jan 2013 on The Times website. Contact her! You could even start a transatlantic …letters across the pond! Go for it AB, BIG LURVE – the girls at divine secrets!

  8. dear Arash~ you have so inspired me. i found you thru lovely Robyn of the Healing Lens and thus, many more will find you. Your story is one of heroism, humor and an unabashed will to make it work, no matter what the idiots in the medical profession profess to know. you will show them what they do NOT know, of that i am sure.

    i look forward to the day you will walk again withOUT anybody’s help and in the meantime, i will cheer you on your journey. And your little pinky toe video was wonderful. as tears rolled down my cheeks, i knew for sure, you will beat whatever stands in your way to get what you deserve and so shall have.

    and with dr. zhu [whom i've had treatment with for mental illness] as your doctor, you cannot miss. he won’t give up til he either kills you with his concoctions, bleeds you dry or fixes you up. the end.

    peace, faith and healing to you, my friend,
    linda

  9. Someone I know of had a trampoline accident in the seventies and was paralyzed – his recovery began when he could wiggle his toe. He is now fully recovered and is a doctor and from what I hear has a great life.

  10. Two and a half years ago I moved one of my book cases, fell over a chair in the labour, broke my head, landed up in a so-called coma for 8 weeks. My only next of kin was told I had a 3% (three percent!) chance of living, and, if I did live, a 10 % chance of living independently. When I ‘woke’, I was interested in none of that – nobody had asked my permission for that prognosis. I ‘was’ a cyclist, a gardener, a writer, a piano player. These days I walk, I cycle 90 minutes each day on an indoors bike, I vicariously do my gardening in anticipation of regaining fully my balance, I play an antique piano, and I write when I can put the churning lava of my indignance to my side to make place for softer thoughts. Moral (I do not like that notion): Pay no heed to what others proscribe and prescribe. Instead, survive. To do so well.

  11. Hi Arash – I just found your blog through the freshly pressed email from wordpress.

    Your story is a reminder of how our lives can change in an instant and that we need to make the most of every moment we have.

    I am so sorry that this has happened to you but I feel in my heart that you will make the recovery that you want. I will follow you as you go and cheer your every achievement on the way.

    Keep dreaming, keep working and keep that amazing spirit of yours.

    • Very kind words, thank you. Yes my entire life (and that of those most close to me) changed in that instant when I fell. I too hope for the full recovery that I so badly want. I’ll keep dreaming and working hard. I’m grateful for your support -AB

  12. Your mental strength is amazing and it will see you back on your feet this year. You are an inspiration to anyone facing a traumatic and life changing experience and proof that we should never give up. Sending you positivity and continued strength on your journey.

  13. Your story is amazing and extremely inspirational. Your cover picture says it all, but your motivation, determination and story is something worthy to read. Appreciate your honesty and what a great attitude to have.

  14. Arash, I learned recently of your fall after your New Year’s resolution post on FB. I was so sorry to hear about it, but I am so impressed and inspired by the way you are handling your recovery. I believe you will walk again!

    That being said, I was wondering if there is a good address to send you something… please let me know here or email me at stephanie@to-goware.com.

    Sending all the very best and keep it going!

    Stephanie

  15. Hi Arash! Just found your blog this morning and what an inspiration. As an OT / Vocational rehab Consultant Ihave worked in UK with spinal injuries and those who succeed have the strength of ambition/ drive that you have. Sure there must be days when you feel different but this blog will serve to remind you that even the smallest wiggly toe is a big step in recovery. Keep going and looking forward to your updates!

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