“As independent as possible…”

If there is one phrase I’ve heard entirely too often during my recovery it’s, “We have to get you to be as independent as possible.” This may not sound so bad at first. Why wouldn’t I want to be independent? Is there something wrong with taking a situation in which almost everything I do involves help from someone else and empowering me to do things more independently?

Now I have to provide some context so you don’t think I’m just being hyper sensitive or overly scrutinizing of a seemingly simple statement. The entire seven weeks I was in the hospital I would hear nurses, doctors and therapists say this to me, usually as a way to motivate me – as if I needed extra motivation – to learn a particular skill or maneuver. Just days after suffering the most horrendous injury that debilitated me to an unthinkable extent, I was being told and retold that my “independence” (can you sense my sarcasm??) was hinged on the need to move my body a certain way or learn a seemingly impossible task. For example, before I could achieve any basic efficiency with my hands (unable to hold a pen or cup) I was being told, almost threatened, that I should try really really hard to do a particular thing because I had to be “as independent as possible”.

On my first day of rehab, just ten days after my injury, I was asked if I had thought about what my goals were for rehabilitation. I simply responded, “I want to walk.” Once I saw the quizzical expression on the practitioner’s face, I followed up with, “Look I understand this is going to be a long road but I can’t think of anything else that would motivate me so tell me what I need to do to get me closer to my goal of walking.” More confusion on his face. It was as if I was speaking Mongolian or stating that I wanted to flap my arms, spin around three times and fly to Saturn. I think they expected me to say that my goals were something like wanting to sit up without falling over or feeding myself or rolling over in bed or strengthening my arms enough to lift my body from wheelchair to bed. The truth is I badly wanted to do all of those things! But here’s where it gets tricky, and where I start to get frustrated with the way Spinal Cord Injury (SCI) is treated in our medical system.

I learned that until 10-15 years ago, someone who suffered a SCI would stay in rehab for months at a time. But now, insurance companies recognize the exorbitant cost of keeping someone in the hospital that long, not to mention the hours of physical and occupational therapy involved, and the model has changed dramatically. Most patients in this well-known rehab facility I was in (treating SCI, stroke, brain injury, and other serious neurological injuries) averaged 2-3 weeks in rehab. I was one of the “luckier” patients because I stayed for five weeks. In fact, my discharge date from rehab was determined just three days after I arrived! Let me recap: just days removed from seven hours of spinal surgery, after arriving in an ambulance with towels and tape strapping my head down and protecting my badly damaged neck, unable to move most of my body or perform everyday functions, the medical insurance system had the magical ability to set a date to get me out of the hospital. Now it all makes sense…

Becoming “as independent as possible” had little to do with my goals or long-term recovery. Rehab was meant to be a boot camp of sorts for me to obtain the minimal strength and capabilities to go home and not be a swaying, falling, broken, soaking wet mess of humanity. In a country abundant with bogus lawsuits and fervent medical malpractice scandals, the priority of my medical insurance wasn’t to heal my body to its greatest capacity – they had experienced, knowledgable therapists and state of the art equipment after all – it was to protect their legal liability and preventing me from saying that they didn’t teach me how to move from my wheelchair or wipe my own ass.

Moreover, rehab isn’t about rehabilitating the body to what is realistic or what one may desire. It is about functionality. Everything they taught me was with the purpose of how I could function when I wasn’t within the safe, happy walls of the hospital. Every time I brought up the idea of a full recovery, I was given the same quizzical look I saw that first day of rehab. Each time I mentioned that I was going to walk, I was politely dismissed and told to focus on my task at hand. Since I left the hospital, I have been given a grand total of ONE hour a week of physical therapy. Oh wait, actually it’s technically 45 minutes but sometimes she does me the favor of staying with me for an entire 59.824 minutes before scurrying off. And each time I see her the focus continues to be on function – not rehabilitation – and I’m continuously told to learn to be (you guessed it) “as independent as possible…”

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36 thoughts on ““As independent as possible…”

  1. It sounds like this system is as broken as a lot of other system’s I deal with. Whatever voyage we each are on, overcoming our own obstacles, dealing with systems, there seems to always be that greater force that keeps us feeling like we are swimming against the tide. People seem to be unable and sometimes unwilling to look outside their boxes. Your PT for example, she’s unfortunately most likely been groomed to check a square and move on to the next patient. My guess is that over time, she’s become immune to the fuel that probably initially ignited her desire to enter this career path. Folks like her are knocked down by the greater force of the machine they work for so often they start to lose sight of what it’s really about, that there are faces, lives, feelings attached to these words. You want to walk. Is that as insane of a goal as their looks warrant? I think not. Life is worthy of big picture stuff. You wiggled that pinky toe, I know you are giving your all to this goal, keep fighting. Just speaking up like this, can bring change and I think you’re just the man to start it.

  2. Arash – I understand your frustrations. After my traumatic brain injury which has left me with severe bilateral vestibular disease with oscillopsia, I was sent to the Rusk Institute immediately for rehab – and after one visit, I was told by my Blue Cross Blue Shield insurance company that they would not honor the treatments stating: they are questionable, not proven to work, and are invalid. This was all insanity for there are a plethora of studies showing how much rehab works for people like myself who have lost all sense of balance. So, out of my own pocket (and he was generous and understanding and charged me less) the rehab physical therapist came to my house (hush, hush) and taught me the tools I needed, especially in the early months. Meanwhile, the traditional practitioners were preaching to me continuously: we have to get you ” as independent as possible.” Be strong, my friend.

  3. That’s appalling that you have only been given 1 hour of therapy since you left the hospital.
    To me, that’s like giving up on you, before you’ve even had a chance to recover from the surgery.

    Keep up your goals and imagine the unimaginable. Great healing comes about through being positive, motivated and ‘thinking outside the square’.

    In this case, the ‘square’ is the Health system.

    I hope you can find an affordable way to challenge the Health system and achieve your goal.

  4. My son after his TBI was left with no therapy after the first few months, written off by the system as being unlikely to ever be independent… or even functional and therefore not worth wasting resources on. We didn’t agree with that. Nor did we agree with the substitution instead of restitution offered in rehab.

    We invented our own therapies… with everything from empty ice cream cartons to duct tape and laughter.

    He lives now in his own home, independently. Goes places.. independently. He’s getting married this year and waltzing off to live abroad for a while. Independently. He cannot walk-yet- without support, apart from the odd few impossible and independent steps 🙂 His vision is damaged, right side still lacks coordination, speech not perfect.. but what he is achieving is impossible. And he’s doing it every day.

    The system generalises… the miracle of one determined human spirit doesn’t.

      1. So are you, Arash. There is a lot of his journey in the earlier posts on my blog if you are interested. “Independent as possible”… hrmph…. about as encouraging and usesful as the physio who said my son’s hopes of recovery were ‘unrealistic’… The human spirit is capable of very great things… and so is the body. I wish you all the very best and will continue to follow your story.
        In Light

  5. God, that sucks. I have no experience of this, either here in the UK or anywhere else, but it is stupid and short-sighted of the system to let an insurer decide on treatment. I wish you well, and trust the little toe movement gets to be a big leg movement!

  6. Arash,
    You’re a gifted writer! This book is going to have a beautiful ending and I feel priviledged to be reading it now.
    Thank you!

  7. Great post! I completely agree that our health insurance options are severely limited and subject to unsustainable profit motives, which don’t address human needs. Unbelievable that this is the case in a post-industrial world! Keep after it. Reading your posts is a huge inspiration.

  8. Great post! I completely agree that our health insurance options are severely limited and subject to unsustainable profit motives, which don’t address human needs. Unbelievable that this is the case in a post-industrial world! Keep after it. Reading your posts is a huge inspiration.

  9. “As independent as possible.” I hate those words. Should be “as independent of insurance as soon as possible.” That would be a more accurate sentence. Hang in there. You are truly gifted and you will succeed.

  10. Arash ~ what Echo has shared is exactly what I was going to try to convey. Sometimes the medical professionals completely forget they are the “healing” profession… and as you’ve seen, resort to looking at cases more as a business model, trying to fit you into a neat box and boundary their efficient time strategies — which to me is very very disappointing. Sadly, I have been through this over and over again. After many years — I have accepted that I have to advocate for myself and heal myself. Never let the system deter you. Invent your own therapies – yes! Use your power of visualization… neuromuscular reprogramming … and don’t forget about love… You will find a rare exception – a practitioner who really will want to participate in “healing” ~ and this is a blessing. But don’t let the others break your spirit — empower yourself and keep your eye on the prize. Yes – a long road perhaps but I know you are strong, and will succeed.
    ~ Sending much Love your way dear friend, Robyn

    1. You’re absolutely right Robyn. Advocation for oneself is essential, as disappointing as that is and I applaud you for your efforts in your own journey. You continue to remind me how much love there is out there so thank you for that. And no I won’t let anyone break my spirit. The reality is that I know the people in the medical establishment don’t have bad intentions or low expectations for me, they just happen to be part f this dreadful, inefficient and rotten system which puts patient’s needs last. I always appreciate your spirit and words. Best to you. – AB

  11. 1 hour is nothing. I am SO sorry to hear this. Maybe there is a PT or OT in the bay area that would be willing to do some pro-bono work for you? honestly. Or even PT/OT students that would be willing to work with you for the experience. I think that any practioner would be lucky to work with someone as motivated as you are. No joke. Furthermore, I think people who specialize in SCI and work in rehab would be overwhelming excited to work with a person as driven and eagar as you. No one wants to work with a client who doesn’t want to get well…. You do and that has already set you apart from the rest. Maybe see if there are UCSF PT students that might be willing to work with you? It would be good for you and would give them valuable experience! (and they could put you as a reference on their resume!)

    Here’s to you Arash!

  12. Arash,

    I agree the system is broken and it will take huge political effort to change it but you can’t wait for that. Your blog is so wonderful, I bet you could barter your blogging skills for therapy. Your therapists would be getting a great deal!

    1. Haha that’s a good idea Suzanne. I’m not sure if the therapists would be ok with all of my criticisms but I like your idea nonetheless. And I’m definitely not waiting for change in the system, I just want to be a part of enacting that change. Thanks for reading. -AB

  13. Arash, I have followed your blog for about a month now. From the moment I first read it I have wanted to respond with some words of my experiences working with folks with SCI. I retired many years ago from a business, not even close to this field. I returned to educating myself through schooling and volunteering in the field of working with folks with disabilities. I specialize in Stroke Recovery now, but have worked with a few people with SCI. Believing you will get better is a major step in achieving the results you want. Doubting even for a moment can work against the progress. Without going into details about taking your first steps. Here is what has worked for the folks I have helped walk again. The thing you have to do every day is put your feet on the ground. “No weight”. Just sit in your short chair. Put your feet on the floor. Bare feet (optional). Lift one leg 1 or 2 inches with your hands then let it drop to the floor. Lift the other leg and let it drop to the floor. Do this many many times a day. Get back to me in a week. Tell me what is happening. Vince.

    Date: Fri, 18 Jan 2013 01:29:55 +0000 To: badger138@hotmail.com

  14. Arash….you are speaking the truth! I’ve been left for dead several times. Your frustration comes through this post as it should! But find the holes in the system and fill them as Echo stated. There are some wonderfully caring people out there and treatments that transcend our antiquated medical system….

    1. Yes in fact I’ve found some of those treatments and have them to thank for the achievements I’ve had thus far. I just know that not everyone may have the access to fill in those holes and will sadly be neglected by this medical system. Thanks for reading -AB

  15. Guys! A call to action is required.Get political over there! Use social media to go national, get the press on this, your president was just sworn in today! Get Arash some publicity – phone Oprah! Contact Huff
    Post! Contact local politicians! Turn support into action! This guy needs therapy as well as words.
    I am fortunate, I live in the UK, so have public funded health care system.

    1. I love your energy and call to action! Would love to do what I can to get the story out there and attract more attention to this situation and the complete inadequacy of the healthcare system to deal with SCI. Thanks for your support -AB

      1. WOW! Thank you for doing that. I’m so grateful for all the support I’ve been shown and thanks for your part in that. We’ll see if it gets to Huffington Post or not. Keeping my fingers crossed… -AB

  16. Arash. I want you to get as much aqua therapy as possible.
    Try these two routines’
    1. Swim, prone (the front or ventral part downward; lying face down), with PDF on.
    Have Spotter (therapist) hold your feet still. Then swim away from therapist.

    2. Stand in water shoulder height deep, with PDF on. Have feet secure on bottom of pool. In stirrups or ankle weights on. Then just simulate walking with your arms only. We can get the brain to activate and stimulate the right nerves and muscle with this approach.

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