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…”