Monday, February 13, 2012
Expectations of SCI Recovery in the Media (and how we came to realize that walking is over-rated)
For the past few weeks, I’ve been watching “Downton Abbey” on PBS. For those of you unfamiliar with the series, it follows the lives of all those (both above and below stairs) who live in an English country home at the turn of the century. This season, its second, has revolved around WWI. A few episodes ago, one of the main characters suffered a spinal cord injury in battle. Miraculously (and none too realistically), he recovered his ability to walk in last night’s episode. He simply stood up again (well, actually, he jumped out of his wheelchair in order to help his fiancee, who was falling). Apparently, he was lucky and only had spinal shock, and not permanent paralysis. The reality, however, is that spinal shock would wear off within 30 days or so of injury, and there would be signs (twitching legs, ability to move toes, etc, etc) WELL before the walking. You’d also lose a great deal of bone density and muscle tone in the time between injury and recovery, thus making it highly unlikely that you’d simply be able to stand up and walk. It would take some physical therapy. Now, I understand why, in terms of the story, the writers of “Downton” took this approach. The reality is that, up until WWII, paraplegics on average, lived less than 2 years--not because of the spinal injury, but because of all the secondary complications and infections that come with it. But, I get frustrated with how SCI is portrayed in various media forms. This is but one example...the worse examples (in my opinion), are the stories that perpetuate the “work harder and you’ll be able to walk” myth. For example (http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2012/01/29/MNFJ1MV70P.DTL) or a recent episode of Extreme Makeover: Home Edition (http://articles.baltimoresun.com/2011-10-21/features/bs-ae-extreme-homemakover-20111021_1_therapy-room-quadriplegic-patient-baltimore-s-kennedy-krieger-institute).
Apparently, if you work hard enough, and put in enough hours with physical therapy, you’ll be able to walk (the converse of this being that those who are not able to walk have not worked hard enough). These stories, while miraculous (and I’m genuinely happy for the people highlighted), do a dis-service to the majority of people dealing with SCI. Most people don’t know anything about paralysis. I didn’t before Jason’s accident. This is why these stories can be so frustrating: more often than not, this is all that people know of SCI. The reality is that no amount of work can fix damaged nerves. No amount of trying can un-bend or re-fuse a damaged spinal cord. That’s simply not how the body works (and, as of now, medicine doesn’t know how to make these things happen either). Also, paralysis means more than losing the ability to walk. It means that nearly everything below your level of injury has been compromised in some manner. I would venture to guess that most people with SCI would gladly choose having some of these other complications resolved over regaining the ability to walk. Jason seems to go back and forth on this...though at the moment, walking is winning :)
I don’t mean to sound so very pessimistic, especially because I’m extraordinarily optimistic about Jason and his recovery. Physical and exercise therapy continue to be an important part of Jason’s recovery, but the ultimate goal is to build strength, maintain bone density, and work with leg braces (though this type of walking will most likely not be functional). We hope for as full of a recovery as possible, but neither Jason nor myself operate under the illusion that working hard guarantees anything with this injury. I wish that reality was portrayed more often. I guess it’s not as good of a story.