This weekend marks 2.5 years since I was given a spinal cord injury and paralyzed on the left side of my body.
I have become more and more grateful the past month that my body continues to heal against the odds. I don’t know how and I don’t know why. I’ve slid off the vegan diet a bit, been lax on taking the supplements that I was so adamant about, yet week to week, month to month, I continue to improve and no one knows why. Iknow, I know I’ve written posts about people who don’t give up, people in wheelchairs that I see every day coming into to rehab. But I don’t see anyone that has made as much improvement as I have. Russ has some setbacks (urinary tract infections are common among spinal cord injury population) and is about where he was last year. Maybe a bit better, but not much. Molly ‘regressed’ because she took time out to be pregnant. Stephen, Danny and Romy are all the same more or less.
My occpupational therapist spoke to someone at NIH about my case, confirming her sense that this is highly unusual. She doesn’t recall working with someone that gets individual muscle return this far post injury.
So I have a lot to be grateful for….. despite what happened.
A couple of weeks ago I met a woman whose uterine cancer was over-radiated by her doctors. She kept asking them, over and over again, am I supposed to feel this way? I’m losing my balance; I’m falling. I feel really sick. And her doctors kept telling her it was perfectly normal, everything was ‘fine.’ Now she can’t really walk. They over radiated everything and damaged her spinal cord. And you know what? Happens all the time…. because there is so much money in radiation treatments, they now over- radiate people. It’s a common problem. (Big article in NYT recently).
Maybe because I’m in the kind of rehab that only the serious problems go to that I see all the mistakes, but there are a ton of mistakes and no one in the medical field takes responsibility. We can kind of expect that people don’t take responsibility for their mistakes, that is all to common, but from where I stand, these same people spend their time telling their patients that they don’t know what they’re talking about, that they need to stop complaing and just suck it up. My own experience is a text book.
I have a recording of my 2nd encounter with the surgeon, and every question I asked (very thourough questions thoughtfully prepared by my attorney friend) was “I don’t know.” He did brag that he had never paralyzed anyone, and the following meeting when I asked him about Dr. Adler saying that I was going to be severly impaired due to the surgery he told me, “That guy hasn’t been in the operating room in years.”
Still though, who wouldn’t take a warning by one of the world’s foremost medical scientists and a Stanford surgical fellow seriously?
Here’s where the medical tradition gets morally questionable: When I tell my physician this (who has insisted that its her job to help me btw), she only follows up with the local surgeon. And then when he tells her I’m going to be fine (which he legally cannot do), she starts calling me up telling me to get it over with.
Yes, all water under the bridge, but now it’s a larger question. They are telling the same thing to people getting radiation treatments who are in fact getting over-radiated. You are considered an idiot who doesn’t know what you are talking about purely because you are a patient. It doesn’t matter that I’m repeating what the Director of Neurosurgery of Stanford told me, it’s simply not true because I’m a patient too stupid to know anything about medical issues and who perhaps didn’t remeber it correctly.
Even other people do this to you. When I told my ex-bf that I had a spinal cord tumor, his first reaction was that I misunderstood the doctor; that I didn’t know what I was talking about. Note my hearing is considered impaired immediately by the person who is supposed to be my greatest support (we did live together for 3 years). But I ignore the insult because I am freaked out anyway and concentrate on the nice things, ex:”don’t worry, if anything happens we’ll get 10 colas and cart you around venice!” But the doctor is right factor is too high even among lay people; even people who have been to hospitals a lot (I personally had never stepped foot in one until my surgery – never needed too). My ex, who had a lot of experience with doctors and hospitals thought I didn’t get the conversation with the Standford guy right either, because after my physician called me up to tell me to “get it over with” he was right there on her side, not mine, telling me “who cares if you walk with a cane” and “surgery will be good for you” as if its some sort of double dare not the next 40 years of my life until I die….. all because as the patient you are too ignorant to be able to make a good decision for yourself.
So 2.5 years later, I have to live with my decision, me and me alone, because everyone — the surgeon, my physician, my exbf, who insisted I was going to be fine left me to deal with the problem alone after they were wrong.
And I don’t think I’m the exception. I don’t think they did anything extra sloppy with me that they wouldn’t have done to the next person. If anything, I’m truly lucky I did enough research to find out just how wrong and sloppy they were!
Again, I don’t think I’m the exception. I think I’m the rule. And I really wish my head weren’t full of stories where doctors constantly make stupid mistakes and blame their patients because they don’t like being wrong or drawing attention to their faults… but people lose their quality of life, the things that make life exciting and fun, on a daily basis because of medical arrogance, ignorance or both.
And that’s a truly horrible problem…. and we cover it up because we don’t want to see it.
Have a safe labor day everyone.
