Six years ago today…

I had a second majorly invasive spine surgery. Six years ago tomorrow…was the day I nearly died. Six years ago Friday…was the day I learned how to walk for the third time in my life.

*What’s following is a shortened version of a part of my autobiography I’m writing titled WHEN CICADAS CRY. No, I don’t necessarily ever expect that this (or any part of the whole manuscript) will ever see a printing press. I’m writing this as a ‘note’ to myself and my kids (or any grandkids or family members) for later. I’ve been around enough cases of dementia and Alzheimer’s to know that if I am ever stricken with either of these memory-snatching diseases that at least there will be a record of my life for anyone who is interested in it. But this has nothing to do with today’s anniversary or this week’s anniversaries.*  

So back to it… Why I hate the word disabled…

When I was fourteen years old, I was diagnosed with scoliosis. I’d never heard of it. My family had never heard of it. That’s strange. I should have. After all, scoliosis is a hereditary disease. But in my case, if I inherited it then I don’t know where it came from. And trust me – I have searched, researched and searched some more, but I can NOT find any reference to scoliosis in my family’s history on either side. I finally learned that this little doozy of a disease can lie dormant for years…even centuries. And unfortunately, once it appears it can appear sooner again, or possibly never again for a few more centuries. That’s troubling, isn’t it?

Here, add this to what I just said – my scoliosis isn’t even normal. Nope. It’s an abnormally aggressive type of the spinal deforming disease. For most people that I’ve found and even met and talked with; their scoliosis was corrected by one surgery in their early to mid-teen years. Sure. Many of them had to wear back braces too. A lot of them didn’t.

*I want to add a note here that many scoliosis cases can and are fully treated by wearing back braces alone, or by chiropractors. I actually drove a chiropractor nuts once arguing with him when he made the statement at a health fair that ‘all cases of scoliosis can be easily treated by his methods.’ In the end, I got him to retract his statements and he started saying many instead. I’m focusing on the cases that require surgery for this post.* 

  Back to those one surgery cases…

Those cases usually involved a rod that’s about four vertebrae long, and four accompanying hooks or screws to hold the rod in place. Those screws are placed on the dominant side of the spine’s curve.

That’s what my first surgery looked like. Except for me, it didn’t last. I was fourteen years old when I had that first surgery and subsequently learned how to walk again. Like most other people who had this surgery, I thought I could get back to life like normal. I had no lasting ‘issues’and even went on to register as an NPC professional bodybuilding figure competitor. I got my personal training certification, went to college, eventually got a ‘real’ job as a legal assistant, had my two kids, and so on… I thought I was cured too.

I knew my scoliosis was worse than others because I had an S-shaped curve even then. What’s an S-shaped curve, you ask? It’s easiest just to look at it like this – my spine looked like an S. My lower spine (lumbar region) curved sideways to the left at 45 degrees.  My upper spine (thoracic region) curved sideways to the right at (then) 15 degrees.

My first surgery was done by a nationally recognized (then at least; it’s been a few years) orthopedic surgeon. Dr. Christofersen said all was well after it took me nearly a year to get back my pre-surgery mojo. He said by stabilizing the lower curve, the upper one would be frozen in place. He said I wouldn’t have to worry about it anymore. He was right for about ten years.

Ten years passed. I had a cushy legal assistant job, was a single mom of two amazing kids, and smiling at my twenty-fifth birthday when things, if you’ll pardon my cliche, went to hell in a handbasket. My health took a nosedive.

It took me six years to find a doctor that would see me. I found a general practitioner that grudgingly took me on after about four years, and it took him two more years to find a neurosurgeon that would see me. People, health insurance is not a friend to single parents with pre-existing conditions. (No. I’m not getting into this long-windedly, but even with the advent of Obamacare (or ACA) my battle to find doctors to see me is still one I have to fight constantly. Maybe things are different where you are, but for me out here where there’s more dirt and grass than concrete; it sucks.)

Anyway, at the age of 31 – scoliosis came back with a vengeance. I found myself undergoing God knows how many invasive tests with this neurosurgeon, Dr. McGirt at Vanderbilt University Health Center. By this time, I was having to use a cane to even get around with on days that the pain was bad. I was 31 years old and having to walk with a cane – yeah, you read that right.

I wasn’t surprised when the doc came back one day and said, ‘You’re going to need another surgery.’ Remember, I was supposed to have been ‘cured’ some fifteen years before. I didn’t take the news really well. I mean I took it like a champ sitting there in his office, but I fell apart on the way home. And then, I just went cold. After a lot of talking with loved ones and the doc, I finally made the decision to go for it. So, I did.

Surgery was scheduled for September 19th, and I went into surgery with no problems. My second surgery was such a rare case that Grey’s Anatomy (yeah, the TV show) came and filmed it. The episode aired in season six (I believe-I can’t remember as I write this) with my surgery, they, of course, did the Hollywood thing and fictionalized it. But here in the real world, I came out of surgery with a nice long titanium cage encasing most of my lumbar spine and fourteen screws. The old hardware they left in, they had to, or it would have just been ten screws since the orthopedic surgeon fused those four vertebrae with chunks from one of my ribs that he cut off. Things looked fine until…

September 20th.

That was the day I nearly had a massive heart attack and died. You see what happened was, I had an incompetent charge nurse in the ICU who (even though Vanderbilt University Medical Center (VUMC) knew I had terrible reactions to pain medications previously prior to surgery) took it upon herself not to, apparently, even READ my medical record. That being said, she proceeded to pump me full of pain medications that I couldn’t handle – that my body couldn’t handle. The result; I was essentially in a drug-induced coma, but not hardly.

I was cognitive enough to know about some of the things that were going on around me. I remember the charge nurse from hell coming in and pumping my morphine button every four hours like clockwork, and then her blaming me for it when the floor physician questioned her on why I wasn’t waking up. I remember him coming back in and studying my heart monitor, and yelling some more because my heart rate was nearly 300. I remember he ordered transfusions to try to calm my heart down. To this day, I believe I owe my life to that floor doctor at VUMC. The nurse…

Yeah her. While the doctor was trying to stop my heart from exploding, she called my mother at home and told her that she was going to call in VUMC psychiatrists because was being difficult. I guess she thought I was somehow making my heart pump like a geyser just to spite her. I remember them coming in, both of them. I also remember I wanted so badly to talk to them to try to get them to get me off the damned nurse’s floor before she killed me, but because she continued to pump me full of drugs I couldn’t even make my tongue move. So, they just left me in there, with the demon nurse.

My mother’s reaction was better. She came to VUMC and the floor doctor released me into her home and my general practitioner’s care. The damned nurse wanted to send me to a nursing home because after all, I was the one being difficult. When that didn’t work, she tried to make the floor doctor send me home with a permanent catheter. That didn’t work either. I was released after three days and zero physical therapy. I came home with a back brace and a walker. I taught myself how to walk again making trips up and down the hallway of my mother’s house using that walker and back brace. In a few days, I was even able to go out and sit on the back porch. And once I got away from Hell Nurse, my heart calmed down.

I went back to see the neurosurgeon a couple of weeks later and was told I was permanently disabled. I had crummy range of motion, still do. There’s no fault in that, just that with the cage around my spine it doesn’t allow it to flex. I was told to never lift over 15 pounds. I was told a whole lot of never do this stuff. Which I haven’t done in the last six years.

The United States Government denied my social security disability case when I applied after fighting them for a trio of years even though their neurosurgeon and doctor agreed with Dr. McGirt and my general practitioner that I was in fact – disabled. In the long run, I now believe it was a blessing.

Knowing that I was going to have to fend for my kids and myself even with my health issues, propelled me into hating the word DISABILITY. I’m not disabled. I’m dif-abled. I may not do things like others do or would, but I can do them. I just do them differently. The words disabled and unable are synonymous to me.

So instead of thinking/saying, I am UNABLE to do something, I find a way to make it happen even with my mounting limitations. I can’t go out and work at a job for forty hours a week. In fact, there are whole weeks when I can’t get out of bed and/or off the couch. Yet, I still need to be able to provide for my kids and myself. So, I found a way – differently. First as a virtual assistant, then that morphed into virtual assisting AND copywriting, and now it’s virtual assisting, copywriting, AND translation. And, of course, my writing. Obviously, I can’t rely on the government to help me. I don’t even qualify for state assistance. None of this means my limitations are gone. They aren’t.

It’s been six years today since my last surgery, and today I’m writing this looking at the upper curve in my back. It’s a slow-ticking time bomb. On that last visit to Dr. McGirt, he warned me. He warned me that in five to ten years more I could possibly be facing more surgery. This surgery would either be required to stabilize my upper spine or to fixate my pelvis when my lower spine decides to kink around my tailbone. In the long run, I’m looking at a probable wheelchair-bound life.

But…

I’m still not disabled. I’m simply dif-abled.

 

 

 

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