This post was inspired by a storyline on the last episode of the show House, which seems to be a muse for my blog entries. In the episode, titled "97 Seconds", one of House's patients is a man with a degenerative disease that has already made him reliant on a power wheelchair, a service dog, and aides to assist him with his personal hygiene and the other necessities of everyday life. The disease is now destroying his ability to swallow. As this procedure to implant a feeding tube takes place, the man gives voice to his grief over the things of which his disease has robbed him: his ability to walk, his modesty, and now, he explains, one of his few remaining pleasures, his ability to eat.
I have lived with such thieves for more than three decades now. Over the years, I have been robbed blind, then recovered some of that which was taken, and then lost it again, sometimes to the same thief, sometimes to a different villain. The name of the current robber is tethered cervical spinal cord syndrome. (I’ve included some medical background info about how this affects me at the end of the entry for anyone who’s interested.)
Like the flesh and blood criminals of the real world, I never know when my nemesis will strike, or what/how much will be taken from me against my will. Sometimes I get lucky, and I go for long periods of time in which the neighborhood watch (god? fate?) keeps the thief at bay. Other times I barely recover from one hit before something else is stolen away from me. Far too often the crimes occur while I sleep, so long ago I developed the habit of taking inventory of what I have left every morning when I wake up.
I’ve been the target of petty thefts and grand larcenies. I’ve often thought that I’d be far better off by having everything taken from me at once so I could grieve for all that was lost, stabilize, and move on, instead of being locked into this perpetual cycle of loss, mourning, and acceptance. But regardless of what’s taken from my body, the effect on my mind is always the same. I feel violated. I get angry. The certainty that I just can’t take this anymore eventually fades into resigned acceptance that I can take it, and I will take it, for the alternatives are unthinkable.
Worse, these degenerative diseases do not limit their pilfering to your body and abilities. They literally add insult to injury by stealing away your hope, your dignity, your modesty, your independence. They rob you of how other people see you, changing you instantly into a “patient” or a “disabled person” at the expense of every other identity you possess (e.g. outspoken activist, happily married woman, world traveler, cat rescuer). And at their worst, they can take from you your self-esteem, falsely leaving you to feel like a defeated victim instead of a determined survivor.
Although the things that are stolen from me have sometimes come back -- some only temporarily, others for much longer -- the question of, “is there any real justice to be had” remains open. My personal belief is that the reasons I am a party to these robberies are just, but in ways that are not necessarily evident or even able to be known. With the benefit of hindsight, I can state with certainty that for everything that has been taken from me, I have gained at least as much as I lost -- in experience, in love, in opportunity. And although it’s not an option today, I want to believe that a day will come -- probably after my life has ended -- in which the perpetrators of these crimes will be caught, corrected, or eliminated. This is the one group of criminals I will be glad to see executed without delay.
About My Latest Thief:
Like most of the medical maladies that find their way into my life, tethered cervical cord syndrome not at all a common condition. It is extremely rare, and as such there is very little information out there about it, let alone surgeons with experience at de-tethering at the brain stem level. (Most tethering of the spinal cord occurs near the tailbone and is typically congenital.) The easiest way to explain the condition is to picture an egg. In this syndrome, the egg yolk (the cervical spinal cord/brain stem) is no longer cushioned on all sides by the egg white (cerebral spinal fluid. Instead, parts of the yolk have adhered directly to the egg shell (which in the human body is the dura, the protective casing that surrounds the spinal cord). This attachment is a bad thing in even normal bodies, because it forces parts of the spinal cord to stretch every time certain movements are made, resulting in nerve damage. In my body, it’s totally FUBAR. After the surgeries and radiation treatments for the astrocytoma, I’ve only got about 10 percent of my cervical spinal cord left (that’s physically, not functionally -- the rest gone). Because the little bit of cord that’s left is sitting inside of a spine that twists and turns (about 90 degrees front to back and over 30 degrees from side to side), it’s already stretched taut and is now resting right next to the backs of the vertebrae, a dangerous development in and of itself. And now, bits of that carved down, stretched to the max cord have latched on to the dura, a tried and true recipe for even more damage. Add to all this the fact that a certain number of nerve cells of the brain and spinal cord are sure to die off I age, and I seem screwed (at least on paper).
The doctors I’ve seen believe this condition will result in quadriplegia, and there’s a good chance that I will need to rely on a ventilator to breathe. For now, though, I’m nowhere near that. I still have almost full use of my left arm and hand, decent use of my right arm, and I have some movement and strength in my legs, even if they can’t do anything useful. And the only breathing problems I have right now are caused by the two types of lung disease I picked up battling side effects of the nerve damage, not by the nerve damage itself.