People say it, and I agree, that I don’t entirely accept the conventional protocol for brain injury rehabilitation. I’m not saying others haven’t tried the methods I have. I’m just saying I never heard of it. Certainly not all of it. I refuse to confine Ryan to a bed. He spends no more — and no less — than anyone else with a typical normal sleep habit.
If nothing else, he stays busy. Boredom should not be a problem for him as he gets cycled through activity and rest throughout the day. I believe this is critical in his physical health and cognitive recovery (if it’s still possible). He broke new medical ground with baclofen. He was one of the first few TBI patients to use hyperbaric oxygen treatment (HBOT). He pioneered functional electrical stimulation against resistance for his muscles. Physically, he is the picture of health.
Which brings me to something that really pisses me off. It’s borne out of ignorance. People mistakenly believe people in a coma (or vegetative state) are always on life support. That machines are keeping them alive. This, in fact, is rarely the case. These types of patients are few, because they are completely brain-dead. There is absolutely zero electrical activity showing on an EEG. All channels are flat-lined and they have no hope.
I follow many websites of those coping with a loved one with brain injury. Really, none of these are in worse condition cognitively than Ryan. The comments left by the public on these sites are mostly supportive, but some are harsh and idiotic. Ryan is at the extreme end of this type of injury, so just about everything I say is easily applicable to others. Make no mistake, I am the expert on this topic (and I hate it). This gives me the authority to set a few things straight.
For example, when I hear people tell caregivers to “pull the plug”, I just have to wonder what plug they are referring? Most, like Ryan, are plugged into nothing. Their body survives on its own. The only thing I want to pull the plug on is these commenter’s internet connection.
Ready for another? They say “just let them go”. How exactly would one do that? Stop feeding them? Smother them with a pillow? They claim it’s the “practical” thing to do. Sorry, I don’t think murder is at all practical in these cases.
One more? Okay. These commenter’s claim that the injured are being kept alive (which is incorrect, in itself) by those who love them. We should just let go, they tout. That we are making them “a prisoner in their own body”. Seriously, do they really think this is what we want? That we somehow do this for ourselves? Does anyone else see the complete lunacy in this statement? Who, in their right mind, would lay everything aside if given the choice? Seriously!
To me, this is the exact opposite of selfishness. It’s the ultimate in responsibility. It’s unconditional love. It’s sacrifice on steroids. It’s accepting that personal hopes, dreams, and happiness are the price of unyielding loyalty. A price so high it bankrupts a person of their own being. We use our life and longevity as collateral, borrowing an un-payable amount against our well-being. We know it will most certainly come due unfairly early.