(Welcome to a couple of new members of my blog mailing list. Just let me know if you wish to not receive such email in the future. Also, I apologize for the extreme length of this blog entry, but it drills down to the very core of why I blog.)
ER is a television show very popular on NBC in the US. Like all network shows, it has its own collection of critics—often correct—about its accuracy. Yet, its writers still occasionally manage to hit the core of some medical realities in our society. “Body & Soul” is an episode that aired two weeks ago, drawing heavily upon the situation of Dr. Stephen Hawkins right down to the crappy voice synthesizer run by a manufacturer tech off-camera. J
The episode deals with the realities faced by Dr. Nate Lennox (James Woods), an award-winning microbiologist, and his assistant-cum-caregiver of 25 years, Fran Blevins (Ally Walker). The show starts with the audience seeing Nate out on a crowded ice rink in his wheelchair motoring along oblivious to his surroundings. Nate has ALS, of course, and we soon learn his incoherence is due to low blood oxygenation levels due to pneumonia. He has basically reached another milestone in the progression of his disease where he can no longer breathe on his own. A debate ensues between Fran and some of the ER doctors over whether or not Nate would want a tracheotomy since he is still too disoriented to use his eye-controlled assistive communications device (with the cruddy voice—sorry, that’s a sore point for me) to coherently express his wishes. The pro-tracheotomy faction is led by Dr. Abby Lockhart (Maury Tierny), who seems to be determined to “save” Nate despite Fran’s misgivings. We don’t learn about Abby’s motivation until the end.
As the doctors deal with less-invasive procedures and then complications of the tracheotomy, a series of flashbacks show us the other “milestones” of ALS as it slowly kills Nate’s nervous system. In reverse order, we witness the points in his life where assistive communication, a feeding tube, and a power wheelchair become necessary parts of his shrinking world. The flashbacks and dialog also give us some clues about an aspect of disability that very few people even acknowledge, that is the erosion of hope and energy with time. Life is so difficult with a severe disability that it saps the spirit from all members of the household (thus, the episode’s title). Fran started out as Nate’s research assistant, and there was a point where things could’ve turned romantic if ALS hadn’t entered the picture and prompted Nate to rule the opportunity lost. Yet, she’s still at his side after 25 years, despite her own mental and physical wear, as his primary caregiver. It’s a nice bit of reality when the dialog acknowledges that it’s nearly impossible to keep other caregivers for long. As she puts it, they don’t give the care he needs, and she can’t leave him to that fate. If we had any doubts about her true motives in questioning the tracheotomy, that sad and weary comment silences them. Judging from the experiences of Dr. Hawkins and his wife, the remarks also have the ring of truth. I guess it helps that they knew these brilliant and energetic men before the onset of symptoms, because that gave them memories to keep them going.
I’ll wrap up my synopsis of the ER episode like this. Nate does eventually regain his mental clarity, and tells Abby in no uncertain terms that Fran had been correct in her sensing that he wouldn’t have agreed to the trake. He says he’s out of hope, and plans to go home, have one last poker game with friends, and then go to bed without his ventilator so he’ll quietly slip away in his sleep. This is where we learn the reason for Abby’s aggressive approach. Like some of the other doctors, Abby had survived Nate’s first year biology class. However, she stuck it out only because he challenged her with a $10 bet that he could successfully tutor her. This is where Abby reverses the challenge, betting $10 that she could get him past the pneumonia so that he might be able to plateau as Hawkins has and resume teaching. However, if she fails, Abby volunteers to be the one to remove Nate’s vent and ease his departure. I must say that last part seems to impress Nate—and me, frankly—the most, given society’s screwed-up view of assisted suicide.
There are differences between me and the fictional Dr. Nate Lennox, of course. Cerebral Palsy isn’t progressive generally. It is essentially a form of brain damage that can occur during pregnancy or birth. Not a great deal more is known about it, however. CP survivors like me who are “lucky” enough to avoid mental impairment simply spend our lives finding ways around our spasticity and lack of fine muscle control.
For people like me, the aspect of a severe disability that’s progressive is the financial burden. Those who don’t have a disability in their immediate family tend to believe the various governmental agencies pick up the tab and enable everyone to live at least decent lives. Well, people who believe that are mistaken. I get only $1500 per month, and I am entitled to that much only because I worked 14 years for Shell Oil as an applications developer. I am out of bed for at least 14 hours every day so I have to hire and pay for two caregivers. That alone costs roughly $50,000 annually, plus $8000 in various state and federal taxes. Of that $58,000 burden, roughly $39,000 is reimbursed by a Long Term Care insurance policy I was able to enroll in while with Shell. The rest I have to come up with somehow, and I don’t even pay my people competitively. Saving anything was almost impossible when I was earning $64,000. Not because I was spending wildly, but I had to carry that weight, other medical expenses not covered, and still wanted a few of the nice things my co-workers took for granted.
That LTC policy ends 90 days into 2008, and, as things stand now, that will leave Medicare/Medicaid as my only option. Medicare supposedly can pay for individual caregivers, but they do so only several months after each invoice. I don’t know of any caregivers rich enough to afford that. Instead, Medicare will disregard the fact that I own my own home and aging van, and ship me off to a Medicare-funded nursing home because I need assistance with the five ADLs. I’ve had several caregivers who have worked in those places and their advice is unanimous: I need to avoid those places like Ebola. Fran Blevin’s remarks apply to nursing homes funded by Medicare in spades. They are under-funded, and so they’re under-staffed by under-motivated people. Care there is minimal at best.
It is true that I am able to do some things people find amazing. In that narrow context, I suppose the politically-correct “differently-abled” has some validity. However, that’s only true when important technology works and I’m at least near enough to the laptop. If something breaks or I’m not in my chair, I’m in the state Dr. Nate Lennox feared the most would be his fate: a functioning mind locked away in a useless body. I too refuse to go there. That’s an end inappropriate for any semi-intelligent animal. The technologies that enable me to function do require support and repair. That is currently provided by one of my caregivers, a friend, and—a little indirectly—by Dell. I wouldn’t have that support infrastructure in a nursing home environment. Depending on what malfunctions, I might not be able to summon support. It’s certain those under-paid, overworked caregivers won’t.
People get very hinky when I calmly discuss suicide as a possible alternative to wasting away in a nursing home, because they think I’m somehow trying to manipulate them. That’s a pity, because drawing that conclusion causes them to overlook the real point. I inherently need for people to know my story. Of course I hope to leave behind something more tangible and useful, such as a descendant of Xpress It on maybe a tablet PC. Yet, that hope fades with each passing day. If my perspectives of how I am affected by events playing out with and around me are to be my only legacy, I have to record and archive them. That’s the most fundamental reason why I created this blog. As a fiscal and social conservative, I firmly believe public awareness and scrutiny will ultimately be more effective in improving treatment of the disabled and other minorities than all the laws in the universe. After all, we are all members of one minority or another. How many times must I endure recruiters telling me that my resume indicates that I’m perfect for a position only to have them completely disappear or decline to interview me as soon as they learn I’m disabled before the discrimination becomes too obvious to deny? Those are the types of experience I need to capture along with other things like the bureaucratic idiocy of the IRS if conditions are ever going to improve for future generations.
The best analogy I can give you is that of water. Water molecules comprise the second lightest element we know of, meaning that the amount of influence an individual molecule can exert on its surroundings is virtually nil. Yet, just ask any survivor of the 2004 tsunami how powerful those same molecules become when they start moving in the same general direction and bumping into each other. Humans function on the same principle in most cases.
Incidentally, the tech who actually ran the communications rig seen on ER says it sells for $7500-10,000. Yeah, right. Is it any wonder why the thought of lowering Xpress It’s price from $850 galls me?
You can read the rest of my blog here.