As I lay here (with more pains than my imaginary audience would like to hear about),
it suddenly occurred to me…
I bet if researchers could get their hands on detailed records from the 19th century of patients who were admitted into mental institutions,
I guarantee they would find a certain percentage of those patients that actually suffered with chronic illnesses–illnesses we could now recognize and diagnose, that we couldn’t back then.
I was just thinking tonight how trapped I feel…how dependent I am on others for help. I feel grateful I can walk around, cook and do a little cleaning, but that’s about it.
[I’m hoping on going regular ivig will make me more stable, but as it has been for the last ten years, I’ve been extremely dependent on the help of others.]
Not just financial help (though that’s a big part of it), but the physical day to day help, like driving…and on really bad days, even basic getting up and taking care of things.
I started to try and research a place where someone like myself could live, and there really isn’t a place. Most places are geared towards those who are older (and are expected to be in this kind of shape), or for people who are super close to death.
I’m very lucky to have the financial support to have the help that I need to live through this, but what if I didn’t?
Spending some time in Canada has made me realize just how vulnerable I am. In some ways, I have no business leaving Los Angeles. It’s not just doctors who know my case, it’s that my place in Los Angeles is the best place for someone like me (that’s not a nursing home), I have dear friends who would help me if I was in a dire emergency, and then I have people I could hire if my friends were not available to help.
This kind of support system is irreplaceable…it takes years to build up this kind of network for support.
I really hope the ivig stabilizes me so that I’m not so dependent on having such an intricate network of support (that is the idea), but I know I’m just being naive to think it will solve all of my problems. Yes, it will help tremendously, but it’s not a cure.
(How far I will go, is what we’re going to figure out– 🙂
So that’s what got me thinking–what did people like me do a long time ago? Nowadays, I know we just live with family or friends, but a hundred years ago, if they didn’t have that, what did they do?
There is such an ingrained culture in the medical field of medical professionals jumping to the ‘mental illness’ diagnosis when they don’t understand or can’t figure something out,
I wonder when this started to become so rampant…I’m guessing it would have been around the time big mental institutions were built, which was also around the time doctors and all of these medical societies were making all of these ‘advances’ in medicine, putting more pressure on doctors to have a ‘diagnosis’ for a patient’s complaints with the ‘scientific evidence’ to back it up.
Doctors have always tried to diagnosis patients problems, but up until the last two hundred years, I think medicine was more forgiving…the medical field used to be more embracing of the concept that diagnosing patients is as much intuition as it is science–
(Maybe it’s the pressure of all the damn medical coding for insurance billing/payments? There really should be a ‘she’s just f***ing sick’ code.)
In two hundred years from now, I think the medical field will look back on this time as being “the dark time” in the history of medicine,
because never before in the history of medicine have doctors been under such pressure ‘to be right’, when the medical tools they have to work with are so limited–
(Meaning, the large amount of false negative and false positive blood tests, yet doctors are constantly being forced into looking to those tests to fill in the dots in their medical coding paperwork.)
As medical tests improve and get better (and our acceptance of what they can do and not do for us gets better–right now, these tests are like a child getting a new toy–they’re given waaaay more importance in a patient’s evaluation than these tests deserve–),
I really think as medical testing actually improves, this time will be looked on as a dark time in medicine. A frustrating time.
For me? I’m just lucky to be alive, lucky to have friends who care enough about me to keep me on this planet. I can’t make it through a day without help, and it’s time for me to spend more time just being grateful (instead of what I do now, which is try to deny it to myself–)
Probably because I prefer to be independent.
Human beings really do need communities in order to survive. Some of us more desperately than others, but the truth is no man can be island. That’s just a fantasy Hollywood created. Or maybe Christianity created it, by elevating Jesus Christ so much? By celebrating him so much as an individual , and disconnecting him from us, we really did ourselves a disservice in how we see and evaluate those around us, that perhaps goes back 2,000 years now–
No one can live and thrive without the love and supports of others. It’s ingrained into the very essence of our beings. People are just deluding themselves to think they don’t need the help of others…perhaps because they’re afraid to feel vulnerable?
Some of us are just more dependent on support than others…so we know it.
I’m just grateful to God I’ve had the support I need to live…and I am definitely not worthy. I’ve just been lucky.
Thank you Joe– 🙂