After reading this article in the NYTimes Online, I am even more grateful for my parents' determination to keep my siblings and me out of an institution. I have a friend who protested a group home in San Francisco a couple of years ago, but even then I guess I never really grasped how many people are forced into "gulags" rather than being allowed to stay in their homes. It always seemed dumb to me that my annual review for self-directed care included a question which asked, "Do you wish to continue self-directed services rather than enter a nursing home?" In my mind (and sometimes out loud) I always answered, "Well, duh," but it appears the painful reality is that a lot of people don't get that choice.

How stupid is it to advocate nursing homes for people with disabilities when it's obvious they cost so much more than in-home care? Even medical in-home care costs less than a facility. State governments want to save money. Wouldn't it make more sense to get people out of the gulags and into their own homes than to cut money to people already living in their own homes? All the latter does is force many of us into homes which are (did I forget to mention?) more expensive.

And what is that protection crap all about? Who's being protected here? Maybe the closed-minded ABs who want to live in a fantasy world that everything is perfect and that there is NO possibility that their child could be born with MD or CP or that they could wind up a quadriplegic after that guy who has six DUIs and has never seen a minute of jail time broadsides their car on a perfectly sunny summer day? Whatever.

I visited a gulag here in Wichita when I was deciding how I was going to live away from home for the first time to attend college. The longer I stayed there, the more and more trapped I felt. When Mom and I tried to leave, our van wouldn't start. I went into the first panic attack of my life -- a full-blown one complete with tears and an attempt at hyperventilation. I was convinced that if I didn't get out of there RIGHT NOW, I never would. It was, quite literally and with no exaggeration whatsoever, the scariest experience of my life.

I had no idea then how lucky I was to have parents that refused to send me to an institution no matter how much the doctors insisted it was the best course of action. I'm starting to realize it now, 30+ years later. I know how much of a hardship it was for them to take care of three of us with only a little help from Medicaid and SSI to pay doctor bills and from MDA to pay for surgeries and wheelchairs. There was no one but them to take us to the bathroom and bathe us and dress us and get us in and out of bed and haul us around to school and doctor's appointments and MD clinic. The only reprieve they had was one week in the summer when we went to MD camp. But they did it, and if they ever discussed among themselves that they'd made the wrong decision years ago, I sure could never tell. Some kids weren't as lucky as us, and that makes me sadder than I could ever express in the written or even spoken word. I got a glimpse of how sad and trapped their lives are when I visited that gulag, and I can easily say I'd rather die than live like that. My heart and soul just couldn't take it, not after my parents raised me to live free.

My mom IS Boudicea! I just found out that the strongest medication she took after getting off the IV is 600 milligram Ibuprofen. She never even filled her script for Loratab. What a stud my mother is!!

OK, it's been awhile since I've made an entry into my blog, but since I doubt that anyone reads it anyway, it's probably no big loss, eh?

Just on the off-chance someone actually DOES read this, here's what's been shakin' the last few weeks:

-- Lots and lots of school work, which is what I spend my days typing rather than entering in my blog

-- My mother (who has lovingly been dubbed Boudicea by my "big sister" Lisa) had a laproscopic hysterectomy and was in her pharmacology class four days later making an A-level presentation on lupus

-- I've been in and out of my doc's office for the last three weeks trying to determine why I've been having heart palpitations and headaches. Preliminary diagnosis is anxiety attacks with a new spin (the headaches), but just to be sure I'm having to wear a "King of Hearts" monitor for a month (starting today) to ensure my rhythm is OK.

-- I'm trying to catch a cold. I'm just thankful it's not strep.

Yeah, I lead a hell of an exciting life. One positive thing I can say is the Columbian hottie who works the info desk in my building noticed this morning that I was under the weather and seemed genuinely concerned. Hey, it's a small pleasure, but I take 'em as I get 'em.