Lately, at the Compound

I love unpredictability in my friends. People who say or do things it wouldn't immediately occur to me to say or do either intrigue or frighten me. Those who do not frighten me I often want as friends, and I've had some success in getting what I want in that regard.

In the past two years, I've learned that unpredictability is just about the last thing I want in the people who help me daily with personal care, trach health, vent upkeep, etc. I have 24-hour nursing assistance (the "nurse" part being required for state financing of assistance because I use a vent), and other than reliability and competence, predictability is what I crave most in my assistance. When someone is fluttering around me helping with suction or hygiene or other stuff that directly affects my person, the last thing I want is to be watching them and thinking "Now, what the hell are they doing with that?" Predictability requires less mental energy than astonishment or confusion and the less energy I expend with my assistants, the more I have for the rest of my life. And while predictability has been a little elusive at the Gimp Compound lately, it's not my biggest challenge.

It's been my biggest challenge these past two years to adjust to always always having someone present to assist me and keep me breathing. I don't go for strolls around the neighborhood alone, I don't stay home on my own for even ten minutes and I don't wander around the mall by myself. That's new these past two years. I'm a person who has always enjoyed being alone. I like my own company.

The idea behind this constant assistance is that my vent circuit could pop apart (as it does now and then) and no one wants to be responsible for my accidental death from lack of air and suffocation. I can breathe a little bit on my own, and in certain circumstances I can put my circuit back together again, but not so easily that it's a sure thing. So, the trade-off is that I get more supervision than your average toddler.

Having someone always waiting in the wings to assist is not nearly the luxury you might imagine it to be. Intimate discussions are weird with someone close at hand. Lively political debate at dinner always seems peculiar when a silent (and generally professional and discrete) presence sits in the next room. And, in fact, on days when the household has indulged in a big pot of chili it can be downright stifling to family entertainment.

Constant personal assistance is a serious challenge to privacy and personal autonomy, and I've learned a lot about myself and other people while trying to negotiate the space I need. My mp3 player is a key part of my "leave me alone" strategy. So is closing my eyes and pretending to sleep. If you can't escape people -- or even leave the room -- you sometimes must simply shut them out.

I first learned that two years ago while in hospital. If you can't walk away and someone is invading your space: be unapologetically rude. Ignore them. Wave them imperiously away. All young women should be taught this early. I can't believe it took a dire health crisis at age 38 to experience the freedom of blowing someone off when they're in your face and won't go away. Nice Minnesota girls just don't get that memo in their ordinary lives.

Predictability and privacy are linked. To be able to have assistance always around but not intrusive requires that assistance knows what to do without constant negotiation or discussion complicating the day. Home health care provides at least the hope of achieving that in ways inmates of nursing homes can almost never expect. No doubt those who do this care appreciate consistency too, since mistakes happen more easily in unfamiliar situations.

This is where my mental energy has been these past several months when I've been blogging much less. I've switched home health care agencies, said goodbye to four nurses, met and trained three nurses, and some other stuff I'll write about soon. I'm hoping to get back to writing more here this month, and I've joined up for NationalBlogPostingMonth to encourage myself.

Image description: The black-and-white photograph above is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Blog Free or Die" with a little skull image after the "'07".