Lost Time

I've had a challenging few days recently, especially around time and timing. What with late home care and missing taxis, time has been chopped out of my days, leaving me little or not time to write. There have been a couple of comments as to how I perhaps should be grateful that home care came at all, even though late and without the required skills and that at least the taxi finally got to Costco notwithstanding a 90 minute delay. My brother went so far as to suggest that there is no grand conspiracy against me with these things.

He's right. There is no grand conspiracy. What there is, however, is a complete failure of understanding on the part of those who don't face the difficulties and constraints that those of us with severe limitations do face. It all has to do with time. In general, I don't have a lot left. In specific, my days are short enough such that any failure of time or timing can have a fairly dramatic effect.

My days ostensibly start at 10:30 AM. This does not mean I am up and about at that time. I am simply awake, a limp body awaiting the ministrations of a trained Health Care Aide. At 10:30 AM, I am ready for clean-up, peri-care and an in/out catheter. This can take anywhere from 15 to 30 minutes, depending on whether or not I soiled myself in the night. After this, I get slung from bed to commode chair, and wheeled in over the toilet to spend my time awaiting a bowel movement, anywhere from 20 to 45 minutes. Remember, I don't have the muscles to push; I am compelled to wait. After that, assuming I don't have a shower or exercises, something which happens on Monday, Wednesday and Friday, I am returned to my bed for condom catheterization and dressing. Usually this takes anywhere from 15 to 30 minutes.

All in all, with the morning needs, an awakening of 10:30 AM means I am in my chair and ready to face the day about 90 minutes later, usually at around noon. Even on shower days I can usually hit this mark, except shower days are also exercise days, making it more like 1:00 PM, after a 10:30 AM wake up. Since my evening home care arrives at 9:30 PM, ostensibly, that means I usually have all of 8 or 9 hours in which to complete my days, minus, of course, the 2 hour nap I need in the midst of most days in order to rebuild the energy lost in the morning's activities.

So take yesterday as an example. I finished shopping at Costco at 6:30 PM. Lots of time for me to get home, unpack, eat a bit of dinner, and be ready for Kabira's 9:30 PM arrival. Except the cab company screwed up. The first cab they sent, within about 15 minutes, was not a wheelchair cab. I take some responsibility for this, as I did not order the cab. The Costco supervisor did, and he may have forgotten to say that I needed a wheelchair cab. The second cab they sent simply did not appear. After about a 40 minute wait, I called the cab compay again and was told the driver reported having picked me up and dropped me off. I reported the untruth of that statement.

By the time an actual wheelchair cab arrived, it was 8:00 PM, an hour and a half wait for a cab. It took about 20 minutes for me to get home. As it happened, Kabira phoned just then and asked if she could come at 9:00 PM. I could have said no, but there was an advantage for me if she came early. She could help me put away groceries. It's not in the care plan, but it meant she could get in and get out early. All in all, my Monday started at 1:00 PM and ended at 9:00 PM. I lost 1.5 hours due to the taxi, meaning I had 6.5 hours of active time. In that time I had a wonderful visit from a friend and got to spend some time shopping.

My days are limited, both in duration and availability. My life is foreshortened, such that any day or any time I lose is magnified. No, there is no grand conspiracty. Just a complete lack of understanding by those who don't live this life as to how precious hours and minutes can be, and how few of them I have to lose, regardless of circumstance.