I've waited since Monday to calm down enough to write this post in an eloquent and supportive way versus the rapid-to-slow-to-no boil I've been feeling this week, and say something inappropriate.
I'm writing this for ALL individuals with various illnesses and disabilities, some of those which can't be seen or detected at first glance unless you've spent a little time with the person. Sometimes as little as 5 minutes is all it takes.
And to the caretakers of these individuals who have the often unpleasant duty of arranging appointments, transportation, etc. and deal with a person 'just doing their job' on the other end of the phone.
Both of my girls were born with a genetic disorder which it's acronym is O.T.C. Google if you wish; it's complex; chances are 1:80,000 tho now they believe some of the SIDS deaths can be attributed to this awful disease. It's not curable and no effective treatment but to limit protein in your diet.
My oldest daughter Katy, has always been more affected and brain damage from it's toxicity left her with a variety of disabilities, although after years of hard work, she's high functioning not to mention the bravest person I know.
She's been flirting with high blood pressure since junior high school; all was carefully documented. She was referred to a kidney Doc at Mayo a handful of years ago who did some BP testing on her but it was fine that day. He said to watch it tho, as OTC has a way of going after the kidneys and/or high blood pressure in a child or young adult usually starts with a kidney problem.
Friday, May 3rd, Katy had a very long day with a kidney doc because her BP is consistently high (she's not overweight). They did blood work and hooked her up to an automatic BP cuff that went off every 15 minutes, then had to spend the next 6 hours walking around downtown Rochester and could not nap. (I didn't go; no way because of my PSP could I endure that event.)
Turns out after they met with the kidney Doc who was able to read 6 hours worth of readings in a few minutes, she does have high blood pressure. Is it due to OTC, God forbid? Or diet and lack of exercise? The next step is to get a call from Mayo with a date for much radiographic work on her kidneys.
Monday of this week, the phone rang; caller ID indicated it was Mayo. Katy doesn't like talking on the phone, but as much as I can, I encourage her to push her boundaries; works well some days; others not so much.
I answered the phone and they asked for her. I told Katy it was a call from Mayo and she eagerly took the handset. Within seconds, I saw her eyebrows furrow together, her body go rigid, and that 'look' I've come to know that means she's in over her head.
The Mayo person was loud - I could hear her easily tho I wasn't on the handset - and she was talking so rapidly, she wasn't making sense. Anytime Katy would try to interject with a "can you slow down" or a "I don't understand!", the woman kept going, rapid-fire.
I told her to let me talk to the Mayo person. Enough was enough. Katy had tipped over the line of being able to manage and I was frustrated as well.
When she told the Mayo person she was going to give the phone back to her Mother, she said, "BUT, DEAR, YOU'RE 21!" Grrrrrrrrr!
As soon as I got the handset, the Mayo person just kept talking as if there was no transference. When I got a word in edge-wise and told her I didn't appreciate how she dealt with my daughter, that was the end of the call. Period. No chance to say more. Like I wanted too. I should've, but didn't, called and reported her. Why didn't I? I'm tired. I need to pick my battles. Over the years raising these girls, I've stamped out fires, slayed dragons, lost some battles, but won important wars on their behalf. It doesn't mean I won't do it again.
What I want to say to everyone, is my heart goes out to all of you, no matter if you are the one being cared for, or the caretaker. The simple tasks, like making those sometimes tedious calls, or receiving them, can turn quickly into a lot of work, requiring even more patience than we might have. Or not. Sometimes I find myself, or found myself, daydreaming about just losing it with one of these insulting, insensitive, ignorant, people, but don't. At least not yet
And, this type of thing, whether over the phone or in person, has happened many times over, and will do doubt continue to do so. But that call just really got to me; I'm just really sick of it.
There is just no place in this enlightened society for a person to be degraded by someone 'just doing their job'. Or any neuro-typical person or persons to degrade, judge, put-down, stare, or say hurtful things to or around individuals that have special needs. It angers me. Perhaps I'm still too idealistic. But, I'll take it, even if it stings a bit.