Today is a day for which Phil has been waiting for a very long time. He had a 2:00 PM appointment to get his dialysis catheter out. Floater nurses had trouble with his graft at dialysis clinic, so he was also going in for an ultrasound of the graft. Since then, the graft experts have had no trouble using it to dialyze Phil, so it should be just a formality. Then he came home to the box carried into our living room by the UPS man. Our reader came tonight to read the instructions for what is in it. Phil found a recumbent exercise bike on sale and wants to have the kind of cardio vascular work-outs in the winter that bike riding affords him in the summer. He’s used the regular, upright exercise bikes and isn’t a fan of how uncomfortable they are. That makes two of us. Phil is also trying to convince me that I’d be able to use it and enjoy exercising while listening to music, working with my phone, or whatever. I’m skeptical, hate that sweaty, out of breath feeling, but we’ll see. Apparently the reviews said there were people who did it, and the bike was so comfortable they lost track of time. I can’t quite imagine that, but whatever. Phil definitely got it for himself, and if I like it I’ll be surprised. It’s not like the iPhone of which I like the basic premise of what it does but dislike trying to learn a new method. I swam, because I didn’t feel myself sweat and by necessity had to regulate my breathing. But until I am no longer working with the current black one who is afraid of bodies of water, swimming is out.
If I sound cross today, it’s because I am. As much as I love Christmas time with extra gigs, music, and lights, there’s a part of me that just wants to hibernate. It wasn’t helped yesterday when I got a text from a friend regarding a gig at Mall of America a week away. I called her a week and a half ago to see if she was available. She told me she’d get back to me right away if she couldn’t do it, so I could find someone else. When I didn’t hear from her, I thought everything was a go and texted her to remind her that I definitely needed to know. That was when she texted me back and said she was sorry she couldn’t do it. Since then. I am grateful to have come up with someone who can help. A blind man was famous (or infamous depending on your point of view) for saying blindness is nothing more than a nuisance, but this whole affair has brought to the service some definite issues about how sometimes blindness is just a pain in the butt! .
Most of the time, we manage fine planning ahead for things for which we need assistance. This falls into one of these gray areas, and it wouldn’t surprise me to get a few responses from blind people who wonder why I need help at gigs like this. Yes, for those who don’t know, some blind people get their kicks from acting superior about how they could do this or that independently and telling me that I should be able to as well. I have observed sighted pianists who can handle both the playing and the sales, but I believe strongly that it takes eye sight to do it. The table isn’t always close to the piano, and people don’t want to disturb me while I’m playing. It really takes someone right there to answer questions about the prices etc. Then there’s finding my way. At IDS, the woman who sets the dates and times meets us there, and I can use sounds and my dog to get close to crystal court if I am alone. It’s much nicer to be driven there and have someone for Zane to follow who gets us right where we need to be. Many of you probably know Mall of America is the biggest mall in the country, and of course, details are sent through the mail with a map highlighting where we are supposed to be. I could take the bus or metro mobility there, but once there, I really need someone who knows where we need to go. Some of you have heard me talk about how frustrating malls are, because they aren’t covered under the Americans with Disabilities Act. Store clerks have to help people with disabilities, so going into a store is no big deal, but malls do not have to provide help and rarely do. And to those staunchly independent types who insist I should be doing all this myself, pardon me if I don’t want to wander around asking people who can’t give directions to tell me where to go and then try to guess how to do it. There are just some times when we need help, and this is one of them. I can handle gigs at the Malt Shop, because the CD’s are on the piano itself. I know my way around there pretty well, it’s a small environment in which help wouldn’t be far away if something went wrong, and people are generally honest about giving me the right amount. I’ve never been cheated or stolen from at the Malt Shop. But these Christmas gigs with tables far away from the piano, the noise in these environments, etc. it takes eyes to figure out what’s going on. Last year at IDS, we had a woman come begging for money. My sighted assistant spotted a sandwich shop not far away, took her there, and bought her a sandwich himself. I offered to contribute money toward her sandwich. I don’t like giving cash to people and would rather buy them food. I’d wouldn’t have been able to do anything like that without someone there. I would have felt vulnerable wondering if this person was going to get aggressive if I said no, since any pan handlers are mentally ill, The woman tried to get more out of my friend “for my baby”.
Speaking of the mentally ill, I’ve had a couple of really disconcerting incidents on the bus the last couple weeks. Those who listen to my audio boos know about these so might want to skip this part. A week ago I boarded a 14 and soon learned there was a mentally ill guy on the bus. Because I have a dog, I am often targeted by these people. It doesn’t matter how much training I have with people who are mentally ill. When I am targeted with erratic behavior it’s still very scary. A kind passenger traded seats with me, so he couldn’t reach my dog. This guy when from making cooing noises at Zane to screaming at him. I had to walk by him to get off the bus. At first he tried to grab my hand, and when I hurried on my way he lightly punched my arm and yelled “get out of here!”. I called customer service, and yesterday talked to the driver’s manager. The driver didn’t hear anything that was going on. I thought passengers informed him, but apparently not. The driver was instructed to be the captain of his ship and be more assertive. I learned that it would have been OK and perfectly within my right to call 911 if I felt unsafe. Other passengers shielded me as we rode, but it really frightened me that I had to walk past this guy. One blessing was that he’d was on my right and would have had to go through me to get to Zane who was on my left.
Another blind friend and I were riding on an 18 a couple days before Thanksgiving. It was crowded, and although I tried to get a forward-facing seat to protect my dog, it wasn’t available. We were assigned seats across from each other, which is the worst place to put two people in sideways facing seats with dogs. The dogs lie in the aisle and narrow it significantly. Luckily we were on a bus on which there are hollow areas under the seats. If I feel Zane pulling to go under there, I know some pig has left something Zane feels like eating. But if the area is clean, it is a nice place to put the dog with my feet in front of him for protection. A woman in a wheelchair needed to get off the bus. Zane was tucked under the seat, but my friend decided to get off and get back on the bus. I’ve made this decision under different circumstances and understand it. Once the woman exited, my friend and his dog re-entered, and I was appalled to hear a man swearing because “that guy with the dog is getting back on the bus.” To make it worse, the person was Black. If anyone said anything like that about someone in their community, they’d be the first to cry discrimination, and rightly so. But apparently it’s OK to say that to us?
I have felt vulnerable a couple times lately in another way. I have this key holder with a beautiful green stone my mother gave me, I love carrying keys, my remote control for the security alarm, Tanner’s dog tag, etc. on it. The stone is decorative but also keeps the stuff on the holder. Twice this past month, the stone has come unscrewed in my pocket Unbeknownst to me. Then once out of the pocket the stone has fallen off exposing the pointed end of the holder which caused keys to fly off on the floor in all directions. The first time it happened on our porch as I was trying to go to Mass, and the house key stayed in my hand. The second time was right after the encounter with the mentally ill guy on the bus, and every key scatter all over the back deck. I had to make an urgent restroom run so couldn’t easily bend over to crawl and find the keys. I used my phone to call my cleaning guy who was just getting ready to leave our house. I’m so glad he was there to open the back door and help me scoop up the keys. Also fortunately, none of the keys fell through the slats in the deck. Phil suggested I make a trip to the hardware store to obtain a rubber stopper, such that if the stone fell off, the keys would remain. It was the same principle as the little stoppers on the backs of earrings to keep them from falling out of the pierced ear. Surprisingly, the hardware store had no stopper, but they had something better. There’s a chemical called “Lock Tight” they used after making sure the stone was screwed on firmly. This keeps the stone in place and the keys as well.
I am glad that I’ll once again be putting my Kragnes Christmas card on the blog, because it’s not coming very easily to me this year. Phil gave me a few ideas over supper tonight, and I think I’ll be able to come up with something. In preparation, I reread all of the Christmas letters from 1998 on, and the only one I don’t have is 2005. If anyone still has a copy, I’d love to have it in an e-mail for my collection. It was the one for which I used “Up on the House Top” and gave a musical tour of the house. This will probably be the last blog entry before the Kragnes Carol, so look for that in the next couple weeks.