Friday, June 4, 2010

ups and downs

It’s been a busy week. Here it is Friday night, a quiet evening with Jim at Chess, and I’ve spent most of it paying bills and taking care of household business. It’s just taken me all week to get through this stuff bit by bit.

Granted not all of the activities were ‘work’. This afternoon I spent with friends and went out to a movie.

Low lights:
1 – wrist pain as a result of strain at dance class, but already getting better 3 days later
2 – low sleep as a result of wrist and getting up early for cat medicine, which thankfully is over! Jasper sees the vet next week and then we’ll know for sure if he’s healed ok.
3 – 3 hrs at dealer today to get spring in Chair Topper fixed, and to adjust hand controls, which now make car feel different (I’ll get used to it) Note that it took 6 business days for part to arrive. I’ll have to go back again with the new wheelchair to make sure it fits up there too, could need adjustment
4 – an awful lot of bills and paperwork to do, including form for Jim’s unclaimed CA funds
5 – hair cut and color appointment – as much as I love the woman who cuts my hair, I hate those 2 hour appointments, but I like the way I look

High lights;
1 – Padres won on Monday, and fireworks!
2 – Humane Society gave me a new project to do, organizing the photos for their Calendar contest
3 – 20+ of our favorite vacation photos are up on the walls, looking beautiful
4 – talked to Stephen on the phone one night
5 – saw the movie Babies, very cute and enjoyed being with friends
6 – knowing new wheelchair is being made, to arrive June 14, can’t believe it
7 – last but not least, a thank you to AARP’s magazine for the website – www.disableddiscounts.com . AARP has come through with some interesting money saving tips before, and their notes about this site interested me. There’s a fee, $25 for their service, which initially made me skeptical. But I do trust AARP to some degree, so I signed up. There may not be much on the site that will apply to me, but I’ve already found one hit that will more than pay for that $25 fee. Apparently SDG&E has a program for an increased medical baseline due to medical conditions, and paraplegia is on the list. Living near the coast this isn’t quite the issue it would be inland, but I could save some money. And I know others who would definitely save money. More later, once I’ve gone through the whole website.


And that was my week! In the balance, busy, but not bad.

Thursday, June 3, 2010

Wheelchair Dancing

FLASH BULLETIN – THIS NEWS JUST IN! The ETA of my new chair is June 14! Don’t expect to see me in the new chair that night though. Some modifications will have to be done to it, then I have to see if it fits in my Chair Topper ok, might need a modification there too. But hopefully by the end of the month.


I was never much of a dancer. As a young child I preferred school and reading, summer art classes or math classes, even playing music over sports or dance. As a teen I liked rock and roll like most girls, but I really liked square dancing and folk dancing most. During the summer, when the nights were warm, a large group of people would gather in the large courtyard of the Philadelphia Art Museum. Everyone would get into a large circle, holding hands, and then an announcer would start the music and call out instructions. Every other person would go one direction, and their partners would go the other. It had to be several hundred people. I was allowed to go with friends once in a while, if their parents were going too. It was exhilarating to be in such a crowd, with the music so exotic. I believe the folk dances were from all over the world. I’d be with my friend, then we’d go different directions, and wonder when we’d get back together again. Sadly, one year a young couple was attacked by a gang right after a summer folk dance, the young woman was raped and murdered while her boyfriend was forced to watch. And so the dances were discontinued. There wasn’t enough security, or a good way to provide it in such an open space.

I also liked square dancing. As a family we’d occasionally go on a summer vacation someplace like West Virginia, and stay at a lodge that would have square dancing. This was harder than the folk dancing, more complicated, but not impossible to learn. It wasn’t out in the open, like the folk dancing, but set up in barns or lodges.

In 7th and 8th grades the girls at my school (a small private girls’ school in Chestnut Hill Philadelphia) would be invited along with students from other local private schools, to attend dance classes at our nearby Cricket Club. The dances learned were things like the waltz and fox trot. I liked these too, but my interest then was more towards getting to know the boys than the dances themselves.

All of these experiences were pre-injury for me. Not long after my injury my class had its Junior Prom. I asked a childhood friend of mine to go (remember that I went to a girls’ school, so we all had to find our own dates) and I enticed him not by saying he and I would have fun together, and certainly not with the idea of dancing with me – but by saying he would meet other girls. I didn’t go to the Senior Prom.

I’d go to dance parties in college, but I stayed in the sidelines, even for something as free form as rock and roll, and no one tried to nudge me out of it too hard. I’m sure the words “leave me alone” were written on my forehead. Sometimes I’d help with serving drinks or taking tickets. I liked being there and was cheerful and happy, but didn’t feel comfortable wiggling my body around in ways that felt uncoordinated to me. I was pretty self conscious about my body pre-injury as it was, must be why I liked the dances with specific steps and rules, and it was only worse later.

In grad school I remember one painful experience of going to a bar with a dance floor in around 1980, with some grad school friends. My first husband, then fiancĂ©, was out of the country for 4 months and I had just started grad school and was trying a) not to be lonely and b) to make friends. I tagged along with this friend who wanted to go dancing. Honestly, I think she wanted a “home base” so that if she didn’t dance, she’d have company (me) and if she did she’d have an excuse to drop someone because she had to get back to her friend (me). It was assumed I wouldn’t dance. So, while she was dancing one time, and I’m sitting alone, a man came over to talk to me. OK, I’m flattered, and then he said, “You’re too pretty to be in a wheelchair.” This of course took a couple of tries to get across, noisy room and all, and I was pretty surprised (or why else would I remember this 30 years later). We talked a bit, about why I was in my wheelchair, and it was ok. He wasn’t creepy. And my friend did come back. But, it was the last time I went to a bar like that, meaning going to a bar either with the intention myself or the intention of others with me, to be looking for a pickup. In fact I’ve been to very few dances other than weddings since.

So, it was with some reserve that I allowed a friend of mine who uses a wheelchair to talk me into going to some wheelchair ballroom dancing classes. And though they haven’t been perfect, I have found that they’ve been enjoyable – most of the time. I have to qualify this, because yesterday’s class has to be my last one for a while. I hurt my wrist during the class, and with the class set up as it is, I can’t see how it won’t happen again. That perhaps deserves an explanation – suffice it to say that being a group class it would be hard for me to tailor the movements I do to pamper my wrist and avoid certain movements. Last night I felt like I had set my wrist healing back 2 months, that’s how badly it was hurting. Today I’m doing better, but taking meds, so it’s hard to know how injured I am still. But overall, it’s a fun feeling being out with a partner, moving around the dance floor.

I have to give Beverly Weurding a lot of credit. Only 2 years ago, she conceived of this idea of doing wheelchair dancing, and went looking for a dance instructor. By wheelchair dancing I mean an adapted ballroom or Latin dancing – waltz, foxtrot, rumba, salsa, tango…. Within a year she had found an instructor, a couple of venues, funding and interested participants and volunteer partners. In San Diego, there are now 2 places holding classes once a week, and for anyone who uses a wheelchair it’s FREE, with enough volunteers to go around. That’s pretty amazing, and I give Beverly all the credit.

The classes are in 6 or 8 week sessions, and last year I went to 2 sessions. The first one was so crowded – about 30 wheelchairs with able-bodied partners. I was lucky and got matched up with a very nice gentleman for the whole session. He liked to dance in general and saw an ad in the paper for these classes, and thought it might be a nice thing to do to volunteer as a partner for people in wheelchairs.

This first class was really too many people, and so another venue was found so that 2 months later the wheelchair dancing class was offered at 2 venues, and both classes were less crowded. The second series of classes I attended had about 8 wheelchairs, and so the instruction was better, and instead of having one partner the whole time, we rotated partners about every 5 minutes. We learned the waltz, the rumba, and the cha-cha.

Then I missed a few sessions of classes – because of my wrist, and then because I would miss too many lessons because of the Antarctica trip. A session just started last week, and I attended 2 classes of the 8 scheduled. Perhaps I’ll get back later in the season, but right now I can’t predict. My wrist has to heal again.

I will miss these classes, but at the same time, it isn’t that disappointing either. I will never be athletic, or want to dance competitively. I don’t have a partner to dance with emotionally. What’s left is dancing for exercise and companionship, and that’s enough for me, but not so much I’ll cry if I miss it. It is good exercise – more than you’d expect. You have to hold your arms up perpendicular to your shoulders, for the better part of an hour, and that takes energy. And moving your chair around for that hour lesson is definitely exercise over what I might be doing at home reading or spending time on the computer. I do exercises at home because I have to, not because I enjoy them. So anything that makes exercises more fun is worth doing!

You know, I would really really like to be able to dance, with my own special partner. I watch the couples dancing on the cruise ships, usually there’s a lounge with a swing band playing for an hour before dinner. Often there are 2 or 3 couples who get up on the dance floor and look so beautiful moving around. They look sexy and graceful. I wish I could be them! I think what appeals to me is the idea of a couple – people who know each other, are connected, and can move as one. I’m never going to get this from these dance classes. And I’m never going to get Jim out on a dance floor. I’m not upset with him about this, that’s just who he is, and I knew this way before we married.

Actually just like one might accept Jim for never wanting to dance, it would be good if people could accept the same variety in people with disabilities. Except that for wheelchair users, it’s the reverse – accepting those who want to dance. What if people in wheelchairs could go to dances – in high school, college, bars, weddings, wherever and be asked to dance just like anyone else? Wouldn’t that be wonderful? I think 2 things have to happen first – those in wheelchairs have to have more confidence and self respect, and those who might dance with them have to have a little courage, and be willing to go with the flow and adapt.

You should see the wheelchair dancing. At a demo I went to recently, 3 women danced with the dance teacher (waltz, rumba and salsa), and it really is elegant and beautiful to watch. If you go on the internet and google “wheelchair dancing”, you can see some very amazing teams at international competitions, even doing the tango! Some have pairs of wheelchairs, and not a 1 wheelchair plus 1 able-bodied couple. We’re not there yet, at least not in San Diego, and I suspect not in the US in general. But maybe one day. If you want to see some of the San Diego people try:
http://www.absolutelydancesport.com/page21/page21.html

This blog has been a tough one to write. I think this was draft number 4. I can’t praise Beverly enough, and I think it’s fantastic that she’s done this wonderful thing of bringing dancing to people with wheelchairs in San Diego. I truly hope this movement grows and succeeds. It’s not perfect yet, but I’m sure with time, and the energy of both Beverly and the instructor, William Valencia, eventually they will get everything right. I hate to say anything negative about the classes at all! I’m not sure the class is right for me, in part because I hurt myself yesterday, and in part because I don’t think of myself as a dancer. But it is fun, and I have no doubt it’s good for many people.

Tuesday, June 1, 2010

Bladder-Wrist-Cars

I wonder if it’s smart to put in my blog when I’m hurting, or not feeling well. A few people have asked me since the recent posting about my bladder, how I’m doing, and it’s nice to know people care! Actually it’s an odd feeling, because these are the kinds of times when I’m not usually likely to tell anyone, except maybe Jim, that I don’t feel right. I’m not used to people knowing about my little aches and pains. However, if I’m going to try to show in my blog what life is like with a disability, well, I need to write things down. This is what my life IS like.

Today I can say that I’m feeling well, as far as my bladder, stomach, and appetite is concerned anyway. Unfortunately, that irritation got replaced today by wrist trouble.

Seriously, I feel healthy again. My bladder washing worked – as it usually does. 3 or 4 times a year max I will have an incident like the one last week. I’ll change tubing and drink lots of fluids after wondering whether I have an infection. 1 of those times I won’t feel better and then I’ll take antibiotics. And for the past 4 years at least, I haven’t had to go past that and actually see the urologist for a bladder infection. My annual checkup, and new cipro prescription carries me for a full year. My situation is better than some, who get infections regularly. But on the other hand, I do have those 3 – 4 times a year that I don’t feel well and can’t figure out the cause right away. I’m so used to this pattern, that I forget how odd it might sound to other people.

Unfortunately I only had one day of feeling good. And yesterday was a great day – we went to the Padre game and saw them score a record 18 runs, and saw fireworks as well! OK, I don’t feel sick any more, I feel injured again. I won’t go into the whole long story today, I will reserve it for tomorrow when I have more time to write. And I need the night to think about this topic anyway. Suffice it to say, that I overdid it at my wheelchair dance class today, and my wrist is feeling like it did 2 months ago when I was sure I was headed to surgery. I’m quite irritated at the moment, and ready to cast blame everywhere (including myself I will add). Tomorrow I hope I’ll have a more level head about it all. I also hope that I’ll wake up feeling less pain.

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I do have one story that I wanted to add to the earlier post about cars.

I asked my 25 year old son, David, how many cars he’s driven in his lifetime. At first he was a bit exasperated with me, but then he started to count – dr ed, 2 as a teen, 2 of mine, Dad’s, Jim’s, Aunt Baba’s, Connie’s, Stephen’s, 2 he’s owned in SD, Amy’s, a couple of friends when he was the designated driver, then a few rentals – Seattle, OR, Wisconsin twice, and then he trailed off- and said 20 – 25 maybe, why, Mom?

I told him I had only driven 10 total in my life.

To which he said, “But Mom, it’s different for you!”

To which I replied, “Precisely, that’s my point, it’s different for me.”

Jim travels for work, probably about one trip a month, and most of those trips he rents a car. He’s also our driver if we get a car while on vacation. So, overall he drives about 12 cars a year, and over his lifetime it’s up in the 100s. I know I shouldn’t think about a comparison with Jim, he has been in many more cars than the average American.

That’s why I had compared myself to a 25 year old. David may be higher than the average person his age, he’s rented cars after all, which isn’t easy to do before you are 25 in most states. And he’s been the exclusive driver of 4 cars already, which is high too.

I was the exclusive driver of 6 of the cars I drove, which isn’t really crazy. It means changing cars about every 6 years average, which isn’t bad. It’s the ability to drive rentals and other people’s cars that makes the difference. And I’m sure for many this is a minor issue. But think about this the next time you get a loner car when your car is in the shop, or when you swap cars with your spouse one day, or your friend was supposed to be the driver but got drunk and so you need to get you both home. Think how easily you just slip into another car without thinking. And think what you learn about each of these cars even just by being a passenger. That’s the difference for me.

Tomorrow: wheelchair ballroom dancing