Monthly Archives: April 2013

Losing yourself

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So I volunteer with a program that goes to nursing homes and does art therapy sessions with elders with dementia. Yesterday night was our big, end-of-the-year art show. As a student leader, I do no have a partner that I meet with every week. Rather, I help lead and facilitate the weekly sessions. Because of this, and the fact that I’ve only been involved for a year, I haven’t known any of the elders over a very long period of time. I seriously love each and every one of them, but I haven’t been around long enough to see the changes that the disease has been forcing on them.

Last night I was helping direct pairs of students and elders, and helping people get in and out of the elevators and find their partners. My nursing home was one of the very last to arrive, and they had to make two trips in the bus to get everyone there. In the second bus, there was a woman who I didn’t have on my list. One of the women from the nursing home told me that her name was Jean, and that she’s been active in the program in previous years, but has gone downhill recently and had to stop coming. Because she wasn’t a regular, she didn’t have a partner. She was the last to come up the elevator to the show, so I offered to sit with her and take her around to see the art.

Jean was really struggling. She spent most of the show half asleep, and the other part of the time she seemed to be in the throes of hallucinations. She would reach out a carefully rearrange things on the table, then act like she was kitting or sewing, or picking things up off the table to set in her lap. She did not talk beyond a few incoherent mumbles and did not respond to my talking to her.

After a brief ceremony where the volunteers and elders were recognized, I took Jean around in her wheelchair to see the art, including a piece of her own. Again, no reacting and continued hallucinations. I kept talking, though, and showed her pieces some of her friends had made. As we were going around, I had a woman come up to me. She was ecstatic to see Jean, and really excited that I was helping her around. She thought I was her partner. I told her that I was actually a leader, and was just filling in. This woman started telling me about Jean. Jean before the disease took its tole.

Jean loved to tell stories. She would sit there during art sessions and talk her partner’s ear off, telling them about her day, about her past and family, about something funny another resident had done, or telling them a story that she had made up on the spot. She had a definite way with words. And her art was amazing. She was very detailed and illustrative, drawing figures rather than abstract shapes. She loved the art sessions, both for the people she got to see and the pieces that she made.

I could hardly believe it. I just couldn’t match up this description with the woman I was pushing around in her wheelchair. It was as if she was describing a completely different person. In a way, I guess she was. Alzheimer’s has taken away the person she was before, and has left this sleepy, unresponsive woman in her place. This was the first time really where the disease had been brought home to me, hearing stories about how she used to be and seeing how she is now. It made me so incredibly sad, especially when I thought of the fact that the person she was is probably almost gone for good. That woman who told stories and drew amazing pictures has disappeared forever. And that’s going to happen to all of my other amazing artists that I love, given enough time.

We finished going through the artwork and went downstairs to wait for the bus. She was still hallucinating, but seemed a bit more alert. She actually opened her eyes to look at me where I was sitting in front of her. She started to talk. I couldn’t understand almost anything she said, but I tried my hardest to respond appropriately and keep talking to her. She seemed happy to just have someone there listening and paying attention to her.

The bus finally came and I took her outside to board it. As the worker backed her until the wheelchair lift, I told her that I was really happy that she had kept me company during the evening, and looked forward to maybe seeing her at the next art session if she was feeling up to it. She looked right up at me and told me that she would like that. She then smiled, shook her head, and told me that I was a beautiful girl. I almost burst into tears right there. Here was a woman who was struggling to retain herself in the face of a devastating disease, and who was clearly losing that fight, and yet when she came back to herself for a brief time she still was incredibly kind and appreciative. Most people would have seen Jean and written her off as a vegetable, not worth their time. But with just a little attention, some kind words, and a listening ear, she returned enough to offer some kind words of her own. She just demonstrates to me that every single person is worth our time and effort, and that even the tiniest things can be regarded the greatest victories.

I was so glad I got to spend time with Jean, and I genuinely look forward to doing so in the future. Hopefully she’ll feel well enough to come to art therapy every now and then!

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Is anyone else sweating to death? …No?

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Oh my goodness, the weather. So it’s finally nice out. This past weekend was great — 60’s to high 70’s, breezy, clear. In short, amazing. And then the actual week started, with the temperature getting up to around 80. Okay, I would prefer the 70’s, but I’ll take anything over snow…And then the storms came, and with them: humidity.

The humidity. Holy crap. In the past year or two, I’ve thought that I might be more sensitive to humidity than most people, but it’s never been a huge problem. But now my medication has been reduced for my memory, and I’m becoming more aware of all sorts of symptoms. The symptom today is my sensitivity to temperature and humidity. I can tell you how humid it is before setting a foot outside. I will lay in bed all night sweating to death if the temperature is higher than about 65 and there’s any sort of humidity. I’m dreading this summer. I don’t know why I’m looking at schools out west — I would never survive it.

It’s really frustrating because my roommate just doesn’t get it. I talk about how miserable I was all night and she’s like “It was perfectly fine in here last night.” Well, for you it was. You don’t have a disorder that’s wreaking havoc on your body all the time. For someone like me with fibromyalgia, a single degree in temperature can be the difference between being comfortable and being miserable. A tiny bit of humidity can make trying to sleep a hell. (In general, I think my roommate might also just be very insensitive to a lot of different things — sounds, smells, temperature, sight etc. I’ll hear things that she never notices, and I’ll smell things she never will. Or, it could be that I’m way more sensitive to stuff like that because of the fibro. Or it could be both. It’s probably both. We’ve also been a bit rocky this week because she likes to be very neat, and I’m not so neat when there are a lot of things going on and I’m stressed out. I came back from class the other day with all of the stuff I had in the living room piled on the floor outside my door, even though it wasn’t that much, but it included my laptop and camera. I was pissed. I understand she likes to be neat, and I try to respect that, but she also needs to try to understand that I’m not a neat freak. The way for her to deal with needing things clean is to just ask me to put things away, not pile it up. It’s not like I would ignore her — I would do it because I would know it was bothering her. And I was about to clean that stuff up anyway because my parents are coming tomorrow. She just couldn’t wait. Ugh. Anyway, back to humidity…).

I really hate when I bring up an issue like this and get an incredulous, unbelieving look from her and others. They just don’t get it. Just because they’re unaffected by something, they can’t understand that for others that same something might be a huge issue. This has been a problem between my roommate and I for a while. She tends to time her laundry poorly, so she’ll be running the washer and dryer past midnight some nights. It doesn’t bother her at all. For me, it’s torture. I can’t sleep because of the sound of it. She just doesn’t get it, even when I explain it to her, and she still does it even though she knows it bothers me. Same with smells. There have been times where she’s made the most rancid-smelling salmon. I’m pretty much vomiting from the fishy smell, and she doesn’t smell anything at all. I’ve tried to ask her not to make such smelly things, but she just doesn’t understand. She can’t smell it, so she thinks I’m just throwing a fit over nothing.

Blah. I just need to live by myself. I’m at that point. I love my roommate to death, but especially with all of these unique fibro symptoms, it would be a lot easier if I just lived on my own and dealt with them on my own. That way I’m not inconveniencing anyone, and I can take care of myself. Just a few more weeks until graduation, then I get my own apartment in the fall! Thank goodness!

Blah, stress

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I guess I haven’t written in a while. It’s been a super stressful week or two. The biggest source of stress: scheduling.

So I’m staying one semester past graduation to finish some art credits for art therapy graduate school requirements. My first hurdle was getting a time ticket to register, since the registration office had it down that I was graduation and that was that. That process took a week, but I finally got my ticket and the all-clear to schedule for another semester.

Next: figuring out what classes to take. That took a week or so. I kept creating a potential schedule, but then would remember something that I had to leave time open for, or some reason I couldn’t take a class. But I finally got it, and with time open to continue doing my volunteering. Check.

Then I had to figure out how to register for them, as I did not have the basic art pre-requirements for any of the courses. I got into the drawing class I’m in currently by permission of instructor after submitting a portfolio. I thought that’s what I would have to do again. I spent a week and a half trying to get the art department to respond to my e-mails and get me the answers I needed. I literally went down to the department office seven times to try to talk to the secretary to figure out what to do, and she was never here. 10:30? “Oh, she left for lunch.” 12:30? “Oh, she’s not back from lunch yet.” 3:00? “She went home early.” 8:00 am? “She’s not in yet.” 1:30? “She’s in a meeting.” This went on for a week, then finally someone told me to go to another guy who’s an adviser for the art department. Went to him and he told me that I needed to fill out force-add forms. Force-add forms? I didn’t have to do that last time…

So I went and got the forms and filled them out, including all the reasons I had to take the classes and why other class sections wouldn’t work. Turned them in and the secretary (who was actually there as soon as I had gotten an answer!) and she told me she would e-mail me with the decisions on whether or not I got into the courses within a week or two. That was last Friday. Went in on Thursday to check and see what the status was on the decisions, because I’m really anxious about getting into the courses I need. They’re not making decisions until APRIL 22ND, after everyone has already scheduled. So not a week or so — three weeks. I seriously almost burst into tears when she told me that.

Here’s the deal: I need these classes now, so that I can apply to graduate school on time. And I need all fifteen of those hours, or I’m behind. And I’ve already signed a lease to live in an apartment off campus for the next semester. So I’m here, no matter what. When I was first trying to figure out if I could stay another semester, the advising office made it sound like it would be easy and no big deal. If I had known that I would get this much push-back from the art department, and have this many difficulties trying to register and get into courses, I would have said “Screw it” and taken courses at a university close to home.

Blah. So I have to wait two more weeks to find out if I’ve gotten into those courses. The stress continues. At least my work load has decreased a bit — last week was my hell week, with presentations, research paper drafts due, and exams. Thank goodness all that’s done ^^ And yesterday my roommate and I took a roadtrip to the Cincinnati Museum Center to see the museums and the Dead Sea Scrolls. The museums were cool (especially the Children’s Museum! It made me wish I were still a kid!), and we went to Newport to get dinner before our time slot for the Dead Sea Scrolls. The scrolls were a huge disappointment, though. The exhibit wasn’t set up well, and there was no regulation for flow through it. We were in there for an hour and a half and we barely saw anything. We did see the actual scroll, so I guess mission accomplished, but I would have liked to see more. Oh well, everything else was fun ^^

Hopefully I’ll find out about my schedule soon and my stress level will greatly diminish! After that I should be cruising to graduation!