Thursday, May 26, 2011

Dee update

Yesterday, Dee and I went to the orthopedic vet specialist. They did a physical exam first, where the vet said she has discomfort in her neck and pain in both shoulders. They did x-rays, and they found some arthritis and shoulder instability. She is going to have hobbles, braces to restrict shoulder movement, and she will have exercises that I can help her do. She might have physical therapy too. I talked to GDB yesterday, and they authorized $1,200 and said to call when it's about to run out. Dr. Patty asked me if i was hoping GDB would fund partial or all of it. I told her all of it, and if that didn't happen, Dee wouldn't receive physical therapy. Each PT session is $1,500, and for the eight that the vet wants her to have, that is $12,000. There is no way I could afford even one session.
It doesn't look good. Dee is in pain; the vet says the three to four months not guiding, and not playing or moving much should fix it. But I am weary of it happening again, and I don't want to cause Dee further pain by forcing her to guide. There is too much pressure and strength needed from the shoulders and neck, and I don't know if it will be safe.
I'm starting to ask people I know if they would take Dee or know someone who would in the probability of her retirement. I also have half of my application submitted to GDF; I just have the eye doctor report and video to shoot before it can go for review.

Tuesday, May 17, 2011

be thankful and shut up

In all of the communities where I find myself belonging, there is a theme of gratefulness and silence.
First, people with disabilities should be grateful for everything. If I refuse assistance from someone and am with able-bodied friends, some say I should be thankful for their kindness. Well, I'm not. If I say I do not want or need assistance, I expect the person to back off and say ok, not continue to grab my arm, push me, insist I can't do it by myself. I'd be grateful if able-bodied rules about personal space applied to me. There is also being grateful for services and access. At the beginning of my freshman year, well a week before it started, I put in a request for a reader for my French book and workbook. Since I had filled out accomodations forms with a reader as a possible accomodation, I didn't think it would be a problem. I went in to DSS my first week to see when I could have my reader, and the secretary happily hands me tapes. I ask her what these are, and she says, the first chapter of your French book and workbook. Me (in my mind) what? This is *not* what I meant by a reader. I tell her I thought I was going to have a reader. She says, "there is a reader on the tapes. He read the books and recorded them." I gave them back to her and explained that a reader is someone who will sit with me and read the book, spell words, describe photos, ETC. She said, "but they're already done." I told her that the tapes would not be helpful and I would like a reader. She proceeds to say they've never done that before, and the other blind students liked the tapes. I'm not all blind students. French is a language I've only had for a semester, and I need someone to spell new words and tell me which accent marks go on the letters. In this put upon tone, she says "i'll see what I can do." Three weeks later, they finally found a reader for me. Thank God the professor was understanding and gave me an extention because of accessibility issues. By that time, I had four chapters of workbook and lab work to do. Any time after that when I needed a reader, I found the person before the class started or the first couple days of class and sent them to DSS to fill out the paperwork to work for me.
Another area where I see the grateful attitude is adoption. I'm not bashing all adoptive parents; there are many awesome ones who are empathetic and do great work with their kids and the community. But there are many others who think adoption is the best thing and first moms and adoptees should share the same happy clappy emotions. Well that's not true for me and other adoptees. I started asking questions about Paraguay when I was in junior high; my mother says why do you want to know that stuff for, it's borring. She doesn't know anything about Latin America and has no desire to learn. I tell her I feel as if I'm missing culture and stuff and the feelings are dismissed because she says, "you're white and live in our family." I am allowed to have these feelings and questions, and they should not be invalidated because she is happy with everything. Then, there is adoption in conversations. It comes up with friends and strangers alike. I always say, there are many issues to be considered in adoption. I think they all look at me with surprise or something because they say, "huh? What issues?" There is whether people want open or closed adoptions. With domestic ones, that is a possibility. However, in international adoption, that is another whole kettle of fish. There are so many corrupt agencies who find children on the streets or take them from families and relatives who want them. There is so much money and agencies who are looking out for themselves and the children. there are often not records and a family history. I do not have a birth certificate, medical history, or anything from my time in Paraguay. It makes things complicated when I need to give official documents, like getting state Id and stuff. In the conversations, people are usually either I didn't think of that, or but you got adopted and don't live there anymore so be happy about it and don't worry about adoption issues.
But that is not who I am. I have always cared about justice and equality, and being a sociology major strengthened that part of me. Sometimes fighting for my rights is tiring, and it would be nice just to curl up in a ball and not think of them. However, I won't stop fighting for myself. I owe it to myself to make sure I have the access I need, not the access someone else thinks I need, to the materials and services that will allow me to be successful. Maybe the next student will not have as difficult a time because of something I said. I do it for my students, especially the children, because I want them to see that they do not have to settle just because someone offers a crumb of accommodation. I will not shut up about adoption because the system needs to change. I'm new to adoption advocacy, but I want to help in any way I can.


I am now a college graduate!!! I graduated last saturday with a B.A. in sociology and a B.A. in journalism. It was a nice day, thank God! Bloomsburg had been getting torrential downpours for the past two weeks or so, but it was sunny all morning. I decided to wear a black dress under my gown and sparkly brown flats, because I just do not like heals; I already have ankle issues, and heels on the bricks on the quad would not have been a good idea. I also had a graduation cap for Dee; she was not happy having something on her head, but everyone thought she was adorable. We took the shuttle for the last time to campus, and we got in line to process. I wasn't really sure where I was supposed to go. dr. Samson, the chair of sociology, saw me and asked me if I knew what was happening. I said I didn't, so she offered to walk in front of me and tell me when to turn and stuff. Dee did well guiding in the procession; she didn't stop to sniff the people clapping and cheering on either side of the isle, and she wasn't distracted by all the noise. She had trouble following though, so I'm glad Dr. Samson was talking to me. We were at our seats; for some reason, Dee didn't want to back up for me, so it took a few seconds to get her into the row instead of lying on the walkway. After that, there were some borring speeches, and we finally got to go up and get our diplomas. Dr. Samson walked beside me this time, and we stood there chatting in line while we slowly moved forward. While I was in line, I saw Dr. Omori, the professor I had for statistics and quantitative research methods. She surprised me by coming over and giving me a hug and said great job I didn't know you were graduating! We made it up the stairs and across the stage without issue. It took me a few seconds longer than everyone else because we were supposed to cary the diploma in the left hand and shake people's hands with the right, but I had to stop each time, drop the harness handle, and switch. On the way down from the platform, I saw my English professor as well as the professor I had for Italian and Spanish. After some more borring speeches, we were allowed to leave.
I was kind of sad because my mom wasn't there; she was sick and couldn't come, so the other family who was going with her didn't come either. However, my boss and his wife were there, and I was so glad to see them. I've worked for him, teaching people Braille, assistive tech, and other blindness skills since October of my freshman year. He's seen me through all three dogs, my depression crash, and everything else. We've spent at least 100 hours on the road, so we've had a lot of time to talk. I'm glad he never gave up on me, even when I was in the worst part of my depression and barely speaking to anyone.
Now I'm back in Altoona at my mother's house. I hate being here!!! She treats me as if I am a child. She keeps asking me if I'm going to eat; I don't eat on her schedule. She eats breakfast, lunch, and dinner all within seven hours. I can't eat like that; if I eat breakfast at 11, I'm not hungry again till 6 or 7 at night. She says she's not a 24 hour kitchen, but I fix my own food so it shouldn't matter to her when I eat. She is also the same way about Dee. Does Dee have water; make sure you give her enough food. Does she need to relieve. I take her out four or five times per day, but my mother thinks she should go out every two or three hours.
We now have a possible idea what is wrong with Dee. When we went to the vet last week, I explained again that she was having trouble putting pressure into the chest strap, going uphills, ETC. They pushed on her and pulled her, but they said she wasn't yelping or flinching or anything; I said that didn't mean much since that wasn't her usual reaction. They took her outside and had her run circles in the parking lot; they came back inside all surprised because they said that was the first time they had a dog refuse to make left turns and run. After that, they took her to x-rays where she surprised them again by being perfectly still and not struggling in position. They found a pin-sized bone chip missing/floating in her left shoulder blade, and there is a separation between the servical vertibre 6 and 7, the ones from the neck to between the shoulder blades. Now, they want her to have a myelogram; they put her under anesthesia for awhile and put dye and stuff into her spine to see if the nerves are pinched. If they are, she will have to have surgery to have the disk removed so the two bones won't be separated anymore. Now that I'm $350 poorer and have to spend more of my scholarship money on vet costs, I might be staying here for the summer. I wanted to go to the NFB convention in Orlando, but if Dee has to have surgery, I won't be able to go. Please pray and send good thoughts for Dee; I miss having her work for me.

Sunday, May 1, 2011

selecting my spoons

Here is another post for blogging against disablism day.
Christine's spoons theory basically says that you start the day out with a certain number of spoons, choices energy, and everything else that goes into functioning. Unlike healthy, able-bodied people, it's about making choices of how to accomplish everything. I am totally blind, have mild scoliosis and joint pain, and have depression. The depression manifests itself as inability to concentrate, little motivation to do anything ensomnia and overall tiredness. Healthy people tell me just go and do it; it's no big deal. My response is always, if i could think myself emotional, energetic, and able to do whatever I want, I would do it in a second.
Here are some choices for the day.
First of all, do I want to get up; the answer to this one is always yes, even if it is only to feed and relieve my guide dog. Next is the choice to go to class; currently it's nearing the end of the semester, and I have to go to class to turn in papers, get final notes, and take exams. Do I want to take my cane, which could be painful depending if my muscles are stiff and my joints don't want to move as easily as they should, or do I want to take my guide dog, who has lately not been guiding well. Do I want to take the long way to class or take the shortcut which gives me an extra five minutes? If I am feeling disoriented, it has just snowed, there is noise and a lot of people around, I sometimes take the long way because it is a straight line and a right turn two blocks from the bus stop. If I have managed to sleep for more than four hours and have had water in the morning, I am more likely to take the zig-zag path across the quad and won't be confused by campus life. The second decision for the day is do I want to get lunch on campus, and if so, where? Sometimes I am just too exhausted by 1:30 that I just head straight to the bus to go to my apartment, even though it is not good for my health or concentration to skip a meal. If I decide to eat on campus, I usually end up at the pizza shop because it has only one line for ordering and checkout, unlike everywhere else that has food; this limits me to unhealthy pizza, strombolis, or wraps, but if i eat at all, it's a good sign. The other place I might choose is the husky lounge; this has sandwiches, grilled food, smoothies, entres, vegetables, and to-go food like apples and bananas. I just can't deal with all the people some days; I start panicking about it an hour or so before I have to go there. I sometimes feel dizzy and I have to keep asking people where the line is and if I am at the end of whatever line I want. Once I get my food from there, I have to find which, out of four registers, is open today, and I sometimes get lost in the place. Also, Dee is sometimes distracted by food on the ground and college students who think it is funny to throw things at her or anyone who wants to approach and ask invasive questions about my blindness or my dog or share info about some disabled person or their pet who died last month or last year. Once I get home with my food, I go to work; I help blind children and adults learn to read Braille, use technology, or learn daily activities like how to cook, tie their shoes, or use the phone. Most days it is children, who usually take the rest of my patience and energy. By the time I get home, do I want to eat dinner? Going to campus to get food is almost always a no; that is time waiting for the bus, a 10-minute ride to campus, at least a 10-minute walk to food, dealing with all the people, and the walk and bus back to the apartment. Since I was tired earlier and went to work, I didn't have time to find someone to take me grocery shopping, so I barely have food in the apartment. I pop in a frozen pizza or ramen noodles, more unhealthy chemically-laden food, or I place an order for delivery. Next is homework. I usually can't concentrate for more than a half hour at a time, which is exacerbated if I do not like the text of the books or research I am reading. It takes me at least an hour to write a page, and when I have to rescan articles, find all of my audio bookmarks, and figure out how to organize the info, I'm exhausted again. This leaves me no energy or time to socialize, which makes the depression worse since I've isolated myself from other people. My thoughts are racing like a hampster on a wheel, which means I get 5.5 hours of sleep on a good night and less than four on a bad one. The cycle of selecting which spoons I can give up starts all over again the next day, and able-bodied neurotypical classmates and friends wonder why some days I choose to sleep on the weekends and only leave to relieve and walk Dee.

sad Dee update

Dee is the best guide dog I've had. She has been my travel buddy and helper for the past 1.5 years. I got her NOvember 2009, and we went from Portland Oregon to school. Two weeks later, the semester ended, and we moved to my mother's house for a week for Christmas. After that, we traveled to St. Louis on a 26-hour greyhound buss ride to attend Urbana a global missions conference attended by 20,000 college students. That was the first time I saw Dee's wonderful skills. After the first few hours of being stressed, she handled everything beautifully. Her pace was fast, but she slowed when she needed to. Her head was up, and her whole body was wagging. My roommates and others were amazed at how calm and focused she stayed. She even slept through the worship music which was loud and many people were dancing and jumping up and down.
When Urbana ended, we went to Philly to see friends and moved back to school. In May 2010, I moved to Minneapolis to attend BLIND, Inc. I wrote before about her reactions to a close call with a bus. Also while in Minneapolis we went to the Minnesota fair, an 8-mile hike, and just did everyday activities like going to dinner and movies with friends and grocery shopping. We moved to four different apartments while there and camped in Wisconsin, flew to Dallas to a huge hotel with 3,000 other blind people, and traveled to Chicago and Harrisburg to speak about blindness training. Dee was wonderful through all of that travel and change, so I hated sending this email to Dee's puppy raisers.

Hi Shelley,
Dee is not doing well. She is still a wagging tail dog and glad to see people and be petted, but she isn't guiding. I think I told you we fell on the ice a couple months ago. We went to the vet where they gave her prednazone for the inflamation. It helped for a little while, but as soon as she was off of it she was walking funny again. We went to the dog chiropractor and he adjusted her; it gave her stronger pull in harness some of the time but not enough to be constant. We are having x-rays done; they think it is a nerve or disk injury since she is a little flinchy when they pull her paws forward and is jumpy when I pet her in the middle of her back. My roommates said it sometimes looks like her back legs are going to give out when she is playing with her kong. She is very slow all the time and has difficulty getting out of the way of fast-moving people and traffic. A couple weeks ago, cars were coming up right behind us and she didn't speed up at all. She also has difficulty going uphill and making turns. Right now I am waiting for GDB to decide whether they are sending an instructor here or if they want to bring her back to them for evaluation to see what is wrong and if she can continue working. This makes me sad; I miss my fast-paced energetic girl who had plenty of initiative for everything especially crowd and traffic work. I take her with me if I am going to one class, but if I am doing class and errands afterwards, I leave her home and bring my cane.
I graduate next weekend, and I can't wait to be done here. I got Dee a doggie graduation cap, and I am going to have her guide there since it will be a short walk.


I thought it might be her nails so I trimmed them. She had a paw pad issue before, so I added paw healing balm and musher's secret but that didn't help either. She is also taking joint supplements that I get from International Association of Assistance Dog Partners Part of me says the medical issue can be fixed; we just don't know what it all is yet and haven't found the right combination of treatment. The other, more practical, part of me says I know the signs of retirement and it won't be able to be fixed. She runs away from and actively avoids the harness. She wags her tail while working, but it isn't as much as it used to be. She doesn't take the initiative to go around obstacles or find a clearer pathway to somewhere. If it took us 10 minutes to get somewhere before, it now takes at least 15 on a good day. I can no longer trust the dog who saved my life from a bus that came too close on the relatively quiet streets of my small town, let alone in a city with all the traveling and moving I need to do in the next three months. Please pray for Dee and me to make the right decision for our partnership.