Learning to Adjust


Makiko, a black labrador retriever, is laying on the floor. The photo is shot from the floor so as to be on the same level as Makiko.
Makiko is exhausted!
As you may recall from a previous post, I have been losing a lot of vision lately and struggling with it. However, after I went through that “initial grieving,” I have been doing a lot better.

I’m working with a really great counselor with the Division for Blind Services (DBS). She is helping me figure out a lot of things from the psychosocial aspects to losing my vision, to the adaptive technology necessary to continue with my job, to the tasks that I need to relearn to continue to live independently at home, to figuring out how much vision really I have lost.

I did an Adaptive Technology evaluation on Saturday and learned a lot. I left feeling optimistic but also a little overwhelmed – what of this technology that is recommended will I really use? When will I really use it? How can I use it to its greatest capacity?

My job is unique because I do not have one office that I always work out of. I do have an office but I also serve 13 different high schools that I am constantly at. I have to sit in on ARD meetings and I have to have individual appointments at these schools and I need the technology to be portable and accessible in these environments. We’re working on this! The really cool thing about my counselor at DBS is that she is blind due to RP herself, so I look forward to talking to her to figure out what of this I really will need and how to bet use it.

We’re working on the adjusting to blindness aspect together. I’m getting there. I have a lot of support that makes this so much easier. I have a wonderful guide dog and best friend. She makes all of these obstacles easier. She too is adjusting though to what I can’t see anymore that I could previously and the level of care she has to give now to watching out for things that she might not have had to before. We might be having a follow-up from GDB to help with this transition. We shall see. My boyfriend and my Mom are also huge rocks. Steven is so gracious in helping me navigate social situations. We had two parties this weekend and he really helped me feel comfortable. Of course, he goes off and does his own thing with his friends but he always comes back to see how things are going, and for that I am very grateful. Mom has helped me figure out different organizational systems that I need to start using to be efficient at home. She also takes me all over the metroplex for all of my appointments and helps a ton with everything. Sometimes on Fridays I am just so exhausted from all the work that week, it’s nice to just “go home to Mommy,” and be in a safe environment where I don’t have try quite so hard.

I’m still working on scheduling my Low Vision Evaluation. I’m a little nervous to see what it says, but I already know I’ve lost a lot of vision.. so that helps a bit… but still, seeing the number of how much you DONT see is a little scary sometimes.

I’ll also be having an Independent Living teacher come out to my apartment within the next few weeks to start working on some of the things I’ll have to learn over again with this vision loss, such as how to make sure something’s fully cooked, or how to identify cans or bottles in the refrigerator that I’m not able to before. I’m not really sure what this all entails because I haven’t really done it before. I did have a teacher that came out several years ago for like a few hours but then she never came back for some reason. She did bring me oven mitts that go up most of my arm so I feel safe using the oven and this black/white cutting board.. so if I’m cutting an onion, I would put it on the black side for contrast, as opposed to the white side, but if I was cutting something dark, I would put it on the white side. I still use these ALL the time so I’m looking forward to what other tricks or things they have that could help me.

Also, we are going to work on Orientation and Mobility a little bit. Makiko and I are solid but there are two crossings that we would like an O&M Specialist’s help with to see what other safe ways we can cross the street or what else I need to do to advocate. I am hoping to use my previous O&M, Micha Moore. We’ll see if we can make that happen.

Last, but not least, I am going to make an attempt at Braille. I do not know how often I will use it, or if I will even be able to learn it. However, it is a tool that could potentially go in my toolkit and therefore I want to give it a shot. I do not foresee myself ever using it to read large documents, etc., but just to help find locations of rooms or identify objects, I think it might be useful. I am going through Hadley School for the Blind. It’s an online course.. yes, an online course. I told someone at work about that and they looked at me like I was a little coo coo. I don’t blame them, it does sound a little strange. The way it works is I had to order (free) this equipment through the Talking Book Library that plays these audio cartridges. Hadley School for the Blind sends these cartridges with the lessons along with books that I read, learn, do the assignment and send it back to the instructor. She then grades it and sends me the next lesson. I’m looking forward to seeing how this all goes.

Above all, my boss has been super wonderful. She is the one that reached out to others to figure out what SHE needs to do to help accommodate me and make my job accessible. She is always willing talk when I’m having a particularly bad day and she never acts like accommodating me or helping me is a burden. She is such a wonderful boss and I am so lucky to have her as I go through this transition.

So, we’re adjusting. We’re doing okay, we’re optimistic, and we got this.. just going to be a bit exhausting while we go through all of these evaluations and figure out all what is needed.

Good night. 🙂

My Psychosocial Battle with the Cane

For people with RP, I have heard and experienced there are two major things (along with a few others) that take a lot of adjusting, coping, grieving, etc. They are: driving and using a cane. When is it time to hang up the keys and not drive anymore? When is it time to start using your cane for both your safety and others? These are both two questions that I’ve dealt with a lot lately.I’d like to discuss the cane in this post.

For those without RP or another progressive visual impairment, it’s kind of hard to explain what it’s like. With that being said, I think my experience was a little different than most, because I have been in school studying the rehabilitation of individuals with disabilities and how amazing assistive technology is.

Transitioning to using a cane is a lot to deal with psychologically and social (hence the title of this post). Psychologically you are putting yourself out there with a clear identification that you are disabled. With RP, it is practically impossible,  in normal day to day interactions, for a stranger or peer to label you as having a visual impairment or disability. However, once you start using that cane, it becomes completely obvious. With that, many of your peers will be confused. If you wear glasses, like I do, some may not believe you and think you are faking it. Some may not really know what to think about it and stare. Most people don’t understand that you can be low vision… they think that there is either sighted or no vision, not anything in between. (Saving this more for another post).

There are some people that for some reason or another, can’t handle having others stare at your group when you’re walking and can’t stand that attention. Therefore, I know many people lose friends when they transition to using a cane.

It is also a note to yourself, when you feel that you need to start using a cane, that yes.. your vision is progressing. You always know that in the back of your head but things like this just make it that much more real for you and you have to go through another coping and adjustment period. That’s one thing about progressive vision impairments that make me wish sometimes that I just went completely blind all at once. There are so many different periods of adjustment. I just wish I could get it over all at once.

Imagine using your cane to get to your classroom. Sit down, fold it up, and then start taking notes on either a notebook or on a computer.  If your classmates aren’t well educated about low vision or aren’t really aware of your situation, there may be a lot of whispers and stares.

I have been very lucky to have the support of my family in almost everything I do. They are amazing. I think RP has been an adjustment period for us all, so I don’t blame them. But I’ve always felt uneasy using my cane around them. One time when I did start using it recently (after not using it or training with it at all for several years), I had it folded up as my Dad drove up. I hopped in the car with it folded up in my hand and he asked me if I carried it around everywhere. I replied that I had it with me a lot. He didn’t seem pleased. I asked him what’s up and he told me that it “makes me look more disabled than I am.” After he said that, a bunch of red flags started going off in my head. First of all, we really shouldn’t care what others think.. but I know I do. I’m the one that gets all the stares and questions and has to deal with it anyway. Second, I do have a disability and my vision is pretty darn bad. There’s no way around it. Even though this took me a while to reach, I would rather be safe than sorry.

I didn’t think Mom was comfortable with me using it either but recently we got into a discussion about it and she told me I could use it whenever I wanted around her and that if my Dad had problems, just tell him I do really need it. That was so comforting. I tried this out recently.. I was going to travel with a co-worker who I’m not used to and therefore was not entirely comfortable, in regards to mobility. I decided to bring my cane along and use it. I’m so glad I did. I was able to navigate things independently and not have to worry. It was really nice. However, when we were headed to the airport my Dad asked why I was going to use it because airports are so brightly lit. Well, that’s not necessarily a good thing and it’s mostly the peripheral vision (or lack thereof) in this scenario that’s a problem. After I explained a little and my Mom stuck up for me too, Dad understood… I think. He supports me so much with helping me with rides and so much more.. I know it’s just because he doesn’t understand and wants the best for me.

Most everybody has known me as a fully sighted individual so making the transition to using a cane more was tough. After I ordered it, I started using it more and more. I did get a lot of stares (especially when I wore glasses) along with questions from people. But I felt more comfortable. I didn’t have to constantly scan looking for obstacles, and I felt more relaxed. It also helped navigate through crowds because people knew that I didn’t see very well, signaled by the cane, and they moved out of the way.. making it just a little bit easier.

Equipment, regardless of what disability you are using it for, is often hard to start using.. especially if its something for mobility like a cane or wheelchair. However, I think that it really is a matter of “better safe than sorry,” and if it makes more at ease, comfortable, and feel safer.. I don’t see why not. 🙂 I’m getting used to using the cane more, and so is my family and friends. It’s working out! 🙂