The Raw Emotions

Sometimes, I just wish I could blend in. Folks, my emotions are pretty raw right now. I waited 9.5 hours from when I was super emotional about all of this to start writing but I’m still pretty raw. This is not a pity post, this is a “let’s get real” post. I have had stuff go on in the past and wanted to write one of these but then didn’t. Most days, I am proud of who I am, blindness included, so didn’t want to give off a different impression, whatever that may be. But fortunately, I am part of several online groups that have shown me that it IS okay to say blindness sucks sometimes and IT is okay to feel how I’m feeling.

I’m working on unpacking why my emotions have been so off this week and why a lot of things that are inherently involved with living with blindness and the guide dog lifestyle have affected me more than normal. I’m still working on this but this is what I’ve figured out so far..

A state agency moved into our office building this week. This was supposed to happen in April, then May, etc. We have a few office spaces and a lot of cubicles available and so they moved in. Change is hard and we had a pretty developed office culture. Now, we have to be a little bit quieter when out in the hallways, etc. Not a big deal, but still a change. With the move-in came a lot of people who left tons of carts and boxes in the hallway and absolutely did not understand about service dog etiquette.

A few months back I went to the Emergency Room because a staff member left a filing cabinet open and I went full force into it. I don’t always have my guide dog with me when going around the office. She stays on her comfy bed while I do what I need to do. Since then, our office management has been really pushing for people to be more cognizant of safety in the office, not leaving things in the hallway for not only myself but the other co-workers and consumers with disabilities, and making sure things are properly closed/taken care of. Now, I know it’s inevitable that while moving in things are going to be in the way and out-of-place.. but it’s still really stressful. Especially when I open my office door and there are things blocking me from getting out, etc. So that heightened my anxiety level this week.

Then there was the obsessive petting of my guide dog. Makiko is a very friendly dog and so I am very conscientious of who I let her say hi to and when. Almost every time when I’m walking up and down the hallway this week, someone from this other agency would try to do a sneak/drive by pet. Sometimes they would come into my office while I was at the copier, etc., to say hi to Makiko. Sometimes I would be getting ready to go and they would call Makiko. Sometimes even they would try to call her from across the hallway. I started by asking them not to distract/pet/call her. I also ignored them sometimes and gave them the “cold shoulder”. I even sternly said “That’s not ok” and explained how her focus on me is essential to her job and my safety. But it still persisted. As I posted on my Facebook, my tolerance for this kind of thing this week has been limited. I tried the education route.. didn’t work.. at least up until that point. Management scheduled a meet and greet for this morning so all night last night I was thinking of the phrasing and delivery for how I was going to efficiently and effectively express that distracting/petting/calling her is NOT ok. I found the Access and Etiquette brochure on Guide Dog for the Blind’s website and sent it to my work email to print. I had already told my management about the issue as well. I came up with what I was going to say in my head. Around 9:30am, I printed 15 copies of the Access and Etiquette brochure and placed them in the conference room. At 10:00am, the announcement was made to head to the Conference Room for the Meet and Greet. I harnessed Makiko up (even though she isn’t always harnessed for just walks around the office) and headed that way. One of the building managers stopped me and asked if she could pass the brochures out. BINGO! I said absolutely and advised her that our office staff already knew everything on there. She passed out the brochures and explained that everybody needs to be aware of this kind of thing. Then a few minutes later one of my awesome managers also made an announcement about BOTH the obstacles issue and the service dog issue. When it came time for me to introduce myself, I said a few sentences about appreciating them not distracting her, calling her, or petting her so that she can keep me safe. They seemed to all understand. THANK GOODNESS!

At this point though, I think my anxiety was already pretty high and i just didn’t realize it. I went back to my office to work for a little bit but then somebody said a few things that while directly didn’t appear to have anything to do with my disability, indirectly, they did. I was expressing how I had so much paperwork to go through and then comments were made that upset me, even though they were teasing. I’m not going to go into them here though because I respect this person very much. The point is.. why did they upset me?

I’ve been unpacking that all afternoon in my head and I think I’ve figured out most of it. I appear sighted. If I didn’t have my guide dog with me, you truly would not know that I had a visual impairment. I do not fit what society has in their minds of what someone who is blind looks like. With that being said, I do utilize specialized equipment and do need assistance in several areas, but most people don’t see this. People don’t hear JAWS or my screen reading software because I have a headset in or am behind closed doors. People don’t see me using my PEARL camera with OpenBook to read printed documents that are hard because it just looks like I’m using my computer.. etc. But what they don’t realize is that what would take a sighted person 15 minutes to go through takes me about 35 – 40 depending. And, if you know anything about state government work.. you know there is always a TON of paperwork. So that pile of paperwork which is of significant size is even more significant to me because I know how long it is going to take me to go through it.

I continue to lose my vision. It’s not fun, but I deal with it. Pretty much everybody that knows me well or spends a lot of time around me, knows my condition is degenerative. But it’s not like I’m going to go up and provide periodic updates – “Hey hey! My vision has declined again.” I would be doing that all too often, unfortunately. And I do get it, that because I don’t appear to be that impacted by my vision loss on a daily basis based on what other people see, they don’t remember or don’t think about it. I don’t blame them.. but sometimes I just wish they would. I don’t need them to pity me or constantly worry about helping me, I am pretty dang good at self-advocacy and will ask for help when needed. I just wish they would keep in the back of their heads that I am visually impaired. That I have really very little sight and that simple to complex tasks that require sight take me a lot longer and can be very tiresome. (I’ve been thinking about trying to do my own simulation of how I see.. but gotta think about how to execute this). And if we’re being perfectly honest here, the thought ran through my head.. if I wore sunglasses… they probably would treat me different… because that would be their constant reminder that I can’t see very well. But that just is due society’s image of what blindness looks like and I don’t need nor want to use sunglasses all the time.

As I was thinking about writing this post and then as I was about to hit submit, a thought came to mind.. what is the solution? One of my really close friends and a counselor that I have the utmost respect for always likes to discuss solutions. So if there is a problem with something and she brings it up to that person, she likes to have a solution in mind of how to fix it. I LOVE this approach and have tried to keep it in the back of my head more often. So how can I fix all of the above? Well, with people petting her, etc., I hopefully have addressed that in the workplace. Out in public we don’t have this issue because I’m a little more stern with the public. With the obstacles issue, I might start working my guide dog in the building when there is a lot going on in the future and I will be a little more vocal if there are persistent problems. With the people being more aware of my blindness, I’m not exactly sure how to tackle that issue. I don’t really hide when I utilize my equipment, etc., but it’s not exactly obvious either.. I might stop working so hard to make it less obvious and just let it be. For example, in group meetings, I may not utilize something necessarily to make a document accessible because I don’t want to stand out.. I guess that’s an adjustment thing.. I will be working on that.

As I’ve said, I don’t want people to treat me any different.. I just want them to understand and respect that I am blind, I do have to do things differently, some things take longer, I am human and will get frustrated, and that’s okay.

All in all, most days I am just fine and adjusted to my disability. But I do have experience the rare day where I wish I could just blend in the crowd and not be stopped six bazillion times a day due to my guide dog, not have to deal with worrying about obstacles, not have to deal with the stigma, and not have to deal with a largely inaccessible world.

And that’s okay.

Dear RP,

Dear Retinitis Pigmentosa,

I first met you 9 years ago and what a roller coaster of a relationship we have had since. You have brought me a lot of heartache, pain (both physical and emotional), and lots of difficulties. But, at the same time, I have been blessed with many opportunities, learning experiences, and friendships that I otherwise wouldn’t be have had. I can’t believe what we deal with on an everyday basis but hey, we’ve made it 9 years together. We graduated college Cum Laude, so I think we’re doing overall pretty good.

I remember when I first met you (was diagnosed) in middle school. I had no idea why I would feel light headed every time I would go from a dark to light or light to dark situation. You were trying to tell me something, weren’t you? I can’t tell you how many times the ambulance was called in middle school because I would pass out. I went from doctor to doctor trying to figure it out. Finally, my Pediatrician saw you… “Jessica, you have little dots in the back of your eye, we need to send you to a Retina Specialist.” And that’s where it all began with Dr. Edwards at UT Southwestern. Dr. Edwards was a huge help over the next several years, even after he moved to the Mayo Clinic. I then got referred to the Retina Foundation and Texas Retina Associates and they have been our guide ever since.

Like I said, we really do have a love hate relationship. Some days I really hate you but then other days I don’t mind you so much. Times I have hated you.. well lets see:

1) That time I fell in Tulsa because I didn’t see the huge dip in the snow or the ice patch.. tore my miniscus

2) Time that I almost severely injured an elderly lady at Apple when I tripped over her walker

3) Whenever I really want to go somewhere, but can’t easily because I can’t really drive

4) When I get harrassed or stared down or something similar because I use a cane

There are many others, but these are the ones that come to mind. Driving is probably the one that is most difficult to deal with.

A good tool that has helped us get a long better is the cane. It in itself though has brought about its troubles. People don’t know about you everywhere I go so they don’t get why I use the cane. I get a lot of stares.. but really? I think people are jealous of us. 😛 (Kidding, of course) Now that I have the cane, we get along a lot better. I don’t trip over things, I don’t miss as much. People are just more aware of us and overall are pretty helpful. It’s a good feeling.

There are many things that you have brought me, though. I have become knowledgeable about a whole new world of disability, other than the deaf/hard of hearing world. I have a lot more respect, not that I didn’t respect them before, for individuals with vision impairments. I am really interested in Assistive Technology for this population and it has opened up so many doors for my career. With my disability as well, you have brought me some financial assistance for school through DARS. Last, but not least, I have met some truly amazing people because of you.  Since I was seen at the Retina Foundation for years, they were quick to hire me as an intern in the Pediatrics Lab. One of my best friends is blind because of RP and I met her through a mutual friend who introduced us because we both had it. Things like that make me like you.

I’ll write you soon when I have more to say.



Support System, Support System, Support System!!!!

Having a support system when you go through any major transition or crisis is super important. I know this from my counseling classes, but also from personal experience. I have always had the loving support of my parents, but most recently they also understand way more than they did before so that’s an additional support that has been extremely helpful. I have some of the best friends in the world and am lucky over the past several years that I have played “clean up” and the sour apples are no longer around. Pretty much everyone around me, those I work with, go to school with, hang out with, etc., know that I am visually impaired but I do still really love my independence. I do need help at  times, and they understand that, but they also understand that I like to do everything that I can on my own. When I do have those times when something with RP frustrates me, I have many people to turn to, and that is just so important. There is also an amazing Facebook group out there called “Room with a View” and it is for visually impaired women, and occasionally I see women that aren’t visually impaired but a loved one is. It’s all about women though and so we talk about, of course, all the issues that come with being VI (visually impaired), but there is also some talk about other stuff. It’s a pretty neat resource.

I love my friends and family! 🙂