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.

Monarch – FLY FLY FAR FAR AWAY (from Monarch Dental)

Get it? Monarch butterfly — fly fly away? Well, I thought it was funny at least.

This is a great story for Blindness Awareness Month.. and it just happened a few days ago. There were so many very bizarre and inappropriate things that happened during this story that you would think I was making it up. But I’m not.

About a week ago, I woke up with this really annoying feeling like there was food stuck between my teeth in the back of my mouth. I tried to brush it out, but it was still there. I then realized that I have this flap of gum that is now coming up over my last tooth on the lower left side and is swollen.. very swollen.

I hadn’t found a local dentist since I started this job because my old dentist whom I LOVE (Dr. Chamberlain in Dallas) unfortunately doesn’t accept my new employer’s dental insurance. One of my co-workers recommended Monarch Dental and I found out another trusted co-worker also goes to Monarch Dental, but another location. So I decided to check it out. I went online and filled out their appointment request and was called the next day to make the appointment. Their forms online are not accessible to screen readers and I was very busy so I wasn’t able to complete the forms prior to the appointment.

The dentist’s office is in the mall so my driver walked in with me to help me find it. I walked up to the front desk and the lady tells me to sign in. Okay, it’s a big enough sign in sheet that I can handle that by myself (with my face pretty close to the piece of paper). She then tells me to sit down, I do so. About 30 seconds later, she asks me to come back up and get New Patient paperwork. IĀ ask her if the forms are in any larger print because I’m visually impaired and she says no, and then goes on to the next client in the waiting room. So I sit down and bring out my phone to help me enlarge the documents (I didn’t have my portable CCTV with me.. gotta start carrying that around with me more). While I’m very tediously balancing a pen, a phone, holding the clipboard on my lap, and have Makiko’s leash between my legs, the lady asks me about 2 minutes in to bring up my insurance card and Drivers License. She then starts arguing with me that she can’t accept a State ID and that she has to have a Drivers License. I tell her I can’t drive because I am blind/have a disability, but she says “I’m sorry, I still can’t take this,” so then we go back and forth about this, with a waiting room full of people, and then finally someone else comes up and tells this lady that they CAN accept it. Okay, great, I can finally go sit down. So I go sit down and continue filling out the papers and she calls me up again.. this time there are several other customers at the desk so I have to wiggle my way around them to get to her, she gives me my insurance card back and says she’ll give me my ID back in a bit.. okay, great.. thanks.. I sit down once again. I finish filling out this paperwork (finally!) and go back up to the desk. She then starts asking me all of these questions about my medical history which I filled out on this form with EVERYBODY IN THE ROOM. Can you talk about HIPAA? Okay so eventually I said I would answer any other questions with the dentist. I went and sat back down, with my ID.

Makiko and I wait patiently and then a Dental Assistant comes out to get us. She doesn’t introduce herself, just immediately starts talking about Makiko. We go back to the x-ray room and we barely get in the open doorway and she disappears… I couldn’t find a chair so I tell Makiko to find a chair, and she does so.. good girl! So I sit down and she comes back about 10 minutes later and starts taking x-rays… I got an x-ray jacket for Makiko too. Mind you, she still hasn’t introduced herself. While taking the x-rays she starts asking me super personal questions, “Why do you have a dog?” “Aren’t you really depressed because you are blind?” “How did your parents cope with your diagnosis?” If this were the time and the place for these questions, they are great questions, but 10 minutes after I’ve met you and you haven’t even introduced yourself — I’m not that comfortable to answer these. I can’t remember what I said but I gave her very short answers. We then go into the dental room. I sit there and wait and wait and wait. I’m already pretty frustrated at this point and texting my Mom that I’m not sure I will be coming back here… and then all of a sudden I hear this really loud scream from right behind me…

It was the DENTIST..


At Makiko.

Oh dear goodness. Makiko didn’t move, but she did look up at her. Apparently this Dentist is really scared of dogs, so she went around the border of the room until she was in the opposite corner of Makiko (where I couldn’t really see her from the chair) and told me “I’m kind of scared of dogs, so I’m just going to stand here.. is that okay?” What do you say to that? I wasn’t really sure what to say so I just kind of gave her this “uhhhh” look. She then started talking to the Dental Assistant. I then ask in a very sweet tone, “If she is so scared of dogs, is there someone else that probably should assist me today?” The Dental Assistant replied, “No she’s the only one.” (Notice, I’m still calling them “the dental assistant” and “the dentist,” because I still have yet to be introduced to either of them or learn their names. I probably should have asked but I was too caught up in all the other BS to really care at that moment). So the dentist proceeds with her exam, with no bed side manner, not understanding that I can’t see what she’s talking about, and then tells me that I need a little dental work, she won’t do a cleaning today, I’ll have to come back for 3 or 4 different treatments, they are going to do nothing today (not a cleaning or anything), she doesn’t know what the mass is but is going to “watch it for a week or so,” (Meaning she expected me to come back within this time frame) and refer me to an oral surgeon if necessary “because it could be oral cancer.”

Great. You all know how much I hate that ‘c” word.

Okay, so let’s re-cap. I had a horrible registration experience, was asked very personal questions about my disability and adjustment to disability that I have never been asked directly before, had a dentist scream in my ear and examine me from odd angles, nobody introduced themselves, nobody reviewed the xrays that were taken, and then the office manager/treatment coordinator came in.

This lady then proceeds to show me this really small font list of everything I need done. I tell her I can’t really read it because of my visual impairment and she says “Sorry, this is all I have.” Great. Okay, so then she says “Now you need to pay for all of this upfront to get all your treatments booked.” Um, excuse me? I’ve NEVER DONE THAT… so I used Mom as an excuse. “I need to talk this over with my Mother and then I’ll call you to schedule.” (At this point I vowed that I would never be stepping foot back in this office). The lady was nice enough and understood and then said “have a good night.” Okay, so we get out of the exam chair and escort ourselves down the hallways and out the door.

What an awful experience. I still have this really annoying and painful gum problem. I’m pretty sure it’s infected at this point, and I’m not exaggerating. I’m going to call my PCP tomorrow and see if he will order me an antibiotic over the phone. I got a new dentist recommendation and this time it isn’t a chain, it’s a family dentistry practice. I think I’ll like it much better because that’s what I’m used to. I have been taking pain medication and making sure it stays clean by brushing it well and using Listerine. I also remembered back to the days of when I had braces and had sores on my cheeks, I was given Orajel. Mom picked me up some and oh my goodness this stuff is amazing! It has provided me so much relief.

I attempted to write Monarch an email about this but there is no email to send it to. There is only a short box on the website for an inquiry. So I “Inquired” and asked who at corporate I can send a complaint to. I hope to hear back soon.

I will NEVER ever recommend Monarch to anybody. I know that they probably are very different depending on the location but I can’t ever imagine recommending this to anybody after the experience I have. And, in my job, I am often asked for recommendations.

What an experience.