How I’m Navigating the Five Stages of Grief With Vision Loss


It always happens… I’m doing well, I adapt to another period of vision loss, not much time goes by and there it is again… sneaking up on me when I least expect it. This is my life with retinitis pigmentosa (RP). RP’s progression can come in many forms. For some, it’s very rapid vision loss very early on in life. For some, there are periods of vision loss followed by years and years of stability. For some, vision loss progresses veryyyy slowly through the years, and then for some, vision loss goes unnoticed for many years until diagnosed later in life.

I was diagnosed at 14. I am now 27. Looking back, I can recognize different incidents that were a direct result of night blindness or limited peripheral vision, but I wore glasses and did OK vision wise. I didn’t know I had any problems until my eighth grade year, age 14, when I started having all sorts of medical issues and was eventually diagnosed with RP.

Many people in the blindness community have debated whether it is easier for one to be blind from birth or be partially sighted/diagnosed later in life and lose vision over time. Since I’ve never experienced what it is like to be blind from birth, I can’t exactly compare. I’m sure there are “pros” and “cons” to both. However, in terms of emotionally adjusting to vision loss, it seems to me that being blind from both would be easier.

With RP, you go through many different stages of vision loss, unexpectedly. It’s not like there’s a signal that goes off that says “OK, you’re going to lose more vision.” No, it’s more like, “Ugh, I can’t see that and I know I would have been able to see that a year ago,” or “Sigh… I sure am falling a lot more… I think I’ve lost more peripheral vision.” One has to continuously adapt and acquire more blindness skills, including adaptive technology, orientation and mobility, and independent living skills, many times in their life if they are living with RP.

Many people when they are adjusting to a disability go through the grief cycle: denial/isolation, anger, bargaining, depression, and acceptance. Overall, I feel like I’ve reached the “acceptance” stage but can remember when I was in the “depression” stage, especially when I felt like it was affecting friendships and definitely had affected my self-confidence.

With RP, many times when your vision loss progresses more, you experience at least part of the grief cycle again. For example, when I started the process at 16 and then 18 of getting my driver’s license, my vision loss wasn’t as progressed as it is now, but I probably didn’t quite realize how bad my vision was. I kept my drivers license until after I got my guide dog and then realized it kind of looked funky to have a driver’s license with a guide dog. I was sort of in denial for a while that I wouldn’t ever drive again.

One of my very first instances of denial was when I got diagnosed. I was in 8th grade, going through a lot socially and medically, but when we figured out all this was because of RP, things settled down a bit but I didn’t really care. I would tell people I had RP but I just brushed it off. It was just a name to me, nothing else. I didn’t really get accommodations, didn’t get special assistance or mobility tools. I just had some trouble with tripping over a lot of things, falling down and up stairs, and difficulty transitioning from light to dark and dark to light. I didn’t fully start realizing something was amiss until I was in one of my classes in high school and I couldn’t participate in one of the class activities, taking notes while watching a movie. The lights were off and my notepad just disappeared… I was that night blind.

Occasionally, I have been angry about the inability to drive thing, and subconsciously I think I was angry in parts of college when I didn’t feel comfortable going out at night but saw my peers going to parties that seemed fun. I remember when I finally got invited to one of these parties, I was with some attractive young men and a girlfriend and I tripped a little bit and fell in some mud. I managed to catch myself with my hand so it wasn’t on my clothes, but was all over my hand. I didn’t want these cute guys knowing so I managed to hide it and then sneak in the bathroom when I got to where we were walking. I was a bit angry, and embarrassed.

I’ve been fearful a few times, like when my mother who was a huge support moved away and I had to be more independent and rely on others more for transportation assistance. I don’t know that I’d take it to the level of “fear” but I’ve often wondered how I would navigate some of the aspects of parenting, if/when I do become a mom. Luckily, I have amazing blind mom role models that I can look to for advice in this area.

I’ve grieved some of the things I can’t do as easily anymore or can’t enjoy as much anymore. My boyfriend really loves to go to movies, but I have to sit in the exact right spot to get as much of the screen in my limited tunnel vision, but not too far away from the screen that my visual acuity becomes a problem. My eyes also easily fatigue in movies because I have to move my eyes so much to catch what is going on. My boyfriend understands and never pushes the issue, but it does kind of suck that it is such an ordeal.

My life is very fulfilling and quite amazing. I have had a lot of opportunities arise because of my journey as a person with vision loss and the different paths I’ve taken. I am not fearful of RP at this point. I embrace it, and it is part of who I am. I have a lot of supports in place for when I do experience more vision loss, and have an excellent employer and supervisor who understand disability and value me as a person. They are patient and willing to help. However, I do have days where I am frustrated because I am a little bit slower or can’t go at the fast pace I like to live my life, because I have to re-learn or adapt to a new part of my vision loss.

I am now a counselor and recognize that going through the grief cycle is healthy. Not everybody goes through all five stages, and sometimes people make steps back. I know many times myself and fellow RPers do when we experience more vision loss — and that’s OK! If you are going through the grief cycle, whether it be with vision loss, disability, or something else, I encourage you to be patient with yourself. Know there is no right or wrong way to grieve, and it will take time. But you need to allow yourself to do it to move on; covering up your pain and grief will only prolong your struggle.

As featured on “The Mighty”:

https://themighty.com/2017/04/navigating-the-five-stages-of-grief-with-vision-loss/

Emergency Preparedness


A red text box with white letters - TORNADO WARNING DENTON CO
Tonight’s weather was a little scary in Denton, but mixed with a few circumstances, it got my adrenaline running! I’m usually pretty good in emergency situations. 

I moved into this rental house a few months ago. I’m pretty familiar with it obviously by now and we have a few items ready to go in an emergency but I hadn’t thought about where I would take shelter. Makiko was eating dinner (with a special treat) and I got the notification to “TAKE SHELTER NOW!” I looked it up real fast online and indeed saw that we needed to take shelter. I spent about 3 sec thinking about where to take shelter, realized all rooms had windows, so I picked up the phone and called my handy dandy resource for everything, my Mom. We chatted for less than a minute and then off to a closet we went. My house is pretty open and we have windows in every room, even the bathroom, with no closed halls.

When I decided that we were headed to the closet, I called Makiko to come and she came IMMEDIATELY. Now that’s some good training. She loves her dinner, especially when she has a little treat topper, so that really impressed me. We hung out in the closet with pillows as Facebook notifications came in, more emergency alerts, texts from Mom and one of my best friends, and we just watched the storm pass online. When the hail hit, that was intense. Tennis ball sized hail was reported and the tornado did touch town about 30 mins from us. Once we got the all clear, we stayed in there a little longer and then went out to the living room, where I am now typing this as I hear lots of emergency vehicle sirens going off outside. Praying that everything turns out ok. 
Oh, did I mention that we did this all without electricity? 

With all this in mind, I wanted to share a few tips that I had heard throughout the years for people with low vision or blindness in emergencies. This list isn’t for tornado specific emergencies but rather can be applied to many situations. 

  • If you have a guide dog or service dog, make sure to take their leash to the closet or wherever with you. You don’t know how the dog will react if it gets pretty serious and this can keep the dog safe and with you. 
  • If your service dog gets panicked and is unable to work out of the emergency situation, such as a fire, have a backup plan such as knowing where the emergency exit is and just going as fast as possible by feeling walls, etc., or if possible, heel your dog beside you and use sighted guide. 
  • Know where the closest exits are in any building. Remember if you rely on audible cues to help you navigate a situation (such as the sound of a coffee maker, you may not be able to use these if the electricity is out etc. 
  • Have a few contacts in your phone listed as Emergency Contacts so that others can find them easily if they need to call someone on your behalf. 
  • Make sure you know where the fire alarms are and how to activate them. There are many different kinds of alarms, some you have to break through to activate the alarm. This can be challenging for a sighted person and definitely for someone with a visual impairment in an emergency. 
  • If you work, have someone that you trust that will be your buddy if you need help getting out
  • Know how to use the emergency button in an elevator, or at least where it is. 
  • Make sure you keep your necessary assistive devices and medication in one place so that you know how to get them, if you have the chance to, in a hurry. Make sure to know your pharmacy info in case you have to get a prescription filled if you are evacuated, etc. 
  • Know where the gas and water shut offs are in your home and how to use them
  • Grab your cane, even if you are a guide dog user, if possible on your way out. (Obviously if it was a fire, you wouldn’t probably have time to do this, but if you are evacuating or have a little time, this is smart) 
  • If you have to evacuate, make sure you take everything you will need for at least 3 days for yourself and your service animal, including food, water, a toy, and a portable bed. . 

Emergency situations can be scary for anyone, especially if you have a disability. The American Red Cross and local disability organizations often have tips as well about how to prepare for an emergency. 

Thank you for giving me my life back


Dear Makiko,

Four years and two weeks ago today, I laid my eyes upon you with your gorgeous brown eyes and black fur. We went through very rigorous training and exactly four years ago today, we walked across that stage at Guide Dogs for the Blind and officially became a team. Little did I know at that point just how much you would change my life. You’ve wagged, cuddled, and kissed your way into the hearts of so many people.

Makiko, you’ve enabled me to do what I love to do. My job as a transition counselor is incredibly busy and we travel A LOT. I don’t think I would have been able to keep doing this position, or I don’t know that i would have even applied to it, without you sweet girl. You give me the confidence to be okay with going new places independently and venture into the high schools which look like colleges. This confidence can be seen in many areas of my life – I am spending less time at home and more time out and about, socializing, volunteering, participating in community events, and being me.

I may be a bit biased but I think you are one of the best looking guide dogs out there and your sweet face just melts everybody’s heart. People want to come up to me and ask me about you and of course, I love to tell everybody about how amazing and beautiful you are! This has led to many new friendships and connections… relationships I know I wouldn’t have made as a cane user. You have opened many doors for me.

Because you have been such an life-changing guide dog, I have wanted to continue to give back to Guide Dogs for the Blind and become more and more involved in this selfless community. Because of you, I have the opportunity to travel and meet people, sharing about Guide Dogs for the Blind. I have the opportunity to help raise funds and introduce the guide dog lifestyle to many other individuals with visual impairments. My public speaking skills are steadily improving and I’m becoming more confident in this area, an area that I have struggled in for many years. I have co-founded and become the Co-President of “The Eyes of Texas”, the Texas Alumni Chapter for Guide Dogs for the Blind, where I have had the opportunity to meet so many incredible graduates with guide dogs across the state. I founded “Guide Dog Handlers Network,” a Facebook social support group for guide dog handlers from all over the world and we have had the opportunity to be there for each other and brighten each other’s lives. Because of you, I have a new amazing community that I have the honor of being a part of.

Because of you, my gorgeous girl, my wanderlust is back in full swing and I want to travel with you by my side because it is SO much fun and I feel totally free when traveling with you.

I am much safer with you by my side, leading the way with me holding onto that harness handle. I’ve had many surgeries and casts through the years due to falls or accidents due to my vision loss. One of the worst ones was when I didn’t see a particularly icy patch in Tulsa when I was going to school there and fell on it, unable to get up. One torn meniscus surgery and a lot of therapy later, I am doing just fine. I am proud to say that while working you, I have not had one vision related accident. That is HUGE. You’re a star at “intelligent disobedience.” If I tell you to go and you think it’s not safe, you will do everything in your power to tell me, “No, Mom.. really.. NO,” and will show me the safer route. You can be quite stubborn and I wouldn’t change that for anything.

You’ve helped me become much more physically fit and active. 5 years ago, I would have never dreamed about wanting to exercise. However now it’s a definite goal and I WILL make it happen. Through walking at your speedy pace, you have made me a much faster walker, even when you’re not guiding me. You understand my busy lifestyle and help me navigate crowds like a ninja. Sometimes, my sighted friends even let you just lead the way because you’re just that brilliant at what you do.

I continue to lose my vision. Just when I think I’ve lost a lot and it will stabilize, BAM.. I lose more vision. You, smart girl, are able to adapt to my vision loss more than the closet humans in my life can. You learn what Mama can’t see anymore or what she’s likely to miss, that she may have been just fine with 6 months ago. Not all guide dogs can adapt that well.

They say dogs are a man’s best friend, but you, sweet Makiko, are much more than that. When I’m having a particularly rough day or struggling with depressive symptoms, you are right there to stick your head in my lap and ask for permission to come cuddle, or lay right beside me. You make me keep going as I will never let your exercise, food, water, and relieving needs go unmet.

As we embark upon year five, sweet girl, I promise to show you daily how much I love you and am grateful for you as we have the time of our lives on this journey called “life.” Thank you for giving me my life back, after vision loss. I wouldn’t be where I am today without you.

Love,

Jessica

Night Travel


I have lost most of my sight. However, during the day I am able to use what little residual vision I have left. At night or in dim environments, my nightblindness kicks in and I am totally blind. That can be a little intimidating. 

When I was a cane user, I felt at risk at night, not safe, and I felt more of a target. Whether that is true or not, I’m not sure but that’s how I felt. I didn’t like to travel independently at night if I didn’t have to and I was always a little on edge. 

This pictures below mean a lot to me:

Makiko, a black Labrador guide dog, is laying down briefly. She is wearing her harness but it is hard to see with no flash and the outside environment is almost pitch black.
No Flash: Makiko is laying down momentarily while we wait for our ride. It is hard to see her because it is almost pitch black outside.
This picture is with flash. You can almost pretty much just see Makiko's harness, especially with the reflective strips, and you can see a little bit of Makiko but since she is black it is hard to see her. Outside is almost completely pitch black.
Flash: Makiko is laying down. You can see her a little better with the flash, especially the reflective strips on her harness, but you can also see how dark it is outside.

Why do they mean a lot to me? Because with her, I love getting out at night. I love traveling independently. Sure I still have a little anxiety now and again, but I am happy. I am confident. I am free. 
Last night I caught a LYFT to go out with friends. I waited outside for the driver, then he drove me to my destination, and I independently got out of the car and made my way walking to where we were going. 

As I said before, I am not able to use any residual vision at night so it’s ALL her. And she takes her responsibility very seriously and guide’s me safely. 

She is my rock star. 

Discrimination 


Discrimination has been in the news a lot nowadays, especially with the Trump administrations view on Muslims from certain countries and the Mexican-American border. Recently, I experienced discrimination due to my use of a guide dog and hit me harder and in different ways than before, and I think a large part of that is because of all the discrimination happening in this world nowadays. 

I was in Houston for a work conference and was out with co-workers, some I knew, some I didn’t, for my best friend’s birthday dinner. We both work for the same amazing agency, as counselors, just in different offices. I walk in and am immediately thrown off a little bit because of the dim lighting which makes my residual vision go away. Immediately, as in I had only taken two steps inside, I am asked if Makiko is a service dog. I said yes. We went closer to the table. I sit down, am asked by somebody else. I say yes. I hadn’t even sat down long enough at the table to get Makiko fully settled before this second time being asked. Throughout the night I am asked about 4 times. However, what really really got me upset was I was sitting a few seats away from my best friend’s husband. He was the only male there at this point. He asked me if Makiko had papers. I thought he was just curious although I was pretty sure he should have known the answer. I said she did have an ID. He then said “this gentleman would like to see them.” I hadn’t even seen the man standing behind him at this point. I said “well he can’t..” and then the guy said to me with a very disgruntled tone “ok..” and then walked away. As we were leaving, the waitress was so excited to see Makiko and had NO idea that Makiko was under the table. That is a compliment and how it should be. 

However this “does she have papers?” thing really got to me. I later found out that the guy friend who the staff asked this question to tried to explain to him a few times that I am blind and she is my service dog before he really insisted on seeing papers. It bothers me that he was that insistent. It also bothers me that he asked the male at the table, not me. Finally, what really bothers me is im fairly sure, but not positive, that the gentleman who asked had already asked me earlier on if she was a SD. This was harassment. What has really resonated on my heart though is the “do you have papers” comment and how there have been a lot of members of the immigrant community and even permanent residents and citizens of different ethnicities have been asked this recently. Now I am being asked about my service dog, and not myself, but it still struck me pretty hard.. as if they didn’t think we had a right to be there. 

Under the Americans with Disabilities Act, we are only allowed to be asked if she is a service dog and what tasks is she trained to perform? I found in Houston in general they asked this far more than any other place I have travelled. We went into one restaurant and my friend’s everybody was giving us the stink eye. I haven’t had this much trouble or stink in a long time. 

I have several very close friends who are undocumented. I have a lot of friends who are legit scared of losing their loved ones for a while do to being of a different ethnicity. 

I did write the business that did this and they were pretty receptive and apologetic and said they would be following up with the staff that night personally as well as sending out a message about discrimination to all employees. I appreciated that and their response was better than most people have responded with reported discrimination. 

There is just something really wrong about all of this, what happened to me in the restaurant but also what is happening in our country right now. It leaves you literally with a bad taste in your mouth, feeling depressed, and sick. 

When can we go back to loving our neighbor? Loving all.. 

60 Feet 6


60 Feet 6- That’s an interesting name, isn’t it? 

The 60 Feet 6 Foundation is an amazing foundation established by Major League pitcher, Derek Holland. (He formerly played for the Texas Rangers).  The foundation originally raised funds to fight pediatric cancer but has now partnered with Guide Dogs for the Blind. The Lone Star Guide Dog Raisers (LSGDR) Dallas Club has a puppy in training, Dutch, raised by Henry Roberts (and family). “The Dutch Oven” is Derek’s nickname and he sponsored this puppy and therefore it was named after him. 

Every year, this Foundation hosts a celebrity golf tournament. Henry, Dutch, and other Guide Dogs for The Blind puppies in training talked to all of the golfers as they made their way through the course and shared the tremendous impact that these dogs have on people’s lives who have visual impairments and why fundraising is so important. 

 I had the honor of being asked to speak at the tournament. I was given a very short time frame and I wanted to really try and share the impact a guide dog has made on my life. I got a little nervous at one point, but I was overall pretty happy with it. I also had the pleasure of getting to know Derek Holland. He is such a wonderful guy with a huge heart. 
(There were some other famous people there too including Ranger closer Sam Dyson, former Ranger Michael Young and former NBA dunk champion Spud Webb) 

Here is the speech.. the person recording cut off the first part of my introduction but here is the bulk of the speech. 


​​
Jessica, Makiko, and Derek Holland at the 60 Feet 6 Foundation celebrity golf tournament reception

The Joys of Traveling with Makiko


Makiko and I have been busy lately!

In August, we went to Florida for work – a Project SEARCH conference.

In September, we moved Mom to Colorado.

In November, we went to visit Mom for Thanksgiving in Colorado.

In December, we went to Houston for a work conference and are now in Colorado visiting Mom and family for the holidays!

Traveling can be tough for anyone, but especially if you have a disability. I have always loved traveling. It was a lot more frustrating though when I was a cane user, especially when flying alone, because I had to depend on one of the airlines’ escorts to help me to and from my gate. Most of them are incredibly slow to get there, aren’t in any rush, and usually are only trained to help people in wheelchairs, not those of us who don’t need a wheelchair. When I first got Makiko, I still waited for one of these escorts but now, we just wing it! Together we know the way through the DFW airport, Dallas Love Field Airport, and Denver airport and don’t need any sort of assistance. In airports we aren’t familiar with, I usually just ask for directions at the check in counter or from somebody when we get off the plane and then we go. It’s so much more freeing and remarkably less frustrating.

It’s always gives me a chuckle to see how TSA reacts to us. Almost always we have to tell them how we do it. (Makes me so glad for the practice we had at a real airport with real TSA agents during guide dog training) A few weeks ago, they kept trying to wave me through and then became frustrated when I didn’t notice. I finally was able to sense something and got it sorted out. This time they had four TSA agents gathered in a circle on the other side of the metal detector whispering. I noticed a TSA agent go right in front of me and asked him if I could assist.. he said they were trying to figure out if the alarm would go off. I said it would with her and once again explained how I put her in a sit stay, extend the leash, walk through, call her through, they pat her down, swan my hands, and then we are on the way. I wrote them and encouraged them to do a little more training and even offered to provide it.. for free! I haven’t heard back yet though. 🙂 

Makiko also loves traveling. Here is a video I took shortly after we got off the plane a few weeks ago. You can see her take me all the way to the elevator to take down to baggage claim. 

What makes traveling easier for you?!