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/

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. 


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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?!

Beauty in Blindness


I am Blind. I am BeautifulBlindness is beautiful.

I love my life as a blind individual. Growing from a person with full sight, to a person with low vision, to a person who is legally blind with very little vision remaining, I have learned a lot and believe I have a special outlook on life. With a lot of the scientific research that has been happening, I get asked increasingly more often.. “If you could, would you become sighted again?” Honestly, right now my answer is no. I love the life I live right now. Blindness doesn’t define me but it has most definitely shaped me. Here are some of the many reasons I love being blind or that being blind has taught me:

  • Personality vs. Appearance – I get to know somebody first based on their personality. I can still see a little but what they look like but their personality weighs much heavier than their physical appearance. I realize that some sighted people are like this too but I just think it’s much easier for me to see someone for who they are on the inside than who they are on the out with limited vision.
  • Airports – In most airports, we get to skip the long lines at TSA and go right to the front.
  • Performances – I often get to sit up front at performances and those who accompany me do too!
  • Spidey Senses – As I’ve discussed on here before, it’s a myth that when you lose one sense, your other senses are automatically better. Often times though when someone loses one sense, they become more dependent on the other senses so they concentrate on them more, thus giving off the impression that they are automatically better. I know who is coming down the hall often times at the office by their footsteps, their shoes, or some other indicator. A lot of what I can’t pick up on visually, I can audibly or tactually.
  • Dirty Looks – If other people give me dirty looks, I often won’t see them.
  • Designated Driver – I never ever have to be the designated driver – win!
  • Problem-Solving – I have had to problem solve a lot more than many of my peers have, to do the simplest of tasks. Many bigger problems don’t phase me any more because I’ve become so accustomed to staying calm and just working out the problem.
  • One car household – Steven and I will only ever have to pay one car payment and one car insurance payment per month. Now, the not being able to drive thing does suck a lot on most days but this is definitely one of the advantages.
  • Knowledge of governmental agencies/legal agencies – Unfortunately, I have been discriminated against on multiple occasions due to my blindness and/or using a service animal. I have learned a wealth about the Fair Housing Act, Americans with Disabilities Act, Air Carriers Access Act, as well as the complaint processes through HUD, Department of Justice, and Disability Rights Texas.
  • Career Choice – Losing my vision led me to the Department of Assistive and Rehabilitative Services Division for Blind Services several years ago as a consumer and transformed my career path into becoming a Vocational Rehabilitation Counselor for the agency. I absolutely love what I do and don’t think I would have found this career path without my vision loss.
  • Empathy – My job is all about working with individuals with disabilities to transition out of high school. I feel like I can empathize with my consumers on a deeper level in some ways as I’ve experienced a lot of what they have experienced, just maybe in different ways.. especially if it relates to transportation.
  • Self-Confidence – My self-confidence has increased exponentially as I’ve had to “sell myself” as in show my strengths to various people, such as employers, and have developed a strong level of confidence in my skills, strengths, and abilities.
  • Tough Skin – I’m still pretty sensitive about many things but my skin has definitely become thicker since losing my vision as I’ve had to deal with some pretty difficult things.
  • Friends – I have met so many wonderful people through my journey as a person with vision loss. One of my very best friends I met specifically because a mutual  friend knew we both had the same eye condition (Retinitis PIgmentosa) and introduced us.
  • Presentations – When I’m giving large presentations, since my peripheral vision is so narrow, I can’t see more than one person in the audience and I can’t see them with any definition. Many have joked about this in the past but I do think that this has helped me over the years cut down on the anxiety of presenting in front of large groups a little bit.
  • Technology –  I have always loved technology but especially now that I depend on technology for many parts of my personal and work life, I am pretty skilled with all different types of traditional technology and assistive technology. I am able to provide a lot of assistance to my sighted/non-disabled peers on a daily basis because I have had so much experience with it.
  • Guide dog/Makiko – Last, but certainly not least, I have had the opportunity to be partnered with Makiko, my beautiful guide dog, who has encouraged me through some really tough times, has taught me to be confident, has shown me how independent I can be, and is always so loving. Through her, I have become really involved with Guide Dogs for the Blind, taking on a leadership position as one of the founding Presidents of our state Alumni Chapter, “The Eyes of Texas,” participating with Lone Star Guide Dog Raisers, our local puppy raising group, creating and facilitating “Guide Dog Handlers Network,” a Facebook social/support group for guide dog handlers from all over the world, and giving presentations in the local community about guide dogs, service dogs, the ADA, and blindness etiquette. I did a few presentations before her about some of these topics but she has opened many doors for me.

I have gained so much as a person with vision loss. Sure, I have lost a few things too (such as my ability to drive) but what I have now is beautiful. I love the life I live and I love the opportunities being a blind young woman has given me.

Letter to PetSmart about the near deadly Femur Bone


(Read here for the full story if you haven’t read about our scary incident with a gifted bone recently.)

Dear PetSmart,
I have bought many things at your stores over the years, from equipment to COUNTLESS number of fish, gerbils, dog food and treats, etc. Recently, I was pleasantly surprised that you started carrying Natural Balance dog food as this is the dog food that my guide dog eats. I am blind and I depend on my guide dog to live independently and maintain the very active life I do. Therefore, since Natural Balance is the food that works for her, even though it is a little more expensive, I buy it for her because we only give her the best. PetSmart sells Natural Balance a few dollars cheaper than one of it’s competitors so that made me shop at PetSmart even more.

However, I recently almost lost my guide dog due to a PetSmart product and I am absolutely horrified that these products are on your shelf. When I thought that PetSmart only carried the best of the best and therefore was a safe place to shop for my guide, I realized that this isn’t always the case. A good trusted friend went to PetSmart and bought Makiko an $8 or $9 Dentley’s femur bone as a Christmas present. We had delayed Christmas with her family. She ate it on a Thursday night and by 2:15am, she was vomiting profusely. She continued to do this off and on all throughout the night and the following day, which led me to not be able to go to an important meeting and instead when my dog was not wanting to move, puking constantly, and very uncomfortable, I took her to the Vet who had us rush her to an Emergency Hospital, where she had a gastrotomy to remove all of the pieces of bone that had become stuck in her stomach and would perforate her intestines if they continued to try and pass. As a result, my guide had an incision about the length of her belly, wasn’t able to work for weeks due to the incision and medications she was on, and my life and her life have been significantly affected by this. I now know not to give her any femur bones as these are horrible for dogs, according to many articles and pretty much any veterinarian. So, why does PETSMART carry this item still? I just don’t understand. Pet owners trust PetSmart to carry safe items and this item is NOT safe. There are numerous stories online if this same thing and similar incidents happening. PLEASE take this item off your shelf.

Thank you,
Jessica Naert and Makiko (Working Guide Dog)

Thankful for Makiko


  
Happy Thanksgiving! I have a lot to be grateful for this year. I have a very loving family, and while we have lost both of my parents this last year, we still stay pretty close. My grandparents were amazing people and I’m really grateful that they valued family so much, as they instilled that in their children and grandchildren. I also have a wonderful boyfriend who loves me to death and spoils me. Dating a gal with vision loss is just part of life for him and he embraces it. He has a wonderful family that I get to spend the holiday with while my Mom is visiting my sister in New York. I have an amazing job and a wonderful boss and many very compassionate coworkers. 

I am also EXTREMELY grateful for Makiko. Guide dogs are known to help their handlers have increased independence, freedom, and companionship. Makiko definitely brings that for me. But what does that mean? Here are many reasons why I am grateful for Makiko this Thanksgiving: 

  • Since getting Makiko. I have not had one injury while working her. This is HUGE. I have broken and torn too many things to count but Makiko has not once put me in any danger or missed something that led me to hurting myself. 
  • I serve 14 different high schools as a Transition Vocational Rehabilitation Counselor for the State. Makiko knows pretty much the way to the place we office in each of these schools. I can be independent and confident in my schools because together, we can do it!  
  • Living alone can be pretty lonely. However, Makiko is the best companion. We go for walks around my beautiful complex, just sit outside, go to the dog park in the complex, and play all sorts of games inside together. She is my best friend, my snuggle buddy, and the best companion! 
  • Prior to getting Makiko (and then a year later starting my job), I loved to sleep in and not do much. I still enjoy sleeping in and not doing much but my sleeping in went from sleeping in until about 1pm to sleeping in til 10am. She gives me a reason to get up and get active. During the week, she is an excellent alarm clock. Most days if she doesn’t see me getting up after the alarm clock has gone off a few times, she starts her silly ways to get me out of bed. She knows. 

    

  • She has made me more interested in the ways dogs are trained and think. I have very much enjoyed learning the art of dog training and reading up on it. We have started doing some fun clicker training. Makiko loves learning new things too! 
  • Makiko can tell when I am not feeling well, often before I do. She helps me figure out something is up so that I can be aware and work on it, like when I’m starting to feel very woozy because of low blood sugar. If I am napping too long and need to get up and cook dinner, she will let me know. 
  • She has given me the opportunity to care for something. I am a caretaker at my core and she gives me the opportunity to take care of her on a daily basis, and if I skip certain things, she doesn’t “run” as well.
  • I can go off in crowded areas by myself. I hate crowds, and this really only started once I started losing my vision. Makiko and I can just go do our thing in crowds and I can be independent. That helps me a lot.. I can do what we need to do to help us and make it enjoyable. For example, there was recently a huge craft bazaar in Colorado when I was there for the weekend. My aunt had my great-aunt latched on (and therefore naturally are slow), plus she really loves to look at everything. I like those kinds of events but am much faster. So Makiko and I just went off and looked at our own booths and bought some fun things.
  • She has opened me up to a whole new community- the Service Dog community at large, more specifically the GDB community, and also the puppy raising community. I love helping and talking to other service dog handlers on Facebook groups and other support groups. I run a Facebook group “Guide Dog Handlers Network” that has close to 800 visually impaired guide dog handlers from all over the globe. It is so fun to learn about their experiences. There wasn’t a page quite like it when I came back from guide dog training but I created it to help others and have fun… It has done just that! GDB has some of the most caring and loving people in their organization as employees and volunteers. I love doing activities and talking to others from this organization because they are genuinely good people. That is the same for the puppy raisers. They raise these dogs for 1 to 1.5 years and get so close with them. They then have to “give them up” to GDB to go to “guide dog college” or formal guide work training. That is heartbreaking! A lot of work goes into running a puppy raiser club, coordinating the events, and raising a puppy. I have met some amazing people through our local puppy raising club, Lone Star Guide Dog Raisers. 
  • Makiko loves to travel and she is wonderful when we are traveling. She is absolutely perfect in airports and on airplanes, and on road trips you barely even know she is down there. She is a great foot warmer though! 🙂 I love to travel so it’s really awesome to have a buddy who loves to travel and helps me do it with such ease. She makes it much less stressful. 
  • Makiko and my Mom and boyfriend are all best friends. I am grateful that she loves my Mom and boyfriend so much and they love her. It warms my heart to see them all play together and love each other. 
  • Makiko loves her little place in the office and she has become an essential part of our workplace. I have to set boundaries with some coworkers who don’t quite respect my rules, but for those who do respect them, Makiko is great “therapy”. We have a very tough (yet rewarding) job, and work with a lot of individuals with disabilities with very heartbreaking and difficult situations. Sometimes they come to us and we are all they have left. We also have a lot of pressure naturally in the kind of work we do. Makiko has formed some very close bonds with my good work buddies and brings smiles to their faces daily. 
  • I totally respect those who choose a cane as their mobility aid but it is most definitely not the one for me. It’s sad but society doesn’t really know how to react to someone with a cane (but we are working to change this!). I also find that there are a lot more obstacles when using a cane and it’s just stressful to me. However, with a guide dog and particularly such a cute, beautiful, and well behaved guide like Makiko, she has increased and changed social interactions for me. I am very social and love the reaction from society with a guide dog much more than with a guide dog. I must talk to at least 10+ strangers a day on weekends when I’m out and about because of Makiko. I love that. Plus, I have the opportunity to educate others and that’s a blessing.
  • I have always been known, since college, for being pretty outspoken. However, since getting Makiko, I am a lot better with self-advocacy and advocate for my needs and rights more. 
  • I am a lot more confident all around because of Makiko. I am confident in myself, my ability to travel independently, my ability to go new places and try new things, my ability to meet new people, and just be me. I experience a lot less anxiety when I am with her.  
  • Many of you know that I got Makiko two months after my father passed away. My father is my best friend and this has been devastating. Still is. She has helped me grieve and keep going. Dad died one semester into my Masters and I got her my second semester of grad school. Makiko helped get me through grad school. 

Makiko is the best thing that has ever happened to me. Over 2.5 years later, she is daily changing my life for the better and helping me become the happier, healthier, and better me.  I am so grateful to and for her.

Happy Thanksgiving! 

Guide Dog Handlers Network


I have a lot of guide dog handlers who read my blog so I just wanted to quickly remind you that there is a group I run and admin along with two other guide dog handlers on Facebook. It’s called “Guide Dog Handlers Network.” You have to be a handler, a retired handler, or a prospective handler to join. It is a wonderful group of handlers nationwide and we are very supportive. I encourage you to search that name on Facebook and request to join! If you don’t have anything on your profile that shows us you are a handler or visually impaired, please message us so we can know that you are legit and we will add you!

Hope to see you there!