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”:

The In Betweeners (Autism and Blindness)

Professionally, I work with high school students with disabilities to help them transition out of high school. A large percentage of my caseload is Autism. I absolutely love this population and continue to learn ways to serve them appropriately. Up until the past few years, there was a subset of Autism called Aspergers Syndrome, which was “high functioning” Autism. Most times these students were quite bright and could academically handle school with or without accommodations but it was the independent living and social skills where they really struggled. For this reason, it was often hard for agencies and school systems to figure out the most appropriate classes or services because they were “in between”. Aspergers Syndrome is no longer an official diagnosis according to the DSM-IV.. It’s now just the Spectrum. Those on that high functioning level of the spectrum still are often “in between.”  I was working with a family recently and they said that they called their son an “in betweener” his whole life. 

I can SO relate.

Being partially sighted is a blessing and a curse.. I am an “in betweener.” I can see enough to sometimes identify faces but not enough to read a lot of print or see changes in elevation. I can see enough to tell if my destination looks somewhat familiar but not enough to read any signage or see anything with any certainty or clarity. I can see enough to make eye contact most times but that throws people off to where they think I can see more than I can. I am an in betweener.

It is a blessing because I have lost my sight over time and therefore been able to use what little sight I had to adjust and continue to develop more skills for my continued vision loss. I have been able to get two college degrees and learn my State job with some sight. (This has been a HUGE blessing to me because it definitely has been easier, I think, to learn this job partially sighted than learn it with no vision- the paperwork is bountiful). 

But it’s also a curse having partial vision. I have to adjust to vision loss again and again.. Sometimes I wish it would have just all happened at once so I could get the adjustment to my disability over with and move into. Instead I have to constantly adjust as do the people around me. I go through the grief cycle with many of my vision changes. It’s exhausting. I am not deemed appropriate for some services because I am partially sighted but do need them. It’s just a tough spot.

I am also pretty self conscious at times about being partially sighted. I feel like people sometimes (or really most of the time) don’t get why I need the Assistive Technology, Accommodations, and guide dog. My eyes fatigue super easily. So if the print and lighting is just right I may be able to read a little bit but then by the end of the document, I won’t be able to read it anymore. It will just be a giant blur and I’ll have a headache. But to some people because I could read those first few words, I’m not that visually impaired. They don’t get the fatigue thing and that the light in the room has to be just right, the font just the right size, the contrast just right, and I have to have not been exhausted at that point. The chances of all of that happening is very slim which is why I have amazing Assistive Technology. I also have an assistant at work that is able to devote a lot of time to me and my caseload and spends EXTRA time reviewing everything that I send out and receive because I do miss things. It’s not just because I want an assistant all to myself, but because she has to do a lot more double checking and paperwork type tasks than my sighted peers do. But look, with the right accommodations, my performance at work is great. The same applies tons guide dog. Because I can make eye contact with you and can travel so easily, people don’t think I need a guide dog. What they don’t realize is that I may be able to make eye contact with you but that’s all I can see if I’m looking at your eyes.. I can’t see your hair, mouth, etc. My vision is that tunneled. So if I’m walking down a sidewalk looking right ahead, I won’t see cyclists who are coming down one side, I won’t see fire hydrants or any obstacles in the path, I won’t see any tree limbs hanging overhead, and I can easily get turned around. Additionally, if the sun is too bright, there is any overcast, or it is too dark or rainy, I’m essentially totally blind. With the way the weather changes in Texas, this is often. I also am able to function so well because of Makiko. People don’t realize how many subtle cues these guides give us. For example, Makiko will often put her head on a chair if she knows I’m looking for it. Or she will take me to the same spot each time. So while it just looks like I’m doing just fine, it’s really her. 

It is a self conscious thing because while I shouldn’t care what others think, I do know and have heard that they don’t think I need certain tehnology, accommodation so, or my guide because I’m partially sighted. And that hurts. 

I do look sighted. But what does blind look like? Let’s fight the stereotype that blind people wear sunglasses all the time or have glossed over eyes or can’t make eye contact. There are so many complex eye diseases out there and the blind people that have them DONT fit into that stereotype. Fighting that stereotype will help people like me, an in betweener, have less conflict due to my vision loss on a daily basis. The less we stereotype people with disabilities, the more opportunities they/we will have to be independent and contributing, working members in our society. 

What I Wish I Had Known About Retinitis Pigmentosa (RP)

(As featured on The Mighty)

When I was in the 8th grade, I was diagnosed with retinitis pigmentosa. I had no idea what it was at the time, and didn’t really feel it affected me. I could still see very well, and most of the effects weren’t supposed to happen, or so I read, until one was older. Here is what I wish my family and I had known then…

Retinitis pigmentosa (RP) is an inherited disease causing retinal degeneration. It can occur and be diagnosed anytime from childhood to later adulthood, and varies in its speed of progression and severity. Growing up sighted and then losing your vision rapidly can be scary. You will have to make a lot of adjustments to how you do things over time, but with the right support and resources, it is entirely possible to live the life you want to live, and live it to the absolute fullest.

Retinitis pigmentosa is a very tricky disease. Night vision is usually the first to go, followed by peripheral vision, and then it gradually closes in, until it also takes out your central vision. The degeneration can come in waves. You can have stable vision for years and then suddenly lose a lot at once. In the advanced stages of RP, you might not be able to read a menu or identify a face, but still be able to tell someone is there and make eye contact with them. This can be confusing to the general public, who may not understand as well as they might if you had a more visible disability.

Research says many individuals with RP don’t start losing their sight until they’re in their 40s, but that’s not always the case. I’m 26, and I have lost the majority of my vision. I didn’t always recognize how much vision I had lost, like the time I missed a stop sign during my driving test. I tried to dismiss it, until I would catch myself missing many other things. I didn’t want to stop driving, but a friend with RP put things in perspective. What if I were driving, and a young kid decided to cross the street, and I didn’t see him just like I didn’t see that stop sign? How could I live with myself? I took my friend’s advice and eventually surrendered my license.

If you are diagnosed while still in the public school system, it will be highly beneficial to get an IEP (Individualized Education Plan) for services in the classroom and other supports that will affect your development. While I disclosed to principals and teachers that I had a visual impairment, I didn’t know special education or disability services could benefit me until much later, when I was a sophomore in college. I wish I had known. Many of my high school teachers did a great job with accommodating me, but a lot of broken bones and headaches (literally and figuratively) could have been prevented if I’d had a Teacher for the Blind or Visually Impaired and an Orientation and Mobility Instructorin high school. I would have been able to start the process of adjusting to my disability much sooner.

Outside of the school system, there are many other supports. Each state in the United States has a Vocational Rehabilitation (VR) program that prepares individuals with disabilities for employment. Most states also have a Division for Blind Services (or a name very similar) for individuals with vision loss. In Texas, our VR program starts working with children at the age of 10 to help them learn everything from independent living skills, to Orientation and Mobility, to specialized instruction in Braille, etc. If you have a significant enough visual impairment and qualify for these services, it is great to start early. However, you can also start as you are transitioning out of high school or college into employment. I found out about VR services after my freshman year in college, and started receiving Orientation and Mobility training, and later Assistive Technology, Independent Living skills training, and more. I highly encourage every family who has someone newly diagnosed with RP to contact their local VR program. There is also Lighthouse for the Blind and similar organizations in many states.

The above services helped me make great strides, increase my self-confidence, and develop more independent living skills. However, one of the things that helped me the most was meeting a young lady with RP. She was a mother to two beautiful children, graduated college with two degrees and managed her house independently. She had already been through what I was going through, and had great advice for me. She showed me how creativity goes a long way in terms of figuring out how to do things. She rocked being blind, and as one of the first people I knew with RP, she gave me a lot of hope.

She and her brother, who also has RP, introduced me to guide dogs. I always thought guide dogs were for individuals with total blindness, but in fact they can help individuals with RP, who might be able to see a person’s face but will miss every curb and bump or any obstacle that is not directly in front of them. Guide dogs can provide a lot of help in the nighttime, when the weather is bad, and as your vision degenerates. They can be that solid companion to help you with the emotional impact of vision loss. My Makiko has been instrumental in helping me maintain my level of independence. She has adjusted well to the changes in my vision, learning to help me with my new needs.

RP can be a roller coaster ride with its periods of stability and then sudden degeneration, constantly learning how to accommodate your new state of vision loss and continuing to do what you were doing. However, there are many resources out there that can make the roller coaster a little smoother. When I was diagnosed, my family and I all wish we had known about all of the services and support available. It would have made the transitions less of a headache.

I am now 26 years old. I am a huge family person. I am very active within my community. I am a full-time VR Counselor for the State of Texas and absolutely love my job. I live independently, love to travel, and have a great social life. I also have retinitis pigmentosa, and thanks to the amazing support and services I have now received, I live a very full life.

Computer Screen is HUGE

RP Truths #036: "Your computer screen and mouse pointer are HUGE." Thanks.
RP Truths #036: “Your computer screen and mouse pointer are HUGE.” Thanks.

This “RP TRUTH” made me chuckle.

As my vision has degenerated, I have started adjusting my ZoomText settings on my work computer to make the cursor larger and colors that contrast more. ZoomText is a program that individuals with low vision can use to adjust the size of things on the computer, contrast or color, size, etc.

The size of everything on my desktop is larger and the font is especially larger. So when a coworker asks me to help with something or when they come to see something on my computer, they often say “WHOA, that’s a REALLY green cursor,” or “WHOA… is that large enough for ya?” They are just trying to joke around, which is fine.. doesn’t bother me. It’s more funny to see their reactions. My boss is really wonderful though because when she shows me things on her computer, she always tries to enlarge them. I am also starting to use the reader on ZoomText more and more and soon will be transitioning to JAWS, a screenreader that most blind users use.

DD – Degenerative Depression

In October 2012, I was declared legally blind. Since then, I’ve had about two “periods” where I notice my vision is getting worse. Now, it’s hard to really tell when my vision got worse. My vision could be getting worse as I notice it, or it could have gotten worse previously and I could just be noticing now that I can’t see like I did before. That’s the tricky thing about RP. Also, the way RP and the brain works is the brain fills in the “missing pieces.”

This was once explained to me in the early stages of me losing my vision by a good friend, Misty, who also had RP. She explained it when talking about driving. We could be driving along and where we don’t see, our brain fills in with something, but of course not what is actually there… so where our brain thinks is just an empty road, could really be a kid walking across the street. We don’t see this kid walking across the street because of our vision loss and we hit them and seriously hurt them, or worse. This was one of stories and reasons as to why I voluntarily surrendered my license after I lost a good chunk of vision. I could never live with the fact of hurting or killing a child.

But anyway, back to the original point, the brain fills in the missing pieces for us and so sometimes it’s hard to tell if/when you’re losing vision. However, my vision has degenerated to the point where I can’t read conventional print anymore, can’t use some electronics with small print, can’t distinguish a lot of faces anymore unless I really know the person, etc. I’m becoming REALLY blind, and I was already pretty blind.

It’s hard to explain the “levels of blindness” to someone, especially if you already identify as blind but then you get REALLY blind. Over the past many months, I have experienced significant struggles. When I started this job a year ago, I could read case file labels, the scanner/copier, the phone Caller ID, etc. I can no longer do that. These “simple” tasks are making my job a LOT harder because I am not able to do them. So, I reached out to my previous Vocational Rehabilitation counselor who wasn’t able/willing to really help me at the time. So then I just let it be.

However then I really started to continue to struggle with simple tasks. I was still able to do my overall job because I found ways to accommodate and get the job done.. so nobody really noticed. But I knew things could be easier and I knew things had to change. My boss is also super amazing and I felt she deserved to know that I was losing vision. She also has a good friend who has RP and is totally blind due to it, so I knew she would understand. My boss reached out to a manager in the Division for Blind Services (the other division of the agency I work for) and asked for guidance. We are now starting to talk and figure out ways that could accommodate me, but part of that is opening a new case and receiving vocational rehabilitation services myself. Part of me is pretty excited about that – I can receive independent living training to help learn how to cook, etc with my current level of vision. I can still cook but things are getting harder like – telling when a chicken is fully cooked. Because they do this job daily and a lot of the counselors are blind themselves, they can also teach me tricks on how to do this job without much vision and they can help me prepare for work and life as my vision degenerates.

But part of me is really not ready for this. Dealing with all of this with my boss and other blindness professionals made it all the more real for me, that I really am losing my vision. I had essentially gone through the grieving process before and I had reached a level of peace with my vision loss. I am not at peace yet with my level of vision loss now. It really is like going through the grieving process all over again. The night after I had this talk with a VR Counselor for people with visual impairments, I was a complete wreck. I honestly can’t think of a time where I was more emotion and unstable than that night, other than when my Dad passed away. I tried to reach Steven, he wasn’t available. I tried to reach my best friend, she didn’t respond. I tried to reach my guy best friend, he was too tired and going to sleep and I didn’t want to bother him. I tried to reach my good coworker friend, she didn’t respond. I know none of them were trying to ignore me, etc., but I seriously felt the most alone I have probably ever felt. I laid down on my floor and cried and cried and cried for literally hours. I also started to have a really bad shoulder/back pain during that day and that pain was getting excruciating too, which led me to more tears. I couldn’t figure out how I was going to get myself together that night. I was very very low. I tried taking a bath for the first time in my new apartment and figured out the drain didn’t hold water in.. it was just a nightmare altogether. Makiko was super comforting though and kept coming to lay on me and keep me company. She had no idea what was going on.

I’m strong, and I can do this. But that doesn’t mean I’m not having my days of being depressed and stressed as I figure out this new stage of my vision loss. I’m ready to rock it, but still coping with it too.

November 21, 2013: Vocational Rehabilitation

I am very grateful for this little thing called VR (Vocational Rehabilitation) for many reasons. It is both something that has helped me tackle my vision loss and survive/thrive in undergrad and now grad, and it is also something that I have found my calling and passion in. I have mentioned DARS a few times throughout this blog but that is Texas’ Vocational Rehabilitation agency. They help individuals with disabilities gain and maintain employment, by providing them with a wide array of services from job coaching, interview skills, assistive technology, independent living skills, etc. They have helped support me through school and have helped teach me about the various types of assistive technology that can help me be successful at things that are now harder to do with my vision loss. I also have finally found something that I really love, and love going to school for.. and that is such a great feeling. VR does so much good for so many people. Yes, it is still a federal/state agency and is part of the government so there are some loops that still need to be jumped and some bureaucratic stuff to deal with, but it is a great agency and I am lucky to have wonderful people on my side to assist me with everything.

I am very grateful for VR.

November 19, 2013: Steven

I’m very grateful for having Steven by my side. He is my rock. He has been there for me through so much, and he knows me so incredibly well. We just “fit” together. He has been with me as I’ve lost my vision and constantly adapts along with me. He is such a sweet guy, gives the best hugs, and is just the love of my life. I’m SO incredibly thankful that I have been with Steven for so long and look forward to many more years with him. I’m very excited about spending our first Christmas together this year. ❤