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”:

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.

Accepting the Cane.. What about driving?

So I’m finally starting to accept that the cane is very beneficial and I should start using it.. despite the reactions that I will get from others. That took a long time to adjust to and accept. It seems this whole RP thing is full of adjustments when you don’t necessarily need or want them.

I’m still working on accepting the fact that I shouldn’t be driving now and probably never should drive. That’s just so HUGE. It’s like saying “byebye” to your independence when I know there are tons of people out there who are less able to drive than me, but still do. It’s the right decision, I’m sure of that, but it still sucks. I can’t go out with friends on a whim, go to the mall, go to the grocery store. I used to dream of going to the grocery store to pick up food for my Dad for some reason. It was just a “big girl” thing and even though I’m 22 years old, I still can’t do that “big girl” thing. Oi.