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/

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!