When you experience a loss in life, you experience grief.  We usually think of grieving as a process we go through after someone close to us dies, but I think we often forget that we also need to grieve other losses in life– divorce, major illness of a family member, moving far away from friends/family, and of course the loss of certain abilities.  I will always remember a woman in one of my Psych. classes in college talking about her son who lost four of his fingers in a machinery accident (not vision-related).  She got very choked up while talking about her son and how he was going through grief counseling to deal with the psychological impact of losing his fingers– literally pieces of himself that he could never get back.  I remember thinking it was strange how the human mind can be so attached to the body– to the point that it suffers when the body suffers.I know I’ve mentioned my counselor in a couple previous posts and have walked through the process of uncovering the truth about past negative experiences before (see “Flying Balls Part 2:  Totally Pucked”).  And while I am not trying to “play psychologist” here, I do want to share one other homework assignment that my therapist gave me that I think is helpful for anyone grieving a loss.She told me to write a letter about all of the things I hate about Retinitis Pigmentosa.  I have to admit that I was kind of irritated with this assignment at first, thinking that it would just be re-hashing all of my negative thoughts about RP, and I remember thinking “yeah lady, that’s why I’m here– to GET RID of all these thoughts and just accept it for what it is– not wallow in it!”  She then had me read the letter aloud, which was definitely difficult for me.

I completed this assignment after only a couple sessions, so it has been several months now since I have read this letter.  I find it amazing how I can read portions of this letter now without feeling the intense emotion that I once felt.  Many of the phrases, such as those depicting shame and humiliation, even sound kind of ridiculous to me now, which makes me feel proud of how much progress toward acceptance I have made.

Sometimes we have to face intense discomfort– even pain– in order to move forward.  I think I was stuck in the same RP rut for quite some time, and it has taken a combination of counseling, blogging, and talking with other RPers to start feeling good again.

I am including the letter I wrote below.  Like the hockey puck story, I feel pretty vulnerable throwing this out into the internet oblivion, wondering whether people I know will be reading my intimate thoughts, but I think it will be helpful for those with RP to show an example of just “letting it all out” for the sake of the assignment.

(note:  If you try this at home for purposes not involving RP, probably don’t write the hate letter directly to a person and mail it….Just sayin’)

Dear RP,

There are so many things I hate about you.

I hate running into the dishwasher. I hate running into objects that are completely obvious to others.  I hate having consantly-bruised shins.  I hate the pain you cause me.

I hate bumping into people (literally– not in the friendly sense)  I hate tripping over small children.  I hate missing an outstretched hand when being introduced to someone.  I hate the look on the cashier’s face when I haven’t seen a receipt as it is being handed to me.  I hate being asked if I am intoxicated when I am completely sober..  I hate when people know something is wrong with me.  I hate walking slowly in front of others because I am afraid I will fall down a flight of stairs.  I hate when I appear rude when I fail to wave to someone.  I hate the embarrassment of circling around a store, looking for my shopping cart, when it is right in front of me.   I hate the humiliation you cause me.

I hate all of the emotional pain I went through in school– mean, jerky kids who called me “spacey”, being hit in the nose with a hockey puck and in the face with a volleyball in PE class, being one of the last kids picked for teams and making our team lose games.  I hate that I had to be pulled out of class by a “vision itinerant” who knew nothing about me and did nothing to help me.  I hate that I had to grow up with you.

I hate not driving.  I hate having to plan rides for every little activity that my kids and I want to do.  I hate that every little change in plans, such as my husband’s work schedule changing, leads to more complicated plans.  I hate dealing with plans that should be very simple but end up being ridiculously difficult.  I hate missing events and time with friends/family because I have no way to get there.  I hate getting stuck places.  I hate waiting.  I hate having to ask for constant favors from people.  I hate not being able to take my 5-year-old out to breakfast or shopping just by ourselves.  I hate not being able to just get in a car BY MYSELF and go ANYWHERE. I hate that I can’t make a mistake, like forgetting something at home, without it affecting people besides myself.  I hate feeling like I am an “eternal pre-teen”, getting dropped off and picked up places at others’ convenience.  I hate the independence you’ve taken from me.

I hate having to fumble for my magnifying glass when I can’t read the stupid small print on the directions for my baby’s medication or the instructions on a game or the recipe on a box of risotto.  I hate not being able to read the menu in many restaurants.  I hate not being able to even find my way to the table in dim-lit restaurants.  I hate that I can’t even leave a movie to go to the bathroom alone for fear that I won’t find my seat when I return.  I hate not being able to go running at night.  I hate being nervous even on a bicycle.  I hate that my -5-year-old has to lead me into the dark locker room at the water park.  I hate not being able to read– or sometimes even find– expiration dates.  I hate not being able to read a lot of ingredients in items at the store.  I hate the daily inconviences you cause me.

I hate appearing sighted one minute and blind the next.  I hate the idea that I could sometimes walk better if I used a cane.  I hate having to tell people about my vision, or lack of it.  I hate the confusion of not knowing when to ask for help.  I hate the shame you cause me.

I hate disappointing my children.  I hate it when my 5-year-old wants to go to the library with me but is told no because we can’t get there.  I hate that I’ve messed up drawings or paintings of her’s when she has asked me to help her.  I hate that I can’t figure out how to put certain toys or puzzles together because I can’t read the instructions or figure them out visually.  I hate that I mistakenly run into my 1-year-old almost daily and feel guilty each time I knock her over.  I hate that I don’t see stains on my kids’ clothing and sometimes don’t notice food on their faces.  I hate not being a “normal” mom.  I hate that you’ve taken certain things away, not just from me, but from my children.

I hate not knowing how much sight I will have in the future. I hate wondering if my fields have gotten smaller or the print has shrunk.  I hate worrying whether I will be able to see my kids grow up or view the faces of my grandkids someday.  I hate worrying that the computer will have a negative effect on my vision as I order groceries online.  I hate wondering if I should be searching for a career that doesn’t rely as much on sight as teaching does.  I hate the uncertainty you cause me.

Really, I could probably ramble on even longer about all the things I hate about you.  I’m not sure it’s doing much good, though– maybe slightly therapeutic (well, I would hope so, since this started out as an assignment from my therapist!)  But now what?  How do I move past all this HATE?

Sure, I can think of a few areas in which RP has made me stronger– compassion, sensitivity to others,  detail-oriented planning, and humility.  But it just seems like these all came at quite a cost.

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13 thoughts on “Good Grief / Dear RP

  1. I juat got done reading this entry and I can tell you from probably line 2 of the letter you included I was crying. I feel all those things but rarely say them and surely do not write them down. Reading this has helped me understand that I need to face all those things I hate about RP and move on so I can be a better and productive mom, wife and just person in general. Thank you so much for sharing this!

    • Wow, I just got goosebumps reading your comment, Becky. I am SO glad that you resonated with the letter and that it is helping you move forward. I felt kind of “exposed” after posting it and wondered whether I should have, but seeing your comments reassured me that it was the right thing to post.

      Thank you so much, and blessings on your journey as a strong, productive person. Feel free to write and “vent” anytime!


  2. Joy,
    I LOVE your hate letter! It is perfectly written, right on the nose (even if we can’t find that precise spot!), and so relevant to ALL of us with RP. Very emotional, but once it’s out there, it loses its power over you – that was one of the purposes of the assignment (I am a psychologist, so I’m not playing!)…..the more we connect with others going through the same thing, the more we put it out there for others to be educated about what is happening with us, the better it is for everyone. By keeping it inside and staying silent or in denial, we allow RP to have ALL the power and it deserves none of it! Of course, sometimes, all we want to do is wallow around in our own misery – I know I can do that VERY well a lot of times…but your strategy is a great idea – put it down on paper and move on as best as you can!

    Just some food for thought – as a person with RP and hearing loss with Usher Syndrome, Type 2, I can add quite a few choice words in such a letter – about how all of the things that we can deal with because of RP, we can’t easily make up for it with our hearing. So I often hate that I might look like I am drunk, stupid, blind, and deaf! I’ll own two of those things, but not drunk and stupid!

    You and Jenelle are doing a fabulous thing with this blog! I hope you are reaching many people – and every time I am inspired to start my own blog, I stop myself because I don’t think I could write as well as the two of you are doing! Keep it up – I want to read more!

    • Thanks so much Roberta. Your comments mean a lot, especially coming from a “real psychologist”. 🙂

      I cannot even imagine not being able to compensate with my hearing– that must be truly frightening at times. It seems like you are getting very connected with the RP community, which is awesome and definitely helpful. From everything I have seen you post both here and on “Room with a View”, you are an excellent writer and would create an amazing blog (esp. with your psych. background!) Do you know if there is a specific counseling degree you can get to counsel people with life-altering disabilities? I feel like that’s something I would love to do but have no idea if that even exists!

      I love what you put about how getting it out there causes it to lose its power over us– so true!

      Thanks again, Roberta!


  3. Firstly, “hello from Australia”, I am a new reader. Secondly, thank you. Thank you for taking this courageous step and sharing your letter. I’m sure that anyone with RP or similar conditions will find at least one thing in this letter that truly helps them by way of knowing that someone else gets “it”. The value in that is monumental and by you being generous with your emotional journey, you are giving a great gift. I took a step in sharing the details of my eye conditions on my blog some months ago and it felt great. While I had always said that I was legally blind, it felt freeing to share the specifics. I have more to share in time when I am comfortable with putting it out there. I am thrilled to bits to have found your blog.

    • Yay– our first overseas reader (that I know of– the first to comment anyhow!) Your “Lucent Imagery” blog is really cool– witty, entertaining, thought-provoking and awesome photographs. I’m a bit jealous of you and your husband traveling all over Europe! Thank you for your kind and encouraging words and for being someone else who openly shares your experiences and gets “it”. Looking forward to following your travels and art– you actually sparked a new blogpost idea in my mind– VI Artists– I’ve seen a few inspiring ones lately!

  4. Yes, this was a courageous, heartfelt, and passionate blog. I am so proud of you both for being so bold about it! I feel every emotion with you when you share. Sometimes I wish I could experience it as well, just to know more and feel the weight of the reality of RP. Love ya.

  5. Joy,
    This has truly been the answer to a prayer…I continue to pray to find someone who experiences RP in the form that I have. I am “highly vision impaired” but I do teach every day. Unfortunately, many people want to use your vision loss against you…so tired of feeling stupid all of the time..

    I have goosebumps reading what you wrote. It is so on target with how I feel…

    My daughter is Kate, whom you met last weekend. The retreat has definitely sent grace my way. God bless you in all that you do…would love to meet you someday.


    • Thanks Linda! Seeing your comment is further confirmation of why my sister and I write out our experiences. Relating to others with RP is so incredibly helpful– to not feel alone in our struggles.

      I’m so glad that you are still able to teach despite your vision, though I know the daily stress can be difficult. I’d love to get together sometime to chat.

      It was such a delight meeting Kate (and your grandson is ADORABLE!0. I’m excited to get to know her more!

      Blessings to you too! Joy

  6. I am late to this blog…..I am late to most things due to RP…..this is the greatest representation of what daily life is all about with RP that I have ever read. I will be reading this blog for as long as I still can see the screen. You two are the greatest. Thank you for providing information to the masses that us shy people just cannot bring ourselves to do. Greatness. Thank You.

    • Scott,

      I am humbled and flattered by your comment. It is comments like your’s that make sharing pieces of our stories worthwhile. Thank you so much for reading, and if there are any topics or questions you’d like us to address that we haven’t already, please let us know.

      You will be okay– whether you can see the screen someday or not– you will be okay (I can tell by your uplifting words– they have a lot of life in them.)

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