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.

I recently saw a completely true and hilarious phrase about RP on facebook (Thanks to Roberta on the “Usher Me In” FB page, who saw it on another RP page!)  It said that RP is “being able to see a pencil on the floor across the room but tripping over an elephant on the way to pick it up.” (honestly, if whoever originally said that is reading this, give yourself credit here because you nailed it!)

People are sometimes bewildered by the things I can– and can’t– see.  I remember a friend once looking for her car keys for an hour, and I ended up finding them within 5 minutes of looking!  On the other hand, I once thought a picture hook on the wall was a giant spider, and my dad looked completely frightened when I mentioned it– not for fear from the “bug” but because he realized how bad my vision must be.  I know we’ve written several posts about embarrassing incidents, which are easy to recall because they’re so numerous, but I was reminded today that there are those times I see things– and that’s something worth celebrating once in awhile.  While walking my toddler back from the park today, I happened to glance up and see a woman walking by with her golden retriever.  I kept walking, but then on a whim glanced back across the street behind me and realized that she was also pulling a wagon and possibly waving at me.  I then realized that it was someone I had met in our neighborhood a couple times.  I immediately remembered her and her little boy’s name and yelled “Oh hi, sorry– I didn’t recognize you at first!  Hi Anna!  Hi Devan!”She called back across the street, “That’s okay, I look different with my sunglasses on!” which was a very generous comment considering she really looked pretty much the same, and considering most people would have recognized her immediately if they had met her son and dog before, as I had.  She then went on her way and I went on mine, feeling very proud that I was able to both spot her across the street and call out her name and everything.  That probably seems like a silly thing to be proud of, but I know that there have been dozens of times I have walked past people I know, completely oblivious that they are even there since they’re outside of my line of vision, only to be told later that I “blew them off” or “seemed really out of it”.  I once shook a friend’s hand at church during the “greeting time” (which I always dread because I never know where people’s hands are to shake!) and apparently completely ignored the person’s wife who was sitting directly next to him, only to be told about it 2 weeks later by yet another friend!

And I’m sure there have been many other times I have unknowingly ignored someone without even being told about it afterwards.  (That actually used to happen a lot in college, but fortunately since my sister and I attended the same university, people just thought that it was the twin they didn’t really know who didn’t wave to them!)  So the fact that today I happened to look straight in her direction at just the right moment and call across the street made me smile to myself.  I felt like that friendly, PTA-type mom who knows everyone’s name in the neighborhood.

This “successful greeting” reminded me of a time in 6th grade PE when I somehow managed to catch a football (yes, you may have read my sister and I’s blogs about flying objects and how we NEVER catch or hit anything)   My hands must have just been at the exact right place at the right time because the football literally landed right in them, and i actually held on to the ball.  I was so ecstatic that I quickly began running to make a touchdown…. and DID…. for the other team.  I hadn’t really ever paid attention to the rules or touchdown line before because I figured I would never have possession of the ball, so all I knew was that I was supposed to run.  But it actually didn’t matter to me that I ran the wrong way; I remember feeling proud the entire day, as if I had scored the winning touchdown at the Super Bowl or something, because for once the ball did not fly past me or hit me.

So today I just want to celebrate the small things.  I forget about the word gratitude in my daily life.  I grumble in my head about my husband working weekends and feeling stuck at home.  I completely forget to be thankful that he is home many mornings, gets to eat breakfast with us and help get the kids ready.  I forget to be thankful for amazing friends and family who offer to drive my kids and me places.  I forget to be thankful for the things that I can see– those vibrant and beautiful colors that I get frustrated about when I confuse them and am corrected by my 5-year-old “No, mommy, that’s brown, not purple!” Who cares if I mix them up?! At least I can see them!

Regardless of where your vision is at today, find a good catch in your life – something small that makes you feel proud and thankful.  And smile about it.

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