I am quite certain that I am not qualified in any way to write an article about the latest RP research.  It is even a stretch for me to post on our blog regarding the random information I’ve gathered from my dear friend, the world wide web.  But I’m just in the mood for this kind of thing, which is likely a sign that I’m stuck in what Joy refers to as “cure mode“.  No need to be too concerned – I get stuck in this mode from time to time and I always manage to find my way back out again.  My eyes are, of course, burning from too much screen time, so here is my attempt to summarize the current research for you in order to save you the time and eye strain.

My number one tip for staying on top of the latest RP news is to sign up for Google Alerts.  Thanks to a tip from an east coast “RP friend” of mine, I’ve streamlined my research by using this method.  Just go to google and click on “news” at the top left of the page, enter “retinitis pigmentosa” in the search field.  Once the results come back scroll to the bottom of the page where it says “Stay up to date on these results” and click on “create an email alert for retinitis pigmentosa”.  Enter your e-mail address and you will start receiving daily alerts directly to your inbox.  The alerts that come through are a mixture of medical research and personal stories.

After reviewing the most recent RP-related articles, I am encouraged to learn that researchers are looking into several different approaches to RP treatment, including gene therapy, stem cell therapy, and vision preserving drugs.  From my perspective, none of it is moving fast enough.  Of course I don’t know or understand enough about any of this research to be a good judge of the timing and progress made (not to mention, all of the funding that is required to conduct this research!).

Most recently, I’ve learned that I could potentially stop RP from progressing and prevent getting pregnant at the same time.  Talk about killing two birds wtih one stone.  “A study in September’s issue of the Journal of Neurochemistry reported that a component normally found in the human contraceptive pill helps reduce vision loss in mice with retinitis pigmentosa. “  It doesn’t appear to have been tested on anyone other than mice so far, but check it out for yourself.  Apparently human trials will begin for this drug in October.  My sister’s OB looked into this specific type of mini pill, however, and apparently the drug manufacturers are no longer making it because it does a lousy job contraception-wise.  Hopefully if it does prove to be effective in the human trials, the drug companies will come up with a new one that is specifically for people with RP, including men.

I also want to point out that the FFB does an excellect job of posting the latest RP-related research articles on their site, so I frequently visit this website to make sure I’m not missing out on any new information.

Another sure way to stay on top of current research without having to peruse the web all day is to talk with people on RP forums and Facebook pages.  Joy and I belong to several amazing FB groups, including “Room With a View” (private FB group specifically for visually-impaired women), “Usher Me In”, “Help Find a Cure for RP”, and “RP Family”.

Stay tuned for our upcoming blog on alternative medical treatments for RP, which will include information about our upcoming trip to world-renowned Acupuncturist, Dr. Yu, in Vancouver, British Columbia.

Until then, stay hopeful and encouraged– even if the latest research doesn’t lead to an instantaneous cure today, there is always tomorrow.  And even if tomorrow doesn’t happen, people with RP are living amazing lives everywhere.

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.

Not driving sucks.  There is just no other way for me to put it.  Sometimes I try to put a positive spin on it by pointing out the $$$ I save on car payments, gas, insurance, etc.  Or I attempt to brag about how eco-friendly I am walking most places.  And I try to feel thankful for the extra pounds I manage to shed from all that walking.  While I am typically a “glass is half full” kind of gal, this subject is something that I cannot sugar-coat.

I found it somewhat amusing this past year when both my maternal and paternal grandmothers complained to me about having to take a break from driving.  They both have their licenses back now, but each had to take several months off from driving due to some health issues.  (neither health issues were vision-related)  Both of these energetic grandmas are in their early 80’s and have never had to experience life without driving until recently.  They both made comments to me like, “My family, friends, and neighbors have been so nice about offering me rides, but it just gets old after a while” and “I feel like I’ve lost so much of my independence from not being able to drive”.  Both grandmas live far away from me, so they couldn’t see the smirk on my face while they were on the phone explaining to me how difficult life is without a driver’s license.  It took them each about 10 minutes of complaining before I heard a pause on the phone, and then a “Oh….but you probably already know how that feels, right?”  It’s funny because I don’t think that most people, even my dear sweet grandmothers, really think about what life is like not being able to drive unless they experience it for themselves.

My husband is so great about driving me places, my friends and family are constantly offering me rides, and I am truly thankful that the people in my life go out of their way for me.  But just like my grandmothers pointed out – it gets old having to rely on other people.  It’s not like my car is temporarily in the shop and I need extra help for a week.  This is every day.  I constantly need to strategize about who I am going to inconvenience next, and I am always on someone else’s schedule.  There is so much coordinating involved, especially now that I am a mom.  I shouldn’t complain too much considering I just have one child.  Sometimes I feel dizzy just from listening to Joy describe all the coordinating she has to do just to get everyone in her household to where they need to be. “Ben has to be at work early, so friend A is going to pick Lucy up in the morning and take her to the playdate, and family B is going to pick Elliana and I up for the party mid-morning, and then Ben will meet us at the party at x time, and friend C will get Lucy and bring her to x spot so we can all head home”.  Not to mention transferring car seats, baby gear, etc.

I often wish I could just hop in the car and go somewhere – anywhere – by myself.  I want to get in the car with Joy, and just have it be the two of us.  I want to make an uncomplicated trip to the store with my daughter.  But instead I feel like this “eternal pre-teen” having to ask my mom to pick me up from the mall.

Despite all my complaints about not driving, I am often relieved not to have this added stress in my life.  The driving issue is a major topic of discussion amongst the RP community.  There are a lot of people with visual impairments still driving, and many struggling with whether or not they should still be driving.  From my understanding, the type of visual tests that most states require at the DMV typically only test central vision and side vision.  So, a person with low visual fields could still pass a driver’s test in many states.  This often leaves the decision of whether to continue driving up to the individual.  And of course, most people do not want to give up this independence.  Unfortunately, I have come across several devastating stories of people with RP causing fatal car accidents.  I think about how awful I feel when my vision causes me to accidentally stumble into someone, and so I can only imagine the horror that would encompass my entire being if it was me causing the fatality.  I recently heard about a woman with RP who thought she was still okay to drive, but did not see her neighbor’s daughter sitting on the curb one day.  This woman took away that child’s life, and ended up taking her own life as well.  I considered not including this story as it is very disturbing and probably a terrible way to conclude a post.  But I think it serves as an important reminder that although driving comes with lots of benefits, it is a huge responsibility.

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.

Continue reading

I am hand-writing this post.  Joy gave me the idea as a way to rest my eyes from the computer before typing the final draft.  I feel so old-fashioned and can hardly believe I still know cursive.  It’s nice, and has really nothing to do with what I’m going to blog about, but just wanted to share my enjoyment in the dying art of penmanship.

As I sit here in my cozy backyard reflecting upon our first dozen posts and subsequent comments, I am surprised by some of the feedback.  The responses from fellow VIPs (thanks for the snazzy acronym, sis) has been what we had hoped it would be and more.  It’s the excitement and support from our friends and family that has surprised me a bit, which is not to say that I haven’t felt their support before.  I guess receiving it all at once feels different.  But what surprises me the most is how encouraged I feel just from knowing that my loved ones are taking time out of their busy lives to learn about RP.

Joy and I have spent so much time/energy talking to each other about RP over the years that we often haven’t realized how little our friends and family know about it.  Prior to this blog, I had been of the mindset that if someone has questions or wants to know how I’m feeling about RP, they would approach me.  And there are quite a few that have done so.  But I’ve recently learned that not everyone feels they can openly talk about it – perhaps due to something I’ve said verbally or non-verbally.  And that is disappointing to me.  I want to be approachable, I want to be an open book.  Sometimes that is easier said than done.  Sometimes I feel so “exposed” when I talk about my vision.  I feel as though I am revealing this broken piece of myself,  But just because something is painful or uncomfortable to talk about doesn’t mean that it should be avoided altogether.

My hand is starting to cramp up, so I better wrap this up.  If you have RP, you may be surprised to find that the more you share with friends and family, the more encouraged you feel.  If you have a loved one with RP, find an appropriate time and place to approach them with your questions, concerns, words of encouragement, etc.

Taking an interest in what others are thinking and doing is often a much more powerful form of encouragement than praise – Robert Martin

Please excuse the pun-intended, inappropriate title, and I apologize that the corresponding story is not as funny as the title!

I must admit that my sister’s post, Flying Balls and Other Memories, while completely funny and moving, brought up some baggage for me…. those nervous stomach-aches I would get as my 3rd grade class marched down to the gym for PE class.  I never knew what lay ahead for me and the anxiety this produced is probably similar to kids with dyslexia right before they are asked to read aloud– the impending doom of knowing without a doubt that you are about to be humiliated in front of other kids.  And so begins my 3rd grade hockey unit in PE.

Take a moment to imagine the risks involved for a child without peripheral vision playing hockey.  Getting hit with the puck, maybe?  Or with a hockey stick?  I had the privilege of being smacked with both, one after another, right in the nose.  (Parents of children with RP– take note– get your child excused from PE during hockey, or at least a face mask!)

Fortunately, since it was elementary school, the sticks and pucks must have been made of plastic, although they still hurt.  The impact was enough to pop a blood vessel in my nose that caused quite a gusher.  I remember Mr. Houk, our PE teacher, taking me straight to the nurse’s office.  But when we arrived, the nurse was not there, so he left to look for her, leaving me sitting in a chair pinching my hose to stop the bleeding.  It was bleeding so much, however, that pinching it with the one kleenex he had handed me in the gym just wasn’t enough.  The kleenex was soon soaked, so I just cupped my hands under my chin as blood pooled in my palms (apologies for the disgusting visual– kind of a necessary part of the story though).

Mr. Houk returned after several minutes, and I remember feeling relieved to see him, thinking that he would surely feel bad for me and help me.  But my relief soon turned to confusion as he yelled, “What are you doing?!”  He quickly grabbed a box of kleenex that was near me, though out of my line of vision, and shoved it on my lap.  “Why are you just sitting there? Use these!” he barked, clearly angry that I was making such a mess and that I hadn’t seen the kleenex.  Hot tears streamed down my small face as I realized what I should have seen.  I felt embarrassed and ashamed and remember thinking to myself, “Why am I so stupid?”

Like Jenelle said in her post on PE class, I can’t believe that something that happened 24 years ago still causes me to tear up as I write about it.  I guess it’s one of those memories that I just pushed to the back of my mind, hoping it would disappear (what are those called, Psych. majors, repressed memories?)

As soon as I thought about this incident after reading Jenelle’s post, I decided to bring it up in counseling to figure out how the heck I can forget about it for good.  My counselor, of course, pointed out that I can never “erase” my memory, but she advised me to sit down and write about the incident, recount the emotions, but then to think about the truth regarding the incident.

All these years I have been thinking, “I should have grabbed the kleenex.  I am so stupid!”  And those are probably reasonable thoughts for a 9-year-old to have.  But I’ve grown up, and I need to put a “grown up” filter on the situation in order to see the simple truth.  The truth, of course, is that the box of kleenex was not visible to me.  An adult teacher should not have expected me to see it on my own and should not have shown anger or irritation.  I was not inadequate or stupid.

The funny thing about counseling is that some of the things you end up realizing are completely simple and obvious to others but remain a blind spot to the one person who could benefit from the truth.  So visually impaired persons are definitely not the only ones with blind spots.

Unfortunately, when you start believing lies about yourself at a young age, they tend to start building on one another– and eventually they catch up to you.  If you consistently perceive that you are inadequate and stupid, for example, you begin to believe that’s who you are and sometimes even act that way.  So as adults, we need to do some major deconstruction to maintain a healthy view of ourselves.  It’s hard work, and I must admit that I still have a lot of work to do.

Even walking into my daughter’s elementary school brings up a fair amount of anxiety for me but has also motivated me to deconstruct more stories from my childhood to find the truth.  My goal is to unravel the lies I believed about myself– all the messages that said, “You’re stupid and inadequate” so that I can both be and feel like an adequate, intelligent adult who does not allow vision or perception to define who I am.

I have read several comments on our blog that say “RP doesn’t have to define you”, and it’s an expression I am familiar with– I even wrote it confidently in a college essay about RP.  While I think this statement is true, I also think it can be misconstrued.  For example, at times I have worked so hard to NOT let it define me that, in so doing, I accomplished the opposite. If you’re constantly trying to hide something, you oftentimes end up revealing it even more.

Perhaps you have something in your life that you try to keep hidden.  Perhaps something from your past that you constantly try to forget?  Consider trying the process I went through above with your own past.  Recall the incident and fully go there– emotions and all.  Then deconstruct it as an adult.  What really happened?  What is the truth?  I hope you will find, as I did, that the incident says a lot less about who you are than you thought it did.