This is a pretty specific gift idea and it’s only for ladies who are blind or visually-impaired.  Sorry to be exclusive on this one, but once you read more, you’ll understand.

In lieu of exchanging presents this year, Joy and I have decided to give each other the gifts of travel, mental health, and personal growth all rolled into one.  Merry Christmas!!! Continue reading

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I have never been good at letting go. Tense conversations, goodbyes, friendship changes, job transitions, moves….all keep me awake at night far longer than it seems they should.
So it wasn’t entirely surprising when my plane touched down in Seattle 2 weeks ago, and I couldn’t immediately let go of real life to enter vacation mode.
I’ve been in this quaint, picturesque Bavarian-themed village in the Cascade Mountains since the beginning of July, and I’m only just starting to decompress. Prior to leaving for this trip, there were a lot of stresses at home and I pictured this serene, oasis trip in which I just played and played with my children without worrying about my typical daily to-do lists. I had this vision of myself, unplugged and ultra-present. Continue reading

2011 - Birthday girls with Grandma

The call came at 3am Wednesday. Grandma is dying. She probably won’t make it through the night. If you want to say your final goodbye, you should come.

The lights at grandma’s house were dim when we arrived, and the air was heavy. Short, labored breaths rattled out of her lungs, sounding like a child with croup. She lay tucked under blankets in a hospital bed in the middle of her living room; my cousin leaning over her, inserting morphine tablets under her tongue to keep her comfortable.

Being on hospice for the past week, the call had not been entirely surprising, though she had been so alert and responsive the prior few days that we had thought it might be weeks until the end.  But here we were, in the middle of the night, beginning our final farewells.  Some family members sat perched on the queen-sized bed near her hospital bed, while others lingered on the couch in the adjoining family room, taking turns leaning over her and whispering words of love and gratitude. Continue reading

My grandpa Bob passed away a little over three years ago, and yet I still remember vivid details about him.  Like the way he would gently say “Easy now” to anyone acting a little too rough.  Actually, that was his response for a lot of situations – when his wife shouted bossy commands, when my siblings and I fought, when someone cut him off in traffic.  I can sometimes hear his soft words as if he’s still right next to me telling me to just take it easy.  And although I have so many other fond memories of my grandpa; I think that “easy now” is my favorite because it’s something that reminds me to calm down and be kind to myself and others just as he was. Continue reading

I vaguely recall learning about Stephen Karpman’s Drama Triangle in a general psychology class years ago.  I recently decided to take a closer look at the 3 roles Karpman pinpoints (persecutor, rescuer, victim) because I was feeling like I might be playing the victim role in some situations in my life.  I was trying to figure out why there are certain family/friends or even strangers who seamlessly offer me assistance in dark or crowded places and I feel no sense of shame or inadequacy.  I walk away from these situations feeling grateful for their assistance and yet still confident and independent.  While there are a few people in my life who awkwardly grab my arm and forcefully “guide” me in the direction they’d like me to go.  I leave these situations feeling stupid, embarrassed, helpless – a victim.  Rather than repeating these uncomfortable situations, I am trying to come up with new assertive ways to stay out of the victim role.

Simply communicating with people about my needs and preferences is key to avoiding victimhood.  Although I studied interpersonal communication as one of my majors in college, utilizing these skills can be challenging when it comes to RP.  I get nervous, I freeze up, I think all sorts of thoughts in my head, and cannot seem to effectively articulate myself.  I’ve started “rehearsing” various situations in my mind and with trusted friends.  I know the more I practice communicating my needs, the better I will become at reacting to or preventing awkward scenarios.  I’ve also spent time reflecting on past situations and what I liked or did not like about how I handled them.

In addition to taking a closer look at my own behavior in these scenarios, I also decided to learn a little bit more about the “rescuer”.  People that take on this role feel a strong need to help others, although their motives are often focused on their own self-esteem.  Now I am certainly not labeling anyone as a dysfunctional “rescuer” just because they’re eager to assist me when I’m having trouble navigating.  I’m not even entirely sure the drama triangle can be applied to the awkward encounters described above.  I am mainly trying to identify what these situations can teach me about myself and others.  After some careful examination, I have come to the conclusion that certain people just need a little extra assistance learning how to assist.  Sounds funny, I know.  But stay with me.

I think that the people who help me in forceful or awkward ways would choose a different approach if they could envision themselves with RP or any sort of disability.  I was touched by a story a friend told me recently about a photographer who wanted to know what it was like to live with RP after his best friend was diagnosed with the disease.  He made pinhole glasses for himself and wore them everywhere he went for an entire month.  The range of emotions he went through were very real, despite the fact that he knew he could take off the pinhole glasses at anytime.  I can’t say for sure, but I would be quite surprised if this photographer plays the “rescuer” role in life.

For me, one of the best ways to stay out of the dysfunctional darma triangle is to simply be aware of it.  Not every situation may play out exactly how I want it to, but I do have the power to be assertive and pre-emptive.  For example, at a family reunion this summer, everyone hiked down to the beach on the 4th of July.  I knew that I could make it down the steep rocky hill by myself as long as I walked slowly and carefully planned each step.  I also knew that there were some family members that would feel too uncomfortable watching me walk at such a slow pace and that they might start quietly gesturing each other to help me.  So rather than creating a situation that made me look or feel like the “victim” that needed a rescuer, I chose to simply ask an aunt if I could grab her arm on the way down.  I’m not sure if this was the “right” solution.  I don’t necessarily think every situation has a “right” answer because it’s different for everyone.  Someone else may have grabbed their cane or a walking stick from the woods nearby and announced “Just so everybody knows, I will be making my way down to the beach using this stick!” thus maintaining independence and settling onlookers potential fears.

Looking at the various roles in the drama triangle has been a real eye-opener (hee hee – I love those eye puns) for me in all areas of my life – not just RP.  I am able to recognize situations and relationships where I have taken on the roles of persecutor and rescuer.  Sometimes breaking out of these roles is as simple as investigating our own motives.  We all have control over our own words, actions, and choices.  We have the power to break out of any of the roles we’ve allowed ourselves to step into in the past.  I came across this quote that I think says it all for me in my struggle to stay out of the victim role with my vision.  “Argue for your limitations, and sure enough they are yours!” – Richard Bach

It’s been a rough few months.  Our entire family took turns suffering from everything from the stomach flu to pneumonia, I went through a miscarriage and bad reaction to anesthesia, and we moved from my in-laws’ house (where we lived for 8 months.) in the middle of it all.  Oh, and did I mention that my husband is in ministry? . . . And given that this all was happening right before Easter, his schedule was pretty crazy.

So this move — though it occurred at a difficult time — was a move forward.  If you’re wondering how this relates to RP, I’ll give you a little of the back-story on why we chose to Continue reading

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.

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.