Grief and Counseling – Page 2

Good Grief / Dear RP

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.

Flying Balls Part 2: Totally Pucked

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.

To Tell or Not To Tell: That is the Question

Since my visual impairment is not completely obvious upon meeting me, it is usually up to me whether I tell someone I am first meeting about it. As I mentioned in a previous post, I see a counselor in order to discuss some of my struggles with RP. She told me that one of the ways I will know that I have really accepted my vision loss is when I can freely tell people about it, whether the cashier at the grocery store or someone I’m hanging out with for the first time, and not feel completely emotional about it. I understand her point to a certain extent, but as my sister has mentioned before, I don’t want RP to be the first thing someone thinks of when they see me. It’s nice to get to know someone before saying anything, so that they know there’s more to me than RP.I realize this dounds a little crazy and some people (especially w/o RP) may be thinking that it’s not a big deal or that anyone who can’t look past a visual impairment isn’t worth getting to know anyhow. But I don’t think it’s anything people would do consciously or maliciously– I think we just sometimes have a one-track mind when it comes to first impressions. Let’s admit it; you see someone who is tatooed from head to toe with missing teeth– you’re going to form an opinion. And I can’t say that I haven’t made judgments in my head when first meeting people (“Oh, they seem a little full of themselves.” etc)

In the past, when I have waited a bit to tell a new friend, I always feel so relieved if they say something like, “Wow, I never would have known.”, as if I’ve somehow gotten away with something. Yet I cringe when I hear, “Yeah, I kind of wondered why you didn’t wave at me when I waved to you in the hallway or seemed kind of lost going into that restaurant,” or worse yet, “Oh, so-and-so already told me how you can’t drive and all about your vision.” as if they’re talking about something as insignificant as not having enough change at the pop machine. This may sound contradictory– wanting RP to be a non-issue while also not wanting it to be brought up so casually. I think it’s more that I feel it is my place to first bring it up to someone– not other people’s business to share when I’m not around.

I’m not sure why I think it should only be my place to tell people. It could be that I’m afraid incorrect information will be passed on (i.e. when a person I was talking to just thought it was something viral that would go away with antibiotics!)

I’m also not sure why I feel such a sense of shame and embarrassment about it– as if it’s anything I can even control. I remember walking into a restaurant about 10 years ago to use the bathroom, and since it was very dim, I circled the room several times before tripping over a stool and finally stumbling into the bathroom. A woman working at the restaurant came up to me and asked, “Young lady, have you been drinking?” I was mortified. One would think at that point I would simply explain that I’m visually impaired, right? But I was so taken aback and embarrassed that I simply found my way out of the restaurant as quickly as possible, got into the car where my husband, Ben, was waiting and began to sob. After I told Ben the story, we actually began to laugh, and I could definitely picture how a person stumbling around would appear wasted!
I do think that I have come a long way since that incident. When I went on a mission trip to Paraguay 4 years ago, for example, I told our team of people– most of them strangers– immediately. And I find myself speaking up even in stores now. Yet it still doesn’t feel natural to say.

Sometimes it feels more natural to just stretch the truth. When checking out at Trader Joe’s a few months ago, I couldn’t see the credit card screen to click “accept” or where to sign my name because the screen was really faded and dark. Thinking quickly, I said, “Oh gosh I’m not wearing my contacts today and can’t even see this screen!” The cashier was like, “Oh, that has totally happened to me– here, I’ll just put your pen on it for you.” Even the man in line behind me started talking about how blind he is without his contacts. I felt right at home and didn’t feel an ounce of embarrassment. But it wasn’t the truth!

Should I settle for telling white lies or hope that telling the complete truth will get eaier? Just the other day I was checking my 5-year-old into the doctor’s office and was asked to sign some papers. The receptionist saw me looking around for a pen and replied, “Oh, the pens are right there,” making a large sweeping motion with her hand, and walked away to make photocopies. I turned my head from side to side, scanning the counter, looking for this obviously-placed pen, but still did not see it. I looked down to ask my daughter to help me, but she was at the drinking fountain. I felt my face getting hot and my anxiety level rising before realizing that I was making myself frantic over a pen and needed to just ask for more help.

When the woman returned to the desk, I simply said, “I’m sorry I still don’t see the pens– I’m visually impaired.” She immediately handed me a pen and said, “wow, you’re doing pretty good then!” I know she meant it as a compliment, but for some reason i felt really emotional, as if I would start crying if she said another word to me. So I quickly sat down with Lucy and began reading a book to her, but then felt paranoid that the receptionist was watching us, wondering how I could read fine but couldn’t see a large container of pens. I, of course, started thinking about how I should have been more specific and just told her I didn’t have peripheral vision. Another tip that my counselor brought up is to have a specific, rehearsed phrase to say, pointing out that the more I say it, the more natural it will feel. I am willing to give it a try but am also curious how other people with RP handle this.

So all you RP’ers out there…. I know most of the comments thus far have been from our family and friends (thanks guys!) but if there’s anyone reading this who can relate, can you please comment on how you feel about telling people, particularly strangers, about your vision. Do you have a certain “line” or phrase that you tend to say? And does it get easier the more you do it?

I guess the question is not really “to tell or not to tell?” but “how to tell?” and “how much to tell?”

Flying Balls & Other Memories

I am afraid of flying balls. (please take a moment to snicker to yourself if necessary). Ahem, for a person with limited peripheral vision flying objects of any sort can be dangerous. But it seems flying balls have been the ones I’ve had to deal with most in my life. I can recall being smacked in the face by one on several occassions. And what better time is there to be smacked in the face with a flying ball than elementary school?! Continue reading “Flying Balls & Other Memories” →

The Narrow Tunnel of Compensation

I always felt I should possess some amazing talent to reconcile my missing rods and cones. Perhaps if I stood out as a musician, athlete, or scholar, I would not stand out for my lack of vision.

My parents took me to voice lessons with a nice, old nun in a dark, scary convent when I was eight. Yet “Go Tell It On The Mountain” practiced 50 times over did not improve my voice. I auditioned for the Young Naperville Singers in hopes of improving, but the director said she had heard kindergartners who could hold notes better than my third grade voice. That ended my hopes of becoming a female Stevie Wonder! I also tried my luck at cross-country, a fabulous sport where there is no unforeseen ball to smack you in the face. I was a good runner, but didn’t stand out as the one who won the races, and in my narrow vision of compensation I wanted to be that winner.

I think we’re taught this type of compensation in America. If you’re not right-brained, you better be left-brained: and if you’re not left brained, you sure as heck better be right. If you’re both, you’re blessed. If you’re neither, there’s something terribly wrong. If you’re lacking in looks, you better have a superbly gregarious personality. If you have no personality, you better at least be a genius. And on it goes.

I’ve come to learn that we should pay attention to our strengths, but we shouldn’t rely on them to block out our weaker areas. Our challenges will still be there, and we must deal with them. Our equation of wholeness is oftentimes flawed-a visual impairment is not a -50 and a great voice is not a +50. A visual impairment could be a +10 and a great voice a -25, depending on how they are used to shape and teach us and those around us.

“Normal”

Ever since I can remember, I’ve wanted to be “normal”. I’ve wanted to just blend in and not make a spectacle of myself (which is pretty hard to do when you’re running into poles and such.) I’ve literally pictured what my life would look like if I was “normal”, and by normal, I of course mean perfectly-sighted. I would live out in the country– or maybe I wouldn’t– but I’d at least have the choice to live in the boonies because the “normal me” could drive. I’d have some job that required a lot of driving– like a pharmaceutical rep– or maybe I wouldn’t– but at least I’d be able to choose a career that involves driving. I’d play beach volleyball– or maybe I wouldn’t– but at least it’d be an option on a hot, summer day. You catch my drift; “normal me” has a lot of options.The funny thing is that most of my “normal me” fantasies don’t envision my life all that different from what it is now– I’d still be married to the same amazing man, have the same sweet children, the same supportive friends, live in a similar house with a similar career path, but I’d be a much “better me”. I’d look better (because I’d be able to do my makeup better if i could see it more clearly, of course!), act funnier and wittie (because I’d see funny things all around me), be a more-together and fun mom (wouldn’t lose a thing if I could see!), be more outgoing, athletic, involved…… I’d just be me with a little boost.Okay, so “normal me” is beginning to just sound like “perfect me”. Definitely not saying I would be perfect, but I really can’t help but think I’d be BETTER. I know that most people have their “thing” that makes them feel abnormal– the family they grew up in (probably half of America for that one), some physical trait that they don’t like about their face or body, some secret about their past, some act that they wish they hadn’t done or hadn’t been done to them…… there are probably very few people who would say they feel “normal”, whatever that word really even means.

But if so many people don’t fit into being “normal”, why do I sometimes feel like I am the only one who sticks out as “not normal”? And if I really do enjoy most aspects of my life, why do I daydream about changing it? Let me re-phrase that: why do WE daydream about changing it? Based on many of the RP chatrooms I’ve visited, I know that this is something we all struggle with, and I don’t think daydreaming about being perfectly sighted is necessarily unhealthy. But I do think that we should pay attention to how we view ourselves and the vocabulary that goes along with those views, especially the “n” word.