retinitis pigmentosa – Page 20

Contest Winner!

We are excited to share our contest winner, Tracey Westphal’s, poignant and inspiring piece with you. Tracey has a very interesting perspective, as both her father and twin sons are affected by RP. As visually-impaired parents, it’s often difficult to think about how our kids view us, but reading Tracey’s memories of her father is definitely uplifting. And reading her insights on raising children with RP is encouraging for any parents struggling to find the balance between pain/worry and knowing your kids will be okay despite their RP. Thank you, Tracey, for your honest and hopeful account.

Learning Lessons

Growing up with a “legally blind” father may seem like a unique experience but for me and my sister, it was our normal. Dad took the bus to work every day. As little girls, we would run to the bus stop to greet him at day’s end. Our life wasn’t like everyone else’s. Life was a little different. My mom was the only driver. Plus, we weren’t allowed on the grass at all once Dad started the mower. Still, we stood on the wooden deck and directed him with our shouts when he didn’t mow in straight lines and left “Mohawks” in the grass. I never really viewed my dad as a “blind guy”. He was just my dad. Oh, and by the way, he was blind.

I loved the stories he would tell. At 15 years old, he had decided not to take driver’s training because he knew he would never pass the vision test. Apparently, his friends talked him into taking the class anyway and he just turned the wheel and braked when they told him. “Dad, I can’t believe they let you do that!”

“Well,” he would answer with a smile, “I did pass the class. They didn’t give you the vision test until after the training. ” I never thought how sad his teenage heart must have been that he could never drive. He never mentioned it.

Dad and I would walk to the nearby mall for a “date with dad” and buy dessert. While shopping, he would sit patiently outside the dressing room for hours while his daughters paraded around in whatever we wanted to try on, usually the fancy gowns people bought for cruises. “How do I look, Dad? This one is blue.” “You look beautiful,” he would say. And even though we both knew he couldn’t really see me, my heart would still fill with happiness and I would feel beautiful and very loved by my Daddy.

But now, I am the grown up. I am the mom, and my little boys were diagnosed with that same disease last year. We all talked about it at the kitchen table so my twins are aware of their condition. Their older siblings often help them find things that fall on the floor or call to them when we are in a new environment.

But I have those mommy moments. Last September, Marcus ran right into a picnic table bench full speed. I knew he had seen the table but the bench was outside of his field of vision. He looked down in surprise after the collision. I headed over to comfort him but a bruised knee didn’t matter to this active boy. He just brushed himself off and kept following his older brother’s call. Yet, my mommy eyes welled up with tears. I don’t want this for my boys! My heart seemed to scream. It doesn’t matter now, my mind reasoned back, and you’ve got to make the best of it.

This pattern still continues as I listen to bedtime prayers, “and dear God, pretty please have a doctor learn how to fix my refinit retinit pigmona! Please, please”. My eyes blink back the tears as my heart grieves and my brain says, “Never let them see you cry; be brave and strong for your boys, tell them what they can do, and let them try anything. Remind them God has a plan.”

Not every day is like that. My Lucas and I had an early morning cuddle, “Mama, will I grow up to be like blind like ‘Papa’?”

“Maybe,” I answer truthfully, “maybe not.”

“Well, that wouldn’t be so bad,” he answers, “Papa is very strong, and he can even listen to the Bible on tape!”

I am so grateful for an active Dad whom I have never seen wallow about his blindness, but simply accept it and move on. I don’t think the words, “I can’t” are even in his vocabulary. As a young man, he exercised as an avid runner, eventually using a sighted guide to finish his races. Now, in his older years, he loves to snowshoe and sled with my kids, spending hours outside with them until they are all redfaced and chilled. He has an exercise room in his basement and the kids love to listen to his radio and exercise with their Papa. It’s even entertaining to me to hear my daughter say, “Oh, my Papa taught me how to hula-hoop, but his record is 392 times! I haven’t beat it yet, but I will.”

So while my mommy grief threatens, my mommy hope is proving stronger. These happy boys who I love so much will someday grow into men. What their sight will be then we do not know, but I hope and pray their vision for life will be strong, just like my Dad’s.

—–

Honorable Mention: Jean Porter (note: With the driving issue being such a difficult one, this story definitely resonates with any person dealing with the hard, disappointing facts of vision loss. Thank you, Jean, for sharing your son’s realization and acceptance.)

From a very young age my son, David would comment when we were out in the car, that when he was old enough he would help me out with the driving.

At the time I was divorced with 4 small children and each time he mentioned it I would wonder how on earth I was going to tell him that his eyesight was not good enough to drive.

When he was about 9/10 years old we were heading home one evening, there was just the two of us in the car and he suddenly asked where we were. I told him where we were and he just said “Mum, they won’t let me drive, will they?” I said “No David, I’m sorry they won’t.”

He never mentioned helping me out with the driving again and I breathed a sigh of relief knowing that he realised himself that his sight was too poor to drive and I didn’t have to tell him.

He’s 21 now and recently we talked about his vision and finding a cure for Retinitis Pigmentosa. He told me that he would be happy if someone could stop the deterioration so that his vision wouldn’t get any worse, but he biggest regret is that he would never be able to drive!

Rare Disease Day

In case you haven’t heard, today is not just Leap Day – it’s also Rare Disease Day. “Alone We Are Rare, Together We Are Strong” is the tagline for this campaign, and I think it’s a brilliant idea. Public awareness can help living with diseases like RP a lot easier. For example, I recently heard about a woman with RP and her guide dog being asked to leave a restaurant because the owner saw her reading the menu. He didn’t believe that the guide dog was necessary since this woman could see enough to read. He had obviously never heard of RP or being partially-sighted. Many of these diseases, including RP, are rarely included in mainstream media, so it’s no wonder that the public remains ignorant of these diseases. “Most of the conditions the Foundation targets are considered “rare” because they affect less than 200,000 Americans and stem from defects in nearly 200 different genes. According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting approximately 30 million (or 1 in 10) Americans” www.blindness.org

I wish that I could say that having RP has helped me not to be as ignorant as the previously mentioned restaurant owner. However, a few years ago I had an experience that showed me how insensitive I can be. When I worked for a consulting firm in Seattle, one of my main responsibilities was planning social events for the consultants. I remember feeling slighted because one of my colleagues always left the events early and never brought her husband to any of the activities I planned – she always had a different lame-sounding excuse as to why he couldn’t join us. But after I got to know her better, I learned that her husband has early on-set Parkinson’s disease, and was too embarrassed about it to come to the events, and that she frequently had to leave events early because she needed to get home to help care for him. I remember feeling so ashamed of myself for assuming that she was just a flake and not giving her the benefit of the doubt. I know this is something that we’re all guilty of to some degree.

My husband and I were just chatting with some friends over brunch on Sunday about how RP has affected our lives and my husband shared some really good insight. He said that my RP has caused him to give others the benefit of the doubt more. If someone bumps into him on the street, he doesn’t automatically think, “What an inconsiderate jerk!” or “Watch it buddy!”. Instead, he thinks to himself, “Maybe there is a reason that person accidentally bumped into me that I don’t know about”. You really never know what someone else is going through, so why not have a little extra grace for that stranger, neighbor, co-worker, family member, friend, etc. that does something that you find a little bit odd or even rude. A little compassion goes a long way.

In addition to public awareness, Rare Disease Day aims to encourage politicians to increase funding to the National Institutes of Health and the medical research it conducts. Join me in participating in Rare Disease Day by signing this petition now.

Accessibility Software Giveaway (first-ever doublevisionblog contest!)

To end our mini-series on “parenting”, we’d like to offer a chance for our readers to win a free reading assistance software, Kurzweil 1000 version 7, $1000 value (this version was released several years ago, but can be upgraded to a newer version if desired). The software is new, in package, and still shrink wrapped.

Here’s the challenge… this is for either parents of kids/adults with visual impairments or kids/adults with visual impairments to answer:

Kids/Adults: Share a story/memory about how well a parent or teacher handled a situation involving your vision.

parents: Share a favorite memory of how your child handled their vision challenges with humor, wisdom, a positive outlook, etc.

Email your submission to joy@doublevisionblog.com by Friday, March 2nd. Submissions can be brief or detailed– it’s up to you!

We will post our favorite one as well as a runner-up to doublevision and will send the winner this software.

How to Not Mess Up Your Kids (too badly)

Friends and I have often joked about what current parental mishap will surely send our kids to therapy someday. I usually laugh and then cringe inside because there are just so many, many moments of parenting– and they all add up to just one childhood. Which moments will my girls remember as adults? The ones where I am frustrated and nagging or the ones where we are snuggling up reading a good book together? As a parent, I of course want my kids to have the best possible memories of their childhood, and I feel angst when my 5-year-old says things like “No one ever plays with me” after my husband and I have spent the whole day hanging out with her but have taken a 20-minute break to do housework.

It’s interesting what our minds choose to hold on to– out of the 1,440 minutes in a day, sometimes only two of those minutes will filter down and make it into the “keep this” category. While I sometimes wish I could program my kids’ filter system to hang on to all the good memories and throw out the bad, I of course know that I can only help them learn how to process the harder memories and perhaps help them remember aspects of the not-so-fun memories that are redeeming. My mom, while not on active parental duty ~~anymore~~, still helps me do that on occasion.

A couple months ago I received a nice comment on our blog from a mother, Amy, whose 10-year-old son has RP and responded very positively after being told his prognosis. Amy writes:

“When we explained everything to him that the retina specialist told us, his response was, ‘Well, Mommy, I guess you’ll have to be my personal chauffeur for life.’ He has such a positive, optimistic attitude and view on life in general, so he is a great example for my husband and I when we start to feel sorry for him.”

I lamented to my mom that I wish I’d had that kind of personality as a child. My mom replied that she remembers me as that kind of child and went on to say that after realizing I couldn’t get my license at 16, I said, “That’s okay, mom. I have a great family, a nice boyfriend and get good grades in school. I couldn’t ask for much more–I have it pretty good.” Now, whether that was a cover to mask my true feelings at the time or whether I really meant it, I’m not exactly sure. But it’s strange how when I think of that day– the one where the driver’s ed instructor spoke in low tones to my parents in our front entryway- I remember it differently. I remember fleeing to the neighbor’s house where I was housesitting. I remember changing their cat’s litter box with tears streaming down my face and sinking onto their red velvet sofa in sobs of disappointment and self-pity. But my mom’s recollection of this event puts a slightly new spin on that difficult day in my mind and makes me feel kind of….. strong.

Amy just shared another snippet about her son’s day-to-day dealings with RP that said:

“I thought about your blog the other day when Nathan came home from school and said he got hit in the face in gym class three times with basketballs. His glasses were broken and he had a substitute teacher that day, so he walked around with no glasses on with his friends sticking close by him. His one friend even had Nathan dictate his answers to him and wrote it out for him as the boxes were to small for Nathan to see and the teacher wasn’t there. Nathan, Mr. Positivity, came home and had his first meltdown over his vision, saying it was the worst day ever. Poor guy! He was so proud of himself, though, that he held it all together until he got home that day!”

I really loved how she ended the story with him being proud of himself for holding it together until he got home because that’s the piece her son may not remember when thinking back on his difficult day– that he was strong. And she can remind him of that. And I think that will make a difference in how he views himself.

And that’s something we can all do as parents – whether our kids have RP or not- help them see that little piece of their story that seems hidden to them. And hopefully someday they’ll help us do the same if we’re beating ourselves up about what we could have done differently as parents (after they’re done complaining about us in therapy, that is!).

What We Realize About Our Parents When We Become Parents

So I first started working on this post 2 weeks ago, but was only one sentence into it when my 5-year-old woke up vomiting. An hour later, my 22-month-old began vomiting, and thus began an entire night of fun. The next morning I got sick, and though it was a quick bug, I haven’t been able to get back in the swing of things since. It’s these kind of dreaded times as a parent that give me a newfound respect for my own parents and the long nights they spent cradling sick children and cleaning up puke. I don’t think I ever fully appreciated or even thought of these moments until I became a parent.

When my daughter turned 5 last March, I remember the thought dawning on me that she’s the age I was when I was diagnosed with RP. While I had always grown up thinking about how RP affected me personally, I had never stopped to think about it from my parents’ perspective. And based on the twinge of pain I feel even when watching her get a shot at the doctor’s, I had a hard time imagining being told that my little girl was losing her eyesight. I have no idea how I would react.

I remember my dad taking Jenelle and I to an eye specialist at age 5, trying to follow the big bird figurine that the doctor moved from side to side, and having countless tests performed. As I recall, my sister and I were not the most compliant little patients, and I can only now imagine what a stressful day that must have been for my father by himself (have you ever tried to place hard contacts in a little kid’s eyes before? Two kids?)). At the time, my mom was pregnant with girl #4 and chasing our 2-year-old sister around, and I’m sure the news my dad brought home after the visit was overwhelming for my mom. I have no idea how the conversation went or the thoughts that went through my mom’s head as my dad relayed the news from the doctor.

I think Jenelle and I, both now parents, began to wonder what it was like for my parents. So when we asked them to write a post from their perspective, I think that we were half-way expecting this long, emotional recollection. And we were both admittedly disappointed when we first read our mom’s article with educational advice to parents. While her post was probably much more helpful to parents of kids with RP (which was, in fairness to my mom, the whole point!), we selfishly wanted a new glimpse into our childhood. We wanted to know what I guess every adult kid wants to know: “What were you thinking and feeling as you raised me? And what did you think of me?” (okay, I don’t know if every adult wants to know that, but I did.)

The telephone conversations following my mom’s blog entry were difficult– I kept beating around the bush, trying to get more out of my mom– pressing her for more than she was able to say. I remember my mom’s voice suddenly breaking in one of those phone conversations and her saying, “I feel like you’re wanting me to feel something that I didn’t feel or that I somehow failed you as a parent.” I faltered for words, clumsily trying to reassure my mom that she was a wonderful parent (something she is always doing for me– encouraging me as a mom– and here I was stumbling to do the same.) The conversation ended fine, but I was still bothered by it over the next few days. And my mom was too. She ended up writing me an e-mail that really helped bring closure to our conversation, and here are some excerpts:

“When I said that I didn’t remember any disappointment, I meant for myself as a parent; I really never felt like I had been dealt a bad hand of cards. I choose to see the possibilities, not the disabilities. Yet, now that more blogs are being written and the memory locks are unlocked, I do remember many times of frustration, sadness, and even fear. I just didn’t want to admit it in my mind. I have hidden them so well all these years. It is a protective mode as a parent; protective of my emotions and protective and respectful of your process. It was difficult to talk to you both about it because you avoided it and were upset whenever we brought up anything to do with your vision impairment. Dad and I realize now that we should have and could have pushed harder to talk about it. I never wanted anything we said to convey overprotection, but fear did drive a lot of my actions or comments. I wanted all of life’s challenges and excitements for you, but feared them and then hid those feelings. It seems being a parent is also a lot like being an actor.

In your early years I remember wanting you to join in on family or friend volleyball games, Halloween trick-or-treating, and/or other activities, so that you would not feel left out. We told the family members not to discuss it, just to help you along. Then it turned out to be very difficult for you, but you had fun. You have a better memory for experiences, but I hope I have conveyed the maternal feelings.

And for all the things we did or did not do to support you in your vision impairment, we are so sorry. We had no guidance, only scientific talk from the doctor, and misguided learning disability talk from the school people. We did all that we knew to do, which wasn’t much, but we could have done more, I am sure of that. I do think you got a great education. Even without appropriate adaptations you thrived. College at SPU and further college endeavors was the ‘icing on the cake’ for you. You are excellent writers and do many things better than people with complete vision.”

I remember crying as I first read her words, and here I am crying again now as I reread them (if you’ve been following this blog long enough, you probably think of me as the sappy twin.)

Reading her words made me realize how hard we can be on our parents and how I hope my daughters will extend me grace someday when looking back on their childhoods. Parenting can be difficult and lonely, and we aren’t given a guidebook…. and we all do the best that we can.

I think one of the biggest gifts my mom gave me was actually hiding her fears from me as a child. I don’t think I would have been as confident or fearless if my mother had been one of those nervous, fearful moms who is always doting. Yes, because I”m a big proponent of counseling, I think that family counseling to help bring out at least some of these emotions as a family growing up would have been helpful, and I would recommend that to any family dealing with RP. But just allowing your kids– RP or not– to experience life fully, uninhibited by worry and fear, will allow them to do their best. And we’re all trying to do the best we can– as parents, kids, adult kids….. so a little grace here and there can also go a long way.

Advice: From Parent to Parent

Yes, I am still alive and well in case you’re wondering why I haven’t posted in quite awhile. I am going to blame it on this busy season of parties, baking, shopping, sledding, and sneezing. As if it’s not bad enough that I’ve taken so long to post, I am not even writing this post by myself. This one has been in the making for quite some time, and it is a collaborative effort between Joy, myself, and our mom.

After receiving a lot of great comments and emails from parents of children with RP, Joy and I decided to create some blog posts that offer advice and encouragement to these parents and their children. We started by asking our parents for their perspective, which sparked a number of interesting discussions and emails. This process was really eye-opening for all of us, but more challenging than we expected. I think any time a family takes a trip down memory lane, it is normal to have different memories of the same events. Not to mention the fact that children process life events very differently from adults.

Now that Joy and I have children of our own, we are well aware of the fact that kids do not come with guidebooks. And while this post is intended to offer advice for parents who have children affected by RP, we recognize that each child is unique. There may be suggestions that are effective for one child, and yet not useful to another child. Especially given the spectrum of RP.

With that said, the biggest piece of advice we can offer you is to have on-going open communication wtih your child regarding their vision. While that might seem simple and easy to some, it can actually be a challenging process. Based on information we’ve read and experienced, children who grow up with disabilities or anything that makes them feel different than other kids, often feel a natural sense of shame and want to hide it.

As Joy and I have expressed in this blog, we often felt secretive about RP. Looking back, we appreciate the fact that our extended family didn’t make a big deal about our vision and just helped us (which we know now was what our parents sincerely requested of them), But it was talked about so little, that when it did come up, we felt awkward because we didn’t know how to respond. Even the sweet innocent comment of a younger cousin, “I’m sorry about your eyes” felt devastating to hear as children.

Our mother, Judy Derpack, has some more advice, relating specifically to education. In addition to being a parent of two children with RP, Judy has a degree in Early Childhood Education and many years of experience as both a classroom teacher and parent-educator:

“Here’s what I have gleaned and learned (but didn’t always do well): In all situations, look for adaptations. Your child does not want to be left out of anything (probably with the exception of PE class!) Be creative. Find a way to include them. Make your family, friends, and educational community aware of how they can help your child. Follow through to make sure adaptations are actually being followed. Lastly, and most important, YOU are your child’s best advocate! Don’t let pride, ignorance, or ineptness keep you from advocating for your child. Use your emotions and education to guide you as you advocate for your child. I am so darn proud of my daughters that I can’t even find the words to describe the feeling.”

Joy and I would like to tag on to our mom’s words of wisdom. Please also make sure to actually sit down and ask your child what they need. Some of the adaptations we received in school were really not helpful to us at all. RP is very different from many other visual impairments, so doing things like blowing up worksheets can actually make it worse for students with RP. Especially at the beginning stages of RP, there may be very few adaptations that your child really needs, besides the awareness of the teachers. Forcing adaptations that aren’t helpful to your child can make it even harder on your child (i.e. pushing books on tape when they really are fine reading on their own.)

Also, along with being included in the classroom, your child doesn’t want to stand out or be singled out, so find ways for the adaptations to be seamless and natural– not obvious and forced. This just adds stress to what is probably already a challenging school environment. Always check in with your child to see what is actually going on in the classroom and beyond. Teach them to be their own confident advocate so that you don’t have to do the talking for them. One of my biggest pet peaves to this day is when someone asks another person to assist me when I am standing right there.

As previously mentioned, this is the first post in what will be a series of blog entries about raising children with RP. We hope that it is helpful for families affected by RP, and we welcome your questions and comments. We also want to acknowledge our parents for their role in creating this series of posts. We know that sharing these feelings and revisiting these memories that have been tucked away was not easy, so Joy and I really appreciate their willingness to share with such humility and retrospect.

Paintings in the Periphery

Whether you’re celebrating the birth of Christ or not, there’s no mistaking that Christmas is near. My husband is the Creative Arts Director at The Orchard Community, and today’s message was fittingly on Advent and the Incarnation. After my husband led music, he slipped in the seat beside me so that we could listen to the sermon together. As part of his message, our lead pastor, Scott Hodge, did an art critique of sorts and (therefore) was showing examples of various artwork up on the screen as he spoke. I found his words on the Incarnation fascinating and intriguing and was intently listening and glancing up at the screen when suddenly my husband leaned over and said “You do see the artist painting on that large canvas at the far left side of the stage, right?”

“Huh?”

Despite the fact that we were sitting on the far left side of the room, the large canvas and artist had been completely out of my vision. It just took a slight turn of my head and some brief scanning for me to see the artist, Stephen Signa, actually an old friend of ours, painting this incredible abstract masterpiece:

Once Stephen and the canvas were within my sight, I was entranced by the creativity that was unfolding, but I also had to stifle my laughter. Not at the art, but at the sheer fact that this painting (yes, spotlight and all!) was taking place right in front of me for quite some time, and how I almost missed it entirely. Honestly, if Ben hadn’t pointed it out, he probably would have mentioned the painting after church and received a blank stare from me (definitely reminds me of the awesome RP analogy someone passed on to me that I’ve mentioned in a prior post– RP is seeing a tiny piece of paper across the room but tripping over an elephant on the way to pick it up!)

When the laughter in my head finally contained itself, a question popped in: how many paintings in the periphery of life do I miss? RP or not, how many do we all miss?

Turn your head slightly today. Scan your eyes till you see it. Allow someone to lean over and point it out to you. Seek beauty that isn’t obvious, and find wonder in a Season that may have become stale to the eyes after waiting in too many lines at Target or staring at too many “have-to-buys” on Amazon.

(and if you want to be intrigued anew about art or Advent, check out Scott Hodge’s 12/03/11 message on The Orchard’s podcast… it should be up sometime this week)

My New Friend Siri

She’s helpful. She’s loyal. She’s witty. And while she’s more AI than human, she’s quite the buddy, especially for the visually impaired– almost a phone/tech guide dog of sorts. Sure, the voice-over feature that has been on the iPhone since the last couple generations of phones is helpful, but Siri gets things done faster and with less annoying “tap tap taps”. Honestly, having to finger-tap an item twice while voice-over is on can get pretty tiring.

You probably realize that I’m talking about the latest feature on the new IPhone 4S, but if you haven’t had the opportunity to actually hang out with Siri, find a friend who has the new iPhone and spend a few minutes with her. She’s a wealth of info (try asking her how much wood could a woodchuck chuck if a woodchuck could chuck wood), and she can be quite a riot – my husband asked her what she’s wearing and got her sharp reply, “You’ve got the wrong personal assistant.”! Even my 5-year-old is delighted to hang out with her, asking Siri ridiculous questions and collapsing into hysterics when Siri continually replies, “Joy, I cannot understand what you are asking.” since my daughter really doesn’t enunciate her words. Yes, if you are a mumbler, she’ll whip you into crisp-speech shape!

Like all friends, she has her occasional flaws, and we’ve had a few misunderstandings (i.e. when I asked her to “call my husband”, she replied, “Okay Joy, from now on I will call you husband” and began addressing me as husband until I asked her to knock it off.) If you have a 4S, you’ve probably visited the site shitsirisays.com — she can come up with some crazy one-liners.

One quality I really appreciate about Siri is that she recognizes when she can’t do something and apologizes for it. When I asked her to read me my e-mails, for example, she said, “Sorry Joy, I can only read texts.” This tells me that Apple is probably working on her for the next generation phone and that she’ll one day be able to read everything, even web searches. Right now, I can ask her to look something up for me, such as the weather or a restaurant, and the information will pop up on the screen but she won’t read it. Likewise, I can ask her to schedule appointments for me, which she can do, but when I ask her to read me my appointments for a certain date, she cannot do it. In those cases, I can still turn on voice-over or enlarge the font, but again, this process can be tedious, so I’m already looking forward to the next generation phone. For now, I love the fact that she’ll read me my text messages, which is especially helpful when I have dictated a text to her and want to find out if she has written the text correctly without having to look at my phone.

At the risk of sounding weird and saying that Siri has changed my life or something, I won’t go over any more details of our newfound friendship, but I will say that she has helped me as a mom in my daily life. I’m able to get a number of things done quickly, even while out on walks with my toddler. Prior to Siri, I couldn’t really use a cell phone outside because of the glare and contrast, except to answer calls or dial memorized numbers (I had a really old phone without voice-over before getting the 4S a couple weeks ago)

I’m definitely bringing Siri to Vancouver with me next week and can’t wait to introduce her to Jenelle. I have this feeling she’ll be asking Santa for her own new friend this year…

A Beautiful Hike

It might seem as though Joy and I are just going to ponder our upcoming treatment for the next couple weeks. But fear not, loyal readers – I’ve decided to post about something other than pre-treatment jitters. As part of my goal to focus on the present, I’ve been taking the time to do some of the things I really enjoy in life – baking, cooking, reading, yoga, and hiking. This last one might be surprising given A. I am a girly-girl, and B. I have RP. Despite these two facts, I still enjoy a good hike.

This weekend was full of sunny crisp fall weather – the kind that makes you want to put on a cozy scarf and head outdoors. My husband and I decided to take our 2 year-old daughter and little black shi tsu hiking on some nearby trails. We live up in the mountains where amazing hiking trails are literally in our backyard. This weekend, we decided to drive up Icicle Road and look for some new trails that we’ve never explored. Just the 5 minute drive up the Icicle made me feel relaxed yet energized by the array of colorful trees and clear blue sky.

We first stopped at an unmarked path, Torrey parked the car at the side of the road, and I quickly made note of the HUGE drop off just a few feet outside my passenger door. As we climbed the dirt path, weaving in and out of shrubbery and over-growth, my heart soared with the feeling that only good old-fashioned exercise and fresh mountain air can bring. I absolutely love hiking with Torrey (hubby) because he doesn’t hover over me and gives me the space I need to hike at the pace that is right for me. He typically leads the way, holding Cora’s hand, turning every once in a while to call out, “There’s a lot of branches hanging down up here, so watch your head”, or “Careful of this large log coming up”. He doesn’t hold my hand or watch skeptically to see if I’m going to miss a step. He fully trusts in my ability to hike using the aid of a walking stick he found for me in the woods. I refer to it as my “makeshift cane”.

Hiking up the trail is actually the easy part for me because there’s enough contrast for me to follow the trail. The way down is the most challenging part of the hike because my depth perception is not good, and it’s harder for me to find where I need to step next. This is the part of the hike that I use my walking stick as a cane – moving it quickly from side to side to “feel” my way down the trail. Torrey and Cora typically hike at a faster pace than me on the way down, but that doesn’t bother me. I actually kind of like it because once they get to the bottom, Torrey holds Cora up so that she can watch me hike down, encouraging me with lots of cuteness, “C’mon mama – good job, mama!”

After the first trail, we stopped to take a few roadside pics and then drove further up the road to a trail called “Fourth of July”, which seemed fitting for me because hiking gives me a nice sense of independence. This trail was a bit steeper than the first one, but the view at the top made the climb well worth it.

Trip to the Opthamologist

So I went to the Opthamologist a couple days ago. It was my first visit in about three years, and it was just with a local Opthamologist near my house as opposed to the specialist I have always gone to downtown Chicago. I received a letter from my specialist about a year or so ago, saying that he was retiring, and since he was the main reason I went to that clinic, I opted to just get a referral from my FP. For some reason, I thought that going to a new office would lessen my anxiety, since I have never liked going to the eye doctor, but I found myself a nervous wreck the morning of my appointment.Growing up, I always dreaded the day-long visit to our Opthamologist in Chicago. His name was Dr. Fishman, a world-reknowned RP researcher and specialist, and he was the epitome of a stereotypical nerdy professor, complete with bow-tie and medical terminology that went way over my head in conversation. Since his office at UIC was a teaching hospital, I could always count on a couple “trainees” standing over me in the dark as the brightest-possible light from his nifty head-lamp shone directly in my pried-wide-open eyes. “Hold it there….steady…” I remember him saying, breath in my face (in hearing about the visits growing up, my husband affectionately nick-named him “Fishbreath”, as he could have used a good breath mint).

“See these islands and pairing here with the red pigments….” he’d begin, and for about 20 minutes in that dark room I was not Joy– a living, breathing being with hopes, dreams, fears, and feelings– I was a lab rat demonstrating the atrophy and rapid decline of millions of cells in the retina. And since I knew, even on some odd level as a child, that this doctor was doing this to hopefully find a cure one day, I’d succumb for the most part, wincing here and there when it became too uncomfortable, but mostly I’d will myself to think about “happy” things– plans for later in the day (as a child, the trips always involved stopping at Ed Debevics for lunch afterwards, so that gave me something to look forward to!)

The remaining parts of those visits usually entailed a standard eye exam, such as reading charts, dilating eyes, glaucoma test, etc. And, of course, the dreaded visual fields test, which didn’t hurt at all, but always caused anxiety since I knew that its results would tell me how much periphereal vision I had lost since the previous visit. I remember trying to fake the technician out as a pre-teen. I was only supposed to “beep” the little buzzer when I saw the light, but I’d beep it randomly, hoping that it would “up” my scores and that they’d tell me I had more vision than I did. Looking back, I wonder why I would want them to report a higher number since it obviously wouldn’t change the fact that my narrowing fields still affected my daily life. Plus, if I couldn’t fake them out as well the following visit, it would make my decline look even worse (yeah– I was not the most logical thinker as a 12-year-old). After awhile, the technician was on to my games, however, and asked me to state where the light was each time I hit the buzzer. Busted.

It was not the visual fields test that worried me a few mornings ago, however. Going to a new office, I suddenly began to think about some of the “once-in-awhile” tests that I’d have to undergo as a child– the ERGs, the photos of my eyes, and the placement of hard contacts in my eyes (can’t remember why they did that, but it hurt!) These more invasive procedures did not occur at every visit, but they were definitely tests that went on during those preliminary visits when they were first trying to diagnose my sister and I when we were kids. And since this was a first visit at a new office, I wondered whether they’d need to do similar tests.

I really didn’t need to worry. In fact, by the end of this visit, I was the one practically begging for more tests. Even though this was an appt in a major metropolitan area with a retina specialist from a major medical group, it was probably the most unthorough, basic exam I’ve ever had. While I’m not sure that’s necessarily a good thing, it definitely put me at ease. I was mostly just confused about the technology while I was there. That, and the knowledge of the technician. He seemed to know nothing about RP, and when I asked whether I was going to have a visual fields test, he looked confused and went to ask another technician. I overheard him talking to two technicians in the hallway, asking whether he should put orders in for a visual fields test. I heard one of the technicians ask, “Retinitis Pigmentosa? Isn’t that night blindness?” and another technician chime in, “Just do a family history on her. I’ve only seen the doctor order one of those fields test one time.” And this technician wasn’t joking; there wasn’t even a technician who knew how to do the field test on staff that day, so I had to schedule it for a future date. And the funniest part was that the technician decided to do his own “makeshift” fields test on me when he returned, having me just stare at his nose and tell him when I saw his finger. I had trouble concentrating on the “test” because I kept analyzing his oddly-shaped nose in my head, trying to figure out why it was so much shinier than the rest of his face.

So when another technician came to take me to get photos of my eyes, I was expecting the same rudimentary-type scenario, especialy since I remembered having my eyes held open with Q-tips as a child while photographs were taken. To my relief, there was an amazing machine that took pictures easily without any need for pried-open eyes or Q-tips. She kept apologizing while taking the pictures, saying “I’m sorry this is so uncomfortable” because she spent a lot of time readjusting my head to get just the right angle. I tried to explain to her that this was pretty much a spa treatment compared to my UIC appointments.

When looking at the Opthamologist’s name before he entered the office, I was expecting a man with a thick accent to walk in the room, and i imagined that he would throw around medical jargon like Dr. Fishman did. But within 1 minute of meeting him, I could tell that he was completely different from my lifelong specialist. He had a full set of hair, wore snazzy clothes and cologne, and was about as personable as they come. I have to admit that I was very skeptical of this younger hot shot, especially after having to explain RP to his technician, but I soon realized that he’s a retina specialist for a reason. He spoke very highly of Dr. Fishman (who, by the way, is now volunteering at the Lighthouse for the Blind and cares very much for his patients despite my lab-rat comment). He was up-to-date on all the latest research, and he was definitely the most hopeful-sounding eye doctor I’ve ever spoken to. At one point, he looked right at me and said, “With all the break-throughs in stem cell therapy, there will very likely be a cure in your lifetime that will not only stop degeneration but will most likely reverse it as well.” Wow, I think my parents, sister and I would have flipped over if we had ever heard Dr. Fishman say that 20 years ago. I remember my dad trying to press Dr. Fishman for some hope, asking very specific questions about when and if a cure would be found, and Dr. Fishman was always careful with his wording and would say “It’s possible”, but usually with nervous hesitation. I think he tried hard not to be misleading, but he definitely didn’t leave us with a feeling of hope. I usually had to get that from my parents after eye appts. I remember my dad always saying, “Science is moving ahead every day, and I truly believe that there will be a cure in you girls’ lifetime”, and I remember I loved hearing him say those words, and growing up I believed them. But there defintiely was something different about hearing a doctor say it that gives me hope as an adult.

While it gives me hope for the future, my sister and I are getting a little tired of waiting for western medicine to come up with a cure. We’ve begun to look at other routes, specifically eastern medicine, and we are equally intrigued by what we have found. In fact, my sister’s next post will talk about our upcoming treatment that we will be undergoing in just 3 weeks! Stay tuned…..