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 “Take it Easy”
When Life Reverses: Part 2
It’s Sunday night, and I”m tired. But it’s a good tired. Ben and I played a lot with the kids today. And we put on rain boots and jackets and went splashing through puddles as we walked to Lou Malnati’s for pizza in the pouring rain.
And I was reminded today, as I was throughout this whole past week, how life reverses both ways. From perfect, sunny days that turn rainy all the way back to rainy days that turn out to be fun despite the puddles. Or perhaps, because of the puddles.
To give you the end of last Friday’s story, Lucy continued to cry all the way home. When she continued to sob at home, I got desparate for something to calm her and went up to my closet where I store future Christmas gifts (yes, I know it’s only August, and I’m ridiculous for starting already, but I pretty much am a single-parent the month of December since my husband is in ministry, so I like to just get it done early). Anyways, I went in the bin and grabbed the one thing she has been asking for the past year that I finally found on ebay– a retro Rainbow Brite doll (yup, that’s what I get for thinking I’m a sly, early shopper– the best gift is already ruined!)
And as I’m handing it to her, an even larger feeling of guilt sweeps over me as I realize that I’m instilling a materialistic comfort habit that will probably lead to her becoming an emotional shopaholic one day. (honestly when I told my husband about everything, he was completely understanding about the stroller accident, as something similar happened with him and Lucy and a bike a couple years ago, but he was really upset that I pulled the doll out!)
It did the temproary job of calming her down, however, and reassured me that the crying (which ceased immediately) was dragging on more out of fear than pain.
But as quickly as her tears vanished, mine appeared. An old friend had stopped by to see our new house, and as I was showing her the upstairs, I felt my voice break and I couldn’t compose myself. She, of course, told me that I was being too hard on myself and that she had done so many similar things when her boys were young.
And you know what? Throughout the entire past week, I received comments and e-mails from people, sharing their “guilt stories” of ways their kids were injured on their account. And while a couple of the stories honestly disturbed me, they really did help. A couple of them even made me laugh and smile to myself.
And as my week progressed, I realized that there are a ton of reversals that occur in the span of a week, or even a day for that matter. And sometimes life seems to reverse on its own when we give it a moment…..like when Lucy was pouting on Wednesday because there was a toy she wanted that I wouldn’t get her at the store. She ran into her room and shut the door, and I was too frustrated to try to reason with her, so I just sat on my bed and read with Elli, feeling like I had created this material=hungry little blonde monster. But to my surprise, a few minutes later, she came hopping up on my lap and thrust a handmade card in my face that said, “I’m sorry mom. I love you, daddy, and Elli more than things.” followed by a great, big bear hug.
And while I beamed and hugged her on Wednesday, I found myself feeling irritated on Thursday when both girls were whining and kept begging to watch tv all afternoon. I kept waiting for the day to reverse on its own– for the girls to come prancing up to me with handmade cards again that said “We will never whine again and we don’t even care about tv!” But the cards never came. And I kept thinking, “Why does it take so much to make them happy?”
And it was then that I realized that it was my frame of mind that needed a reversal– not my day. I got out some play doh and sat on the porch with Lucy while Elli took a little snooze in her stroller near us. We sat and chatted and played, and it seemed like just that hour of one-on-one attention turned the whole rest of the day around. She frolicked around the house the rest of the night, singing little songs.
And I kept thinking, “wow, it takes so little to make kids happy.”
So I guess this is just how life is– one reversal after another. And while it often takes so little to turn it around, it does take something.
Whether a pause. A prayer. A deep breath. An empathetic ear. A shift in consciousness. A brief moment of reflection is worth the likelihood that the day– or week or month or year– will turn around.
When Life Reverses: Part 1
Have you ever had one of those days where you wake up feeling like you could conquer the world and go to bed feeling like the world conquered you? Friday was one of those days for me.
It was one of those rare, Midwest gift days in August where you wake up and open the windows because the humidity has finally dissipated long enough to turn the A/C off for a day or so.. On days like these, there’s no wrong thing to wear. Whether long sleeves or tank top, you are neither too cold nor too hot because the sun shines brightly, complimented by a crisp, clean breeze.
It was also my first free day with no plans in awhile and felt like the perfect day to get really serious about potty-training my 2-year-old, with my oldest daughter back in school As soon as I put minnie mouse underwear on her, she immediately ran to the potty and knew just what to do (though she forgot a minor detail that required some clean up– pulling her pants down– but close enough!) She then asked to go to Starbucks to get vanilla milk and I thought that would be a good reward (yes, my 2-year-old is a Starbucks fanatic, thanks to her dad!).
Before we left, I saw a facebook message pop up on my phone that said a good friend of mine had tagged doublevision blog and wrote how I inspire her. And then I saw an e-mail come in from another friend who clicked on her link and read our blog. She sent me an encouraging e-mail, saying how brave she thinks I am and how she related specifically to a certain post.
So I left on the 2-block walk to Starbucks in this perfect weather feeling on top of the world. Everyone I passed seemed to smile or greet us with happy conversation. Even the birds were attempting to join in the casual conversations. And a bagpiper played beautiful music in front of Starbucks to help raise money for firefighters’ families (seriously, what is it about bagpipes that always gives me goosebumps?!)
I sat on a nearby bench and listened while sipping passion tea and watching my toddler happily slurp down vanilla milk in her stroller. I watched as car after car stopped to hand firefighters dollar bills, showing no sign of a recession anywhere nearby..
As I walked home, I felt like everything was right in the world. I felt good that I had handed a donation to the firefighters. I was elated that little Elli was still dry. I felt inspiring and brave and proud.
And what’s that they say about pride always proceeding the fall?
The day turned on me like over-ripened fruit. Elli peed on our new rug 2 minutes after getting off her empty potty chair. I opened July’s electric bill. Two small foreshadowings of the havoc to come.
I picked my first-grader up from school and asked if she wanted to walk to the shoe store for new school shoes. She was excited and jumped in the wagon, but Elli cried for the stroller so I caved and decided to do the “faux double stroller” with Lucy on top of the stroller (as shown in “Mama on the Move“) As we approached the shoe store, I remembered that we hadn’t brought socks to try on the shoes, and not wanting to spend extra money on socks at the shoe store, I decided to walk the 2 blocks back to grab them from home. Since a friend called to say she was stopping by in a half hour, I began walking quickly, wanting to make sure that we had enough time at the store. I usually try to go slowly when I’m pushing the girls “double-decker” style and hold on to Lucy while pushing, but I was in one of those hurried semi-frenzies as we crossed the street to our block. I was trying to get across the street quickly since there was a car waiting (and I had recently been told by my sister that I’m kind of a slowpoke crossing the street when cars are waiting!) In my haste, I misjudged the distance between the curb and front wheel, and felt the stroller jerk back in protest. And as if in slow motion, my precious Lucy went flying off the stroller headfirst onto the cement sidewalk.
Immediately, people surrounded us and a man ran for ice. Lucy stood up right away but began running hysterically in circles, shrieking in pain. I caught her in my arms and just cradled her, repeating “baby, I’m so sorry” over and over, vaguely aware of Elli staring at us from her stroller, wide-eyed and onlookers shuffling around awkwardly, trying to figure out how to help. The people from the waiting car had kindly pulled over and were looking at her pupils and trying to reassure me with the fact that Lucy has rolled, shoulder first and hit her cheek, not landing head-on. A bruise had already started to form, and Lucy continued to bawl and shriek.
I think the woman from the car could tell that I was mortified and ashamed because she began telling me how her niece did the same thing a few days before. I nodded politely but I couldn’t let myself be comforted. What kind of mom was I?
I felt this ball of guilt and regret in the pit of my stomach. And I felt not one bit inspirational. And not brave in the least. And as I pushed the stroller home, Lucy walking close and whimpering at my side, I felt like nothing in the world was right.
Drama Triangle
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
The Last Straw
Unlike my sister, I do not have a cane and have not received any mobility training. Similar to most people, I had considered canes to be something you start using once you are completely blind. It had never been introduced to me as a tool “to help you not run into anything” as the mom simply explained to her child in Joy’s last post.
As Joy also mentioned in her post, I contacted my state’s department of rehabilitation regarding cane training on the exact same day as she did. Although it would be fun to pretend that this “coincidence” has something to do with twin telepathy, I think it is actually the result of Joy meeting with the young lady with RP who began using her cane as a junior in high school. For some reason hearing that was the final straw for me. It seems strange to me that this was the final straw that motivated me to look into cane training considering I have had so many experiences or rather literal “run-ins” that truly should have been the last straw. (which for our International readers is a phrase often used meaning The final additional small burden that makes the entirety of one’s difficulties unbearable.) Why didn’t I get a cane after I punctured a hole in my shin during a cross country meet because I didn’t see the bleacher? Why didn’t I get a cane when I was feeling anxious about navigating my way around campus my freshman year in college? I could spend days coming up with similar questions, but instead I will choose to focus on the present fact that I am getting a cane.
I am sure there are readers wondering why my sister and I are making such a big deal about something as simple as using a cane. Why is this so challenging and why are we analyzing it so much? I know there are plenty of visually-impaired people that seamlessly use their canes and do not feel it defines them in any way. I have read some inspiring blogs written by people who explain that they don’t even consider vision loss to be an issue or struggle in their lives. While I have every intention of getting to that place, it is just not where I am right now. It means a lot to me when people accept me exactly where I am, even if it is not where they think I should be or where they are. I hope that doublevisionblog is a place where people can feel okay to be exactly where they are in their journey with vision loss or anything they might be struggling with in life. I will be adding updates regarding cane use to the blog as I receive training this fall.
Cane-o-Phobia
Several weeks ago I met with this remarkably confident, intelligent teenager who has RP. Her and her mom read our blog and live in the same area as I do, so her mom thought it would be helpful for her to talk with someone who has “been there”.
While I had hoped to provide all kinds of helpful mentoring during our meeting, I walked away feeling like I had been given some wisdom in regard to a fear I have: cane use.
Even though I received mobility instruction (aka: cane training) during grad school 10 years ago, I have felt too self-concious to use my cane in public despite the fact that it could really help prevent my many run-ins with objects and people.
This young lady shared with me about how she began using a cane mid-semester in her junior year of high school this past year after she ran into a garbage can and another student. Though my vision was less than hers when I was in high school, I tried to imagine myself using a cane in the hallways of Naperville North and felt my face flush red just thinking about it.
She went on to say that it was difficult at first, answering questions from students wondering why she was using a cane when it looked like she could see or why she started using it all of a sudden. But she persevered and continued to navigate the hallways of her high school confidently. I think about all the people she has been able to educate about low vision just by using her cane in school.
And I think about all my missed opportunities to educate people about low vision and RP– people I’ve allowed to believe I am inebriated or rude or ditzy instead of simply showing them that I can’t see well.
So the day after I met with this courageous young woman, I decided to at least just start carrying my collapsible cane in my bag so that I could pull it out when needed. I’ve used it now 4 times in public in the past few weeks– more times than I’ve used it in the past 10 years.
I used it at the DMV when going to renew my state id, which ended up paying off because apparently they waive the $20 fee if you are visually impaired. One odd thing I noticed was that everyone I came in contact with, whether DMV worker or patron, called me “honey”, “hon”, or “sweetie”. Since I don’t live in Texas, I got a little paranoid that it was because of the cane. But maybe it was just some weird DMV lingo or something. Or the DMV’s recent attempt to make their facilities more pleasant. Anyways…
The second place I used it was in the library with my girls (a place where I’ve had the most “run ins” because it’s going from light to dark in a crowded, smaller space). My paranoia at the library is that people will see me reading a book aloud to my kids after setting down my cane and think that I’m faking blindness, but a good friend pointed out that there are far better ways to get attention than blindness, so it’s not a very likely assumption. Plus, it provides a great opportunity to educate people if they ask about it, which actually brings me to the third place I used it– the train station.
My girls and I rode the train to Aurora– a nice, short ride– a few weeks ago and absolutely loved it. As we were waiting for the train, my 2-year-old was having the time of her life playing with my cane– swinging it around like a baton and whacking her teddy bear in the face with it. A man asked me whether I could see anything because he was nervous that she was going to hit me with it. I explained to him that I could, much to his relief. And considering that only 10 percent of legally blind people are actually totally blind, I do think it’s important to educate the public about the other 90 percent of people who they may see using canes. (http://en.wikipedia.org/wiki/Blindness)
The final cane use was the most difficult for me because it was while we were out with friends. The DMV and library were relatively easy because everyone around me were strangers. But there’s something about pulling out my cane in front of family and friends that is the most difficult for me even though I know they would be supportive (and probably relieved they don’t have to drag me around in crowded places!). Typically when I’m with people I know, I link arms with them when it gets dark or crowded so that I can find my way around, but when we were walking downtown a couple weeks ago, it was literally 102 degrees of pure steam outside, and I really didn’t want to make one of our friends even hotter by linking sticky arms. Plus, these particular friends are two of the most non-judgmental, laid-back people I know, so they made it easy to be matter-of-fact when pulling out my cane. In fact, I loved how my friend simply explained to her son, who was curious about the cane, that it was helping me not run into anything– no long, drawn-out explanation or stumbling over words– just a simple, true statement.
I’ve been trying to figure out why simple, true statements don’t come to my mind when it’s time to pull out my cane. Instead of thinking “this will help me not run into anything”, I start writing a novel in my head about all the many things using a cane says about me and all of the crazy assumptions people will make. If I use it walking Lucy to school so that I’m not constantly running into a crowd of kids and parents, for example, what will the other parents think of me, and will they still trust me to supervise their kids for playdates at my house? I can admit that about half of the thoughts that run through my mind are ridiculous, but there are also some real fears here.
And after joining a Facebook conversation about cane use (Room With a View ladies’ rock!), I know I am not the only one. One of the women in the group actually coined the term “cane-o-phobia”, and it’s interesting to read comments all over the spectrum– from people who are terrified of the idea to people who are comfortable with it but whose families are not, and people who are so adamant about cane use that I’m slightly afraid they’d use it as a weapon (kidding, of course, but they do scare me a little). One simple comment that helped put things in perspective for me said, “None of us want to be labeled as disabled, yet we want to be accommodated. Having some sort of visible signal empowers others to be helpful. Not everyone’s great at it [being helpful], but I think the benefits far outweigh the stares and rude people.”
So here’s where I’m at with it at this very moment: I want to start using it regularly but don’t even know if I’m really holding it correctly. I put a call into the department of rehabiiliation, have faxed them my medical documents, and am now awaiting a mobility instructor. Ironically, my sister and I, living 2000 miles apart and having very little discussion about this, actually each indiividually called our state’s rehab offices on the same day. Jenelle has her own thoughts on the subject, so I will let her share from her perspective, though we have joked about having a “coming out” week (similar to the undocumented immigrants who have come out recently!) in which we both start using our canes regularly. Until then, I will be okay with pulling it out randomly and somewhat awkwardly, knowing that it’s a start.
Happy Anniversary
Yesterday was Ben and Joy’s lucky 13th wedding anniversary, so I would be remiss if I failed to congratulate them on this accomplishment!
And today, July 18th, I want to say Happy Anniversary to doublevisionblog! It may be faux pas to wish ourselves a happy anniversary, but we’re doing it anyways. It’s all part of redefining normal as our so-called “blog tagline” goes. When we started this blog one year ago, we weren’t really sure what would become of it. We had a general idea of what we wanted to write about, but the blog has evolved from there. We have been encouraged by our readers to continue to share through our writing. I want to thank my sister, Joy, for continuing to post over the last six months. Frankly, I just haven’t been in the mood to share. But I am sitll glad that Joy has kept the blog going because her writing continues to inspire me and others.
The response we’ve received from our friends and family has been overwhelming to say the least. We are so grateful for your uplifting comments and interest in our posts.
On our anniversary, I wanted to take the time to collect a few of the comments from complete strangers that have been especially touching to us this past year. If it seems like we’re patting ourselves on the back here, that is exactly what we’re doing. We’re proud of what we’ve created and the small yet meaningful impact it has had on others.
“So well written….. My wife’s (Anne) RP was diagnosed the first year of our marriage. We have now been married for 22 years. She has about 13 degrees of visual field and had to stop driving about 13 years ago now. Reading your blog is real helpfiul to me. It is so much of what we experience and I felt such a sense of “yup we experience that too” ….just went walking tonight and noticed the sun had begun to set earlier…keep up your blog and thanks again.” – Steve 8/18/2011
“I just came across your blog…my wife has RP, so I am reading up on how others live with the disease. I saw that you live in Leavenworth…my wife is from Wenatchee and we currently live in Bellingham, WA. You and your sister are doing wonders through your writing by just sharing. Thank you.”
– Ryan 8/31/2011
“Dear Joy and Jenelle, I am SO glad I found your blog! I have Usher Syndrome, Type 2…which, as you know, is both hearing impairment and RP. My sister, three years older than me, also has this. Our stories, though, are very different from each other – in terms of when the RP was diagnosed, how slowly or quickly it progressed (over the past 22 years for me, but only three or so years for my sister), and how we cope with it. My sister created a Facebook page called Usher Me In – she is sharing her experiences. I have not decided to do anything yet, but after reading your blog, I am inspired to do a blog of my own – or perhaps ask my sister to do it with me, just as the two of you are doing! I cannot even tell you how many of your stories resonated with me! And I laughed at many of them, even though they caused such embarrassment and tears for you…and for me in my own life…but I laugh because I thought “yes, exactly!” and recalled my own experiences that were so similar – I sometimes thought you were writing MY story, even your word choices were perfectly applied to me at times! So I laugh because it’s more cathartic than crying, most of the time anyways. And I feel your pain, your shame, and your strength to write about it and hopefully laugh about it, at least after the fact. And also, you’ve given me the “lingo” and the joy of calling myself another VIP….we may be visually-impaired people, but I think we are also very important people, very inspiring people, very independent people…and I’m sure I’ll come up with more! Thank you and keep writing please!”
– Roberta 9/4/2011
“Firstly, “hello from Australia”, I am a new reader. Secondly, thank you. Thank you for taking this courageous step and sharing your letter. I’m sure that anyone with RP or similar conditions will find at least one thing in this letter that truly helps them by way of knowing that someone else gets “it”. The value in that is monumental and by you being generous with your emotional journey, you are giving a great gift. I took a step in sharing the details of my eye conditions on my blog some months ago and it felt great. While I had always said that I was legally blind, it felt freeing to share the specifics. I have more to share in time when I am comfortable with putting it out there. I am thrilled to bits to have found your blog.”
– Lucent 9/16/2011
“I juat got done reading this entry and I can tell you from probably line 2 of the letter you included I was crying. I feel all those things but rarely say them and surely do not write them down. Reading this has helped me understand that I need to face all those things I hate about RP and move on so I can be a better and productive mom, wife and just person in general. Thank you so much for sharing this!” – Becky 9/16/2011
“This has truly been the answer to a prayer…I continue to pray to find someone who experiences RP in the form that I have. I am “highly vision impaired” but I do teach every day. Unfortunately, many people want to use your vision loss against you…so tired of feeling stupid all of the time…I have goosebumps reading what you wrote. It is so on target with how I feel…” – Linda 9/22/2011
“I am late to this blog…..I am late to most things due to RP…..this is the greatest representation of what daily life is all about with RP that I have ever read. I will be reading this blog for as long as I still can see the screen. You two are the greatest. Thank you for providing information to the masses that us shy people just cannot bring ourselves to do. Greatness. Thank You.” – Scott, 6/28/2012
Top Ten Reasons You Too Should Become A Walkin’ Mama
Living in the suburbs, where honestly – people pretty much drive down the driveway to get their mail, I have had some of the strangest and funniest reactions when people have found out I’ve walked places. When Ben and I were first married, we lived 3 blocks from North Central College where I worked, and co-workers would always ask incredulously “You WALKED to work?” as if I’d just run a marathon despite the fact that they knew where I lived.
And when I lived 2 blocks away from the middle school I taught at, I constantly had teacher-friends insisting on driving me to or from school because they felt bad that I had to walk even though I never complained about walking (I liked it!). I know they were just being thoughtful and kind, but it sometimes seemed like they were actually uncomfortable thinking of someone walking a few short blocks.
One of the few persons I know who is able to drive but prefers to walk a lot is my sister-in-law, who grew up in Europe where walking was a part of daily life. She’s the only person who used to brave the 1.5 mile walk to the Plainfield library with our kids and me back when we were at our old house.
I’m hoping that with the rise in emerging urban design movements like “new urbanism” and sites such as walkscore.com, community planners will build more suburban neighborhoods within walking distance to more places (some friends were recently laughing sadly when they saw that their house has a “walkscore” of 3!)
But even if there’s only one place (i.e. a park, friend’s house, drugstore, etc.) to walk to where you currently live, here are ten reasons to walk instead of drive there:
1. Better for the environment (What’s that you say? You drive a Prius? Believe it or not, your legs leave an even tinier footprint on this earth than even your Prius! Preaching to my husband here…)
2. Save money (gas, wear and tear….. it all adds up in this economy!)
3. Good Exercise (and, unlike the treadmill in your basement, the scenery actually changes!)
4. Fresh Air for Your Kids (Being a busy mom, it’s sometimes tough to fit in outside playtime, so if you’re walking somewhere AND they’re getting fresh air, win-win!)
5. More face-to-face interaction for the kids (mine face each other in the wagon and play games– yeah I know this can backfire occasionally, but that just teaches them conflict management!)
6. Nature vs. Screen-time inside a car (Okay, so I know not all people who cart their kids around all day in the car have built-in dvd players, but I tend to resort to handing my kids my iPhone way less when we’re outside than when we’re in the car.)
7. Time with Friends (Most families these days aren’t able to all fit in a car together on the way to outings, but if you make plans to walk somewhere w/ a friend– whether to the park, farmer’s market, or another neighbor’s house, you have time to chat in person while you walk!)
8. Opportunities to meet new people (you can’t tell me that a wagon decked out like a princess float is not a conversation-starter!)
9. Give your town/neighborhood a friendly look (there’s nothing that says “hey, this is a safe and fun place to be” more than people out walking, especially with kids.)
10. No chance of getting a speeding ticket (I love to brag that I’ve never gotten pulled over!)
BONUS REASON: Less Stress (Okay, this one may be the most debatable because it’s situational and could be stressful if you’re late walking somewhere important and it takes 3 times as long, HOWEVER, everyone I know who commutes to work comments on how stressful it can be…..just think of road rage and not having to deal with other annoying drivers!)
NOTE: Yes, I live in the United States and realize that very few people live in areas where they can walk to all the places they need to go in the course of a day. But I have also lived in the ‘burbs long enough to see a lot of missed walking opportunities. How many people live in the exact same neighborhood as friends but end up driving to play dates at their neighbors’ houses I know, I know — they may have somewhere to be right after the play date. If you’re one of those people, maybe try adjusting your schedule to leave a little earlier or later once in awhile. Your body, pocketbook, earth, kids, mind, etc. will thank you!
Mama On the Move
Here’s a glimpse of how the girls and I wheel around town in all seasons:
Return to Fishman: Part 2
If you’re wondering what these two ultrasound-looking photos are, they are actually photos of my retinas taken at my most recent appointment. Like I said in Part 1, I learned a lot at this appointment, and the photos were just part of this wealth of information.
While I knew that I had a form of RP known as Lebers, I hadn’t realized that a 1995 blood test revealed the specific RP gene that Jenelle and I have; it is called the CRB1 Gene. This gene, unfortunately, is not the specific gene in clinical trials for gene therapy right now (the treatment that Dr. Fishman feels is the most promising within the near future).
Another gene, the RPE65 gene, is currently in human trials, and from what I gathered from Dr. Fishman, this is mostly due to the fact that it is one of the more common RP genes and that patients with RPE65 tend to have their central nuclear still intact, a necessary requirement for gene therapy
This is a new term I learned today, and they actually took pictures of my retinas to see if my central nuclears were still viable, meaning that the cells are alive and could therefore be receptive to gene therapy. This is, of course, all hypothetical considering the CRB1 gene is not currently in clinical trials. I naively asked whether it would be the next gene in trials, not realizing that there are many other RP genes that have also been identified that would be in the running. He said that research studies are more likely to take place with the genes that affect the most amount of people first. When asked how common the CRB1 gene is, he said it’s right in the middle. So there may be some waiting. He said that the results for the RPE65 gene are promising so far, however, and that once the initial FDA-approval process is over with, the following trials will be able to move at a much faster pace than the first one. Of course, even if the CRB1 gene begins human trials in the near future, Dr. Fishman pointed out that there are still many risks to weigh in whether Jenelle and I would want to volunteer to be among some of the first groups for treatment, especially considering they have to detach your retina during surgery, which could potentially decrease vision even further.
Dr. Fishman himself is involved more directly in some pharmacological studies that do similar work as gene therapy but are taken as medication rather than surgery. Some patients have had improved fields from this drug study, though the patient he was specifically testing did not have improved fields (but improved his acuity by 17 letters, which is substantial).
These are pictures of my retinas. The dark area in the periphery is scarring, or as Dr. Fishman put it, “charcoal ashes from the fire that is the disease”. The small white area in the center shows my central nuclear, which is still intact, though it is a very thin layer. The center of everyone’s retina is thin, but is extremely thin in patients with RP.
As far as other results from this visit, one major disappointment from Dr. Fishman moving offices is that a lot of records did not make it over yet, including my previous visual fields tests. I had been anxious to compare the results of today’s test to previous tests, but such is life Hopefully they will eventually find all of their files.
I did feel like my fields were pretty narrow during the test, but I think I am always surprised by how much I really can’t see when I take the fields test. Marty, my favorite technician who was doing my test, was particularly astonished that in my left eye– the one that can’t even see the giant E on the chart at 20/400, could still see a tiny pen-light in the center of the field test “All-be-darn” was his exact quote. Again, since they don’t have my previous records at the moment, I have no idea whether this is something I could see during my previous tests 3 years ago. While I did a fields test at my local eye doctor in Naperville this past fall, the test was not nearly as thorough, and the technician got really confused while doing the test because she had never done a test on someone with such low vision before, so I can’t use that one to compare to either.
Marty also said that he finds it fascinating how I am able to even walk from the waiting room to the exam room without any problem. He remarked on how the human brain compensates for the missing pieces of vision and fills vision in to make things look like a whole picture when there should really be no way to see the whole picture at all. He said with the vision I have, even walking around should be nearly impossible, but because my brain has filled in these pieces, I’m able to (even if it’s not always very well!) While I have had many of these same thoughts before, I was never sure if they had any actual scientific basis to them before hearing a professional say them.
As I said in Part 1, Dr. Fishman’s care for his patients was particularly evident to me during this visit I’m not sure whether it’s the new office environment or whether maybe I’m just better at asking specific questions now as an adult, but I feel like he took such care explaining extremely complicated scientific information in simple terms that I could understand.
I definitely plan on recording my next visit so that I can actually listen to it once I get home since there is way too much information to even begin to remember, much less reiterate to my family and friends later. Until then, I hope my modest attempt to convey pieces of info from the visit is helpful. Thanks for reading!