2012 – Page 2 – DoubleVision Blog

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:

Yup, this is our version of a double stroller– it keeps us moving nice and slow, and people have a lot of grace for us since it’s clearly a challenging task! Looking into used sit-and-stand strollers on craigslist…..

To keep out the rain and hot sun, this roof does the job!

For cold and windy weather, there’s nothing like a fleece blanket! (note: last year I carted the kids to a friends house on a sled in the snow….looking into a sleigh or double-intertube this year!

This netting (formerly Lucy’s fancy princess canopy that collected too much dust over her bed!) is perfect for keeping out all kinds of bugs during mosquito season!

For those perfect, convertible-worthy days where the sun isn’t too hot and the wind is a breezy bliss! (2 or 3 days out of the year in Chicago!)

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!

Return to Fishman: Part 1

So I visited my childhood opthamologist and world-reknown RP researcher, Dr. Gerald Fishman last week. I have to say it was one of the most eye-opening visits I’ve ever had with him (and this is both pun and literal– you can always coulnt on your eyelids being pried wide open during an exam).

Back in the fall when I wrote, “Trip to Opthamologist” I was pretty darn honest about my memories of my visits with Dr. Fishman growing up, and I have to say that as I sat in his office, I kept cringing imagining if he were to ever see what I wrote “Fishbreath” isn’t the most flattering descriptor for a respected doctor. (not that a famous researcher would ever be browsing through doublevisionblog!)

Dr. Fishman is now at the Lighthouse for the Blind in Chicago (rumor has it that it was a political upset that led to the switch from UIC Eye and Ear Infirmirary to the Lighthouse). I found it interesting that it wasn’t just the doctor himself who moved practices– his sidekick technician, Marty, who has been with him since 1996, was there to razz me with his usual goofy comments, so it felt like a little reunion of sorts, as I had not been to an appointment for a few years.

He also still had a Fellow working under him, Dr. Collingsby, and I kind of wonder if some of these younger doctors have been the ones teaching their mentor how to improve his patient-communication skills just as he has been teaching them about retinas, as I notice Dr. Fishman has become more personable over the years. Or maybe it’s me getting older. Or the new building he is in.

Dr. Collingsly examined me first, and though there were the usual bright lights shone stingingly in my retinas, he had clearly brushed his teeth and carried the aroma of soap, which beats many other potential smells. He did still emulate Dr. Fishman’s audible, scientific terminology during the exam….. “asteroids in the center vitreous…..look up please……scarring in the outer……all the way to your right please….white lipids…..” which always cracks me up because I have no idea what any of it means, and most of it sounds like they’re looking through a telescope at the solar system, not my retina.

While I think part of the audible descriptors are for the sake of educating the doctors-in-training, the fact that Fishman mutters these terms to himself even when there are no other doctors present tells me that he is simply engrossed in what he does (or he says thing aloud to help remember them in order to write them on my chart maybe?)

True side story today: As Dr. Fishman has my left eye pried completely open with a bright light shining directly on my retina, he says something about looking at a beautiful universe of greens and blues and pigment mumbo jumbo and then mumbles “nothing to do with the RP but I can’t stop looking at these” and then chastises himself, saying “come on Fishman, back to work!” And I don’t think this was crazy-talk or senility or anything. I think he is so enamored with the human retina and all its details that he really, really loves what he does.

At one point I asked him the round-about question I always end up asking. And even though I know he can’t give me a clear answer, I can never stop myself from asking it in some form. So today I worded it, “So I think I remember you telling me that most patients you’ve seen who maintain usable central vision like I do are able to hang onto that bit of central vision for quite awhile”. And he said that’s true of people with 20/40 or better, and since I’m at 20/50, it’s really hard to tell. But what really got me today was that he kind of touched my upper arm and said genuinely, “Because each RP case is so different and there’s not a typical path for anyone, I cannot predict the outcome that you deserve to know.” He said I deserved to know what will happen with my vision. It isn’t possible, of course, but he said I deserved to know. And since I didn’t tape record him, I don’t even remember the exact quote– I think he said it better than what I quoted, but for the first time I felt his sadness in not being able to really help his patients– or even give them an accurate prognosis. How frustrating as a doctor. Not to mention as a researcher who has devoted their career to finding a cure.

So I’m looking at this doctor– this researcher with the bow tie who speaks in scientific terms with fiery breath way too close to my face. I stare at this small man who is frail and balding– the same one I dreaded seeing annually as a child– and he no longer appears as the villain. As a kid, your mind interprets events in crazy ways, and these difficult visits filled with bad news, poking and prodding definitely painted the doctor as the antagonist.

And I guess at this visit I grew up and saw how this “antagonist” has devoted his life to RP research well beyond the age most doctors retire (Marty-the-sidekick said he doesn’t know the definition of retirement! Marty also would not tell me Dr. Fishman’s age, and I thought it would be weird to ask the doctor himself!).

Before leaving, Dr. Fishman asked, “have I answered all your questions?” and after saying yes and walking out of the office, I noticed he had been answering my questions for over an hour (on top of the 2 previous hours of tests)– an insane amount of time to spend with a patient these days.

And that’s the main reason I will make the trip to the city to see him each year instead of simply going to my local eye doctor. I think any retina specialist can check for cataracts or fluid leaking in my retinas (two risks with RP), but I go to this particular specialist for the education. Yes, I could look online, but when you’re looking online, you really have to piece together a lot of information that may or may not be accurate.

For an update on what the appointment actually found vision-wise, please read part 2!

What Feeds Your Soul?

joy_attheorchard — me speaking at The Orchard last weekend– an opportunity I never would have had if I hadn’t started writing regularly

It seems like I’ve been talking to a lot of people who feel down lately. Some of the down feelings are

circumstantial, but for most of the people, it’s more of a disillusionment with the way their everyday lives are going.

And because I’ve definitely been there, it is causing me to analyze some of my “joy” data– and I’m not talking about my name here….. what brings joy into my life on an everyday basis? (and this is beyond all those easy answers like God and children….)

For me, it’s words. I remember loving the feeling of stringing them together as a kid…. that pure delight even in kindergarten when I wrote, “The Rose Girl” and had some vague sense that I had created something.

And maybe my first love of words had something to do with the fact that pictures were sometimes hard to see, and how the words describing them made them visible to me. My toddler has a lot of first words books where I point to the picture and she tells me what it is, and honestly thank goodness for the large, bolded words below each picture because I have trouble deciphering what most of them are even though she recognizes most of them right away.

I think it’s human tendency to withdraw from some of the things we really enjoy doing in life when we’re down. I know I withdraw from writing when I’m feeling depressed (hence the lack of entries over the winter!)

Yet as I write daily– whether I intend to ever share it with anyone or not– it makes me wish that I had forced myself to do it over the winter because I feel like the days build on each other and increases my daily joy exponentially.

it sometimes takes effort, contemplation and soul-searching to sit down and do the thing that feeds us– or even figure out what it is. But when it is found– whether it be yoga, art, long walks– whatever– give it a prominent place in your life. Challenge yourself in whatever it is, and ignore messages clouding your brain that tell you it’s a waste of time.

For years I didn’t really write much because I didn’t think it would ever lead to a “career” or financial gain. And honestly it may never end up putting a dime in my pocket, but I’d pay a whole lot of money to feel as alive as I do when I create with words. I am so grateful for my amazing twin sister who had the idea to start this blog. It has been my free therapy, my place to be honest, my place to grow and the place where my soul figures out it is satisfied.

I know I’m hovering on the cheesy side again, but I’m writing this for the people in my life who are down right now. Because they have soul food in their lives that they aren’t eating.

Usually these soul food type of activities don’t come skipping along at just the most opportune times. They usually arrive in the middle of the inconvenient times. Like right now when I’m supposed to be scoring essays, for example. I score state tests for Pearson from home to help pay bills (and with how slow I am at scoring, I barely make minimum wage, but my philosophy is that something is better than nothing!)

Many of my writing ideas enter my mind while I am scoring exams, which is completely frustrating because I have a quota to meet, and when I stop to write, I really lose time and money. But when I don’t grab those moments of inspiration, they tend to disappear. So lately, when I feel the inspiration to write, I stop whatever I am doing and just roll with it because I know it’s something that will keep building….. the more I am in the habit of dropping everything to do it, the easier it will be and the more joy I’ll get out of it, and the fuller my soul will feel.

And anyone I know who actually continuously practices the things that feed their soul end up heading in a life direction that they feel alive in.

My husband, for example, is a singer/songwriter, and for years he struggled to find his “niche” of listeners. I worked as his booking agent, we hired a publicist and were determined for him to someday make a living as a full-time singer/songwriter. After several years of late-night shows that didn’t really pay, I got really frustrated. Why wasn’t this career happening? But my husband kept plugging away writing and performing, and at times I couldn’t understand why.

Then in 2010 he was asked to do a Christmas show in Aurora, and we argued about whether he should do it because we would be sacrificing a lot of fun plans and even a weekend trip with family, for him to do this show that involved late-night rehearsals, performances spanning over two weekends and little pay.

At some point I remember my husband making the point that ended the argument: “Joy, with my busy job and our family commitments, this is my one opportunity each year to connect with other local musicians and to put music first”

And it was at that performance that he met his current boss, who hired him one month later to do his dream job. He now writes and plays music full time, like we had always hoped he would be able to do, and simply from continuing to do the thing that makes him feel alive even when it wasn’t convenient and didn’t pay.

I’m not suggesting that we will all end up with careers doing these soul food activities, but if we open up spaces in our days to do them and place them above all those nagging things like money and organizing the closets, we just might start to breathe easy again.

Placing First Things First: Part 2– the Challenge

For as lovely as words can look on a screen, life can really blur them all together when you’re trying to live them out.

I hosted a Mother’s Day brunch at my house today for some of my extended family, which was filled with sunshine, great food and beautiful people. It was also filled with crap. Literally.

I won’t get graphic or anything, but I do want to share a little piece of this scenario to give you an idea of how very challenging it can be to place relationships and people first. I have a family member who is developmentally disabled and sometimes has bathroom issues. Well, let’s just say that today he had major bathroom issues. In both our bathrooms. And on the new bathroom rug. And even on the freshly-painted walls, discovered by my poor husband hours later.

When I first walked from the outside fresh air into our house and caught a whiff of this accident, my gag reflex went off, and I stepped right back out. Another family member graciously helped him clean everything up, though further setbacks and clean-ups seemed to continue for quite awhile. I found myself feeling disgusted and frustrated that this was all happening on Mother’s Day. And I found that I acted less than gracious and spoke in irritated tones.

As my family members were leaving, I told a couple of them about my blogpost on placing people first and how I couldn’t even post it because I felt like such a hypocrite acting like I care way more about people than my house but then feeling like I wanted everyone to just go away when it got messy. They smiled with understanding and joked that they wouldn’t tell anyone. I thanked my helpful uncle for all his clean-up work dealing with the other family member’s mess, to which he replied, “all small stuff”. And really, in the grand scheme of things, it is, and I know that as a whole.

And I tried to remind myself of that as my husband and I continued to do some aftermath clean-up later.

But the house still smelled like you-know-what, and I just wanted the nice scent of my Mother’s Day bouquet to fill the house as it had before the brunch.

Since we had to be at another gathering, we decided to just open up all the windows, and even left our front doors leading to the screened-in porch open in hopes that it would air out while we were gone.

And it did.

When we walked through the door this evening, the faint smell of cleaning supplies drifted,but mostly just the aroma of evening spring air filled the house. And it reminded me that sometimes all it takes is a few open windows. And there are windows I forget to open all the time. Not just in my house, but in my life.

I know I’m hovering on cheesy here, but it’s true. I remember to open the windows of all my thoughts, ideals, and insights to the world as I write this blog, but sometimes I forget to open the windows of acceptance to my own family members. Yes, I don’t have to love some of the things they do, and there are definitely boundaries I need to set with certain people who choose not to work on their issues, but there’s usually room for more kindness and acceptance even when setting boundaries.

For example, this particular family members was mentally capable of taking some medication that could have prevented these accidents today but chose not to, and he also chose to eat food that he knows upset his stomach, and because of that, he will not be asked to the next gathering at my house. But at the same time, I didn’t even take the time to say goodbye to him today. I could have still hugged him good-bye and shown love despite my frustration.

I think in order to place people first in our lives, we need to challenge ourselves in the ways that we think about others and act toward them, especially with the difficult people.

There are always more windows that can be opened. And always more fresh air we can let in.