My husband and I like to tease a friend of ours for his harsh response to a fast-food worker who messed up his order 3 times.  She had all sorts of excuses for why she kept messing up the order, and he was sick of listening to it, so he looked straight at her and said “Do Better”.  We thought it was a bit of an over-reaction and didn’t offer her much grace.  I know we all make mistakes, especially at work.  But after the week I’ve had, I feel like I want to shout “DO BETTER” to the world.

I hesitate to even write this post as I don’t want it to come across as a wild rant or pity party.  I doubt most people enjoy reading a rant any more than they like listening to one.  So I will try my best to explain what the last 3 days have been like for me without overstating my frustration.  I also want to apologize in advance for the amount of details I’ve included in the below timeline of events.  It’s boring to say the least, but I think the details are necessary to understand my story.

On Monday, I had an appointment at Seattle Harborview Medical Center’s Eye Institute.  My husband took the day off work in order to drive me to and from my appointment and keep me company through the long list of tests I needed. (note: We live 2 and half hours away from the eye clinic.)  It had been quite some time since I had all the tests necessary to make sure I don’t have glaucoma or cataracts (people with RP are more likely to develop those conditions), visual acuity exam, peripheral fields test, and pictures of my retina.  I needed this comprehensive list of tests in order to apply for cane training services.  When I arrived at my appointment, I handed the medical technician a 5 page form from the WA Department of Services for the Blind (DSB).  She looked over the paperwork and told me the doctor would be able to complete the forms after all the tests were finished.  I then spent the next 5 hours in Harborview’s eye clinic, most of which was spent sitting in the waiting room with elderly people. 

During my 5 hour stay, they did a basic eye exam (charts, letters, lights – something similar to what most people receive at their optometrist), received drops for the pressure tests (glaucoma, cataracts), and posed for a glamorous retina photo shoot.  I was examined by several resident doctors and observed by a young medical student as well.  Four and half hours into my appointment, I finally got the chance to meet with Dr. Chou, the ophthalmologist and retina specialist.  She explained that she was sorry for the misunderstanding, but I had been scheduled at the wrong clinic.  I should have been at the clinic across the street where they do all the testing for retinal degenerative diseases (field tests, laser scans, etc).  She was not sure why the person scheduling my appointment had not sent me there in the first place or why no one had caught this mistake earlier in the day, but assured me she would speak to her clinic manager about the issue.  She was unable to complete my paperwork for DSB because the only tests they had completed showed that my central vision was still in tact and well above what would qualify for any type of services.  I was supposed to have my forms complete for my DSB appointment the following morning, so I had to change my DSB appointment to Wednesday afternoon and go back to Harborview on Tuesday to have the correct tests.

Luckily I was able to stay at a friend’s house in the Seattle area, but my husband could not drive me to the new appointment because he had to work.  So I paid $47.50 for a taxi to take me to Harborview on Tuesday morning.  I requested a reimbursement from Harborview considering their scheduling mistake, but was told “that’s not something we do”.  Once I arrived at the correct clinic, the tests and paperwork were completed in under an hour with no time in the waiting room.  Now fast forward to my DSB appointment on Wednesday afternoon.  Just getting to the DSB office was challenging in itself because my morning sickness suddenly returned while I was in the backseat of a swerving taxi that smelled strongly of curry mixed with incense.  I somehow managed not to lose it in the cab, but I was green with nausea by the time I stumbled into the DSB office.  A kind case manager shared her crackers with me and brought me water.  I then met with an equally kind case manager who asked me all sorts of questions about the type of work I had done in the past and what type of work I would like to do in the future.  I was confused by her questions as I thought I was at this appointment to talk about my vision challenges and cane training.  When I steered the conversation away from work and towards cane training, the counselor was the one who looked confused.  She then explained to me that the DSB mainly provides job services for people with vision disabilities, and that they don’t have funding for just cane training.  She profusely apologized for the misunderstanding, but told me that the person who scheduled my appointment should have asked me if I was looking for cane training as part of an active job search.  She also indicated she had a feeling she knows who I spoke with initially and that she will follow-up on the issue.  This was all beginning to sound too familiar.

I am a well-educated, intelligent, assertive, middle-class, fluent English speaker who cannot effectively navigate our health and government services.  I grimace at the thought of what elderly, uneducated, mentally disabled, immigrant, limited English-speaking individuals go through to obtain the proper health care and government services they need.  I know there are plenty of sick people and disenfranchised individuals that have to trudge through this confusion on a daily basis, and I honestly cannot comprehend how they do it.

Now here’s the rant I promised not to indulge in.  Considering the current economy where so many people are out of work and the job market has grown more competitive, I am surprised that Harborview and the DSB cannot find more competent people to answer their phones and schedule appointments.  I know that I have a rare eye disease that not many people are familiar with, even within the medical field, but all these individuals had to do was spend a few extra minutes on the phone with me to avoid a whole mess of confusion that cost me time and money.  Looking back, it seems that the main goal of these receptionists was to get me off the phone as soon as possible rather than responding to my actual requests.  It would have taken very little effort for them to “do better”.

My mom always encouraged me to see the positive in any situation, so here goes.  The Harborview ophthalmologist invited me to participate in a stem cell research project she is working on following my pregnancy.  Although she cannot promise any grand results, it is a rare opportunity for me to see how my actual stem cells react to various trial drugs. (they use my cells in a petri dish, so it is non-invasive) In addition, I learned a lot about DSB services that could benefit me in the future when I return to work.  Meanwhile, I am looking into other options for cane training in my state.  I’ve decided that I will ask to speak to multiple individuals before scheduling my next appointment to make sure I am being told the correct information over the phone.  Then hopefully I can avoid telling anyone to “do better”.

20121009-083556.jpgToday I was a spectator. I observed what most of us know well– life is full of hard and beautiful and interesting scenarios. We don’t usually see all of those scenarios in one day, but today I forced myself to sit back and just take them all in.

From the moms at a playdate who bonded over their painful struggles with mentally ill parents to the coming-together of neighbors and families to commemorate a historic life and place, my day couldn’t have been much fuller. Even though I have nothing to do with our neighbor’s historic home and cannot even imagine what it would be like to have parents with borderline personality disorders, I was invited in to these peoples’ stories.

If you’ve listened to many motivational talks, sermons, etc., I’m sure you’ve heard the cliched metaphor about joining in the game of life (i.e. “Are you going to sit on the sidelines and be a spectator of life, or are you going to play the game?”). The spectator role, it seems, is not the preferred one and is not what we should be aiming for. But as I was tucking in my girls tonight, thinking of all I’d witnessed today, it dawned on me how very much a part of it all I felt despite my periphery role.

And I thought about what an important role spectators play. What would a football game be without fans in the stands? And what would a child’s first piano recital be without proud parents watching? And how hollow would the world seem if every person was always in the middle of the action but no one was stopping to observe the beauty in others? Or the pain?

I think that’s why I appreciate artists so much. They stop and observe. And then I get to see all the side stories–the ones that don’t make the nightly news– in paintings and songs and poems.

Our neighbors’ home was “plaqued” today (not to be confused with a dangerous plague or vandalism– they actually had the local Historical Society present a plaque which will hang on their front porch). They had a little gathering, complete with appetizers, wine and a pound cake from a 100-year-old recipe, in which a little ceremony of sorts took place. Since their home belonged to a locally famous historian and writer, Hannah Ditzler, they had an entire scrapbook about her and even some of her distant descendants attended. The gentleman from the Heritage Society was remarking how Hannah’s detailed diaries give us a picture of what life in Naperville Illinois was like in the late 19th-century, and her detailed sketches of the home are remarkable.

Standing in this small, warm crowd of people who were simply celebrating the fact that someone took the time to observe life in Naperville in the 1800s made me pause. Even though I like to think that, with the many bloggers and journal-keepers out there today, we will have more than enough written records for future generations, I also wonder how much we take the time to observe what’s really going on around us.

Not feeling benevolent enough to observe for the world’s sake? Well, it benefits you too. Observing others’ stories takes us out of our own heads for a moment. Truthfully, I haven’t been blogging much lately because I’ve been working on more fiction writing. Both reading and writing fiction is comforting to me because it takes me out of my own world with all its little problems. I get to live vicariously through elephant trainers in the 1920s and teenage fugitives in future societies. But there was something a little more powerful– or at least more real– about being drawn in to the stories of actual people around me today. I felt like I was contributing to their story just by being there with them.

It made me think about how the next time I’m feeling insignificant sitting on the sidelines, I am a significant spectator.

It’s been almost a full month since Joy or I have posted anything.  Shame on us! It’s not that we haven’t thought about blogging, but we’ve both been a bit pre-occupied.  Also, neither of us like to post out of any sort of obligation.  We like to write when we have something worthwhile for our readers.  Today I have something worth mentioning on the blog.  I’M PREGNANT!

Perhaps you’re wondering why I am wearing a mask in this photo and why the pictures to the right look blurry.  It’s not your vision (or perhaps in some cases it is…) It’s smoke.  I live up in the mountains and we’ve had wildfires over the last 4 weeks, which has caused a tremendous amount of smoke in our county.  Between morning sickness (which I think is misleading considering the nausea often lasts the entire day – not just in the morning) and the smoke stacks, I’ve been a bit distracted. But I’m happy to report that I am now 14 weeks along and feeling so much better, and the wildfires have subsided as well.

I will have more to share in a couple of weeks following my eye appointment in Seattle along with my first day of cane training.  I need to get as much done as I can before baby number two arrives in spring!