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”.