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”.

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10 thoughts on “Do Better

  1. Thanks for your post today. It was an odd coincidence of sorts as only hours ago I was freed from a IEP (Individual Education Plan) meeting for my son (7 yrs old) who I have decided to keep mainstreamed with RP. Although I cannot possibly blame the teacher, special ed. instructor, IEP coordinator, principal or both SASED (School Association for Special Education in DuPage County, IL) Itinerants (1 mobility, 1 classroom) for their lack of understanding Rod/Cone Dystrophy, I sure wish someone else, anyone else in my surrounding neighborhood, could help guide me in making the right decisions for my son educationally. I have yet to leave one of these meetings without having a good cry in the car on the way home. Todays topic was “is it a cognitive delay or a visual impairment for his spacial learning deficit?” with a little “we feel the reading program will benefit him this year”, followed by the official signing off on mobility training with a cane. I read both you and your sister’s posts not only to gain knowledge and understanding of RP in first person, but because of your continued optomism. On most days I am a ‘tough get going’ kind of gal. Just not on the days when I have to advocate and negotiate my beautiful child’s future. Thanks again for your blog. Lorie

    • It’s ironic that I read both my sister’s post and your comment here, Lorie, as I was just telling my newly-assigned case worker from the Bureau of Blind Services for DuPage County about my experiences with vision itinerants growing up, and how I never felt like they even understood what RP was. And this caseworker (also an itinerant) was the first public service employee who I feel like “gets it”. It was such a relief, but at the same time makes me even more frustrated that there can’t be more case workers like her.

      Perhaps I am just in a feisty mood right now, or maybe I’ve had far too many incidents like the one described in this post, but I feel like the actual agencies who employ these people should hear what you wrote (maybe in a letter?), in hopes that they will “do better”.

      And Lorie, your attitude and dedication to your son’s education and future is so apparent. If you ever have any specific questions, feel free to e-mail or even call to discuss. Having grown up with an IEP in DuPage county and also having been a teacher in the area, I definitely have thoughts and opinions to share. 🙂

  2. every time i try to navigate the health care system i wonder how anyone less educated and privileged is able to fare considering how rarely it runs according to any sensible standard. and there is no way to fix what is wrong because it is never “something they do”. pretty disappointing. and frustrating knowing you have to start again for the next appointment. i get nightmares anticipating appointments coming.

    • Michelle, It’s nice to know I’m not alone in my frustration. But sad that so many people are experiencing the same confusion when it comes to the health system and government agencies.

      Best of luck to you! And thanks for reading.
      Jenelle

  3. Joy, thank you for your kind words and offer of help. I may take you up on it someday. I think it is time to reassess his school placement. I just wonder wish I had a magic ball. I wonder, was your IEP just vision in a mainstream school and if so, would you have changed that if you could go back? I have an option to switch him to a school that specifically readies visually impaired kids for mainstreaming. Preschool and kindergarten he excelled at our local public school. Now in 1st grade with smaller print, higher expectations, common core curriculum changes and faster paced teaching, I wonder if I over estimated his adaptable abilities? Thoughts?

    • Hi Lorie. I am going to pipe in here because I have pretty vivid memories of first grade and the “help” I received. (See my earlier post “Use Your Eyes” from 1st grade memories) I recall being placed in the lowest reading group even though I was a strong reader. The teacher, itinerant, and reading specialist all underestimated my abilities because of RP. But luckily I had teachers in other grades who didn’t view RP as a limitation and by the time I was in high school, I was in all advanced English classes. I don’t know if this is the case with your son because every situation is different, but I would encourage you to continue to follow your “Mama Instincts” that we moms have when it comes to our children. If he excelled in preschool and kindergarten, it seems strange that he would take such a dip in 1st grade. The school that readies VIP students for mainstream sounds interesting and would be worth looking into. When I think about whether that would have been beneficial for me, it’s hard for me to decide one way or the other. Looking back, I think there are certainly adjustments that would have made life easier for me in school, but I also think I learned how to persevere and adjust to new situations on my own. The friendships I developed in public school remain strong to this day and I ended up marrying my high school sweetheart, and I wouldn’t change that for anything in the world.

      I hope this reply hasn’t caused more confusion for you, Lorie. It sounds like you are an amazing advocate for your son, and you are really taking the time to weigh all your options. Please let me know if you have more questions or want me to clarify anything.

      Jenelle

      • Janelle, thanks so much for your time. Yes, useful information for sure. I will go back to read your 1st grade post as I don’t remember it. Thought I read them all. I am waiting for the reading specialist evaluation and meanwhile, it won’t hurt to look into the other facility as well. Thanks again!

          • Oh my yes! I definately remember that post. It broke my heart. To read it back when I found this blog and to re-read it now gives me two different perspectives on that story. Then I was just sad for you and sad for my son’s future. Now to read it, I feel terrible that you had that teacher and that ever-lasting memory, but I feel ready to take those morons on as well. One of my goals is to get Christopher to feel completely comfortable telling me whatever he needs to. He is a quiet kid. This will be quite a task. 🙂 Thanks again for your insight.

  4. Jenelle and Lorie,
    I am so thankful for your conversation on this blog comment stream. I have found encouragement in reading your words. My husband and I just met last week with the local school system regarding our seven year old boys’ RP (they are twins) and a mobility school in Kalamazoo, Michigan. In order to talk to the mobility school, we must have a case with our area school district. Since we homeschool, we don’t have this so now we actually have to enroll the boys to gain access to this….While hoop-jumping gets discouraging, I do want what is best for Marcus and Lucas, and I must explore all options. This is a very timely piece.

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