Tip #3: Provide Opportunities For Your Child To Play Sports
Sports may not be the first word that pops into your head when thinking of extra-curricular activities for a child with vision loss. While some traditional childhood sports like baseball and soccer may not be options for children with low vision, that does not mean they want to sit on the sidelines. Continue reading “The Importance of Sports: Advice for Parenting Children Who Are Blind or Visually Impaired Tip #3”
I have a dirty little secret to share. A housekeeper cleans my home once or twice a month. And….that’s it. That’s the secret. Pretty dirty, I know.
I am not wealthy, but rather house cleaning is something I prioritize in my monthly budget. It’s not as though my house needs to be perfect. I have 2 small children (8 if you count my husband), and a dog, so a perfect house would be quite a stretch at this point in my life. Continue reading “Mr. Clean”
Spring has sprung, and that means lots of park dates with the kids. Playground conversations amongst the parents can be riveting. Yesterday’s topic of discussion was dishwashers. Some people have them. Some do not. Two of the non-dishwasher moms were lamenting this missing appliance
“Yes,” I chimed in, “That would be so hard not to have a dishwasher.”
“Well, I mean, it’s not that bad,” one of them responded in defense, “You just get used to it after awhile.”
“Yep,” piped in the other mom, “People lived for many many years without the luxury of dishwashers. It’s really not a big deal.”
“True,” I agreed, changing my stance like a crafty politician, “It would probably force me to stay on top of my dishes if I did not have one.” Continue reading “Life Without a Dishwasher”
“You’ve got to read the book I just finished,” I heard Joy telling my voicemail. This was not an uncommon message for her to leave. Recommending the latest and greatest books to each other has been happening since our “Sweet Valley Twins” days.
But what she said next sparked my interest a little more than usual.
“The author is a mom about our age who wrote a memoir about her life and she has RP just like us. She actually sounds like someone we would be friends with.”
I instantly knew she meant that we would be friends with her because of her personality, not her RP. I uploaded the book from Audible a few minutes later, and began the journey into Nicole C. Kear’s memoir “Now I See You”. Continue reading “Book Review: “Now I See You””
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”.
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!
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”
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
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.
