We like to bring you stories of our wonderful LightHouse students. In this issue, we present an interview with Robin Thiele, 72, who has been taking Access Technology training.
How has your blindness affected your life and how did you find your way to LightHouse?
My family had never heard about glaucoma. When I was 16 months old, my mother noticed that I was unable to look at bright lights in the house, and certainly not outside. I would always squint and turn my head away.
A doctor at the University of Chicago diagnosed me with glaucoma, and I had two surgeries. I received my first pair of glasses when I was five or six. They were thick coke bottle glasses with bifocals, but they allowed me to go to school and lead a reasonably active life.
But I continued to need eye care. I had a couple of retinal detachments in high school that had to be surgically treated. I always had this push/pull with treatment, because it meant I was going to be restricted in terms of my activity. As a young boy, this was very unacceptable to me. My mother tried to lay down rules for me, which I did not appreciate at all, I had resisted and rebelled. I just wanted to wash my hands of having glaucoma, but of course I couldn’t do that.
I went on to graduate college but was having more and more problems managing my glaucoma. I had surgeries with some success, but my vision kept declining slowly. It was like trying to read Ulysses; it’s a very long book, and it can take a long time to get to the end. That’s the metaphor for my vision loss. It started having a major impact on my life when I was about 61. I finally had to retire from my work as a registered nurse; I could no longer drive, and my wife was also having major cognition problems and I just really needed to be home. Unfortunately, my wife’s condition was also deteriorating about the same rate as my vision.
We decided that I would be her memory, and she would be my eyes, and that worked for a short while. But of course, that wasn’t viable long term. I threw myself into caring for my wife, but in some ways, I allowed that to keep me from thinking about my vision. But it finally deteriorated to the point where I really needed to deal with it, and I contacted a nonprofit in the East Bay.
It was good to make contact, but the support group didn’t have the structure I was looking for, and I wished for more social contact with the people in it. I became discouraged about getting help and support.
18 months ago, my brother, Gus, and I had talked about LightHouse, but I had not made any contact. It was during wintertime, I was depressed, and unfortunately my wife had to be placed into fulltime care. There was a lot going on and I wasn’t doing anything to help improve my situation at all. So finally, when I had not contacted LightHouse myself, my brother got on the phone and connected with [LightHouse Social Worker] Jeff Carlson.
Jeff gave me a call and we set things up, and I got involved in a telephone support group and this time around, it was a very good experience. There was a structure; I knew what we were going to talk about each week and really liked the people in the group.
In that support group, I learned about [the screen reader] VoiceOver on iPhone. I had never been much of a technology person, so I dug in my heels. I did not want to have my life focused around my phone. I thought, “No, I’m not going to do that.” I had acquired just enough computer skills to do email, access the Internet and to do my job, but not much else.
But now my wife could no longer do what she used to do. She used to pay the bills and take care of our finances. It was incumbent for me to take over, and it became very clear that I was on the wrong side of the digital divide.
So, everything kind of came together with that initial contact with LightHouse. A referral was made for Access Technology, and that’s how I got started with training from [Access Technology Instructor] Fernando Macias.
Could you talk about your experience working with Fernando and what you’ve been learning?
Fernando started me out with the basic VoiceOver gestures for iPhone. I was quite impressed with Fernando’s youth, but at first, I wasn’t sure how this was going to work out. He’s 30 and I’m 72, but it’s worked out so well. Fernando is extremely educated, sensitive and naturally curious.
One of the things I value most about Fernando is that he’s picked up on my tendency to be self-critical. When I get frustrated and think I’m not doing something right, he slows me down and points out that I can’t break anything on that software, and that I can start a process from scratch if I mess up. He’s not only been my VoiceOver instructor, but also been a mentor about blindness. I never really had anyone to really talk with about blindness and I learned a lot from listening to him. He’s very focused, doesn’t get frustrated and stays attentive to solving a problem. I’ve tried to emulate that, to stay focused on solving a problem and being able to walk away when I’m frustrated and coming back in an improved state of mind.
How has learning this technology improved your independence as a blind person?
I’m able to do email now in a way that I wasn’t able to before, and I’ve been able to master using the Uber and Lyft apps. Now I can get out and visit my wife without having to rely on an unreliable taxi. This has been a major improvement in my life.
Learning technology is like learning a new language. It’s not something to be avoided or to be afraid of. I’m slowly starting to find myself open to trying new things and not just immediately saying, “No.”
Do you have an interest in exploring other areas of blindness skills training?
I’m signed up for Changing Vision Changing Life. It’s a survey of the different types of training LightHouse offers like technology, cooking, independent living skills and orientation & mobility. When Fernando first told me about it, I could feel myself resisting, but then Fernando talked about the program a bit more and I said, “Absolutely. This is what I must do.” I’m really looking forward to that for the skills that will be presented, but also for the social contact with other people. I think, having contact with the common denominator around vision loss is a great way to get to know people and for people to open up.
Interested in Access Technology training at LightHouse? Get started by emailing info@old.lighthouse-sf.org or calling 415-431-1481.
Whether we are working with the families of our Little Learners at a home visit, or our senior students in the Changing Vision Changing Life program, LightHouse strives for mission moments—those pivotal moments in a student’s success, clarity, or independence. For LightHouse student Anusha, that moment happened during an orientation and mobility lesson with LightHouse O&M instructor, Katt Jones.
